Journal History
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Monday, May 16, 2011 9:20 AM CDT
Please keep the family of my dear friend Ali in your thoughts and prayers. She earned her wings on Saturday and she will be sorely missed by all who knew and loved her. You can visit her caringbridge website at caringbridge.org/visit/alicecaceres. Leukemia SUCKS! R.I.P. Ali and don't forget your promise to come barreling thru with my girls, mom and dad the next time I get to see John Edwards :o) Love and miss you so much xoxoxoxxooo
Thursday, September 30, 2010 10:38 AM CDT
MOVIE UPDATE!!!! Here is the website for Two Meter Studios who is producing THE SHOEBOX!!! Please go to www.twometer.com where you can pre-purchase a copy of the dvd of THE SHOEBOX from this website. It will be updated with additional information regarding the premiere and any other information regarding the film as it comes out. It's still a work in progress, but they're hoping for a November release...... Sounds like a perfect Christmas gift- so stock up!!!!
Good Night May.... Mommy Loves You, Daddy Loves you, Tommy Lee Loves You..... EVERYBODY Loves Meghan!!!!
Good Night Tay..... wish ya could've stayed awhile.
Carol
(Mom2Angelz)
Wednesday, August 4, 2010 3:55 PM CDT
WE OFFICIALLY HAVE A MOVIE TRAILER!!!!!! I'll post link on facebook!!!! Stay tuned for details......SOOOOO EXCITED
Friday, July 23, 2010 8:33 AM CDT
HAPPY 10TH BIRTHDAY MEGHAN!
Mommy Loves You, Daddy Loves You, Tommy Lee Loves You..... EVERYBODY LOVES MEGHAN!
Tuesday, March 2, 2010 2:16 PM CST
May 28, 2010:
UPDATE: Well, really there is no update..... The Shoebox movie is still being worked on, editing, reshoots, audio, video, more editing, more editing and did I mention more editing????? We have all gotten dvd's of the proposed trailers and clips of some of the scenes and have added our input to what we have so far. We're all anxious but want this to come out perfect so we wait, (some of us tapping our fingers impatiently on the keyboard whining about how long it's taking- no names mentioned).... and then comes the slew of emails trying desperately to pacify a certain "someone" that is sometimes way too impatient.......again, no names mentioned...... So, Billy, KJack, Raz, Alan and I send our emails behind the scenes ranting and raving (well, some of "us" rant and rave....) others attempt to reign us back in and try to get us to understand that movie making is not a quick thing especially if you want to get it right, which we all agree we really want this one right. We've come way too far. So, here we all are waiting right along with ya stalkers. Hopefully we can put a trailer up on the website soon. In the interim, tap your fingers along with us and pray that our Angels are making sure their movie is exactly how we all envision. As for me..... hoping to plan the premiere party sooooooooon.
March 2, 2010:
Been a long time stalkers……… Let’s see………. February 7 stunk. Got thru it a little worse for the wear, but we’re still standing. Meggie would be turning 10 this July. Can’t even believe that one!
Guess I’ll try to sum up December’s adventure to Ironton since I have been remiss……..
To begin with, Tommy, me and T3 were flown up to Ohio on Friday, December 4th. Our original plan was that my sister Laurie, her son Rian and my boyfriend Mike would drive up to Ohio to join us for the filming. Well, one thing led to another, driving conditions unfit for a Floridian to drive in, expenses, and just plain not having a real plan, my sister decided Wednesday before the trip that it was probably not a good idea to drive all that way in the weather for a very quick turnaround. Basically, they would have left Friday morning, gotten to Ohio (weather permitting) late Friday evening, spend all day Saturday filming, and then turn around early Sunday morning and drive back to Florida making it home sometime late (again, weather permitting). So Mike decided to fly up Friday and was able to get tickets for a Friday morning departure. My sister, after many, many telephone calls waffling back and forth and basically freaking out that she was going to miss a once in a lifetime memory decided that she could not miss this for Meghan and had to come up no matter what. So she books a last minute flight Friday and planned to arrive before midnight Friday night. Tommy, T3 and I had our travel plans set and we arrived in Huntington, West Virginia Friday night around 9pm. We were scheduled to meet at a local sports bar in Ironton (or was it Kentucky?????) I’m unsure because one minute you’re in Ohio, one minute over the river into Kentucky and another in West Virginia…… so frankly, I’m not sure what state we were in Friday night. I know what state we ended up in……….a state of excitement at what the weekend would bring.
Anyway, we get to the sports bar and the place is packed with Shane’s fanily and friends, and some of the cast and crew for The Shoebox. The remaining crew and some of the actors were scheduled to come in the next morning for the filming. It was so surreal meeting all of these people I had only met online, yet who I had become to love as family. There were tons of hugs and tears and we all had such a fun time singing karoake (well, some of “us” lip-synced) and just getting to know each other. Some of the more daring kept the party going while some of us headed back to the hotel for some much needed rest. The anticipation of what Saturday would bring had exhausted most of us and sleep was a necessity. I may skip around here because there are things I want/need to interject because our Angels were especially crafty this weekend making sure we knew who was in charge. So, backtrack number one, before we went to the sports bar, we stopped at the hotel to check in. While we were leaving we ran into some of the child actors and their moms. Somehow we got into the conversation about signs from Meghan and one of the mom’s said, I bet she makes it snow. Well, just so ya know, it was not forcasted to snow, and we had even had the conversation with our cab driver about the possibility of it snowing and he said “no, not this far south and this early in the season”….. so I wake up to the sound of my phone ringing Saturday morning (early) and Billy is on the other end of the phone saying “did ya know it’s snowing???” I jumped out of bed, ran to the window and sure enough it was SNOWING!!!!!! T3 had slept in my sister’s room with her and Rian so I go running down the hall and start banging on her door. The door to the room next door opens and I remember (a) it’s early; (b) I’m being loud banging on this door and (c) I’m in my PAJAMAS!!!!! ACK!!!!! So finally, my sister’s door opens and I start jumping up and down screaming IT’S SNOWING!!!!!!…… The boys about jumped out of their skins clamboring to the window to look out and see the snow. Now a lot of you are probably saying, ok so there’s snow……… well, this was the FIRST time I’ve seen snow (unless you count the flurries in Orlando in the 80’s)…… so we all get dressed and head out into the frozen tundra of Ohio in the shoulder-deep, waist-deep, ok….. not even tip of your pinky finger-deep snow to Shane’s grandmother’s house for breakfast. But it was S-N-O-W and it was C-O-L-D!!!! The boys stay outside and play in the snow, I’m over the cold by that time and head inside where it’s warm. The boys try to slide down an embankment using garbage bags as a sled, but apparently they needed more than tip of your pinky-finger deep snow for that. I got my first sighting of a thing you use to scrape the snow off your windshield…….I don’t think you can buy those in Florida……. I did manage to make “a” snowball. The boys managed to make and throw lots of snowballs. Then came the part I didn’t realize…… you get WET when you’re in snow…. Not just WET, but SOAKING WET (so I try to roll up T3’s jeans, take his shoes and socks off, and pray he doesn’t catch “limonia” as he would say. We finish breakfast and start to make plans for the filming at the high school later that day.
Jumping back in time again here…….. As I was packing prior to our trip, I gather up all the remaining yellow “Everybody Loves Meghan” shirts I had and begin packing them up because I am dead-set on using them in the film. Guess I should have consulted the director/producer/camera people, etc, but I figured I’d do it and beg forgiveness later….. so I’m packing these shirts and I end up filling one entire piece of luggage with “Everybody Loves Meghan” shirts. So, my phone beeps as I’m packing, and I see Ann is writing Billy on Facebook telling him she wishes she could be there and she tells him to look for a sign from Gregory. “It’ll be yellow” she says……… So I start laughing and post this comment: “yellow….. holy sh*t” (as I finish packing about 40 yellow t-shirts). I didn’t tell a soul about the shirts and figure I definitely have the Angel’s blessing behind me on this one, so off we go, yellow shirts and all.
So we all meet at Ironton High School and begin the process of waiting….. cause there’s a lot of waiting when you’re filming a movie…. Camera angles, actors, lights, extras….. there’s so much involved and then you all have to be on the same page…… not an easy feat. As we’re sitting on the bleachers in the stands, a couple of people come and sit down in front of us. There’s some whispering and then someone says to me “that’s Kimberly Spak- she plays you in the movie”. So I reach down and tap her on the shoulder and say “so nice to meet me”……. She figured it out and started laughing. There’s a picture of her and I in the photo section. Lot’s of similarities between the two of us. Anyway, afterwards while all of this is going on, some of us are being interviewed by local media and there’s just a general bustling going on in the gym. That is until the director Joe yells “QUIET”. So after some direction to the extras, they begin filming. They had pulled T3 in and put him right next to the lead actors and he has a pretty prominent extra part if it doesn’t get left on the cutting room floor :o) I’ve been kept updated on the script all throughout the process so I pretty much knew which scenes we were doing. Well at one point, one of the lead actresses improvises her lines and makes a funny joke. So everyone laughs. So I lean over to Mike and tell him that KJack wrote that, it was not improvised. (This will mean something later when I backtrack again-lol). Anyway, after those scenes are completed and we begin discussing the logistics of taking everyone out in 20 degree weather to shoot a scene which would be in Florida, I run and start handing out ELM shirts to anyone and everyone I can find. Everyone begins to put on these bright yellow shirts and Billy’s girlfriend turns to him and says “there’s your yellow sign”. I think he almost fainted. You should have seen the look on Joe (the Producer’s face) when he begins to see this sea of yellow shirts………I guess he may hove gotten me back because he ends up calling me up to address the crowd and tell them what the Light the Night scene is about and why we are all here. I think I cracked midway thru, but if I remember correctly, I finished with some dignity remaining and not ALL of my mascara on my cheeks. After I speak and during the transition, Emily who is one of the child actors and plays one of Billy’s daughters, gets up, and with Alan on guitar, sings The Shoebox. If anyone still had a dry eye in the house, they didn’t anymore. I’m pretty sure you can find a clip of her singing the song that night on youtube. I think if you search Emily singing The Shoebox or something like that you will find it. If that doesn’t work, email me and let me know and I’ll send you the link.
After that, we all grab balloons and begin heading outside into the freezing night air. It was right about this time that me, Alan, Billy, KJack and Raz got to be alone for the first (and only) time so we enjoyed a group hug and got a couple of pictures. I think that was the moment we all needed.
So, we all take our seats in the bleachers outside on the football field. We have our Everybody Loves Meghan banner in front of our team and we wait for the actor playing Alan to get up and sing The Shoebox. So this guy is up on the stage in front of us and Alan is just to the crowd’s left and it gets silent as Alan begins to sing with the actor lip-syncing. It was the most beautiful, yet heartwrenching moment we had all weekend. He was almost done with the first take when somewhere in the middle of the song Alan made the mistake of looking over at me sitting in the front row, listening to him sing and sobbing. His voice got shaky and he could not continue singing. So from two rows behind me I hear someone begin to pick up the lyrics of the song. I turn around and I see KJack singing. Then a couple more joined in and Alan jumped back in and finished. It was so sad, but so amazingly beautiful. There were so many tears by that point I don’t know how our faces didn’t freeze. That moment can never be duplicated, nor should it be. It was something the five of us dreamt of. This moment, our song being sung, our story being told. And there it was, raw…….out there for everyone to see. And none of us were embarrassed by our feelings. Our hearts on our sleeves and surrounded by a community that felt what we were all feeling. That perfect moment.
Time for the balloon release………… Leading the crowd, banner in hand, me, T3, my sister and the actress Carol head on to the field and begin gathering. On cue, we release our balloons and off they go into the cold night sky. And there we all go running back to the warmth of the gym. A short time later, Alan, Raz, Billy, KJack and I are asked to go outside and release more balloons for some close-up shots of the balloons heading towards the evening sky. We are all positioned and release the bags of balloons in a zig-zag kind of fashion so the balloons look like they’re coming from all different directions. The last one to open and release his bag of balloons is Alan. As his balloons begin the journey towards Meghan’s outstretched arms, one lone balloon hangs back in the bag as if to say, “I’m special and need to go out on my own”. And so it did. All by itself it danced and skipped happily skyward toward my Meghan. Alan smiled and called out after it….. “wait for meeeeee”. I think I got whiplash as my head spun around and told him “you know that’s Meghan”. He said “what?” And I began the story of Meghan, Tommy Lee and Rian on her last Halloween running after the boys giggling yelling “wait for meeeeeeeeeeee”. I told him that my sister, brother and I always say that because of Meghan. I thought I freaked him out, but found out he totally got it. He, along with the rest of them understand that these Angels are making themselves known the best way they can. Here’s a quick list of their antics…….
(a) The snow falling Saturday morning when there was no snow forcasted
(b) 4111 as the house number Billy’s house in the movie.
(c) Yellow shirts for Gregory
(d) The littlest balloon dancing her way up to the sky shouting “wait for meeeeeeee”
(e) The improvisation in the movie by the actress shooting the gym scene…… well, I knew the line she spoke. In fact, each time she changed it up a little bit, I knew each of the lines as if I had read them over and over again. Funny thing is, although I told Mike KJack wrote those lines, we later found out at dinner, he never wrote those lines and she was improvising right there.
(f) The hospital scenes were supposed to be shot the weekend of February 7th which of course was Meghan’s 7th Angelversary in Heaven. None of us had the nerve to tell the producer Joe about that date as he would probably not have put two and two together at the time since he would have a ton of other things on his mind. We figured he would figure it out sooner or later. Meghan on the other hand, had different ideas for that weekend so she arranged a snowstorm to upset the filming. My guess is MeeMaw wanted to watch the SuperBowl and Meghan wanted to snuggle in and watch it with her and MaNeena who no doubt was rooting for the Saints!
(g) I had proposed having the premiere of the movie at The Enzian in Orlando since they do a lot with independent films and film festivals, etc. A couple of weeks after I had mentioned The Enzian, I get an email from KJack saying one of the child actresses’ grandfather is on the board at The Enzian and we are almost guaranteed use of the facility for the movie.
Then there’s Alexandria’s mom saying “was that Alexandria’s picture on the Light the Night banner? Ummmmmmm yep- she was right there with us. Not to mention that originally the actress they had to play Meghan in the movie was five years old. I was never thrilled about a five year old playing Meghan, because Meghan was never five here on earth, so when I was told they found a bi-racial two and a half year old little girl to play Meghan I was ecstatic. Then came word that the original girl would be playing a “hospital friend” of Meghan’s. So I emailed Cassidy’s mom Chris and asked if we could use Cassidy’s name as Meghan’s friend. Of course, she said yes, and those scenes were shot this past weekend.
So I think I’ve filled you in as best as I could. It gets more and more exciting as things progress. Still hoping and praying for a premiere at The Enzian in Orlando. If it happens, we will do it BIG!!!!! Hope to see you there!
Good Night May….. Mommy Loves You….. Daddy Loves You…. Tommy Lee Loves You…….. EVERYBODY Loves Meghan!!!!
Good Night Tay…… wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Monday, November 2, 2009 10:18 AM CST
January 19, 2010
I added a picture in the photos section of me and Kimberly Spak who plays me in the movie The Shoebox...... Crazy similarities...... So much to write about that weekend...... the movie is coming along great. I promise I will update with how our trip and the filming went....... Needless to say, so many people were speechless at our mischievous Angels and how each and every one of them let it be known they were there and watching us all. Meghan certainly was out in full force.... I think she might have scared some people :o) Can't wait to tell you about the movie and how it is progressing....... stay tuned...... they're getting ready to film some of the middle portions of the movie and then it gets pieced all togeher and put into some semblance of order and from what we saw......it's gonna be unbelievable!!!!!
November 18, 2009
Another UPDATE..... I'm officially published :o)
‘The Shoebox’ shows music helps with grief
Published Wednesday, November 18, 2009
Shane Jones was my “first angel” and although I never had the honor to meet him, I will never forget him or his parents.
I’m not sure how our worlds collided, or even why, but what I do know is that because of Shane and his incredible spirit, I have met many, many special friends since being drawn into a world of childhood cancer that no parent should ever have to be a part of.
It all started one day with the words, “your child has cancer.”
Those are the words no parent ever wants to hear, but yet, day after day, more and more children are being diagnosed with cancer and within the blink of an eye, life changes.
I’m sure Shane’s parents experienced the same shock and disbelief I did when my daughter Meghan was diagnosed.
I was certain they had the wrong child or that the lab had made a very huge mistake. Unfortunately, they did not have the wrong child, and the lab did not make that mistake.
After months of treatment with chemotherapy, radiation and as a last ditch effort, a cord blood transplant, Meghan lost her life to her cancer.
It was only four short months since Shane had lost his battle. To say my family was shattered does not do our loss justice.
We are left now with memories, pictures and videos of a little girl who could charm anyone with her big brown eyes, her silly giggle and her beautiful smile.
If you met her, you loved her. Instantly. She was just that kind of child.
A month or so after Meghan earned her wings, a CD arrived in the mail. Inside this manila envelope, carefully wrapped in bubble-wrap was a disk with one lone song on it. In marker, the title “The Shoebox” was written.
I had heard bits and pieces about a song being written for Meghan but had no idea what was going on behind the scenes.
I found out later that three complete strangers had come together with love in their heart for my little girl to write a song that just hearing the opening bars, still makes my eyes well with tears and puts a lump in my throat.
The amazing lyrics written by Billy Bruce, Robert Gustafson and Alan Hamilton are written as if each of these men had been in that room the morning of Feb. 7, 2003, when my daughter took her last breath.
As my friendship grew with the three strangers from Ohio, Washington State and D.C., I was asked my thoughts about having a screenplay written about “The Shoebox.”
I was scared, but humbled to think that someone would want to make a movie to honor Meghan and Shane and the rest of the brave children who battle cancer on a daily basis.
Throughout the process there was a lot of laughter and a lot of tears while each of us came to grips with the magnitude of what we were really trying to do.
Our little song has culminated into a family-friendly movie which I hope will show the world how the power of music can help a family through their grief as well as inspire three strangers to leave their footprints on a film honoring the circle of life, friendship, grief and one little boy’s connection with a little girl far away in distance, but very close in heart.
Carolyn Mack is a Florida resident who lost her daughter Meghan to a battle with cancer.
November 17, 2009
LATEST UPDATE.......... THE SHOEBOX MOVIE
The Shoebox: Movie script changed to ease emotions
By Staff Report | The Tribune
Published Friday, November 13, 2009
The opening scene is changing, but the show goes on.
Two Meter Films, a Washington, D.C., based production company, will arrive in Ironton on Dec. 5 to shoot the opening and closing scenes of the movie “The Shoebox.”
The movie is an adaptation of a true story based on three complete strangers who combine their talents on a songwriting Web site to pen a song in honor of a cancer-stricken little girl none of them will ever meet.
The script is also linked to an Ironton teenager, Shane Jones, who passed away at the hands of leukemia in 2002.
Originally, the script began by recreating Jones’ funeral in the Ironton High School gymnasium.
According to Two Meter Films representative and “The Shoebox” author Bob “KJack” Gustafson, and contributing writer, Ironton-area resident Billy Bruce, that scene has been swept to the cutting room floor.
“That scene, the funeral scene, is an extremely powerful opening to this story,” Gustafson said. “It shows the connection between Shane, Meghan and the rest of us who were taken in by the whole thing.”
“If we shot that scene anywhere else, maybe it wouldn’t be a concern. But, it’s more than apparent that this particular scene doesn’t need to be shot in Ironton. And we want to shoot in Ironton because that’s where this all started.”
Bruce said he was thrilled that Two Meter Films chose to film the most pivotal scenes of the movie in Ironton after spending all summer filming in the Washington D.C. and Nashville, Tennessee areas.
“When they called to tell me their plan, I said, ‘bring it on. That sounds perfect,’” Bruce said. “I couldn’t wait to start telling people about it.”
The first people he called were Shane’s parents, Shawn and Patty Jones, who seemed “just as in awe as I was when I told them the news,” Bruce recalled.
Soon, however, the reality of that first scene began to stir emotions. “I asked Shawn and Patty several times if this was OK with them,” Bruce said. “Every time, they told me they backed us 100 percent.”
“What I failed to do was ask the right questions,” he continued. “Finally, it dawned on me to do just that.”
After Patty sent him an e-mail explaining that she was in favor of the movie, but wasn’t ready to participate in the actual filming, Bruce made a call to Shawn.
“We kind of skipped around about that scene and I finally said, ‘Shawn, would it make you two more comfortable if we changed it to something else?’”
After a long silence, Bruce heard the word that changed everything: “Yes.”
“Billy called me and hem-hawed around a little and then said, ‘We need to change the opening scene,’” Gustafson said. “I told him that wouldn’t be a problem and we kind of reworked it right there on the phone.”
As it stands now, the reworked opening scene will be a recreation of a fundraiser rally that occurred at Sta-Tan pool while Shane was still alive in Columbus Children’s Hospital.
For the movie, however, the fundraiser scene will occur at IHS.
“That scene works just as well,” Gustafson said. “We definitely want Shawn and Patty to be able to watch this movie.”
The other scene to be filmed that day, a Light the Night ceremony, will take place once the opening scene is shot.
Gustafson and Bruce both said that many volunteers will be needed to give the scenes, particularly the Light the Night scene, a sense of reality.
Gustafson also mentioned that The Shoebox is being endorsed by a prominent Website by the name of Caring Bridge (www.caringbridge.org).
“This is a national organization that reaches out to hundreds of thousands of families with sick children every day,” he said, adding that Caring Bridge has vowed to promote the movie on its Website.
“I really believe this movie is going to reach a lot of people.”
For more information about “The Shoebox” movie, contact Bruce at hollandkat3@aol.com.
November 2, 2009
UPDATE.....
Here is the first news article that is running in today's Ironton Tribune Newspaper about The Shoebox!!!!!!!
Calling all extras! Movie shoot heads to town
By Staff Report | The Tribune
Published Tuesday, November 3, 2009
This story started with a little girl that brought three strangers together and may culminate with bringing an entire community together to remember a fallen hero of their own.
Two-Meter Films, a production company from Washington, D.C., will be in Ironton on Dec. 5 to shoot the opening and ending scenes of a movie script and is hoping to have active participation from the community.
The movie is an adaptation of a true story based on three complete strangers who combine their talents on a songwriting Web site to pen a song in honor of a cancer-stricken little girl none of them will ever meet.
Ironton-area resident Billy Bruce knows the story well — because he was one of those three strangers.
In October 2002, 13-year-old Shane Jones took Ironton to its knees. His struggle and ultimate death at the hands of leukemia was well-documented and known to most everyone in our community.
Prior to his passing, his mother, Patty, was able to keep the community posted about Shane’s condition at Cincinnati Children’s Hospital via a Web site: Caringbridge.org. Through that very same Web site, she met a family from Florida with a sick 2-year-old little girl named Meghan Mack.
Patty asked those who were following Shane to offer prayers and encouragement to the Mack family.
“Personally, I fell in love with Meghan. Her story, written so eloquently by her mother, Carol, further endeared the gorgeous young child to my heart,” Bruce said. “She was only two years younger than my youngest daughter, Holly, which forced me to take inventory of what was really important in life.”
A few months later, this little girl joined Shane by earning her angel wings in Heaven, Bruce recounted.
“I remember the day vividly; Friday, Feb. 7th, 2003. Holly, who was four at the time, came to my side as I sat bawling in front of my computer screen, staring at a picture of Meghan. She took her thumb out of her mouth and asked, ‘What’s wrong, daddy?,’” Bruce said. “I hugged my little angel as though I would never see her again. I’ll never forget that day.”
Later that evening, Bruce remembered an e-mail he had seen about a little girl who wrapped a large empty box with expensive gift paper for her father. After he opened his present, the father yelled at her for wasting the paper on an empty box. She replied, “It’s not empty. I filled it up with kisses.”
So, using that premise, Bruce wrote a song lyric, posted it on a Yahoo! songwriting Web site and begged somebody, anybody, to help him put it to music.
Two members of a writing group fell in love with the lyric, as well as the entire story leading up to it, and pitched in to make an actual song. One member, Bob “KJack” Gustafson, lived in Washington, D.C. The other, Alan Hamilton, lives across the map in the state of Washington.
The trio obtained the copyright to this song, entitled “The Shoebox,” and signed all rights over to Meghan’s family, who continue to play it every year in Florida at a cancer fundraiser called Light the Night.
Years later, in early 2008, “KJack” sent Bruce a screenplay he had written. Bruce thought it was fabulous. Shortly after reading it, Bruce e-mailed him an idea: Let’s write a screenplay about three strangers doing something special for a family none have ever met … The Shoebox Story.
And, with “KJack” guiding the ship, that’s what they did.
Soon, that story will be told on film but the directors will need the community’s help.
Since this story began with Shane Jones, the opening scene starts with him. Two-Meter Films will be re-creating Shane’s massive funeral scene in the Ironton High School gymnasium and will need many people in the bleachers for the shoot.
Also, at least a thousand volunteers will be needed to film a Light the Night scene for the film’s finale.
More reminders about the filming will be printed in future editions of The Tribune.
Since Bruce has spent the past few months telling the group how close-knit the community is, he says he shares their hope for a good turnout.
For now, mark your calendar for Saturday, Dec. 5, at the Ironton High School gymnasium. Tentatively, the hours will be from 4-8 pm.
“There’s no way to tell where this film will go or who it will touch,” Bruce said. “But let’s make certain that, wherever it ends up, it has Ironton pride stamped all over it.”
---------------------------------------
November 2, 2009
The Shoebox Movie is moving along and hopefully I’ll be able to give info on the website soon. Tommy, T3 and I are scheduled to fly up to Ironton, Ohio the weekend of December 5th to film the opening scene which is Shane’s funeral as well as the finale which will be a Light the Night kind of event. I can’t wait although I am a little nervous because I can only imagine how emotional this will all be when I’m in the thick of things…..
Meghan as usual is letting her presence be known during the filming. Last week I was browsing thru pictures taken during the filming and something caught my eye. The house they are using for Billy’s house in Ohio just “happens” to be house number 4111 which is the exact house number I grew up in Miami. Meghan and her numbers….. My heart started pounding and I emailed my brother and sister the picture. Of course they knew exactly who did that little piece of work. The people working on the film of course would have NO idea what our house number in Miami was. If the filmmakers were trying to do a subliminal thing they could have made the house number 723…….. but nooooooooo, Meghan wanted to run the show and I’m sure my mom had a hand in it as well because my mom would know that putting that house number (4111) in the movie would let us know definitively that they were here with us. I’ve always mentioned Meghan and her numbers, and it seems to me that every time she wants to let me know she is around, the number 23 comes up, or 723, etc……. so being the sneaky little girl that she is, and my mom probably loving the fact that no one on this planet would ever get the 4111 reference, they came up with that one.
I’m sure there are a bunch of skeptics out there who think these numbers are a coincidence, and you can believe that all you want………..but I bet you’re thinking of playing 23 as a lotto number now aren’t you???????
I’ll post more info soon (I hope). I’ve seen the News Release for the Ironton paper announcing the filming and asking for extras to come out and hopefully Billy will let me reprint it here (since I have no idea how to post links)…… also, caringbridge will be posting info about the movie and linking it to their site once things are finalized. We’re all crossing our fingers because there is a chance we can do some sort of premiere here at the Enzian (hopefully)……… crazy coincidental things have happened with people knowing people etc that we may well be able to have some sort of event here locally premiering the film….. so cross your fingers and I’ll update soon……….
Good Night May…… Mommy Loves You…… Daddy Loves You……. Tommy Lee Loves You…… EVERYBODY LOVES MEGHAN!!!!
Good Night Tay….. Wish ya could’ve stayed awhile……
Carol
Mom2Angelz
Sunday, August 23, 2009 8:38 AM CDT
Just a quick update on the filming of The Shoebox……… it’s coming along unbelievably fast and the actors and crew have gotten to take this weekend off because they were (knock on wood), ahead of schedule! They plan on getting together and going over what has been filmed already and resume shooting I guess this week.
I’ve hinted about the website for the movie….. I’ve seen it and it’s AMAZING! Hopefully I will be allowed to put the link up soon (or pull a Billy and just put it out here and let them yell at me later-lol)…….Also, because we all believe Meghan is masterminding this whole project, Caringbridge has graciously allowed us the use of their website and name and will appear in the movie because of course…. That’s how this whole thing began! If it were not for Caringbridge, there would not be a Meghan’s Journey, I would never have found my first Angel Shane, and Billy would not have been sucked in to the story of the sweetest little froggy voiced, brown eyed girl who apparently turned him into the biggest softie in the world. So for all of us who have had the unfortunate need for this website, please consider a donation to Caringbridge in our honor. If you notice at the top of the page there is a place for donations.
I’ll hopefully be able to put the link up soon…….stay tuned…… great things are happening with The Shoebox!!!!
Good Night May….. Mommy Loves You….. Daddy Loves You….. Tommy Lee Loves You….. EVERYBODY LOVES MEGHAN!!
Good Night Tay…. Wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Thursday, July 16, 2009 12:14 AM CDT
July 23rd is looming in my sights and I am desperately trying to get past that date as quickly as possible. If I could leapfrog right over that date, I would. It’s so weird because every single day is hard and sometimes downright miserable and if you let your mind go “there”, it can be very, very bad, so you try to muddle thru and think about other things and convince yourself to dig your heels in and stay as far away from the valley of grief as you can.
But dates like these are so surreal to me because it’s almost as if I feel like I have this bubble over my head with the date on it and everywhere I go, I’m walking around with the number 23 looming over my head. No one else can see it, but I can’t get away from it. The best way to describe the bubble is to imagine having weights on your shoulders and walking around with this feeling of physical heaviness that you can’t shake. It’s an uncomfortable feeling but one that is foreseen by us mothers who have lost our children. We know the weights are coming. We know because as the date gets nearer, we begin to be filled with dread, fear, anger, pain and a sorrow so overwhelming you feel as if it takes every ounce of energy to breathe. Your shoulders droop a little lower from the imaginary, yet real weight of all that has happened to bring you to this place. If you are one of the lucky ones and are not in our sad group, try to imagine a heaviness and an ache in your heart so great that you can’t think of anything else but that. Imagine you can’t turn it off. Your entire body is extra sensitive and everything is magnified a thousandfold. Any little thing gets under your skin and you can cry at the drop of a hat. It’s an emotional rollercoaster and you’re on a direct track to some of the lowest lows you have ever felt. It’s weird but the build-up to the date, whether it be a birthday, an Angelversary, a diagnosis date….. anything that would make one day more significant than another does it to you. It is an unexplainable feeling. The loss is so great and can bring you back to that smell, that sound, that visual, even six years later. I truly believe I will experience these emotions the rest of my life because I know for a fact that the pain does not get any better. Sometimes it may feel duller than other times, and sometimes you can force it back inside where you think it belongs but just like an old knife in your drawer, if you touch it, or take it out of the drawer it can still cut deep and make you bleed.
So, I wait knowing Meghan’s birthday is coming and there will be no cake, no nine candles with one to grow on for her to blow out…. No Happy Birthday Cha-Cha-Cha to sing and I am bummed. Really, really bummed.
On a much brighter note….there is amazing news concerning the screenplay for Meghan’s song, The Shoebox. They have started filming it in D.C. and we are hoping to be able to get up there for the finale shot sometime late August (maybe)…..not sure about the dates because of schedules and stuff, but it would be pretty “kewl” to use KJack’s lingo….. He’s the one who took Billy’s lyrics, Alan’s music and wrote the story. He has tirelessly worked and reworked on it and found the perfect people to take the project on and get the ball rolling. I am not sure what happens after it gets filmed. I don’t know if after the filming they shop the movie around and hope a company buys it and releases it (either like a made for tv movie or a straight to video kinda thing), but whatever the case may be, at least I know that there is a group of (and I hate to use the word “strangers” because these guys are anything but strangers to me), out there who my Angel touched and they responded with all of their hearts. I have seen some of the actors and actresses for the parts, and no…… I am not being played by any of the Desperate Housewives (just sayin)…..and because of filmmaking being what it is, Meghan is being played by a five year old. She’s cute as a button and I’ve been told she captures the spirit of Meghan perfectly. I will admit I was a little taken aback at the thought of a five year old playing Meghan, cause good grief, Meghan never saw five years old, but I guess that’s the way these things work……
So, I will keep this site updated on the progress of the movie making, and just ask that on Thursday, July 23rd each of you takes a minute out of your day to look up in the sky towards the brightest Meghan Star and wish my sweet brown-eyed girl a very Happy 9th Birthday CHA-CHA-CHA.
Good Night May…. Mommy Loves You….. Daddy Loves You…. Tommy Lee Loves You……. EVERYBODY LOVES MEGHAN!!
Good Night Tay….. Wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Thursday, March 5, 2009 3:35 PM CST
FROM TEAM UNITE:
This just in!
CBS news' Early Show JUST did a story today featuring childhood cancer and the Jonas Brothers! If you are on pacific, Mountain or Central time you can still catch it! Tune in or set your DVR OR DVD players if you can and we'll post a link as soon as it is available!!!
Perhaps the Jonas Brothers are the advocates we've been praying for??? Let's thank them and CBS for the story and ask them and CBS for their continued support of Childhood Cancer!
Team Unite, please mobilize your teams for a mission! We need to ask everyone who is willing (nurses, doctors, friends, family members....) to help us with the following! We need to thank these folks for this story and also get the word out NOW to ask for folks to recognize September as childhood cancer awareness month and September 13th as our annual childhood cancer awareness day.
1. Please email and write letters to CBS news and thank them for doing this story. Ask that they feature it on their website and continue the coverage on this important issue! Contact your local CBS Affilitate station | CBS email Form
2. Contact and thank Debbye Turner Bell, the CBS News Correspondent who filed this story.
3. Please write to the Jonas Brothers (send through CBS) and thank them for their support and for bringing attention to this on behalf of all children battling cancer.
4. Please continue to address the fact that September is Childhood cancer awareness month. Wear your shirts!!! To order September wear, click here ... there will be new ones coming out this summer.
Thank you so much for your continued support of Team Unite. We're DEFINITELY making a difference!
Thursday, February 12, 2009 12:27 AM CST
I found this article in USA Today and thought it was important to share…… So much good information from a story that is sure to make you think before you speak……
By Liz Szabo, USA TODAY
Like many people with cancer, Bethany Winsor found that some of her friends struggled with what to say after she was diagnosed.
When one person looked at her with pity, the usually upbeat Winsor burst into tears. Yet she says a stranger on a plane somehow found the perfect words of comfort.
Winsor, 28, met the woman last year, when they were seated next to each other on their outgoing and return flights between Dallas and Washington. Winsor, who had just been diagnosed with breast cancer, felt at ease with the young woman, who was about her age, and mentioned that she was about to start chemotherapy.
Later in the flight, when Winsor was leaving the restroom, she found that the stranger was waiting for her at the back of the plane. "She said she felt there was a reason we had been seated next to each other," Winsor says. "Although she didn't know the details of what I was going through, she asked me if she could pray with me. I am not particularly religious, but I am spiritual, and at that point, I was in need of a little faith."
As the stranger held her hands, Winsor "felt a connectedness that I really needed. Even though I didn't know this girl, I will never forget her willingness to reach out to me."
Though few among us can summon that sort of eloquence, the stranger's words provide a good example of how to support someone with cancer, says Julia Rowland, head of the National Cancer Institute's survivorship office.
Although the stranger showed compassion, she didn't force herself onto Winsor, Rowland says. And though religion can be a tricky subject, Rowland says the stranger on the plane struck just the right balance. The woman offered open-ended prayers but didn't presume to speak for God.
Words that don't help
The stranger didn't presume to know what was best, offer unsolicited advice or launch into religious sermons, she says. Many people with cancer say they get tired of being told what to do, even if that advice seems as bland as "You need to stay positive."
"What many cancer survivors say is most meaningful is to be heard — truly listened to — and understood, not being told what to do or how to cope," Rowland says. "Many of us are inclined to leap in with advice, opinions or chatter if only to relieve our own anxiety in the face of another's suffering."
Carrie Morse, a survivor of rectal cancer, says she can't count the number of people who told her, "God gave you cancer for a reason." Such clichés can make people feel worse, she says.
"Every person who has cancer goes through these moments where, whatever kind of God you believe in, you're pretty (ticked) off," says Morse, 36, from Washington, D.C. "You don't want to hear people saying, 'God has a plan for you.' "
Importantly, the stranger on Winsor's plane asked her permission before proceeding, allowing her to stay in control of the conversation. One of the most terrifying parts of cancer is that it often robs people of control — over their bodies, their schedules, their plans for the future, says Ellen Stovall, who leads the National Coalition for Cancer Survivorship.
Handle with care
Too often, well-meaning friends and neighbors issue orders, telling people with cancer to take this herb or see that doctor, Stovall says.
Even Winsor, who was diagnosed last year, says she tries to "walk slowly" when talking to other people with cancer and take her cues from their attitude and words, which may change from day to day.
If a person with cancer doesn't want to share, it's important to back off, Rowland says: "Be respectful."
The stranger on the plane also focused on the present instead of guessing about Winsor's prognosis or offering unfounded optimism. Winsor, who had an early tumor, completed chemo in October, radiation in January and is now taking a drug called Herceptin to keep cancer from returning.
"If you say, 'Everything is going to be OK,' that's trivializing it," says psychiatrist Jimmie Holland, author of The Human Side of Cancer. "But it's also not good to say, 'Oh, my mother had that and she died in three weeks.' "
Stovall says people can still share their experiences if they tread lightly.
"You can say, 'I'm sure a lot of people are offering what was helpful to them,' " Stovall says. " 'Do you even want to hear about any of those things?' "
Instead of advice, one of the best things to offer is just to listen, Stovall says.
"I can remember somebody saying: 'I'm a really good listener. I offer that because it's something I can do,' " Stovall says. "Even though I may never avail myself of their offer, it can be nice to know that someone cared enough to offer."
End of Article
Now for some of my thoughts and ramblings…….
When I read this article I thought about grief and how people try to sweep it under the rug when they don’t know what to say. I firmly believe that words are powerful and I agree that we should try to “stay positive” when dealing with “adverse” situations, however, I can tell you that Meghan DID NOT die because someone, be it me, her dad or anyone else hoping and praying for her was not positive…. She died because she had a horrific disease and each and every one of us needs to scream at the top of our lungs that TOO many people are affected by cancer and WAY TOO MANY are dying from it. This article said so much that we, as parents who are suffering and trying to deal with the losses we have suffered, long to say and explain to those who may not know what to say. We are left in a somewhat parallel world understanding those still battling the disease. We have the “been there, done that” mentality and appreciate that there are those out there who will say- hey…. Here’s what you say and what you don’t say to someone……. During our journey and afterwards in the crappy position I sit in, I guarantee we have all had some of the comments talked about above, told to us either by complete strangers or someone just trying to find something to say. Please don’t tell me that God had other plans for Meghan, or that (my all time favorite) “she’s in a better place” because one of these days I may punch you in the face….. Truthfully, the same can be said about trivializing our grief…. Maybe not everyone sees these statements as trivializing our grief, but tread lightly….. If you happen to catch us on an “off” day, all hell just may break lose. If you have not been here, and hopefully you haven’t….. don’t tell us how we should act today, tomorrow or in ten years. We will never be the same, and if you don’t get that, then that’s your loss. If you need to read and re-read the article above, please do. It might make someone’s day if you just shut up and listen.
Good Night May….. Mommy Loves You…… Daddy Loves You….. Tommy Lee Loves You…… EVERYBODY LOVES MEGHAN!!!!
Good Night Tay….. Wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Thursday, February 5, 2009 12:20 AM CST
They say time heals all wounds. This is definitely not the case in the loss of a child. Every day, every month, every year, there is that white elephant in the room. Everyone knows its there, but no one wants to be the first to point it out. The elephant only gets bigger after the loss of your child. Everyone knows what happened, yet rarely does any one want to talk about it. But this is our reality and not only do we want to talk about it, we have to talk about it. It is our only link to our loss. We might try to kick our grief under the rug, but for us parents who have lost their child, we end up tripping over the rug and falling flat on our face, only to try and get up and face another day without our child. The bruises and scars might not be visible to the naked eye, but they are deep and fail to heal even with the advance of time.
We are an angry bunch, us parents who have lost our children. And really, who wouldn’t be? For whatever reason, be it an illness, an accident, our child is no longer here and life couldn’t be more unfair. Every day we struggle to come to grips with a loss so great and so unyielding that it is an ongoing battle just to get up and function on some days. The days pass yet time stands still. This year marks Meghan’s Sixth Angelversary. That means she has been in Heaven twice as long as she was here with us. Only those parents who have lost their child will truly understand the significance of that statement. It is a milestone that we never wanted to see met. That is how we calculate time now. We don’t see time as next month, next year…. we see time as another birthday missed, another year without our precious angel. July will mark Meghan’s 9th birthday. I try hard, but I can’t imagine what she would have been like at nine years old. I remember every inch of her sweet body, her smell, her curls, her froggy voice….. but I can’t for the life of me extrapolate that out six years and see her as a nine year old.
As Saturday approaches, I know I am headed for that dreaded valley…. I can only hope I can get in and get out quickly and quietly. I hope everyone has a peaceful weekend and if you can, take a moment Saturday and say a little prayer for Meghan. I’m sure she hears every one of them.
Good Night May….. Mommy Loves You…. Daddy Loves You….. Tommy Lee Loves You….. EVERYBODY Loves Meghan!
Good Night Tay…. Wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Tuesday, January 20, 2009 9:47 AM CST
Meghan Marie Mack
July 23, 2000 – February 7, 2003
As the 6th Angelversary of Meghan earning her wings draws increasingly closer and in my continuing need and desire to keep her memory alive by doing something hopeful in her memory, I am honored to help Candlelighters of Brevard sell raffle tickets for their 2009 Have a Heart Valentine’s Extravaganza. Each raffle ticket gives you one entry and the chance to win a 2009 Hyundai Elantra compliments of Coastal Hyundai, Coastal Mitsubishi and Cocoa Hyundai. Raffle tickets are sold as follows: 1 Ticket for $10.00; 3 Tickets for $25.00 and 10 Tickets for $50.00. I know times are extraordinarily tight these days, but if you can find $10 to donate in Meghan’s honor, it would mean a great deal to me and for the many, many families still struggling with their child’s diagnosis and treatment. Please send your checks made payable to Candlelighters of Brevard to my home 1971 Dipol Courtway, Titusville, FL 32780. Don’t forget to include your return information so that I can send you your portion of the raffle ticket(s).
For those who don’t know Candlelighters of Brevard, please visit them at www.candlelightersofbrevard.org You will see why they hold such a very special place in our hearts and hopefully they will become one of your favorite charities as well. They are an amazing group of people who have supported our family during Meghan’s illness and the support continues even today with a remembrance card on special “Meghan” dates and birthday wishes for Tommy each year. Please help them continue their great work by buying a raffle ticket or donating any amount to them in Meghan’s memory. As a little side note, I ran in to Dr. Giusti, Meghan’s hematologist/oncologist this past weekend and had the chance to talk to him a little bit. He and I both smiled as we talked about her silliness and froggy voice and the way she would make him kiss her on the forehead while he was in the middle of rounds before she would let him go about his business. She had him wrapped around her little finger and he loved it as much as she did. He is a remarkable doctor, and I am always so happy to have a chance to see him at various events in the community. So, I’ll stop rambling now…..Thank you everyone for your unyielding support.
Friday, December 19, 2008 8:44 AM CST
Today Stinks...... Happy Angelversary in Heaven Baby Taylor.... I hope your big sister, Meemaw, MaNina and Grandpa are taking good care of you. We all are so sorry we never got to meet you and enjoy your sweet face. Be a good girl. Mommy Loves you.
Good Night May..... Mommy Loves You... Daddy Loves You.... Tommy Lee Loves You..... EVERYBODY LOVES MEGHAN!!
Good Night Tay.... Wish you could've stayed awhile.
Carol
Mom2Angelz
Friday, December 12, 2008 12:05 AM CST
This weekend, December 13th marks the 11th Angelversary for my mom and December 19th marks the 5th Angelversary for Taylor. I know you’re watching over our girls mom. Please give them hugs and kisses for me. I love you all very much and miss you all so much it’s a wonder any of us can get up in the morning. Love you mom, Meghan and Taylor!!
Good Night May.... Mommy Loves You... Daddy Loves You... Tommy Lee Loves You.....EVERYBODY LOVES MEGHAN!!
Good Night Tay..... Wish ya could've stayed awhile.
Carol
Mom2Angelz
Thursday, December 4, 2008 3:55 PM CST
WOW- Talk about a slacker!!!! We have been so busy and I barely have time to get from one thing to another! So much is going on…..let’s see… football season ended and we’re now into flag football season. Tommy has been in the newspaper several times the past couple of months and we just got word he has made the First Team Mid-Florida All Star Scholar Team which means his application will be submitted to regional and then national pop warner for recognition of his outstanding grades. As we have done for many years, we have adopted a cancer family thru Candlelighters of Brevard and will be bringing gifts to the family in the next couple of weeks. I’m also helping Kids Beating Cancer again this year with their Christmas party for their children. It’s so nice to have organizations that actually are hands on in making kids smile. Candlelighters and Kids Beating Cancer continue to touch families like no other organization. You can raise all the money and have all the fancy galas you want, but if you’re not getting it to the families and more importantly, the children who need it, why bother??
Outside of childhood cancer, we also have an attorney in our office serving in Iraq so we are sending care packages to him and the soldiers serving with him to help brighten their holiday season.
This month, we have Tommy’s football awards party next weekend and then Tommy will be in the Titusville Parade with his teammates so that should be a lot of fun. Tommy continues to excel in his schoolwork and consistently earns the Honor Roll and Principal’s Honor Roll each semester as you can tell from his recognition thru Pop Warner. It is amazing to watch him mature into such a great all around good kid.
As for me, I took advantage of the Thanksgiving holiday and took a cruise with my boyfriend, my sister and her husband, my brother and his wife, my boyfriend’s parents and (as funny as this may sound…..) my boyfriend’s ex-in-laws. We had the greatest time together and the cruise couldn’t have been more perfect. I ended up winning pretty nicely in the casino paying for our trip in the process….. gotta love it! I’m sure Meghan had a hand in it as there were several times I would hit 723 in three card poker…… then she came thru with a straight flush for me the last night of the cruise….. It was the perfect ending to a perfect vacation!
Lastly, don’t forget to visit Team Unite where you can go to cafepress and pick up our Team Unite t-shirts, hoodies, and other apparel as well as pick up one of the most beautifully done calendars of all time which of course features all of our kids including the most beautiful froggy-voiced Angel ever! These are perfect presents for the holiday and the pictures of these children are an amazing reminder of the strides that need to continue in the pediatric cancer world. I am very proud to be a part of Team Unite and its continuing efforts to change the way our government looks at (and funds) childhood cancer and the research it so desperately needs.
So, for now…. Good Night May……. Mommy Loves You…… Daddy Loves You…… Tommy Lee Loves You…..EVERYBODY LOVES MEGHAN!!!
Good Night Tay….. Wish you could’ve stayed awhile……
Carol
Mom2Angelz
Sunday, August 24, 2008 6:53 PM CDT
NUMB......NUMB.....NUMB......
Ali has relapsed. Please pray for her and her family. www.caringbridge.org/visit/alicecaceres
CAROL
Mom2Angelz
Tuesday, July 22, 2008 9:24 AM CDT
UPDATED AUGUST 22, 2008:
SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH..........
PLEASE TAKE A MINUTE AND GO TO WWW.CAFEPRESS.COM/TEAMUNITE AND PURCHASE ONE (or more) OF THE MOST BEAUTIFUL SHIRTS, TANKS, HOODIES, etc FEATURING ALL OF OUR TEAM UNITE WARRIORS AND ANGELS. A PORTION OF THE PROCEEDS WILL GO TOWARDS RAISING AWARENESS AND FINDING A CURE FOR CHILDHOOD CANCER.
Things That Go Bump in the Night…….
Last night as I was drifting off to sleep, the wave that I have been trying desperately to avoid hit, and hit hard. I began sobbing uncontrollably and could barely breathe with my nose so stopped up I was gasping for air. Unfortunately for my boyfriend, he had never been witness to a total meltdown and had no idea what was happening. Between my gasps for breath I tried to explain that Meghan’s 8th birthday was coming up on Wednesday. As you can imagine, there is not much someone can say, but he was there and he cared and I know his heart broke to see me like that.
Unfortunately I knew this was coming, I just didn’t know when it would strike. I’ve told my friend Ann many, many times as she endures her journey that you can never tell when you will be hit. It comes out of nowhere and leaves just as quickly. The analogy I have given her many times is grief is like a valley. Sometimes you need to go in there, wallow in your grief and get out as quickly as possible. I was unable to take my own advice, and for that, I paid for it with the puffiest eyes this morning and sinuses that are truly miserable.
So, last night, as my thoughts wandered and I knew where I was going, I thought I would only be there a minute, so I left the car running, the lights on and went in to the valley of grief alone. I didn’t plan on staying long, rather, maybe a few minutes at most. But I got in there and started wandering around and it began to sink in further all that my daughter has missed, all that I have missed and all that her brother and father have missed. And I began sobbing hysterically. And it kind of felt good. You bottle up that grief too long and the valley pulls you in and makes you take a good hard look around. The worst part of the valley is you don’t like what you see. It is dark, it is lonely and there is no one, except for the unfortunate few who have endured the hell of losing their child, can understand what it’s like in there. You probably are thinking as you read this, you knew you were going in, why didn’t you get out? Think of something else….Well, that’s a good question, but one that clearly can’t be understood unless you have been there with us. Sure everyone has endured grief at some level. But a child? We, are a small group and the wounds are deep and unforgiving. The best way to envision the valley of grief is to imagine yourself walking somewhere, anywhere, and every where you turn, each step you take, there are razor blades slicing tiny little cuts into every inch of skin on your body. One slice alone is bearable, but they add up, and they come quickly. Each slice a reminder of a giggle, the look in their eyes, the potential they had to grow up and be a great person and lead a happy, healthy life. But those slices, each and every one of them, are forever a reminder of all that you have lost. The slices scab over, but are easily opened when least expected.
So the wounds were opened, and I grieved for Meghan. The fact that it has been five years doesn’t mean a thing. The feelings are as raw and hurtful as the moment she earned her wings. I don’t believe that will ever go away and I know I will go in to the valley again and again and the pain will be as bad as ever. But that is all a part of this life I have now and I have to accept that there will always be very, very dark days (or nights) that are as painful and vivid as Meghan’s last days were.
So, although I was able to get back in my car, turn up the radio really loud and hightail it away from that valley, I know that I will never be able to drive far enough away and that on occasion, my car will make its own right turn toward the valley and I will once again be brought back to that horrible place of despair and hopelessness, but I also know that I can get out of that place, and that is what lets me wake up each morning knowing I am one day closer to seeing Meghan and Taylor again and that although I don’t like the reality of my life, it is what it is and I will go on hoping that I am worthy of seeing my girls again when the time is right. So for now, I trudge on and ask you all to say a Happy Birthday Cha-Cha-Cha for my sweet brown-eyed girl tomorrow on what would have been her 8th birthday. Happy Birthday Meghan, my Sweet, Sweet Brown Eyed Girl…CHA-CHA-CHA…. I love you baby doll….. Love Mommy.
Good Night May…. Mommy Loves You….. Daddy Loves You…. Tommy Lee Loves You…….EVERYBODY LOVES MEGHAN!
Good Night Tay….. Wish ya could’ve stayed awhile……
Carol
Mom2Angelz
Wednesday, April 2, 2008 6:40 PM CDT
Hello Stalkers.... Please take a moment to read the information below regarding Team Unite's work. We can use all the help we can get so please take a moment and contact your representatives and tell them to get on board. Our children's lives depend on you......
Strategy #17
God bless Team Unite for joining forces to move forward to a cure!
Childhood Cancer in the News: As of today we have (55 + sponsors) for S 911 and 212 on the House side. (Judy Biggert (IL) and Rahm Emanuel (IL) signed on in the House) and Senator Wicker and Senator Specter both became cosponsors yesterday! Keep it up Team Unite.
WE WILL MAKE THIS HAPPEN!
From CureSearch! The Power of Advocacy: your voice in action. The childhood cancer community is a powerful force made up of passionate fighters for a cause that could not be more important. Many of you are using your experience as parent, survivor, grandparent, health professional, neighbor or concerned citizen to communicate a message of urgency about the need for funding for childhood cancer research. It is up to us to sound the alarm and challenge our elected officials to care enough about children with cancer to do something about it.
Since the beginning of this year, more then 3000 letters have been sent by you to Members of Congress to let them know that we expect them to do the right thing, and we are watching. The message is getting through. Today there are 54 Senators and 210 Representatives who have signed on as co-sponsors of the Conquer Childhood Cancer Act.
Please go to http://curesearchnccf.blogspot.com/2008/03/power-of-advocacy-philadelphia.html to read an article about the power of one persistent parent in Pennsylvania.
Strategy number 17 starting April 1, 2008 or anytime you are able to call
First please click here to send a letter to your local representatives.
Please target these members of the House of Representatives who are members of the House Energy and Commerce Committee this week by phone, fax and/or mail. A sample script follows the list.
John Shadegg, AZ (202) 225-3361
George Radanovich, CA 202/225-4540
Joseph R. Pitts, PA 202 225-2411
Mary Bono, CA 202-225-5330
Greg Walden, OR 202-225-6730
Jane Harman, CA 202-225-8220
Mike Ross, AR 800-223-2220
*****Sample Script for Calling Representatives on H.R. 1553 (non-cosponsors)***
Hello, my name is, <
Feel free to add your personal reasons for supporting this as well. Thank you Team Unite!
H.R.1553 Title: A bill to amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers. As you can see we have 203 cosponsors. Rep Pryce, Deborah of Ohio introduced H.R. 1553 March 15, 2007. We have 210 Cosponsors as of today (list does not update everyday so it reflects a lower number).
Related Bills: S.911
Latest Major Action: 3/16/2007 Referred to House subcommittee.
Status: Referred to the Subcommittee on Health.
Save the Date: CureSearch invites you to continue to use your voice in Congress. Join us June 22, 23 and 24, 2008 in Washington, DC for the 9th annual Childhood Cancer Awareness and Hill visit day; REACH THE DAY; Conquer Childhood Cancer. Registration is now available at http://www.curesearch.org/support_curesearch/raise_awareness/index.aspx?id=4450.
This event will inspire and empower all who attend.
Statistics and Facts
Cancer is the leading cause of death of children
Funding for the NCI (national Cancer Institute) and the NIH (National Institutes of Health) have been flat over the past 5 years which has put us further from our goal of finding a cure for childhood cancer
Over 12,500 children/teens are diagnosed and 2500 do not survive EVERY YEAR in our country
Email dkillian@helmsbriscoe.com to join this database and help make move S 911 onto becoming Law!
Wednesday, April 2, 2008 6:36 PM CDT
Strategy #15
God bless Team Unite for joining forces to move forward to a cure!
Childhood Cancer in the News:
Rep. Fossella Joins With Family of Late Bay Ridge Teen To Press ... Brooklyn Daily Eagle - Brooklyn,NY, USA
The legislation, the Conquer Childhood Cancer Act (HR 1553).
Strategy number 15 starting wednesday March 19, 2008 or anytime you are able to call
Congratulations Team Unite, We have made it through our Senator list and we are now beginning to call the House of Representatives! Our strategy will be three-fold and will involve focusing our efforts where we will have the most impact which is in contacting your local reps and then focusing in on the Energy and Commerce Committee as well as the Health Sub Committee.
1. First please click here to send a letter to your local representatives. Please note, the first four individuals listed under #2 on our current strategy are in leadership positions on the Energy and Commerce committee which has jurisdiction over H.R. 1553. The message to those four representatives is to please review H.R. 1553, the Conquer Childhood Cancer Act and consider it for mark up by the committee. There is not a letter on line at CureSearch that speaks to this so please customize accordingly for Reps Dingle, Barton, Pallone and Deal. Thank you!
2. The following Representatives hold leadership positions on the Energy and Commerce committee which has jurisdiction over the bill. The message to these four individuals is to please review the Conquer Childhood Cancer Act and consider it for mark up by the committee. Please note that these individuals are not current cosponsors of the bill so feel free to ask for them to cosponsor as well but the real help they can provide to our cause is to get the bill marked up. That is the strategy here to influence them to get the bill to committee for mark up!
Representative John D. Dingell of Michigan, Chairman of the Energy & Commerce Committee, (202) 225-4071
Representative Joe Barton of Texas, Ranking Member of the Energy & Commerce Committee, (202) 225-3641
Representative Frank Pallone Jr. of New Jersey, chair of the Health Subcommittee, 202-225-4671
Representative Nathan Deal of Georgia, Ranking Member of the Health Subcommittee, 202-225-5211
*****Sample Script for Calling Representatives on H.R. 1553 (To the Four Members above who are in Leadership Roles )***
Hello, my name is, <
3. The strategy here is to call and request that these Reps cosponsor H.R. 1553, the Conquer Childhood Cancer Act.
Representative Steve Buyer of Indiana, 202-225-5037
Representative Baron P. Hill of Indiana 202-225-5315
Representative Edolphus Towns of New York, 202-225-5936
*****Sample Script for Calling Representatives on H.R. 1553 (non-cosponsors)***
Hello, my name is, <
H.R.1553 Title: A bill to amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers. As you can see we have 203 cosponsors. Rep Pryce, Deborah of Ohio introduced H.R. 1553 March 15, 2007. We have 210 Cosponsors as of today (list does not update everyday so it reflects a lower number).
Related Bills: S.911
Latest Major Action: 3/16/2007 Referred to House subcommittee.
Status: Referred to the Subcommittee on Health.
Save the Date The CureSearch Reach the Day Conquer Childhood Cancer event will be held in Washington, DC on June 22-24, 2008, and a National Day of Awareness will be celebrated with activities across the country on June 24th. Please watch the CureSearch You Tube video Here: http://www.youtube.com/watch?v=AGS4yE5v9rM&feature=related
Statistics and Facts
Cancer is the leading cause of death of children
Funding for the NCI (national Cancer Institute) and the NIH (National Institutes of Health) have been flat over the past 5 years which has put us further from our goal of finding a cure for childhood cancer
Over 12,500 children/teens are diagnosed and 2500 do not survive EVERY YEAR in our country
Email dkillian@helmsbriscoe.com to join this database and help make move S 911 onto becoming Law!
Monday, February 25, 2008 6:51 PM CST
UPDATE MARCH 19, 2008
PRAYER REQUEST
Please Pray for Emily Lester (www.caringbridge.org/fl/emilylester). She is fighting her toughest battle right now and could use everyone’s prayers. Unfortunately, she has been put on the vent and is now on dialysis. As most of you know from Meghan’s Journey, this turn of events is not good especially when fighting this disease, but you also know that you can never give up hope for things to turn around and especially at this time of the year, when we are probably all a little more prayerful than on other occasions, it would be appreciated if you would include Emily and her family in yours.
I promise to update soon. An incredible thing is happening with Meghan’s song “The Shoebox” and I need to take the time and write down what all the excitement is about….. Also, Team Unite has been doing some incredible things with CureSearch and we are all looking forward to getting this bill passed and get some real funding behind childhood cancer. Kate Shaffer at CureSearch is an amazing woman and we have been talking about starting a CureSearch MileStone Walk here in Orlando. We hope to be getting teams together and accepting donations for this event soon…..
I’m going to leave my past updates up in the hopes that you will email, call, or write your Senator and request that they co-sponsor S 911.
UPDATE February 26, 2008
Back on May 9, 2007 I had sent a letter to a radio station in North Carolina who had chosen Meghan’s Bone Marrow Transplant doctor as its Home Town Hero of the month. Imagine my surprise this afternoon when I’m sitting at my desk and an email pops up from Dr. Mark Mogul. I opened the email up immediately and this is what I read:
Dear Ms. Mack,
I am just speechless by the incredibly sweet and moving letter that you wrote to WBT radio on my behalf. I am sure in no small part as a result of that letter, I was awarded the Charlotte Hometown Hero for 2007. Not only is that a humbling award, but it is associated with $5000 that I can give to charities of my choice. As such, several very important charities for children with leukemia, like your precious Meghan, will benefit from your kind words. Again, I cannot not thank you enough and I wish you and yours all the best in the world. God Bless.
Love,
Mark
Here is the letter I sent in:
I came across your Hometown Hero article of April 27, 2007 regarding Dr. Mark Mogul of Presbyterian Blume Pediatric Hematology and Oncology Clinic and I was compelled to write to you and say a little something about Dr. Mogul from a former patient’s mothers’ perspective.
Before taking the job at Presbyterian Blume, Dr. Mogul was the Head of the Bone Marrow Transplant Unit at Shands Hospital at the University of Florida in Gainesville. That is where I met him.
My daughter Meghan Marie Mack was 21 months old when she was diagnosed with Bi-Phenotypic Leukemia. She underwent chemotherapy treatment in Orlando and then after several months of treatment, she was sent to Shands to be under the care of Dr. Mogul for her Bone Marrow Transplant.
To say that Dr. Mogul is one of the best pediatric doctors of all time is certainly an understatement. I remember him telling me with tears in his eyes when my daughter lost her battle that February morning in 2003, “It is days like this that I wish I was checking ears”. I will never forget those words because from the day I met him, I could not, for the life of me, figure out how someone who is so incredibly caring and great with kids, can be so strong when he sees child after child fight so hard for their lives only to die a horrific death. It was at that moment though, that I got a glimpse into Dr. Mogul’s eyes and could truly feel how deeply he is affected personally by the loss of each child. And that is what I think drives him as he continues to search for a cure while enduring heartache with the families and patients he cares most about. We need more doctors like Dr. Mogul and if I could thank him again for the incredible care and love he gave my daughter I would. I know she adored him and the feeling was mutual. She was a tough little 2 ½ year old and could have a very stubborn streak and if she did not want to do something she would not (except when Dr. Mogul asked her to do it…..then she would smile and take her medicine, or get on the scale, or get her blood pressure checked).. He definitely had a way with her and I am sure his patients now are some of the luckiest children in the pediatric cancer world to have him on their side. He is truly an Angel on Earth.
So one of my dear friends, Chris summed it all up for me after reading this…. She said….. Meghan is still touching people and helping children to this day. How extremely cool is that????
I’m leaving the information up about Team Unite and S 911. Please take a moment and make just one call. Pick any one of the congressmen or women and tell them why its important for them to co-sponsor this bill. And while you’re at it, go take a look at the bill itself. It is so important for us to fund pediatric cancer research. Children such as Meghan depend on all of us and you can help in this very large way by simply making a phone call. We’ve even provided 800 numbers and a script so you don’t have to do anything but call and read.
And most importantly…… take a look at what presidential candidate is NOT co-sponsoring this bill….. Is this the kind of President you want? It certainly isn’t the one I want… Mr. McCain…..Co-Sponsor this bill!!! It’s the right thing to do.
I have been meaning to update Meghan's Journey..... As part of Team UNITE to help push Senate Bill S911 thru congress, we have been calling, writing, emailing, everyone on Capitol Hill. I'm writing this quickly, and will share more, but take the time to read below, and if you can make a few calls, or send a few emails on behalf of Team Meghan I would greatly appreciate it!
TEAM UNITE
STRATEGY #9
*******
Please pray for these warriors whose family and friends make up TEAM UNITE. Those in battle to achieve remission and or precious warriors who are now our angels of inspiration! Please take a moment to send your prayers for strength to these special people who have joined forces to make a difference for the children of our country. Thank you so much for doing what you do! God bless TEAM UNITE!
Team Henry
Team Alexandria
Team Austin
Team Jessica
Team Caroline
Team Aleigha
Team Noah
Team Meghan
Team Alyssa
Team Hannah
Strategy number 9 calls Monday february 25, 2008 We have contacted all of the members of the senate who are not currently cosponsors of S 911. As we update our strategy to now include members of the house, please go back and call any senators who were on a list that you were unable to call or write to. Thank you Team Unite. Together we will make changes that will save children’s lives!
John McCain of Arizona (202) 224-2235. Senator McCain is the only presidential candidate not currently a cosponsor of S 911.
*Senator Michael Enzi Wyoming 202-224-3424 Ask that S 911 be passed as an interim measure until they can find a way to adequately fund the NCI and NIH.
Senator Lisa Murkowski Alaska 202-224-5555
Senator Ted Stevens Alaska 202-224-3004
Senator Bill Nelson Florida 202-224-5274
Senator Ensign, John Nevada 202-224-6244
Senator George, Voinovich Ohio 202-224-3353
Senator Gordon Smith Oregon 202-224-3753
Senator Jim DeMint South Carolina 202-224-6121
Senator Richard Durbin of Illinois 202-224-2152
TEAM UNITE let’s call and thank Senator Durbin for becoming our 51st cosponsor and let him know what this means to us personally. If you’d like to, go ahead and ask him what we can do to help push this to the floor for a vote!
Senator Jack Reed of Rhode Island 202-224-4642
Senator Reid is the sponsor of S 911. Let’s call and thank him too and ask what we can do to help push this to the Senate floor for a vote!
Senator Arlin Spector of Pennsylvania 202-224-4254
Senator Tom Harkin of Iowa 202-224-3254
Senator Carl Levin of Michigan 202-224-6221
Senator Chuck Grassley of Iowa 202-224-3744
Senator John Barrasso of Wyoming 202-224-6441
Senator Pat Roberts of Kansas 202-224-4774
Senator Judd Gregg of New Hampshire 202-224-3324
Senator Bob Corker of Tennessee 202-224-3344
Senator Lamar Alexander of Tennessee 202-224-4944
Senator Kay Bailey-Hutchison of Texas 202-224-5922
Senator Orrin Hatch of Utah 202-224-5251
Senator Robert Bennett of Utah 202-224-5444
Senator Mike Crapo of Idaho 202-224-6142
Senator Herb Kohl of Wisconsin 202-224-5653
Senator Ken Salazar of Colorado 202-224-5852
Senator Wayne Allard of Colorado 202-224-5941
Senator Roger Wicker of Mississippi 202-224-6253
Senator Christopher Bond of Missouri 202-224-5721
Senator Jon Tester of Montana 202-224-2644
Senator Tom Coburn, M.D. of Oklahoma 202-224-5754 *position is to not provide disease specific funding. Ask him to vote yes on S911 as an interim measure until they can come up with a plan to adequately fund NIH and NCI.
Senator Max Baucus of Montana 202-224-2651
Senator Bryon Dorgan of North Dakota 202-224-2551
Senator Kent Conrad of North Dakota 202-224-2043
Senator James Inhofe of Oklahoma 202-224-4721
Senator John Thune of South Dakota 202-224-2321
7th call…….call someone you love and tell them about TEAM UNITE. Ask them to join forces with us and to send an email do dkillian@helmsbriscoe.com along with their state of residency.
Please note, if long distance charges are a problem, use the Capitol switchboard 800 numbers and ask for the senator by name. Be patient these lines stay pretty busy!
800-828-0498
800-459-1887
800-614-2803
*****Sample Script for Calling Senators on S911 the Conquer Childhood Cancer Act:****
Hello, my name is, <
Letters: For sample letters please go to this site and there are letters you can copy. If you could edit to make it personal that would be great as this does make an impact. They need to know your stories.
Save the Date The CureSearch Reach the Day Conquer Childhood Cancer event will be held in Washington, DC on June 22-24, 2008, and a National Day of Awareness will be celebrated with activities across the country on June 24th.
Thursday, February 7, 2008 8:21 AM CST
FIVE very long years. Today is FIVE years since Meghan earned her wings and went to be with her grandmothers and grandfather. The pain doesn’t feel any different today than it did February 7, 2003. I’m not surprised about that. Nope, not surprised at all. All week I have been on the verge of tears and have had to stop and focus on something else to get my mind off of what that last week was like five years ago.
I won’t go back over the graphic, gory details. If you’ve been following along all these years you will know it was pretty awful. If you haven’t been here all of these years, I will spare you losing your breakfast…. or lunch….. or dinner….. So instead, I come here to write, to vent, to remember better days. Unfortunately, because she was so little, the majority of her life she had leukemia. How crappy is that? Well, I know how crappy that is and as I sit munching on my proverbial crap sandwich which I unfortunately had mega-sized, I will try and remember her brown eyes, those jet black curls, that giggle of hers, and the way she could get anything she wanted just by looking at you and saying please….. She would have been hell as a teenager….. but I would have taken that hell as opposed to this hell any day.
Good Night May..... Mommy Loves You... Daddy Loves You.... Tommy Lee Loves You.... EVERYBODY LOVES MEGHAN!!
Good Night Tay..... Wish ya could've stayed awhile...
Carol
Mom2Angelz
www.lifeinthegrieflane.blogspot.com
Monday, December 3, 2007 10:07 AM CST
Don’t forget to check out my blog…. LifeInTheGriefLane.blogspot.com
Let’s see……….
Kids Beating Cancer held their 2007 American Girl Fashion Show and Tea Party this past weekend at the Rosen Shingle Creek in Orlando. I was asked to help out backstage getting the girls and their American Girl Dolls ready for the fashion show. We started off Friday night with Rehearsals….. I didn’t expect this to be hard and had not really even thought about it until there they all were…. Dressed in the cutest matching outfits with their American Girl dolls. Gosh I miss having girls…… I think Meghan would have liked American Girl dolls…..Mommy however would not have liked the cost (lol)…..but…. Meghan would have gotten an American Girl Doll (or two or three hundred of them if she wanted them) had she beaten that awful leukemia….. The really odd thing for me is when I think of these things I generally don’t include Taylor and what she may or may not have liked. I guess it’s so hard for me since I didn’t know her like I knew Meghan. She is no less my daughter, but her personality escapes me. That makes me sad. I wish she had been ok and we had been able to watch her grow and thrive and of course, dote on her big brother. Well for that matter, I wish a lot of things, most definitely that both Meghan and Taylor were here healthy, happy, safe and in my arms every night and day…….On this same note, every night when Tommy Lee goes to sleep he always says Good Night May, Good Night Tay…… and whenever he hears me talking about Meghan or saying anything about our family and I fail to mention Taylor, he always jumps in and mentions her. It really bothers him that I can leave her out of stories. Fact is, we have no stories with Taylor so it makes it difficult to talk about her like that…..oh well……such is life I guess…….
Anyway, wow- talk about jumping around….. Kids Beating Cancer’s American Girl Fashion Show and Tea Party….that’s where I was…… Let’s see, they had two shows on Saturday and one show on Sunday. I was unable to attend the Saturday morning show since Tommy Lee had a flag football game (which of course I could never miss) so I attended the Saturday afternoon and Sunday afternoon events helping out backstage getting 60 (yep- 60) little girls and their dolls dressed and redressed……Can you say DRAMA???? Not sure who had the most drama the girls or their Stage Moms….Sheesh! It was fun, hectic and at the same time heartbreaking. Meghan (and Taylor) would have been the most beautiful girls up there I am sure…. I have a feeling they were there though, up in the rafters watching all the pretty little girls and probably playing with their Heavenly American Girl Dolls while they watched and giggled.
So, this week we’ll be wrapping presents for the Kids Beating Cancer Christmas Party and then T3 and I will be heading down to south Florida to visit Ali (www.caringbridge.org/visit/ali) who is having her son’s 7th Birthday Party!!!! I can’t wait to see her and of course Mikey who is getting so big! Anyway, she has a million things planned to entertain the kids, a three legged race, water balloons, and who knows what else she has in store….. I made sure though that the parents didn’t have to participate in any of these events because knowing her insane sense of humor, she would have the kids sit on the sidelines and have the adults doing these crazy things (lol)…..
Taylor’s Angelversary is coming up in 16 short days…..sigh….. I mean really… what kind of crap was that losing a baby 6 days before Christmas????? If I didn’t have crappy luck, I wouldn’t have any luck at all I guess…….
Good Night May…. Mommy Loves You….. Daddy Loves You…. Tommy Lee Loves You….. EVERYBODY LOVES MEGHAN!!!
Good Night Tay…. Wish ya could’ve stayed awhile….
Carol
Mom2Angelz
Wednesday, October 31, 2007 9:04 PM CDT
UPDATED NOVEMBER 29, 2007
Ok Stalkers... I'm officially a Blogger now..... www.lifeinthegrieflane.blogspot.com Come in, pull up a chair, browse around....
HAPPY HALLOWEEN!!!! Meghan, I know you were the most beautiful Fairy Princess and I'm sure you remembered to hold Taylor's hand as you tricked and treated your way thru Heaven....... I miss you girls......
Wow!!!! We have been busy, busy, busy here!!!! I recently attended Kids Beating Cancer’s annual black tie event, Hats and Martinis at the Rosen Shingle Creek. What an unbelievable location! Boy, do these people know how to put on an event!!! This was only their THIRD year doing this event! Can you believe they raffled off a 2008 Cadillac???? I was able to sell a bunch of tickets for them. It was so easy to sell those tickets mainly because it’s a great cause, and the car is absolutely beautiful and also because I just hit up my ELM sponsors who were more than willing to donate. I can’t wait until next year when I can be even more involved! What a great organization!
Another cool thing about Kids Beating Cancer is that they really want their guests to enjoy the evening and really make it such a special event that their guests couldn’t find anything close to the excitement attending another charity’s black tie event. They completely get the concept that there are black tie events and then there are BLACK TIE EVENTS….. They also theme their events and really go all out to make it as if you were actually a part of whatever theme they happen to be doing. The theme of the event this year was “As Time Goes By” (how incredibly appropriate huh??) and the room was decorated like Rick’s Café Americain in the movie Casablanca. You actually walked in on a red carpet under an awning into the ballroom complete with Casablanca movie posters placed throughout the room. There were people dressed as Rick and Ilsa mingling. The centerpieces were huge Martini glasses lit up from within. The tables were elegant and just beautiful. Every one wore a hat (some beautiful and some goofy and totally off the wall). If you didn’t have one, they actually had hats right there for sale so “everyone” participated in the “Hats and Martinis” theme. Everyone was having a great time.
Before going into the ballroom there were Martinis of every flavor imaginable and they had each of them named for the actors in the movie, and then there were Martinis with names reflecting beating cancer…. I’m sorry I can’t remember those because someone took a lot of time thinking those names up and they were so cool….very, very creative!!! I would blame my lack of memory on having one too many Martinis myself but I had a long drive so I only had two Cosmos (my absolute favorite)!!! Anyway, it was so much fun I can’t even begin to describe it. The live and silent auction items were unbelievable. The silent auction was packed with really cool stuff, a lot of beautiful and really expensive jewelry, framed art, signed memorabilia from The Hard Rock which donated a ton of great things and lot’s of gift baskets. The live auction was spectacular ending in a Baby Grand Piano that sold for $12,000! There was a trip to Hawaii, a trip to the Ellen Show, gosh, I forget what else….I know there were other trips and spas, two drum heads with handprints of children with cancer…..my little Markie was one of the children whose handprint was on there :o) I mean, a Cadillac was raffled off, a Baby Grand Piano, Trips galore….. I’ve never seen such incredible auction items ever!
One of the greatest and most memorable aspects of the evening was that I met some of the most incredible women whose lives have been touched by childhood cancer. These people truly get it. This is not just a job for them- it’s their mission in life. How nice to find people who really care and understand what this is all about. The founder of Kids Beating Cancer lost her son to cancer when he was 9. It was especially nice to be reminded that the money raised by them directly helps children and families in our community unlike the bigger nationwide charities. I also ran in to several attorneys and doctors I know as well as some clients of our firm. Small world to be sure. There is no doubt our firm will be buying a table or two at next year’s event. This was a place to see and be seen. Jim Payne from a local news station was the Emcee and good grief is he handsome in person! It could have been the way he was wearing that tux and hat…but ooofah…. Is he handsome!!! Let’s see, they had a famous swing band that plays all over the country and everyone was dancing all night long. Oh and the food! Unbelievable….not your usual chicken plate…. Beef Wellington, mashed potato martinis with shrimp or filet mignon on top….ummm what else….ohhhh crab cakes….. holy cow were they delicious!!!! I’m telling you there were Hors d’oeuvres to beat the band! And did I mention Martinis???? Open Bar all night long! Just unbelievable! What an event!
As if life couldn’t be any better….we also had Tommy Lee’s 10th birthday party recently (yikes- 10…. when did THAT happen???) at our local bowling lanes and then we finished his football season off with a bang! North Brevard Hawks Mighty Mites Rule!!! Our team has been invited to the Mighty Mites Jamboree in Daytona Beach coming up the first weekend in November. Teams from all over the country and Europe will be there. Neither of us can wait till next season….it has been SO much fun!!!! But for now, we’re headed into flag football to keep him in shape for next season (like he needs that! I swear the muscles on that kid are unbelievable)……and then after that, its basketball then baseball season and back to tackle football….. Holy cow I’m tired just thinking about all of his activities!!! (As Time Goes By huh????) If this kid doesn’t get a full ride to THE U on a sports scholarship I don’t know who could! And I bet he won’t be one to drop out!! Not only is he athletic, he’s in the academically gifted program at school and has just been invited by Stetson University and the University of Iowa to participate in a program for gifted and talented students to study how these children learn and what they’re ready to learn. He’ll be taking the 8th Grade Explorer Test (and ummmm he’s in 4th grade!!!) He is just such a great kid all around (not to mention how cute he is- I tell ya, the number of girls that “like” him are way too many)…... I’m going to have to start beating them off with a stick soon! I’ve added his football picture to the photo page……. Is that a CANE in the making or WHAT?????
So, as we head into another holiday season, be thankful for the little things… RAIN (oh wait, that’s another journal entry….lol)…… how bout let’s be thankful for great family, true friends and good health. I HOPE you all have a great holiday :o)
Good Night May…. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…. EVERYBODY LOVES MEGHAN!!
Good Night Tay….. Wish ya could’ve stayed awhile!!
Carol
Mom2Angelz
Tuesday, October 23, 2007 2:28 PM CDT
LIFE’S TOO SWEET TO BE BITTER…….
As so many of you Stalkers had noticed, I put Meghan’s Journey on lockdown because of those who decided that this was THEIR public forum for THEIR views and opinions. Clearly it is not and my suggestion to all who don’t like what I write on here, go elsewhere. You’re neither welcome nor wanted here. The internet is a very large place…. Here’s a suggestion…..how about creating your own website and “hope”fully blog about your own mundane lives and stay out of mine. Now THAT would be interesting…..NOT!
With that said, for those of you who faithfully follow Meghan’s Journey and care about our family, thanks for the emails supporting me and what I write in this journal. (Yes Terry, I’m sure Jalen was there dutifully dumping buckets of rain as well :o) I did understand your frustrations about having to use a password, and have reopened up the website with full knowledge that there are still going to be those who choose to hide behind the anonymity of their computers by not leaving their real names or e-mail addresses for all to see. It’s easy to be nameless and faceless and write cruel or nasty comments. If you had an ounce of courage or dignity, you would say your name loud and proud and not be ashamed of what you have to say. What it shows is that you are uncomfortable with your own words and know in your heart that what you have written is unconscionable. It’s easy to see why you would remain nameless though. Your attempts at a scathing or perhaps in your feeble mind, a witty guestbook entry, was neither scathing or witty. They were however, boring and showed a clear lack of talent for writing. My fourth grader writes a better sentence.
You all know who I am. You know my name, and you know my personal e-mail address and there are those who know my work email address as well. If you choose to continue to be a coward and hide behind your incredibly lame made up screen name, have at it. It will only show your ignorance and cowardness. The great thing about computers and the internet these days is that “everything” and I mean, “everything” is tracked. If you don’t think for a second I didn’t hunt you down and confirm my suspicions on exactly who was entering the guestbook “entry” (because it really was only one entry written very poorly AND with typographical errors – which you ALL know I despise)……, you clearly underestimated your opponent. Not that I’m surprised. But truthfully, the confirmation of who you are was not “eye-opening” at all to me. It was exactly who I thought. So if you choose to continue to harass and harangue a mom who has lost not one, but two baby daughters, behind your cowardly veil of the internet because you don’t like what I say, beware. Life has a way of evening up the score. Not to mention, Meghan has a magic wand and is not afraid to use it…… she just might pop you on the head….kinda like a rain shower……
Back to…… LIFE’S TOO SWEET TO BE BITTER
How clever! But yet…. How untrue. If you think being bitter is a negative characteristic, you are wrong. If you have never been bitter, you have clearly missed out on an emotion that when journeying thru grief is a necessary evil. If I was NOT bitter over Meghan’s death I would be less of a mom to her. But, rest assured…. I am every much as bitter today over her death as I was on February 7, 2003. Perhaps even moreso when there are those out there “fighting for a cure” only to be advancing their own agendas while not having these children as their first priority. Oh sure, there are times when being bitter is not in your best interest, but other times, you have to absorb the bitterness, wallow in it and when you are ready, release it. If you have never lost a child, you will not get this, so don’t try to understand. There are things that are unfathomable and this is one of those things. If you do understand this, you are one of us, and for that I am sorry.
As a lot of you know, my friend Ann’s son Gregory lost his life on September 10, 2007 after his long, courageous battle with cancer. I have found myself in the position of listener and grief counselor at times to Ann and I hope she doesn’t mind my divulging some of the less personal analogies I have shared with her. Having been there and having gotten the t-shirt, there are things that others who have not had the loss of a child can’t share with her in her newfound life and journey thru grief. We had been exchanging emails and got on the subject of grieving. There is no rule book for this. Well, Elizabeth Kubler-Ross tried to write one, but really the reality is….. grief is a long journey with deep, deep valleys and very few peaks. You are allowed your pain, your anger, your grief, but just don’t let yourself get to the point where you can’t get yourself out of the valley. Go in to the valley, walk around, scream, yell, cry and curse, but know that you have to find your way out of that valley. Once you’re out, you’ll go visit again and sometimes again and again, but remember that valley is not your permanent home and you should not get comfortable in there. Get in, get out- but don’t be afraid when you think you’re doing great and that valley is just around the corner begging you to come back in. In time, that valley won’t be such an evil place, but becomes a place that is needed so your heart doesn’t burst with grief.
So if you have to, embrace your bitterness, walk in your valley, enjoy your peaks, and know that tomorrow starts another day of emptiness, loneliness, bitterness, sadness, grief and unexpected bouts of sorrow when you least expect it. But tomorrow also brings sunshine (or rain), unconditional love of family and true friends. It brings the smile of a ten year old who is truly the biggest joy in my life. It brings a new hot little red sports car (or mid-life crisis car as “some” might like to call it…) whatever you call it…. it is red, and it is hot! It brings the Canes beating the Noles…. It brings an open field tackle that Tommy Lee made that would make the most experienced defensive end smile with pride and every running back and wide receiver shudder with fear…. It brings laughter and smiles of knowing that hit saved a touchdown… It brings 3 A’s and 2 B’s from his first semester in the Gifted Program….. It brings cool evening breezes at football practice….. And most of all….it brings us another day closer to Heaven and being with my girls……
For those mothers who are a member of our unfortunate group, I send you peace and prayers that your valleys are getting more and more manageable and journeys into them are farther and farther apart. For those mothers who have never suffered such an unspeakable loss, enjoy your blessings and soak up every second of your child’s love. They are only little once, and sometimes in cases such as mine, they are forever young, so know that you are blessed and relish your time with them.
Good Night May….. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…. EVERYBODY LOVES MEGHAN!!
Good Night Tay…… Wish ya could’ve stayed awhile!!
Carol
Mom2Angelz
Monday, October 1, 2007 12:06 AM CDT
October 11, 2007....... Ummmmmm, hello....... To those (all two of them) "geniuses" who "think" they can come on and attempt to chastise me on Meghan's guestbook, I "HOPE" you know that I have control over everything on this page including the guestbook entries....If you don't like what I write, I could care less, and furthermore, keep writing...it gives me great pleasure deleting your idiotic opinions.. because they are just that.... "your opinions" and they mean nothing to me......AND REALLY, learn how to spell check.... your typographical errors truly shows your intelligence level.... so waste your time elsewhere because there are not enough hours in the day for me to point out how idiotic you really are.... Just know you're not welcome here and I "HOPE" it rains again next year....and the next, and the next.... oh wait, by that time, the two of them will have given up on "The Society"... I'm a betting woman.... this is a no-brainer.
Ahhhhhhhhhh Poetic Justice………. I knew Meghan was always protective of her mommy, but really, this past Saturday she really did outdo herself. As some of you Stalkers know, Everybody Loves Meghan chose not to participate in this year’s Light the Night in Orlando because two people who I thought at one time were my friends, chose to ruin a night that really belonged to Meghan and the people who love her. Instead of saying, you know what Carol, we know this means a lot to you, we won’t attend so that you all can continue what you have been doing since she was diagnosed and honor her memory as you have done in the past. But, as it turns out, they both showed their true selfish sides and neither of them showed any class (no surprise there) and tried to ruin a night that Meghan’s friends and family cherished.
But……. Meghan, never to be outdone, had other plans for those who try to mess with her mommy and her special night……… Yep, Meghan opened up the skies and when I tell you it poured and poured and poured…. THAT is an understatement. Tommy Lee and I were driving from Ormond Beach after his football game over to Orlando to the Hard Rock Hotel for some fun and their annual Battle of the Bands. After an absolutely beautiful morning and perfect football weather, we head west toward Orlando at about 1:00 pm….. this is when I see the skies up ahead….. dark, dark, dark ominous clouds sitting directly over Lake Eola and the entire Light the Night location. And I start laughing…….laughing so hard I can barely see…..and all I can say to Meghan is “you go girl”! Let it Rain, Let it Rain, Let it Rain…..And boy did she ever!! The winds blew, the rain came down in sheets, and I’m sure as my two “friends” were setting up their little Light the Night tent, which probably was on the verge of being blown into the next county, they got soaked beyond recognition…. And I laughed some more…..There couldn’t have been one dry person within a 15 mile radius of downtown Orlando….It was as if Meghan was sitting directly over Lake Eola with a bucket just dumping rain and wind all over them all the while laughing at them with her froggy voice. And you know what???? It kept coming, and coming…. buckets on top of buckets….. And the closer it got to 5:30 and the official start time, it rained harder and harder and the wind blew, stronger and stronger. With each and every burst of thunder, and with each passing downpour, I laughed harder and harder thinking that Meghan was telling two people not to ever mess with her mommy again…… In the end, the weather cleared up- well, it stopped raining anyway so the event took place, with giant rain puddles to be sure and not before Meghan made her mark on this year’s Light the Night soaking everything and everyone in her path :o)
So, I “HOPE” you all had a great weekend. I know we all did laughing at what had to be the funniest thing Meghan has ever done since she became an Angel.
Good Night May….. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…. EVERYBODY LOVES MEGHAN!!
Good Night Tay….. wish ya could’ve stayed awhile.
Carol
Mom2Angelz (One Angel who believes greatly in Poetic Justice- although really, knowing Meghan, she had Taylor right beside her dumping the buckets too)
Tuesday, September 25, 2007 9:28 AM CDT
WOW- This Entry had not even been online a half hour before I got a response (albeit a rather lame one) to this journal entry from those who apparently have very, very guilty consciences......Wonder why they even come by and read Meghan's Journey anymore...... It's certainly not like they care......or are even wanted here.
Life is disappointing. Love is disappointing. Friends are disappointing. Are all of these statements true? To some degree yes, to another, no. Life? Disappointing? I can’t imagine a bigger disappointment than Meghan’s cord blood transplant not working and her not being cured of that insidious cancer. Is love disappointing? I suppose so. This one I think is curable, so I’m not as passionate about being disappointed in love. Friends Disappointing?……. Ah……. There’s one……. I have several trusted friends whom I have known since childhood and remain great friends with. Those friends are the ones you don’t have to talk to in years, but if you need something, anything…… they are the ones who are there. Before Meghan they were here, after Meghan they are here. I also have friends who I met only because of Meghan. Those too are friends I can count on. Then there are those who you “think” are your friends. Two in particular come to mind and truthfully, I should have known better, but that is where the disappointment comes in.
As a Stalker, you know how much my friends and family enjoyed participating in Light the Night for The Leukemia & Lymphoma Society. This year, Everybody Loves Meghan will not be there. We will not be there because of two people who I thought were friends who turned out to be anything but. Although ELM has raised money this year for the Society, we will not be out there walking in memory of Meghan, or of Alexandria, or of Cassidy, Mikey, Miranda, McKenzie, Kailie or any of the other children who are survivors or who have lost their battle and whom we have met along our journey for one simple reason. I would not be in the same vicinity with those two for any amount of money. Now, you would think that since it was MY daughter who died of this disease that they might show some class and bow out and not be at this event so that we can honor Meghan as we have done since her diagnosis in 2002. But, as it turns out, their selfishness has won out and therefore, ELM will not be there. If either one of them had the horrific loss that I endured, and in honor of their child, tried to honor his or her memory by doing something for a cause, and we for whatever reason (and trust me, the reason was so incredibly silly, that I still can’t believe two adults are really that selfish and hungry for attention to let - and mind you, [I thought it was a friendship] go, I know now it never was), but in any event, had this “friendship” ended and I knew that they were involved in a cause because of THEIR child, I would do the honorable thing and withdraw my involvement so that there was no discomfort for anyone and they could continue something they were passionate about. That is not to say that if I felt that passionate about it, I wouldn’t or couldn’t raise money and donate silently behind the scenes, I would just not be there in person so that the other mother would be able to continue something that she felt very strongly about in honor of HER child (not mine)……….. So, as you can surmise, this did not happen in this case and these two are so classless that they have completely invaded something very personal and something very meaningful to me and Meghan by insisting on walking at Light the Night in Orlando this weekend even though they knew that by being there, they were forcing us to not be there.
So to you two, I “HOPE” you are happy with your decision to trample on my heart as you have done. The one thing you won’t trample on is Meghan’s memory and she will be remembered in spite of you.
Good Night May…… Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…. EVERYBODY LOVES MEGHAN!
Good Night Tay…… Wish ya could’ve stayed awhile……
Carol
Mom2Angelz and Two Less “Friends”
Wednesday, August 1, 2007 2:54 PM CDT
SEPTEMBER 10, 2007
I got the call I was dreading this morning. When my cell phone rang and I didn't recognize the number, I answered it thinking it was a wrong number. When I hear the voice on the other end of the line say her name, I responded "who" not clearly grasping who this person asking for me was. It's Nicole she said. Ann's friend. Oh no is all I could mutter. She said yes, Gregory passed away this morning and Ann wanted you to know. My heart sunk and it has not returned to its normal place in my sternum even as I type this entry. I knew this call was coming, but every day.... every day since February when we were told that Gregory was not going to win this battle, I have been cautiously optomistic. Maybe he will beat the odds again I kept thinking. Certainly cancer can't win again. And as I sit here typing this, I realize cancer didn't win "again", it lost its battle because Gregory is now meeting Meghan and he too is now healed. For those of us left here on earth in our mortal bodies, we grieve. For those with wings, they soar. So tonight, as I try to rest my tired, weary head from yet another blow to my heart, I say Soar High Gregory. You continue to be an inspiration to all of us here who knew and loved you and for those who followed your story, you have forever changed their lives as well.
To my friend Ann..... I love you and if I could take even an ounce of your pain away, I would. Unfortunately, this journey you have now entered is nothing like you have seen before and I detest that you have become "one of us", but the fact is you have, and you are forever changed and for that I am most sorry. Peace to you my good friend.
Check out the new picture of Meghan in the Photo Section....... Gotta Love the Pout :o)
Please go to www.womenofworth.com and click on "Stories of Worth". On the right side of the page it will give you additional "stories of worth" and Meghan's Journey is featured on this site.
As you may (or may not) have noticed, I have changed the heading above. As most of you stalkers know, Meghan's Journey has always been about healing. When I first started it, it was certainly about healing Meghan. Every entry was about how she was doing, what her counts were, could we have visitors, were we in the hospital (again). and on and on and on.. Entry after entry was filled with hope, desperation, and some of my rantings (ok, a lot of my rantings).. After Meghan earned her wings, even though I didn't see it at the time, this journal morphed into being about my grief, my healing and the grief and healing of my entire family (and of course, not to be left out...my rantings- some crazier than others).
When I heard the quote, "When Life Kicks You, Let It Kick You Forward", I thought "that's it!" That is what I want Meghan's legacy to be. Not that we, as her family and friends shriveled up in the fetal position when she died of leukemia, (ok, well I did do that at times....) but that BECAUSE of her dying of leukemia, we, I, her family, you, her friends, and complete strangers, have looked at life and its hardships, stared them down, and did something good in spite of it all. BECAUSE of Meghan and her journey, hopefully we have all softened around the edges. BECAUSE of Meghan and her journey, hopefully we have all learned to be a little more kind and understanding. BECAUSE of Meghan and her journey, we have all kicked it forward helping another in need.
As we get closer to another year of Light the Night all around the nation, we should all be reminded that when life kicks us...let it kick us forward. Let us, Everybody Loves Meghan, be the ones who change someone's life by bringing in the dollar that finds the cure. Please visit http://teams.lightthenight.org/EverybodyLovesMeghan and join our team. If you would prefer to donate to our fundraising efforts, click on one of the participant's names and it will take you to that person's individual page and you can donate safely and securely there. It all goes to ELM so regardless of the person you pick, they are an ELM team member and that money will go to The Leukemia & Lymphoma Society in honor of Meghan. Please take a moment to kick it forward and donate. We all thank you.
Before I end, I want to take a minute and mention Gregory Weber Lang. I have written many times about him here on Meghan's Journey and have talked about his courage and strength as well as the strength and courage of his mom, my good friend, Ann. Unfortunately, Gregory is not doing well and each day is becoming more of a struggle for him. He has been blogging on his website journaling his feelings and thoughts regarding his life and his daily struggle with cancer. Please take a minute to visit him and read his amazing story of courage, strength and hope at a very unfortunate time in his life. www.thegregoryweberlangfoundation.org.
So in memory of Meghan, and in extreme honor of Gregory as well as the many, many others who struggle daily with their hardship, please kick it forward for them, for us, for yourself.
Good Night May... Mommy Loves You, Daddy Loves You, Tommy Lee Loves You... EVERYBODY LOVES MEGHAN!
Night Tay..... Wish ya could've stayed awhile.
Carol
Mom2Angelz
Sunday, July 22, 2007 5:55 PM CDT
JULY 23, 2007
HAPPY SEVENTH BIRTHDAY MY BROWN-EYED GIRL…….
Type, type, type….. delete, delete, delete….. start over, start over, start over……. Seven Years Old…….sigh……. How is it that Meghan didn’t get to see her seventh birthday? What planet didn’t align properly on July 23, 2000 when she entered this world happy and healthy? What was it about Meghan, a seemingly unassuming healthy, happy seven pound fourteen ounce newborn baby girl born to a family who (to use the word “overjoyed” when she arrived, is definitely an understatement), that made her get Leukemia and not the baby in the nursery next to her? What was it about Meghan that not only did she have to get Leukemia, she had to get Bi-Phenotypic Leukemia? What is it about Bi-Phenotypic Leukemia that is so hard to treat? What is it about Bi-Phenotypic Leukemia that gives the patient diagnosed with this horrible disease such a poor prognosis before treatment is even begun?
It might appear that I’ve moved away from the “why’s” to the “what’s” and the truth of the matter is, I haven’t. I still want to know WHY? But I “think” I have resigned myself to the fact that I may never know the answer to this question and because I can obsess about anything, I have been wondering about the “what’s”. Such as, is every aspect of your life already destined to happen in one particular way or another? Can your path be changed because of something you do or don’t do on one particular day? If so, IF I had run screaming from Shands with Meghan wrapped in my arms BEFORE radiation, and BEFORE the most intense chemotherapy given, would she still be alive? Were my gut instincts…. or were they maternal instincts…… right? Or…… was her destiny to be an Angel right from the minute she was conceived?
I wonder all of these things all of the time. I wonder why our little friends from the hospital had to join Meghan in Heaven. Were their lives destined from the moment they were conceived? That might explain all of the nights, crap, mornings, noons, and nights, each of us as the parent of a child with cancer, silently (or for some of us, not so silently, screamed to please let it be us. Let us take the cancer away from our babies, and let us be the ones who are sick. We’re stronger, we can handle the battle. These kids……. These sweet little innocent kids…..Back to “WHY” I go……… And here I will stay in my “WHY” hell, wondering, waiting, trying to come up with some answer (even if its not a good one…..at this point, I think I will take anything that closely resembles an answer) and spend another birthday wishing that instead of visiting a gravesite, I was making last minute preparations, planning a birthday party and laughing and singing Happy Birthday Cha-Cha-Cha to a froggy voiced little girl who deserved to have the best 7th birthday any little girl could wish for. And that makes me think…. Would her voice still be so froggy? In the words of Meghan….. “let me thiiiiiiiiiiiinnnnnnnnkkkkkkk” :o)
Well, for what its worth, we will spend tomorrow remembering Meghan and wondering what she would look like, how she would sound, and of course, wishing that leukemia had never entered our family. But really, that’s not unlike every other day…….. Missing her is a part of our daily lives and we all remember her with such happiness and intense heartache. Babies aren’t supposed to die.
So, I hope that each of you take a minute today and silently, or as loud as you wanna be, send Meghan a Happy Birthday Cha-Cha-Cha…. I’m sure she’ll hear you…. That giggle in the wind…….that would be Meghan enjoying her special day in Heaven with all her Angel friends……
Good Night May…… Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…… EVERYBODY LOVES MEGHAN!
Good Night Tay…… wish ya could have stayed awhile…..
Love and Kisses to you Meggie May……..Happy, Happy Birthday Angel Pie
Carol
Mom2Angelz
Friday, May 18, 2007 3:15 PM CDT
Well Stalkers….. ELM is off to a GREAT start this year in our fundraising efforts for Light the Night!!!!
Tommy Lee and I won FIRST PLACE in the Family Fun Volunteer Contest winning $1,000.00 for The Leukemia & Lymphoma Society!!!!!
I had entered this contest months ago and received an e-mail sometime in March saying that we had been selected as one of the finalists. I had to give them references and talk with some of the judges about why we volunteer and what it means to our family. I know they called my references, however, after a couple of weeks when I had heard nothing back, I thought we did not make the final cut. Then, night before last I open a letter (which I thought was going to say- thanks for entering- good job), but to my surprise it said we had won FIRST PLACE!!!! Our story will also be in the October issue of Family Fun Magazine.
So, with over $1,000 already in our pockets, we are ready to kick our fundraising up a notch! If every one of Meghan’s Stalkers would write a $5.00 check made payable to The Leukemia & Lymphoma Society and mail it to me, we can meet our goal and surpass it! I know with a little bit of help, we can make our dream of a cure a reality…. So…. Please, get your check book out and write a check.. no matter how big or how small. If you would like to do more to help ELM, please contact me personally at mmm723@aol.com and I will do all I can to help you raise money for our team. We’d love to have you so even if you’re not in the central Florida area, you can help and it will mean something.
I haven’t said this in a long time, but please don’t forget to donate blood and if possible, platelets. The blood banks are always in need of blood and it is an excellent way to help your local community.
Good Night May….. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…. EVERYBODY LOVES MEGHAN!!!
Good Night Tay….. wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Friday, April 6, 2007 6:46 PM CDT
New Photo on Photo Page!!!
Happy Easter Sweet Meghan and Taylor….. I hope the Easter Bunny brings you the biggest, most beautiful Easter Baskets ever.
Hi Stalkers…… I promised an update and really, this wasn’t the one I had planned, but I wanted to share an Easter story about Meghan. It was only days before she was diagnosed. Never in a million years did we expect that less than two weeks later, Meghan would be in ICU at Arnold Palmer making her first fight for her life. I was not in the room when she went into respiratory distress that evening. Her dad and Aunt Laurie were in there. Thankfully I was hiding somewhere burying my head in the sand as the magnitude of what was happening with her diagnosis was hitting me. I didn’t know at the time, that something awful was happening in that hospital room. But like anything else Meghan did, she must’ve just wanted to scare the breezes out of a few people to remind them who exactly was the boss. None of this has anything to do with my story, so, I’ll try to stop interrupting myself and get on with what I wanted to say tonight.
Anyway, every Easter we go to my sister Laurie’s for Easter. It happens to be her very favorite holiday (well, at least it used to be as she tells it)….. Anyway, I loved having a girl, and Meghan was usually dressed in the cutest dresses and of course…..shoes ;o) So, the night before Easter we’re at my sister’s dyeing our Easter Eggs. Of course, the boys (Tommy Lee and my nephew Rian) are dunking eggs and having a good ‘ole time. Well as you can imagine, “you know who” was NOT going to sit idly by and not get in the mix. I however, was thinking of the dress……Aunt Laurie was thinking FUN…… So she sits Meghan right up at that table and puts every color dye in front of her and about a dozen eggs…..PLOP! Hands, eggs, elbows……Easter Egg Coloring is FUN (and I might add……MESSY!!!!) So, I can remember every giggle, and every silly egg she colored keeping up with the boys…..she would take them out WAY too quick because throwing a new one in the dye is MUCH more fun than sitting there waiting for them to color….. So that night, as I stressed myself out about how to clean that dress, Meghan went to sleep with one of the most precious memories in her life and her last healthy holiday ever.
So this weekend, as the Easter Egg dye comes out, and the kids get a little bit crazy over the eggs……. Remember a little Angel who loved to color eggs and her mom who would give up a thousand dresses for one more Easter Egg Coloring chance with a sweet brown-eyed little girl…..
Happy Easter Everyone……. May you all have a peaceful, happy, safe and most importantly, HEALTHY weekend (LIFE).
Good Night May….. Mommy Loves You…. Daddy Loves You…. Tommy Lee Loves You…. EVERYBODY LOVES MEGHAN!!!
Good Night Tay……. Wish ya could’ve stayed awhile!
Carol
Mom2Angelz
Thursday, December 28, 2006 10:07 AM CST
MARCH 12, 2007:
SEE PHOTO ALBUM FOR PICTURE OF HEARTS AND HANDS CLUB BOOKSHELF......
MARCH 1, 2007:
Sorry I haven't updated in awhile... it'll be soon, I promise :o)
This past Saturday was The Leukemia & Lymphoma Society's 6th Annual Diamond Gala. Since our Hearts and Hands Project did so well last year, we are continuing the tradition and making this project a yearly event.
Our Hearts and Hands project this year was a Dollhouse Bookshelf which incorporated the hearts and hands tiles on the dollhouse roof as well as the shelves. There were a total of 10 hearts and 10 hands representing all of our Angels as well as those still battling their disease.
This year our little project raised $4,000 to again be the highest auction item at the event. I'll be posting pictures of the individual tiles soon..... Till then.... Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You... EVERYBODY LOVES MEGHAN!!!!
Good Night Tay... wish ya could've stayed awhile!
Well Stalkers…. I hope you all had a wonderful holiday and that everyone is ready for the new year. I came on to write about my friend Ali. She has already beaten me to the punch on her caring bridge site (www.caring bridge.org/visit/alicecaceres), and mine of course, will be far less funny, but hopefully will make you all stop and think, and perhaps, and most importantly…. help us find a cure.
Yesterday I took a drive over to see Ali who has taken up residence at H. Lee Moffitt Cancer Center in Tampa. Unfortunately, Ali knows she will be there quite awhile (they are projecting her to be in-patient until February after her second bone marrow transplant). So I walk in and have to laugh because her entire room (and really, I mean entire room) is decorated with photos, cards, notes, etc. I mean really, no wonder the girl can’t sleep- she has about a million eyes on her all night and that’s just from the pictures! Sheesh- do I have to diagnose “everything” for you Ali????? Anyway, as usual- she looks beautiful (don’t you just hate someone who has a very, very serious illness, has been in the hospital since November) and looks far better than anyone in or out of the hospital? I mean really, if there was a Cancer Playmate of the Year- she would be it! Well, not that I’ve seen her like “that”….. I’m just sayin- this girl looks fabulous! But THAT is the irony of leukemia. She may look great on the outside, but on the inside, this monster. A monster who has no idea who he is dealing with.
So we spend the afternoon laughing and talking and laughing some more. Funny how you meet some people and its as if you knew them all your life and even though you may not have seen them in a while, the minute you see them again, its as if time has never passed. We may have been separated at birth (although that would make me MUCH younger than I am…..hmmmmm, yep- pretty sure that’s it- I was separated at birth from my twin Ali…..oh gosh- another problem…… we look nothing alike (lucky Ali)…… ok, well maybe we weren’t separated at birth, but I know this- we will always be connected no matter what.
A little later I got to meet Ali’s husband, Michael. What an amazing man he is. Not only did he go thru this once with her, he has been by her side again throughout every procedure, sleeping on the rollaway bed every night,, and eating hospital food every day (except when Ali’s mom sends her famous chicken soup- don’t you just love a mom who can cook and it makes “everyone” feel better???) Anyway, I digress…. Back to Michael…… I’ve read Ali’s journal and guest book, and everyone who knows him always talks about what a great guy and a loving husband he is. That is such an understatement. He is truly her Angel. What a gift she has been given in him. I know, I know… she’s pretty perfect herself… but between the two of them…. Not a better couple exists and that I am sure of. So Michael, you are my hero as well. Thank you for taking care of my friend, and thank you for loving her unconditionally “in sickness and in health” .
As I was driving home after my visit, I began writing this journal in my head. I wanted to tell you all so much about these two people and what a courageous woman Ali is. I haven’t even gotten to the point about their son Mikey who just turned six and who has been away from his mommy and daddy for months now (with visits in between)…… Anyway, Ali has a huge family and her brother has taken Mikey and is caring for him. I know Ali feels so safe knowing Mikey is in great hands with her brother and his family. So thank you too Ali’s brother…..
Wow, anyway- I was driving home writing this in my head (I really do need a Dictaphone)….anyway, I was thinking how wrong this whole thing is. How is it that someone who has been to hell and back and walked away strong enough to tell her story… how is it that she can relapse? So I began my interrogation of God (again)…. Poor Guy……I’ll probably live forever because HE does not want me at his doorstep asking questions! And I have plenty of them……but I guess He already knows that….hmmmmmm wonder how that’s gonna work for me????? Oh well, we can only wait and see…..
If I ever get to my point here in this journal it might just be a miracle……. Anyway, my questions… so how is it that after four years and a good, healthy, strong life, Ali relapses? She lives a very good life, she is a good citizen, she is a great mom, she doesn’t hurt tiny animals…. How is it that SHE relapses? When people have told me (a) God only gives you what you can handle, I say bull-sh*t! That is the biggest crock I have ever heard! When they say (b) he is teaching us a lesson that we may not yet understand, I say bigger bullsh*t! What lesson do we learn here? Ali has made it her crusade as well, speaking at events for the Leukemia Society. She has become an important patient advocate. She has helped other patients experiencing some of the things she has been through, and she has held the hands of families whose loved one has passed away. What lesson are we learning when someone who is so good and true, gets sick AGAIN? Wasn’t once enough???? I think, in my humble, mortal opinion that it was MORE than enough. It was more than enough the first time, and this is just plain bullsh*t! I’m telling you, God does NOT want me at his doorstep! I am angry, I am angry, I am angry, (did I mention I am angry??) that this has happened to my friend again. I am sad and I am scared. Isn’t it enough that this family has been to hell and back? Isn’t it enough that they need her? Isn’t it enough that she has been through a very horrific illness? So my question to God is… WHY? Why Meghan? Why Alexandria? Why Cassidy? Why Cody? Why Jillian? Why Kailee? Why Seth? Why Jalen? Why, why, why? What is it their deaths have taught us? What is it about Ali’s relapse that will teach us??? That Leukemia sucks? We all could have gotten that knowledge without losing our babies or having our friends get sick again. Has it taught us to be better people? Again, we could have learned this without the heartbreak, and frankly, I could have taken a hint if I needed to “buck up” in an area or two God….. And lastly, has it taught us to love more deeply? If that’s possible, maybe. So why then, would you put my friend Ali in harms way again? I don’t think I could love her anymore than I do. And really, the deeper it gets, the more it hurts so where is the upside of this?
When I think of Meggie in Heaven, I think of her sweet face, and those eyes….. Wow- did she have beautiful eyes….her froggy voice singing some silly song, and I miss every thing. I miss her dirty diapers. I miss EVERYTHING. So why? Why is there a disease that “should” be curable out there that isn’t? When we spend kazillions of dollars in a war we should be nowhere near…. I wonder…. How much money will it take to cure this disease? I bet we throw a couple of kazillion dollars into research and we’d be home free by now. So I invite…. No, I implore each of you (ok the two who still read this dribble anyway), to take out your checkbook and write a check to The Leukemia & Lymphoma Society, 3319 Maguire Blvd, Suite 101, Orlando, FL 32803. Make sure to put “In Memory of Meghan and For Ali’s Life” on your check. I suppose it’s the only thing we can do besides pray, and frankly, most of my prayers are in the form of a question… guess I should go on Jeopardy…. Or maybe that’s where I will end up (if I make it upstairs) to the Heavenly Jeopardy Studio….. Ummm, God…. I’d like to buy “Why did my daughter have to die of Leukemia” for $500 please…… I promise to make my answer in the form of a question…….
So I leave you all with a question….. What will you do to help my friend Ali? Will you donate money? Will you donate blood or platelets? Will you volunteer for the Leukemia Society? Or most importantly, will you take a minute out of your day and say a prayer for her? As I ended Meghan’s journal entries when she was fighting…… Prayers for a healthier day to you Ali……My friend…..
Good night May…. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. EVERYBODY Loves Meghan!
Good Night Tay….. Wish ya could’ve stayed awhile…..
Carol
Mom2Angelz
Friday, November 24, 2006 10:36 AM CST
Please take a minute to stop by my good friend Ali's (see journal entry below) new caringbridge page and send her a nice note (make sure you let her know you're coming over from Meggie's site so she's not confused by all these strangers popping in :o)
www.caringbridge.org/visit/alicecaceres
Wow….. So we were “supposed” to be thankful yesterday. HA! Let’s see….. Hmmmmmmmm, ah yes… thankful…… How can you be thankful when TWICE within less than two weeks I have spoken to TWO very dear friends who have had their worlds turned upside down AGAIN from cancer????? To say I’m bitter is an understatement. To say I’m crushed, battered and beyond heartbroken is an even huger (is that a word?) understatement.
So first, my good friend Ann emails me to tell me her son Gregory who has been battling childhood cancer since he was 3 YEARS OLD, and who is now 18, a senior in high school and who just last year had relapsed with another form of cancer has relapsed AGAIN. This is the same 18 year old handsome man who had his leg amputated when he was just a child, and who now, has to be told he has again relapsed and is waiting to find out if it is yet ANOTHER form of cancer or a relapse of one of the other two forms he has already BEATEN. So, I call her immediately and we talk. And she asks me the one question no parent should ever have to think about yet alone, ask. “How did you prepare yourself for Meghan’s death? She says, I want to be prepared too.” So I pause and say, Ann, as much as I knew it was coming, and as much as I tried to sugar-coat my entries, you will never be prepared and IF that day comes for you, it will be as if you have been hit by a truck that you never saw coming.” There is NO way to prepare yourself for the complete and utter feeling of helplessness, grief, and emptiness you will feel. No matter how long you play “the day” over in your mind, before it happens, you will not be close to the reality. Not by a longshot. If I could express just how “off” a person can be at expecting emotions, I wouldn’t come close as there are truly no words to describe the loss of your child. Not even on one of my best writing days, could I ever explain how awful you feel and how helpless. So, Ann had to sit down with her son that afternoon after he came home from school and tell him the news. And then tell his sister. And then tell his step-dad. And then, and then, and then. The calls and emails she would have to make AGAIN to family and friends is the cruelest situation to be in when you’re the mom of a cancer patient. But this is our world. I’ve joked before about me getting the Super-Sized Crap Sandwich Happy Meal with no toy, but Ann I guess has been given the Mega-Super-Jumbo Sized Happy Meal with a hole in the bottom of the bag…… I didn’t mention yet how not only has Ann’s son Gregory battled cancer, but his younger sister Kaitlyn had Leukemia when she was a child. Oh, and her husband (their dad), died of cancer as well. So you see, Ann throughout all of this, has not only raised these kids with all of their health problems to be great kids, good students and excellent role models, she herself is one and probably doesn’t even know it.
And now there’s my friend Ali. Ali is a young mother of a “almost 6 year old” little boy who battled AML Leukemia and underwent her bone marrow transplant in 2002 and who I met when she found Meghan’s Journey. She and I began an internet support system while she was in the hospital and which grew after she was discharged. She came up to Orlando for Team In Training’s Disney Marathon and I met her face to face there. From there, we have remained great friends and I cannot tell you how much she means to me. Well this past Wednesday, I receive another email this one from Ali and the heading is “Sad News About Ali Caceras”. So, I cock my head to one side and before opening, think, oh this silly girl- what is she up to now???? And I read her email. And I begin getting this awful feeling in my stomach as the reality of what she has written hits me like a ton of bricks. After being 4 YEARS POST BONE MARROW TRANSPLANT from a PERFECT MATCH SIBLING DONOR, Ali has relapsed with her AML. Ali will be admitted Monday to H. Lee Moffitt Cancer Center in Tampa to begin chemotherapy in preparation for getting her back into remission and then on to another Bone Marrow Transplant. So with tears streaming down my face I call her immediately, and she picks up the phone while she is ALREADY in the hospital receiving a blood transfusion, and begin yelling at her that SHE HAS TO BE ALRIGHT! I had completely lost my mind yelling at a woman who has just been told she has relapsed and here I am like a complete loon yelling at her to be alright. Now mind you, I’m crying my head off and instead of being this supportive friend, I’m blubbering and yelling at her. Thankfully she was drowsy from the pre-transfusion Benadryl they had given her and HOPEFULLY won’t realize that I was an idiot. Not just an idiot, a complete mindless idiot. So Ali, I’m sorry I yelled at you but YOU REALLY DO HAVE TO BE ALRIGHT!!!!! In all my ranting and crying where I’m supposed to be lifting her spirits, she says “I’m so proud of you and your Light the Night Team. You amaze me.” Ummmmmm, I amaze her????? Damn that Benadryl really does work!!!!!! So she goes on and asks me to keep up the good work and to find a cure for her. And I promise her I will. I promise that I will never give up raising awareness and much needed money to make sure no one else has to ever have a conversation like this again……
So thankful????? Not so much…… Determined? You freaking betcha! Everybody Loves Meghan will not stop until this disease is destroyed.. But for that, we need your help. Remember that you can always send a donation to the Leukemia Society (email me if you want the Central Florida Chapters Address) and no matter how small, it is a step towards a cure. Don’t forget to note that it is for Everybody Loves Meghan… We have a goal and we will reach it!
So Ann, Tim, Gregory and Kaitlyn, here is to you all. I lift my glass to you for being the people you are and for never giving up.
And to Ali, I promise you I will never give up. Take care my friend, I will be heading over to Tampa when you give me the “all clear” to do so.
Please don’t forget to donate blood and platelets. The need for blood is neverending.
Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. EVERYBODY Loves Meghan!!!!
Good Night Tay…….wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Friday, September 29, 2006 7:36 AM CDT
Well Stalkers, today Tommy Lee and I will take a huge jump into the unknown as we move out of the house we have shared with his dad and Meghan and into our new town home where there are no hidden Meghan socks anywhere. Tommy and I were divorced in June and he has been kind enough to allow me to stay in what was “our” home until I found a place for T3 and I to live. Thankfully, I found a beautiful place very close to where we currently live so that Tommy Lee can continue to have a close relationship with his dad and me.
My emotions are of course all over the place. I’m sad that our marriage has ended. I’m sad that T3 is now going to grow up the byproduct of a divorced household, I’m sad that I am leaving “the crying room”, I’m sad that all the memories of Meghan pushing her “choo-choo train laundry baskets” will just be in my head and heart and I will not be taking that same route to the laundry room again. I’m sad that the playroom that was once filled with laughter (or with Meghan sitting on top of Tommy Lee’s chest beating on him to hand over a toy she wanted) will also only be a memory. I’m sad that on top of everything our family has been thru, divorce was the end result. Sadly, its not uncommon. When you read “the books”, you find that the stress of losing a child will do one of two things….. Bring you closer than you have ever been before, or as in our case, build a wall so high and so thick, you can never feel the same way about the other person again.
You would think, boy you two have been through the absolute worst, how can “anything” tear you apart? But that is just it. We have been through the absolute worst, and we didn’t survive it. Not as a couple anyway. We have however, survived it as a family in an extreme effort to make sure Tommy Lee continues to be loved, feel loved, and feels that he has not “lost everything”. So, when people ask me “why did you stay in Titusville?” “Why didn’t you move back to Orlando, that’s where your office is and that’s where your family lives?” The answer couldn’t be simpler for me. Tommy Lee. As amazing as it seems, life is not “all about me”. It’s all about him. Keeping him secure. Keeping him in the same school. Keeping him close to his friends. Keeping him close to his dad. Keeping the house that he knows so he can come back here and stay with his dad any time he wants or needs to.
So, today as I continue to pack up “the little things”, I come across memories. Not only of Meghan, but memories of what used to be. Tommy and I built this house. We both designed it, we both loved it and we both loved in it. So, to have this house go out of “our family” was not an option for either of us. So Tommy keeps the house and I have found a great place which I am excited about.
So wish us luck on our new lives together and apart and thanks to everyone who continues to be a part of Meghan’s Journey.
On a separate note: Alison, Alexandria’s Mommy is going to have a BOY!!!!! And Chris, Cassidy’s Mommy is going to have a GIRL!!!!!!! AND… my niece Christina is expecting and we should find out maybe Monday if “we” are in the “Blue” or “Pink”…….. Pray for healthy, happy babies for everyone!!
Congratulations to all of you!!!!!! And PS: I’m free to baby sit as needed :o)
Light the Night Update: Orlando’s total has gone well over $22,000. Our Ohio team raised over $1600. Our Alabama team raised $25., I haven’t heard what our New York team has done yet.
Good Night May…… Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. EVERYBODY LOVES MEGHAN!!!!
Good Night Tay….. Wish ya could’ve stayed awhile……
Carol
Tuesday, September 19, 2006 5:49 PM CDT
Well Stalkers……. Everybody Loves Meghan did it!!!! We surpassed our goal of $20,000 for Light the Night bringing in over $21,800 (and we’re still counting)!!!!!
I’ll update soon…. Just wanted to announce our total!!!
Good Night May….. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. EVERYBODY LOVES MEGHAN!!!!
Good Night Tay…. Wish ya could’ve stayed awhile…….
Carol
Mom2Angelz
Monday, August 14, 2006 8:06 PM CDT
Our Hearts and Hands Table made a HUGE splash in Nantucket and sold for $11,600.00 this past Sunday night!!!!! I received a call Sunday night about 10:30 p.m. from the man who had originally bought the table here in Orlando for $5,000.00 and who took the table up to Nantucket to auction it off up there. The first thing he said was I have good news and I have great news….. I said “what’s the good news?” and he said the table sold for $11,600.00!!! I was absolutely floored and couldn’t imagine how this could get any better. That’s when he told me that the people who bought it, bought it for ME and are sending it back to me to have!!!!! Can you even believe that???? The Hearts and Hands Table is coming HOME!!!!!!
The way we worked it out was that we will split the Nantucket proceeds with the Central Florida Leukemia Society so we will be getting roughly another $5,800.00 back in the central Florida area because of MY table!!!!!
I just wanted to hop on and let everyone know how it went…. I’ll update soon- we’re working on LIGHT THE NIGHT…… September 16, 2006 at Lake Eola in Downtown Orlando…. See ya there!
Good Night May…. Mommy Loves You….. Daddy Loves You….. Tommy Lee Loves You…. EVERYBODY Loves Meghan!!!!
Good Night Tay….. Wish ya could’ve stayed awhile….
Carol
Mom2Angelz
Saturday, July 22, 2006 9:42 AM CDT
UPDATE- SUNDAY, JULY 23, 2006 (HAPPY BIRTHDAY MEGGIE MAY)!!!!
I had no plan on updating again today, but I guess first, thanks everyone for the birthday wishes for Meggie. I’m sure she hears each and every one of them and it makes her giggle in that froggy voice of hers :o) So, the reason I am back on here is to tell you how silly that little girl is of mine and to show you how she comes to me in the strangest ways, at the strangest times and in the strangest places.
Last night I was at my boss’ in Apopka (a little town south of Orlando) for her 50th Birthday Bash. This morning I headed to Mount Dora (even smaller town even more south of Orlando) to visit my friend Kim who lives right downtown and to have some lunch. Well, downtown Mount Dora is famous for the quaint little boutiques, shops and restaurants. We begin trekking along the streets going into each little shop as they come up. We walk into one store and right as I enter I look to my right (now all of the stores here are filled with a million different things to look at, they’re very busy in the way they have things set up, so you have to stop, take your time, and really look at “everything”). Anyway, I walk in the door, immediately look down to my right and there sitting on a little coffee table is a magazine. So what right???? Well, wrong, the first thing I notice about this cover (See Photo Album for Picture of the Magazine Cover) is along the bottom in all caps say “HAPPY BIRTHDAY MMM”. Are you with me still???? Today, July 23, 2006, I walk into a store and there is a magazine that says “HAPPY BIRTHDAY MMM”!!!!! I turn to my friend Kim, and say, look at this…. MMM…. Meghan Marie Mack… SHE’S MMM!!!!!!! She says “that’s really weird” and I say “No…..that’s Meghan”. So I pick the magazine up, and across the top it says “She’s All Woman MAGGIE MAE”. I’m standing there shaking my head and smiling because of course I called Meghan Meggie May. I was amazed that my little stinker put me in that store, at that time, on today’s date and left me the most direct message I have EVER received from her. I guess that’s ONE way of “making” everyone remember her birthday!!!! Happy Birthday Sweet Pea….Come On and Dance with Me…… Love you and thank you Meggie… you MADE MY DAY!!!!!!
It was a Sunday, just like tomorrow when I knew someone wanted out. As with everything Meghan did, it was on her terms, and even though I was only at 38 weeks, Meghan decided she had some visiting to do. So, exactly six years ago tomorrow, Sunday, July 23, 2000 Meghan Marie Mack was born. As with Tommy Lee, I did not find out during my pregnancy if I was carrying a boy or a girl. I love surprises and the gift of being handed a baby and the doctor saying “It’s a Boy” or “It’s a Girl” is probably the biggest emotional surprise you could ever have and I wouldn’t trade hearing those words for anything.
So, a “Sunday’s Child” was born and the joy she brought to our family was immeasurable. I wonder if God sent her two weeks early so we could have her just that much longer? Of course, it will never have been long enough, and her absence is still as heartbreaking as it has always been and I’m sure, will continue to be. Meghan would be 6 years old tomorrow. Can you imagine the obnoxious birthday party I would be having for her today? It would be full of pink girly-girl stuff, lots of sparkles, and anything she wanted. Of course, her best friend in the world Jazzy would be there. I can’t even imagine the trouble those two would be getting into. I can’t imagine the trouble they would get in when they are teenagers. Those two were like “peas and carrots”. The chunkiest girls in the class, and I’m sure I’m biased, but the most beautiful too. I had a note left on my car windshield from Jazzy a couple of weeks ago. She wrote in her own handwriting “I Love You” and it occurred to me, wow- Meghan would be able to write as beautifully as Jazzy can. I knew she would be out of Kindergarten now and looking forward into going into the First Grade, but I never let myself realize what that exactly meant. She could write if she were here. Lucky for me, I have Jazzy’s love notes to look at. It’s hanging on my refrigerator right next to Meghan’s pictures (which I’m sure is where if Meghan were still here, where her “first writings” would be)…. Anyway, I’m hoping in my own heart that she will be getting this party in Heaven tomorrow. It doesn’t make it easier for me, but I sure hope it makes it easier for her.
I hadn’t thought about updating because what could I possibly say about another birthday missed that I haven’t said before? And then, this card arrives in the mail. My friend Mel who is a big supporter of ELM and never forgets a date, sent me a card with a copied excerpt from Patti Davis (Ronald Reagan’s daughter‘s) book. The excerpt is called “The River of Memory” and it talks about a list she keeps of birthdays and anniversaries. She also has a list beside that of the dates when friend’s and families’ loved ones earned their wings. She writes that the name next to the date is not that of the Angel, but rather, the name of the person who will “wake up to a day that feels different from all others and who will feel a little better if someone else remembers too.” When I read that line my first reaction was she gets it. She gets that on these days when everyone else goes about their own business, there are people in the house next door, or in the car next to you who is missing someone and that today, more than ever, needs a note, a call, an email. Today, more than ever, that person needs you to tell them, you remember.
I am “lucky” because I have this caring bridge site that makes it very easy for me to “make” people remember. But there are those “not so fortunate”. There are those whose day is filled with grief and cannot express to you (their friend or neighbor) why. Now, I know we can’t read others minds, but I guess, just try to be a little more forgiving to the people around you who may jump in line, or not say “excuse me or thank you”, because you never know their circumstance. You don’t know if they woke up this morning or tomorrow morning and relived either the most joyous day of their life and remember that instead of being able to continue that joy, that day now seems ever sadder because of a birthday missed. You don’t know if today marks the “one week, or one month” Angelversary of the passing of their beloved. You don’t know. And I don’t know. But what I do know is that the day stinks. It stinks more than I care to say. In fact, if I was describing tomorrow or February 7, 2003, I would use a four-letter word.
So as tomorrow comes, and I remember the emotions of giving birth to one of the most beautiful babies ever , I will also remember the 929 days I did have with her, and also add another day to the 1262 days that she has been gone but not forgotten. When will I stop counting days, minutes hours? I don’t know. Maybe someone who is farther along in their grief can tell me. Knowing my personality, my guess is never. I will always know how long she has been gone. Missing her is a constant struggle, but we all take it day by day, hour by hour and for those, like me, minute by minute. The “crying room” stands just as she left it back in November, 2002 when she slept in her bed for the very last time. So maybe tomorrow I will go there, and touch her clothes still hanging in her closet, or touch the cap she was wearing and the blanket she was covered in when she became an Angel. Or maybe I’ll go now since the tears have not stopped all morning and I might as well deal with it now.
Don’t forget, if you’re in the central Florida area, our Poker Tournament is next weekend, Saturday, July 29th at Friday’s Front Row. 8126 International Drive, Orlando. Registration begins at 4pm, and the tournament begins at 5pm. Please come join us. It should be a lot of fun!!
Good Night May and HAPPY, HAPPY BIRTHDAY tomorrow…. Mommy Loves You, Daddy Loves you, Tommy Lee Loves you…… EVERYBODY LOVES MEGHAN!!
Good Night Tay….. Wish ya could’ve stayed awhile…..give your big sister a great big Happy Birthday hug from Mommy.
Carol
Mom2Angelz
Thursday, May 25, 2006 6:09 PM CDT
CHECK OUT THE PHOTO PAGE!!!! THESE PHOTOS ARE FROM HALLOWEEN 2002 and were found today 6/14/06 by my boss. We had come to my office for our Annual Halloween Party and Meghan DID NOT want to dress in her costume (it was the Fairy Princess costume seen on the front page). When I see her smile in this picture my heart breaks to know that a VERY SHORT 4 months later she would be gone. I miss you Meggie May.....Thanks for sending me these photos- I guess you knew I needed you today.
Ok, so it’s been over three months since I have updated. To all you stalkers out there (who still come and check in on us), thank you and I apologize.
Meghan would have “graduated” from Kindergarten last week so to say I am in a funk is a complete understatement. Tommy Lee of course did great this school year and is moving on to the third grade (WHEN did THAT happen???). He is being tested for the gifted program at school and we couldn’t be prouder. The running joke with my girlfriends has always been “he’s a genius”. That stems from when he was a newborn and “found his hands”, or “rolled over”. Of course I thought he did things much quicker and better than any other baby, thus, he “must” be a genius. Well, I’ve been ribbed about this for years and hopefully (for my sake), he completes the second part of the testing and then qualifies for the “gifted” program. I will certainly be vindicated then!!! I was a little afraid at first when he came home and told me he had been tested. I asked excitedly “what questions did they ask?”….. and he said “I know I got “one” wrong”. So I asked what was the question? He said, “what has buttons and goes up and down?” I said…. “well, what was your answer?” He said “a monorail.” You can imagine my face as the thought of him being a genius quickly flew out of my mind….. A monorail???? Yes, everyone….. We go to waaaaaaaaaaay too many theme parks in Orlando…ok, I admit it….. Anyway, before I could say another word, he looks at me and says in an annoyed voice, “I know… an elevator! I thought of that after school!!!” I said, well, I think you might have over thought the question, but I think you gave a great answer! (Ok, so the monorail goes side to side and not up and down…. It DOES work on buttons , so he wasn’t THAT far off….. Still possibly genius material…. I’ll keep you posted. Funny thing is, I was telling a school teacher friend of mine this story and she answers “a rocket.” I looked at her and said “wow, I didn’t even think of that!!” Ummmmmm Tommy Lee’s dad works for NASA…..DUH! Oh well, I never said I was a genius!!!!
On the Meghan front….. She of course is missed more each day and missing her has not gotten any easier- not for one second. We do continue to honor her memory and our Light the Night fundraising efforts are off to a great start. We continue to work the concession stand at the Orlando Arena (so if you’re at the Arena for anything, look for The Leukemia & Lymphoma Society concession stand) and stop and say hello… don’t forget to buy something :o)
Our 2nd Texas Hold ‘Em Poker Tournament is scheduled for July 29th at Friday's Front Row, 8126 International Drive, Orlando. 4:00pm Registration, 5:00pm Tournament Begins. We are expecting an even bigger crowd than last year, and hope to raise a lot of money for Everybody Loves Meghan! We are also hosting a CHAIRity Auction with chairs being painted/ designed/ and signed by local politicians, artists and celebrities. The chairs will be displayed at City Hall’s Rotunda in downtown Orlando from September 5th thru September 15th with the auction being held at Light the Night at Lake Eola, also downtown Orlando on Saturday, September 16th.
I’ll be posting a link to our active donation web page so that you can make a donation in Meghan’s memory. Also, don’t forget, if you’d like to start a team in your area, please contact me. We are trying to become a national team and every one of you can help us do that. You can be a team just by walking by yourself at your local walk. Please consider becoming an Everybody Loves Meghan team member.
And remember, please donate blood and if possible, platelets as often as possible. And don’t forget- if you’re pregnant, trying to become pregnant, or know someone who is….talk to them about the importance of cord blood donation.
Good Night May….. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…. EVERYBODY Loves Meghan!
Night Tay…..wish you could’ve stayed awhile……
Carol
Mom2Angelz
Sunday, February 19, 2006 5:15 PM CST
EVERYBODY LOVES MEGHAN ROCKS!!!!!!!! Last night at the Ritz-Carlton in Orlando, something amazing happened. Our little homegrown Hearts and Hands Table sold for $5,000.00!!!!!
PLEASE SEE PHOTO PAGE FOR A PICTURE OF THE COMPLETED TABLE.
We were placed in the exclusive last position in the Live Auction and the hype leading up to “Item #12” was unbelievable. The table was displayed throughout the evening along with our booklet and there were people lining up to see the table all night. We also had to keep taking the booklet back because many of the people there wanted the booklet and asked if they could keep it. During the silent auction, the Auctioneer kept announcing the table and more people would gather round to see it. After dinner the Live Auction began and item after item sold, with the top item, a 7 day cruise for two going for $2400.00. We finally got to "Item #12" and the Auctioneer started the bidding off at $5,000.00 I COULD NOT believe it! My hopes were quickly dashed as he started to drop his opening bid finally going to an opening bid of $1,000 and getting it. Once that opening bid was made, the bids started quickly going up and up. When we got to $3,000 I thought I would faint.... but then it kept going!!! We got right back up to $5,000.00 and sold the table for $5,000.00!!!!!!! The whole room erupted in applause and gave the winner a standing ovation.
A little while later, the Auctioneer came over and said the bidder wanted to meet me. The gentleman and his wife explained that he was a pro golfer and that this table was obviously made with a lot of heart and dedication and that the story behind it is incredible. He then said he wants to fly me (and the Executive Director of the Society) to Nantucket in August to place the table in a high dollar Pro Golf Auction. He said he thinks the table can easily get $50,000.00!!!!!!!!!! Now, he may be blowing smoke up my dress, so I look at it this way- we've already got $5,000 anything else is icing on the cake (and that would be some fabulous icing if this comes true). Anyway, he was the guest of one of our board members so my feeling is he's very legit. In any event- anyone who can buy a coffee table for five grand is pretty legit if you ask me.
So, it looks like our little homegrown table may end up in some huge auction and raise even more money than could possibly be imagined. A deep heartfelt thanks to all of the children and their families who donated their time and art since it couldn't have happened without you!
Good Night May…..Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…. EVERYBODY LOVES MEGHAN!
Good Night Tay….. Wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Sunday, February 12, 2006 6:43 PM CST
A couple of nights ago I started to fall asleep (with a little help from Simply Sleep), and began having this weird conversation. I was at the cusp of deep sleep, yet was easily wakened. It went like this:
Ring, ring….
Me: Hello?
Caller: Carol?
Me: Yes, who’s this?
Caller: It’s me, God.
Me: (annoyed at the prank call when I had just drifted off to a sleep which never comes easily), Yes God, what can I do for you?
Caller: Well, we have a situation here.
Me: A situation? (still annoyed) You’re God, you don’t have situations.
Caller: Well, it’s Meghan.
Me: What’s wrong? Is she ok? (ok here I am asking God if Meghan is ok….)
Caller: Well, yeah, she’s ok, it’s just, well, she misses you.
Me: Well I miss her more.
Caller: Well, no, this is different. Usually the little ones are ok here with me especially once they see all the baby animals, the Angels, their grandparents, the streets of gold, all of those things. Usually, they’re my easy ones and fit in right away.
Me: Well it doesn’t surprise me that she isn’t being easy for you (with a smirk in my voice).
Caller: I usually don’t do this, but she needs to hear your voice.
Me: Put her on (as my voice begins to shake).
Caller: Meghan, come talk to your mommy.
Me: May?
Caller: I “juv” you mommy.
Me: May I love you too! To Heaven and back. I miss you and think about you every second of every day. You be good up there and if you get sad or lonely, go see Meemaw or MaNina. They will make it all better until I can come hold you again.
Caller: Thanks Carol. I think she’s ok now.
Me: Me too. Thanks God.
And that was when I fell asleep, or maybe I was asleep the whole time, I don’t know. It was a very, very strange sleep or whatever that was…….Funny thing is, I remembered the conversation verbatim when I woke up.
So, that was a little bit of the insanity I live in…. On another note of insanity, this upcoming weekend, February 18th is The Leukemia & Lymphoma Society’s 5th Annual Diamond Gala. It is being held again at the Ritz-Carlton in Orlando and myself along with Everybody Loves Meghan Team Captains Louise Brill and Teri Garcia are once again on the Auction Committee.
Somewhere along the way, we came up with the idea to do a table and entitle it “Hearts and Hands”. I have asked very special children along with the parents of Angels to help us with this project. Each of the children battling and surviving childhood cancer was asked to decorate a ceramic tile with a handprint somewhere on the tile. Then we asked the parents of Angels to design tiles with Hearts incorporated on the tile. What we have been getting back from these families is nothing short of perfection. Each tile I open I am more amazed at how much love and dedication was put into it.
Because I am infamous for being a procrastinator (no snide jokes anyone), I didn’t give people a lot of time…. Ok, tops maybe a day or two to come up with their design, paint their design and get the tile back to me. I have gotten back most of the tiles, and am crossing my fingers and toes that the outstanding tiles will be in tomorrow’s mail. Once all of the tiles are glazed they will be set on the table top and grouted. Most likely Friday evening before the event (that is, if I’m on schedule (lol)……..
The table will then be auctioned off to the highest bidder at the event on Saturday night. Along with the table the winner will get a booklet which will have a page featuring each child, their picture along with a picture of their special tile. We have asked each family to write a paragraph about their child to publish in this booklet and as a special thanks for helping us with this project, each family will receive a copy of the booklet.
Of all the things I have done or participated in, this is the thing I am most proud of. I love this table and will be jealous at the winner for being able to take something so incredibly precious and one of a kind home with him or her. Because of the significance of this table, we have been placed in the coveted last position spot at the Live Auction. This spot is generally assigned to the best item or the one they expect to raise the most money for the Auction. Basically to close out the Live Auction with a bang. Since we are hoping that this table goes for a considerable amount of money and THAT I don’t have…… my hope is that the winner will donate this table back to The Society for their reception area in their new office space. That way, because I am so incredibly selfish, I can go look at it any time I want. Now, whether or not that actually happens, we shall see. In the meantime, the usually inartistic me will carefully paint hearts and butterflies on tile in memory of my sweet, sweet little froggy voiced girl who is missed to Heaven and back……..
Good Night May….. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You… Everybody Loves Meghan!
Good Night Tay…..wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Friday, January 27, 2006 9:29 PM CST
I’m compelled to write tonight. About what I’m unsure. About whom, I’m always sure. The memories come quickly and painfully. She was such a happy baby. I remember her at Christmas (before she got sick) and she was walking and pushing her stroller that Peepaw got her. I see her in her black velvet Christmas dress and white ruffled socks and black patent leather shoes. I see her happy. What a happy, happy baby. Luckily, I have this exact moment in a picture. It’s not the best photographically, but it’s a picture of Meghan just as I describe her. I think about her after she got sick too. I think when her eyes hurt so bad from the chemo that she couldn’t open them and I had to keep the blinds closed in the house. We had to drive to clinic and she hated to wear sunglasses but the sunlight hurt her so much she would keep them on. I was so, so afraid. I can’t imagine what she thought. I don’t want to imagine what she thought. I remember one day rushing to the hospital when she had a fever and she felt so awful that I had to pull over to comfort her and happened to do that at the corner where my brother lived and he happened to be driving by and stopped. I remember the look in his face seeing me and Meghan so upset. I couldn’t comfort her unless I was holding her and I couldn’t put her back in the car seat without her crying. Miserable, miserable times. But I would take a lifetime of that misery to have her back. Selfish? Absolutely, but not only am I human, I am a mom who desperately misses her daughter. Sometimes to the point of exhaustion. I can’t imagine this pain getting better. She will always be gone, and I will always be wondering what she would be like as she grew older. I will always wonder why she had to get sick. Why she had to be the percentage of Leukemia victims who didn’t make it. How is it that some do and some don’t? Every one of these kids who get this disease did nothing. Every one of these kids were adored and cherished. Every one of their parents would give anything for another moment with their Angel.
The thing about this disease is it doesn’t discriminate. You can be 6 months old., 21 months old , 3, 4, 5, 6 years old….. You can be a teenager or an adult. And bam! You’re given the news you have leukemia. When your world is suddenly changed with a life-threatening illness, you probably do a couple of things. I think Elisabeth Kubler-Ross had it a little backwards. She wrote a book on the five stages of dying. Anger, Denial, Bargaining, Depression, Acceptance. I imagine she wrote this for the person dying, not for the person left behind. However, those same stages apply to the person left behind. We as parents, when hearing of the diagnosis, go straight to Denial. You must have the wrong lab report here. You must be talking about someone else. You cannot be talking about my child. After it sinks in that in fact it is your child, you Bargain. Please God…..let me be the one sick. Let me take this awful disease instead of my precious daughter. Please God, you must have made a mistake. She is loved. She is adored. She is very well cared for. We provide her with a good, loving home. We provide her with shelter. We provide her with food, with toys. We provide her with medical care. For goodness sakes, she has all her shots! Please let it be me who is sick. Please make her well. She’s got so much to give to this world. And our answer? Silence. And so….. Anger. Why? Why God? Why? Why would you let thugs and good-for-nothings roam free and clear? Why would you let mass-murderers, or any murderer walk the streets? Why? And then, after our children’s long or short battle with this disease…. Depression. This one I have my own theory on. I don’t think it’s actually depression. I think it is profound sadness. A sadness that is like no other. A sadness that is indescribable. But look in the eyes of a mother who has lost their child and you will see it. For those of us who sadly are in this group, our eyes tell the tale. You may not be able to catch it unless you are “one of us”. We know who we are. It’s not a good club to belong to. The membership dues are astronomical. In fact, the membership dues are priceless. And so, depression? No. A sadness like no other….absolutely. Lastly we get to Acceptance. I can’t ever imagine I will get to this stage. If I am lucky enough to get into Heaven (the one with a shoe store on every corner- that’s for you Terry :o), I will get my questions answered (and believe me I will), and then, possibly then…. Acceptance will come. But for now, tears…… and lot’s of them.
So as the sadness ebbs and flows, my memories of Meghan are forever imprinted on my heart. I did not want this badge, but I have been unfortunate enough to have had it bestowed upon me so I will wear it not with honor, but IN honor of my daughter. Meghan Marie Mack who made her mark on this Earth and on my heart. Hopefully she has made an imprint on your heart (that is if anyone still reads this journal).
Good Night May…..Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….EVERYBODY LOVES MEGHAN!
Good Night Tay….wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Sunday, January 1, 2006 11:11 PM CST
Resolutions, resolutions, resolutions……Why make them when you rarely keep them? I was trying to think of what I resolve to do this year, but frankly, my goals are way too lofty and I hate failure. So, instead of making the obligatory New Year’s Resolution, I will make a list of New Year’s Reso-wont’s. This year, I resolve that I won’t say unkind things about those who are not the best, most loving and nurturing parents. I will instead say a little prayer under my breath that they learn a little something from an Angel (or, if they’re bad students, they get bonked on the head by a little Angel with a magic wand ;o). I was going to continue, but frankly, resolving to “wont’s” is just as hard. I hate to make promises I can’t keep, and unfortunately, I know myself a bit too well, and I don’t think I can keep or won’t keep any of these. I am a betting woman, and I know I will give an evil glance to a mother exasperated by her toddler who has had one too many laps around the mall without a snack or a nap and who snaps at the child or worse yet, smacks the child for being (insert a loud gasp here)…..a toddler!
I do hope this year that I am able to move forward in my grief. THIS is not an easy one. Where I am in this awful grief journey is comfortable. Not comfortable in the way you are reading this, but comfortable in the way that I allow myself to cry at a moment’s notice and feel as if it‘s my “God-given right“. I’m comfortable in the way I make myself completely change all thoughts of anything horrible or any of the horrific moments that Meghan encountered in her last days, and hours. I can’t say last minutes, because that is the one time I felt she was truly at peace. That in itself gives ME some peace. Let’s see, where was I???? Moving forward. 2006 moves us forward to a 3rd Angelversary (insert my infamous “when the hell did that happen” line here). Three Years. She wasn’t even alive three years and now here it is she has been gone for three years! I wish I knew what the plan was for her to have been put on this Earth for such a short time. The “why’s” still come fast and furious and my need to know “why” never calms. But I digress. I am supposed to be moving forward. Isn’t that what those grief books say? You know what I say (don’t worry parents, there will be no expletives here so you don’t have to censor)…. I say, we each handle our grief a bit differently. Some of us (me included) are still very, very mad. Some of us are trying to figure out why (again, count me in here too), some of us are trying to figure out how to move forward but NOT forget the past (again, ok….since I’m writing this, just go ahead and assume that I’m included in each of these unless otherwise specified). Ok, that’s out of the way…… back to our previously scheduled program…. some of us are insane (ok, I just snuck that one on here to see if you were paying attention- and for those of you who had already counted me in on that one…..well….ok, you’re right). When you feel as bad as "we" do (and by we, I'm referring to those of us who have lost our children to this disease- or any other way), we see the world thru different lenses now. No longer is the world rosy and bright. No longer does the sun rise to start a new day for us. Nope, for us, that sun... that darn sun is another daily reminder that we have another day to endure feeling like crap. Sure, we still get up, shower, get dressed, etc, etc.... but we also have this pain. A physical pain right where you were always taught your heart was (when in actuality you learned sometime in anatomy class that your heart is actually in the center of your sternum)...but your heart. The one that is red and is shaped....well, like a heart. That's the heart that is broken. The heart in your sternum..... well that one still pumps, and bring the oxygenated blood back to your body. It's that darn "heart-shaped" heart thats the problem. That's the one that gives us physical pain. I can't describe it. But the term "heartbroken"? It's real. And it's ugly. I know what you're all thinking, "when I was in 8th grade, Billy so and so dumped me for Heather on the cheerleading squad- ok- well maybe that's just MY story....) anyway, that's NOT the heartbroken I'm talking about. This heartbroken is to the depths of your being. It permeates your entire soul and surrounds you. Where you were once happy and living in this great bubble world where everyone was perfect and healthy. Now this bubble is forever broken. This bubble which was once your shield from great pain, now is a constant reminder of what you no longer have. You look at other parents and see their bubble. You want to tell them to enjoy their bubble. To savor the flavor (as sweet Alexandria would say). Our bubbles are forever burst, and as we go on, and as our bubble, stretches and mends, it will never be that perfect circle again. It will forever be that bubble that is just a little bit lopsided. That is us. The lopsided bubble parents (that's actually funny to read- if you're warped like me). Anyway, as a lopsided bubble parent, I will forever remember when my bubble was perfectly round.
Now, to jump to a completely different subject, and random thought (of which I have many)I wonder if Tommy Lee will name his first daughter Meghan after his sister. Wouldn’t that be awesome? By the way, that was not a subliminal message to T3 to name his first daughter after Meggie, but a blatant attempt by his pathetic mother to get him to do that (of course, that won’t be for awhile- afterall, he still has to finish second grade)…..
Speaking of T3, he had a great Christmas. He did make mention that it was sad Meghan didn’t have anything in her stocking. I told him her stocking here was for us to remember her and that in Heaven, Meghan had a huge stocking with all the presents she could dream of. He seemed very happy with that. Me???? Not so much. (sigh).
So, to end my New Year's entry, I'd like to let you all know we’ll be starting off our 2006 fundraising for Light the Night and The Leukemia Society shortly, so stayed tuned for those of you in central Florida. We can always use volunteers. If you go to any events at the Orlando Arena (TD Waterhouse) remember to look for the Leukemia & Lymphoma Society’s Concession Stand. ELM volunteers once a month behind a concession stand and proceeds from the night are split between the Arena and The Leukemia Society. You will recognize ELM by our Light the Night shirts or our Everybody Loves Meghan shirts. You may also see at any time, a Team in Training concession stand. If ELM isn’t at the Arena- please visit their concession stand- otherwise- COME TO ELM! Speaking of volunteers, we would love to have an Everybody Loves Meghan team for your state’s Light the Night. Please contact me to ask how to start a team. We have to have 10 teams to be considered a “National Team”. With your help, we can get there.
Well, I was hoping to get this posted before January 2nd, but the clocked just clicked 12:07 so, I’m late. Hmmmmm, maybe that’s a good New Years……NAAAAAHHHHHHHHH!
Good Night May……Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. EVERYBODY LOVES MEGHAN!
Good Night Tay…. Wish ya could’ve stayed awhile.
Thursday, November 24, 2005 12:29 AM CST
WEDNESDAY, DECEMBER 20, 2005
NEW PHOTO ADDED - Please Visit our Photo Page!!!!!!
Hmmmmmm, let’s see…. We’re supposed to be thankful today so I will do my best to find some reasons to be thankful. First and foremost, I am thankful that Tommy Lee is a healthy, happy 8 year old who seems to have “adjusted” well to the loss of his sister. I am thankful that he is a caring, sensitive little boy who cares about his friends and family, and also about our Caringbridge friends and family. Most nights as I am hopping Caringbridge site to Caringbridge site, he will look at the picture and ask about the child. Unfortunately, the very first question usually is “what’s wrong with him/her?” and then “is he/she alive?”. Too bad an 8 year old knows so much about illness and the reality of life and death. Nonetheless, I’m thankful that he is able to understand childhood diseases, and not be afraid that “he will be next”. I’m thankful that he is smart, funny and athletic. I’m thankful that he will try any food (even though his mother most certainly will not)….. I’m thankful that he doesn’t mind when his meat touches his potatoes….(even though his mother definitely minds)….. I’m thankful that he can make a hard, sad day happy again, just by his excitement when I walk in the door. I’m thankful for his truly unconditional love. I am proud and thankful to have been chosen to be his mom.
Next I am thankful for the 2 years, 6 months and fifteen days, or the 929 days, or the 22296 hours, or the 1337760 minutes, or the 80265600 seconds that Meghan graced us with her short life. I am thankful that “she never knew what hit her”, I am thankful that her little life was filled with incredible love, attention and hope. I am thankful that she got thru chemo usually with a smile on her face and a dance in her heart. I am thankful for the incredible snuggling time we had. I am thankful that I have a job that let me not come back to work from the day she was diagnosed till I needed to after she died. I am thankful that she had such incredible doctors, nurses, friends and family who made her short life special. I am thankful for her laughter, her kisses and most of all the imprint on my heart made by a special little girl who was not like any other. I have said before, she was “wise beyond her years”. If you read other Caringbridge sites, you will find that true of most children with a terminal illness. Maybe God put them on the earth this way to help themselves along. Maybe he put them on the earth this way to help US along. I think the latter maybe true. Either way, she was a blessing, and one that was sent specially for me. I am proud and thankful that I was chosen as her mom.
Next I am thankful for the approximate 6 months I was able to carry Taylor. I don’t know what her personality would have been like, but I do know she is being bossed by her big sister as we speak. I am proud and thankful to have been chosen as her mom.
Lastly, I am thankful for my friends and family who have never wavered in their support of my family, including their continued support of The Leukemia & Lymphoma Society in honor of Meghan has been nothing short of a gift. One that I can never repay, but for which I am eternally grateful.
So, as you can see, I am grateful for what I have, what I will have in the future, and especially for the memories I will always have of lives cut short. Happy Thanksgiving Everyone. Be thankful for what you have.
Good Night May…… Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…… EVERYBODY Loves Meghan!!!!
Good Night Tay…….wish ya could’ve stayed awhile.
Carol
Mom2Anglez
Meghan & Taylor
Wednesday, October 26, 2005 7:49 PM CDT
Hmmmmmmmmm… talk about a slacker! I haven’t updated since August, how pathetic is that? Well, first for all you Stalkers out there…..on to great news! Everybody Loves Meghan kicked Leukemia’s butt again this year raising over $15,700.00 making us the Number 1 Friends and Family Team again this year for Orange, Brevard and Polk Counties! In addition to our Number One status, we are Central Florida’s Third Place Overall Team behind corporate giants, USA Space Alliance and Florida Hospital Cancer Institute coming in third behind Florida Hospital by exactly $501.00 and only $5,000 behind USA Space Alliance! Watch out next year corporations, we will be back……..bigger, badder, and stronger!
The Orlando walk was held on a gorgeous night which was as it should be since it also marked the one year Angelversary of sweet Cassidy Jewel Guenther. Cassidy earned her wings one year ago, September 17th and was remembered by Everybody Loves Meghan with her rightful Angel on our tent. I was asked to speak again this year and will share my speech with you all (sorry if this is boring….)
Good Evening, my name is Carolyn Mack and I would like to thank you all for taking the time to be here tonight. I was asked to say a few words to all of you this evening on behalf of The Leukemia & Lymphoma Society. I thought the best way to thank you all for being here this evening was to tell you the story of my beautiful daughter Meghan. Meghan was 21 months old when she was diagnosed with bi-phenotypic leukemia.
After enduring 10 months of incredibly harsh chemotherapy, radiation, and then a stem cell transplant, Meghan lost her life on February 7, 2003. She was 2 ½ years old. Unfortunately, Meghan’s story is not that uncommon. Leukemia continues to be the number 1 childhood killer and every five minutes, a new family learns of the diagnosis. It is events such as this evening that raise money and awareness of blood related cancers which in turn, helps families struggle with the day to day living and costs of having a child or a parent with this deadly disease. For each dollar raised tonight, we will be that much closer to a cure which is our ultimate goal and one I sincerely hope to see in my lifetime. During the year, the Leukemia & Lymphoma Society holds a number of fundraisers and events which we invite all of you to come talk with us about how you can get more involved in helping us reach our goal. We have information for corporate sponsorships, individual donations and other literature which we ask you all to take a moment to look thru.
In light of our nation’s natural catastrophic event, Hurricane Katrina, The Leukemia & Lymphoma Society is being hit hard in our fundraising efforts. Cancer knows no hurricanes, and children, teens, adults… they still need their medications. They still need their chemotherapy, their blood transfusions. They still need us. It is true that finding people to donate to the Society has been a little tougher in recent years. Last year we were hampered by four hurricanes hitting Florida. This year, Katrina has simply devastated Louisiana and Mississippi as well as having enormous ripple effects throughout the entire United States. And truthfully, the devastation is truly unbelievable. But even though public donations have been going elsewhere, The Leukemia & Lymphoma Society knows that cancer goes on.
We have been advised by the National office that they are donating one million dollars of monies raised through the Light the Night Walk and School Programs to the areas hardest hit to ensure that patients and their families continue to get the much needed medical supplies and care they desperately need. It is thanks to events such as this that make this possible. On a personal note, tonight as we begin our walk, please say a little prayer for the family of Cassidy Jewel Guenther as they are enduring her first Angelversary in Heaven. And Meghan, Cassidy…….this walk is for you!
September 24th Everybody Loves Meghan walked proudly at the Brevard County walk in Cocoa Village. I read basically the same speech that evening as well.
October 7th I, along with Tommy Lee rode down to West Palm Beach to walk with Jalen’s Team (www.caring bridge.org/fl/jalen) where Terri, Jeanette and their huge team of walkers raised over $6,000.00!!!! The evening started out beautiful and the ducks we all carried (Tommy Lee and I carried “Meghan’s Duck”) were just incredible. In addition to seeing the ducks “live” I also was honored to see Seth’s Train (www.caring bridge.org/fl/seth). Scott, Seth’s daddy spoke on behalf of their family and his speech was simply awe inspiring. I was also honored to see “the Train” and of course, the Engineer of the train is Seth and then in each car carried behind him were pictures of our Angels, including of course, Meghan! It is so wonderful to see what an impact each of these children have made (unfortunately posthumously) on their communities.
As parents, we only want our children to be remembered. More than anything else, we want to hear their name. We want to hear your remembrances of our children. We want you to talk about them with us and remember them along with us. As we are only less than four months away from Meghan’s Third Angelversary in Heaven, we are no closer to being healed from our loss. It is a scar that is hidden behind skin and layers of fat, but etched on our hearts is her name, her smile, her smell. She will always be my daughter, and I will always be her mommy. She will always be gone and I will always be sad. Will it get better? If you read the books, they say it does…… if you talk to other Angel families……well, I don’t think so. The crushing feeling on my chest may sometimes not be as great, and sometimes you will see me laugh, smile, crack jokes, and try to live, but in no way does any of that take away the loss of Meghan in my heart. Sad? Yes. Beyond belief. Actually, its beyond, beyond belief. It is an unfathomable grief that unless you have lost your child, you can only speculate on how horrible it is, and even then- trust me- you’re not even close. So, hug your kids, even if they fought you on homework tonight, or even if they talked back….what I wouldn’t do......
PS: As many of you can tell from the Guestbook, I had a telephone reading with John Edward of Crossing Over (johnedward.net). I will have to tell you all about it in another journal entry. Let’s just say- it was extremely comforting to know Meghan and Taylor are with my mom…….
Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…. EVERYBODY Loves Meghan!
Good Night Tay……wish ya could’ve stayed awhile!
Carol
(Mom2Angelz)
Monday, August 1, 2005 7:18 PM CDT
Please visit my activedonation website and donate to The Leukemia & Lymphoma Society on behalf of Everybody Loves Meghan. http://www.active.com/donate/ltnOrland/ltnCMack
Anyone within driving distance to Orlando and Titusville, Florida please listen up!!!!!
Announcing Everybody Loves Meghan’s upcoming fundraising schedule of events!
August 20, 2005 1:00pm (12:00pm Registration) Everybody Loves Meghan and the Amateur Poker League (APL) will have a Texas Hold ‘Em Poker Tournament benefiting The Leukemia and Lymphoma Society at The Blue Room, 17 West Pine Street, Orlando, FL. There is a $50.00 per player suggested donation. Prizes will be awarded to the winner. After the tournament you are invited to stay for Happy Hour and Appetizers. Please visit the Blue Room at http://www.clubzone.com/c/Orlando/Nightclub/Blue_Room.html
Also, stop by and visit http://www.apl1.net
August 28, 2005 12:30pm Everybody Loves Meghan will be hosting a Lunch for Life Pasta Luncheon benefiting The Leukemia and Lymphoma Society at Tuskawilla Presbyterian Church at State Road 426 in Oviedo. Lunch tickets are $7.00 per person for a pasta luncheon. Raffle prizes will be given out. A bake sale will also be held featuring delicious home-made baked goods.
September 10, 2005 9:00am The Second Annual Meghan Mack Memorial Softball Tournament benefiting The Leukemia & Lymphoma Society will be held at Marina Softball Fields in Titusville, FL. This is a Adult Mens and Adult Co-Ed Tournament with a Double Elimination, 2 Game Minimum. $150.00 per team to play. Please visit http://www.softball tournaments.com and sign up to play softball to benefit this worthy cause.
Light the Night is fast approaching…. September 17th in Orlando and September 24th in Brevard County. We continue our walk for revenge, and the more of us out there fighting against this disease, the quicker we will stomp it out. Please come out and join us for one or both events. We would love to see you all there. Please contact me if you need further information, or go to www.lightthenight.org and register to be on Everybody Loves Meghan’s team!!!! If you’re out of town and can’t join us here in Florida, please stop by the lightthenight website and form your own Everybody Loves Meghan team in your area.
We also have beautiful hand-made sterling silver and swarovski crystal beaded jewelry for sale during the year. Please contact me if you’re interested in having a jewelry party in your home or office. A portion of all proceeds are donated to The Leukemia and Lymphoma Society.
As always, please don’t forget to donate blood and platelets, and if you’re expecting a baby, or know someone who is, talk to your doctor about donating your baby’s cord blood. It might save a life.
Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. EVERYBODY LOVES MEGHAN!!!
Good Night Tay….. Wish ya could’ve stayed awhile.
Carol
(Mom2Angelz)
Saturday, July 23, 2005 6:06 AM CDT
Saturday, July 23, 2005 6:05 AM CDT
As the tide ebbs and flows, as the earth continues to spin on its axis, her presence is felt everywhere. And day by day, hour by hour, minute by minute, as we grieve for our sweet, beautiful Meghan, we begin to remember not that she died, but that she lived!
Happy 5th Birthday my sweet, brown-eyed girl.
MEGHAN MARIE MACK
JULY 23, 2000 – FEBRUARY 7, 2003.
Friday, June 10, 2005 9:40 PM CDT
CENTRAL FLORIDA STALKERS:::: Please listen to WMMO 98.9 this Friday, July 22, 2005 at 8:00 a.m. to hear a Select-A-Set in Honor of what would have been Meghan's 5th Birthday, Saturday, July 23rd. This Select-A-Set was chosen by my friend, and one of Everybody Loves Meghan's Team Captain, Teri Garcia as a gift to Meghan in Heaven.
Also, don't forget to register online to walk with Everybody Loves Meghan in either Brevard County or Orlando. Go to www.lightthenight.org to register. Remember to put our team name in so you can be counted on our team!
Wow- I’m such a slacker….. I haven’t updated since February (yikes). I guess it goes to show that our lives have reverted to being boring and mundane and the grief that hangs over our heads is sometimes not as easy to talk about. I think the devastation of losing Meghan is sometimes so incomprehensible even to me that I am able to (still) almost have daily out of body (probably out of my mind) experiences and can suppress the sadness to some strange degree. Maybe I should have gone to grief counseling. Who knows? I suppose this is my grief counseling (and apparently my attendance is rather poor) (lol) (sometimes I just make myself laugh)…. Anyway, the other night Tommy Lee and I were talking and he said “mom, have I ever had surgery”, I said “no”, but you have had your blood taken (thinking maybe someone in his class had had some minor surgery and he was needing to “one up them”). So he said “oh, I thought I’ve had surgery”. I said nope. He said “I did give my bone marrow”. THUD….. That was the sound of my heart hitting the pavement. I said, “no, you gave your blood to see if your bone marrow matched Meghan‘s, but it didn’t”. I went on to say, not everyone’s bone marrow matches everyone. I explained that even mommy and daddy’s bone marrow didn’t match Meghan’s. So, out of left field he says “Markie is lucky”. (Markie is Marcus Murphy www.caringbridge.org/fl/marcusmurphy). I said “yes he is”. He said his brother is lucky because he gave Markie his bone marrow. (This conversation was getting so much deeper than I had anticipated)…. I explained that yes, Markie was lucky and Vinnie was lucky too, but that even though they had a perfect match, that unfortunately doesn’t mean you will definitely live. I explained that some kids even with their big brother or big sister giving them their bone marrow don’t live. I explained that sometimes the Leukemia is so much stronger than any medicine or any bone marrow. He said “I know, he’s just lucky”. Yep, he sure is, and we’re all so glad Markie is doing so well. Speaking of Markie, he, along with his big brother (and bone marrow donor) Vinson were some of our guests at our 50’s Rock-N-Bowl which we had on May 15th. We had prizes that were donated, including a cool Johnny Bravo bowling ball from the bowling center (which Markie‘s mom won), we had a local Thunderbird Club come with their classic T-Birds, we had lots of people dressed in their 50’s costumes and most importantly, we raised $850.00 for Everybody Loves Meghan’s first fundraiser of the Leukemia & Lymphoma Society’s Light the Night Season. Speaking of Everybody Loves Meghan, for those of you who follow this website, you probably have noticed how fascinated I am with the fact that Meghan’s birth date and date of death are all the same numbers 7/23/00 - 2/7/03. I’m determined to find a numerologist to explain this to me, but that’s not where I was going with this. I had discussed with my team captains, Louise and Teri about having a logo made for Everybody Loves Meghan. I thought that since the initials were ELM that an Elm tree might be a cute way to reference it subliminally. Well, one night I get this email and it says “What kind of tree are you” ELM. At first I thought it was from Louise but couldn’t figure out the email address. I open it up and it gives a list of birthdates (the range of these dates being several days - not monthly - definitely random). Anyway, I look at Meghan’s and (I’m sure you’ve all figured it out)…. She’s an ELM Tree. I know I’m into conspiracy theories and I definitely believe there were more people on the grassy knoll….. But is this coincidental? Is it Meghan sending me a signal? Is it me grasping for any little reference to her I can find? Possibly all three, however, my favorite theory is it’s a signal from Meghan telling me she is an ELM tree. She is strong now. She is alive now. She is forever shading me and enveloping me with her long, lovely branches. As I go thru other Angel sites and see how they are honored by their parents and loved ones, I hope that I honor her just as beautifully. She wasn’t here a long time, and the time she was here was sometimes not enjoyable for her at all, but I hope when she’s looking down on us and watching over us, spreading her long lovely branches, she remembers how much we love her and tried to make even those awful, awful last days pleasant in some small way. Singing to her about rubbing her belly (a song we made up that made her giggle), whispering to her (when who knows if she could hear us at all talking to her), touching her, kissing her and most of all, fighting every step of the way for a cure for her. I hope she knows we would have given our lives to save her. Such an awful, awful, disease. Her last days are for the most part something I never let creep back into the forefront of my mind. My strongest wish is to know that she did not feel anything during those last couple of weeks. The gruesomeness of what happened to her little body is locked in my mind and is something I rarely talk about to anyone. There are few people who know what happened to her and how disgusting it was. Images I wish I could erase from my mind, but sometimes, when least expecting it, creep into it and are so vivid and awful that I get physically sick from it. She was so, so, sick. I look back at those journal entries and wonder if I was using a coping mechanism at the time because truly what I wrote at the time was sugarcoated for sure. I was trying to put a positive spin on what was such an awful time. Clearly I was delusional at the time (well, I guess I could be now, but I digress….) Not sure why I’m writing this now, just probably time for a sounding board. Before I can no longer see from the tears streaming down my face, I’ll switch gears and try to suppress those awful memories……(sigh).
We do have some fundraising projects working for Light the Night and maybe when I’m in a not so depressed mood, I will share those. Remember to donate blood and platelets. Register with the National Marrow Donor Registry, and don’t forget about your cord blood. If you’re pregnant, talk to your doctor about saving it in a bank for your own (hopefully never) use, or donating it to a national bank where it can be put to good use.
Thanks for stopping by, please sign the guest book…. I know you’re out there.. I hear you breathing (lol).
Good Night May….. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You……. EVERYBODY LOVES MEGHAN!!!!
Good Night Tay….. Wish ya could’ve stayed awhile…….
Carol
Mom2Angelz
Monday, February 28, 2005 7:56 PM CST
Attention All Central Florida Stalkers:::::
EVERYBODY LOVES MEGHAN invites you to our :
50’s ROCK-N-BOWL, Benefiting The Leukemia & Lymphoma Society, Sunday, May 15, 2005 from 2:00 p.m. to 4:00 p.m. at Aloma Bowling Center 2530 Aloma Avenue, Winter Park, Florida.
$20.00 per person in advance
$25.00 per person at the door
Costs includes: 2 Hours of Bowling, Shoe Rental, All You Can Eat Buffet, Classic Car Show, Kids Bounce House and Face Painter.
COSTUME CONTEST: Come dressed in your 50’s best! Prizes will be awarded. Have fun and be creative!
For ticket information, contact:
Teri: (407) 221-4695
Carolyn: (321) 243-5051
Louise: (386) 748-1382
If you would like flyers for your friends or business, please contact us and we will get them to you.
On to other things…….. Saturday, February 19th Teri, Louise and I attended the 4th Annual Diamond Dance Ball held at the Ritz Carlton in Orlando. The three of us started off the day setting up the auction prizes as well as decorating and putting the centerpieces we had made on all of the tables. After completing the set-up the three of us went to our room and got ready for the big event. The evening started off with a Silent Auction (which is what Teri, Louise and I worked on) and toward the end of the auction as they were closing out the tables, there were Mardi Gras stilt walkers cheering the bidding on and it got to be quite a little frenzy over the items. It seems a lot of bidders waited till the last 10 or 15 minutes of the auction before placing their bids then all hell broke lose as they were scurrying to get their bid in last so it would be the winning bid. It was very exciting to watch. After all tables closed, the doors to the grand ballroom opened and there were our lovely centerpieces dazzling on the tables. I guess I should mention the theme of the Diamond Dance was Mardi Gras. Anyway, as Teri, Louise and I went to our table, there, on each of our seats were beautiful Appreciation Plaques with the centerfold of the program (which just happened to be a picture of Meghan). Yep, Meggie was a Centerfold :o) The plaques were completely unexpected and I admit I got a little teary-eyed when I saw them. As the program started, a huge (and I mean huge) video screen was showing pictures of Leukemia patients, and yep, you guessed it, Meghan’s pretty little picture was up there on the “jumbotron”. One of the Board of Directors asked Teri, Louise and I to stand as he thanked us for our hard work and dedication to the Society. He told the 300 plus people why we were there and told a little bit about my Meghan. It was a very thoughtful speech. After the speakers were finished, we dined on a very lavish dinner as only the Ritz could prepare, and for desert, crème brulee. Once dinner was finished, it was time for the Live Auction (which we were also responsible for getting prizes for) began. For our bid cards, we had Mardi Gras masks on sticks which were raised instead of plain old numbers. The Auctioneer was absolutely brilliant and it was so cool to watch all of these Mardi Gras masks pop up and down as the bidding progressed. After all of the Live Auction prizes were gone, the crowd wasn’t ready to call it quits as far as their donations were concerned. These people REALLY wanted to donate money. So, what did they do? The Auctioneer said, who will donate $250.00? Many, many bid cards went up. After that, she asked who wanted to donate $150.00, even more bid cards rose. Then how about $100.00? More bid cards rose. Then $50.00...even more bid cards rose. So, we’re all thinking, that was cool- now that’s done. And someone yells out, I’ll give $500.00! Then another!!!! We were all hooting and hollering!!! So, in the end, we raised a little over $100,000!!!!! Not too shabby for a nights work!!!!! So, you’re probably thinking, nights over right???? Nope! The band comes out. Buzz cats (I kept calling them something else, but this is a family page and I don’t want to be censored by the FCC :o) Anyway, did this band rock or what????? I don’t think I’ve ever had so much fun listening to a live band (except, U2, or maybe Sting, or Prince, or…..oh crap- I mean a live band that is not on the radio……anyway, you should have seen all of the dancing going on. Unfortunately for a great many of the dancers, they had been a little too friendly at the open bar and maybe shouldn’t have been attempting to dance, but then again, Teri, Louise and I wouldn’t have had as much fun had it not been for the drunks attempting to dance while very, very intoxicated (lol). And NOOOOOOOO, we were not any of the drunks………dancing that is ;o)
So, that was the Diamond Dance. The week before, I had the extreme pleasure of meeting Miss America, Deidre Downs at a Candlelighters event in Melbourne. If she isn’t the most beautiful, pleasant woman in the world, I don’t know who is. She is so incredibly down to earth and her entire platform is curing childhood cancer. Beauty, brains and she wants to HELP FIND A CURE!!!!! Anyway, there’s more to my meeting her, but I’ll give more details on another journal entry. For now…….
Good Night May……Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. EVERYBODY LOVES MEGHAN!!!!!
Good Night Tay……wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Monday, February 7, 2005 7:52 PM CST
I was sent this from my cousin's wife who has been one of my greatest support systems since Meghan earned her wings. Although she is overseas in England as my cousin finishes medical school, I can always count on her to lift my spirits. Funny how those farthest away in distance seem to be the closest in spirit............
"SO - in no attempt to try to cheer you up, I thought I could at least on this sad anniversary ponder on what impact your angel Meghan has had on my life....
-I am patient and let Christopher "help" wash the dishes which includes waiting until he is 'done' and gone off, and pulling them all back out of the dish drainer.
-Playdoh is a regular play option in my house because it's so fun...who cares if it makes a mess.
-I will lay in bed on a Saturday morning between Andy and David as they fight over "my mommy' and try to hit each other and wrestle
-I will dip into my retirement savings to buy my daughter a horse, because bagging groceries when I'm sixty will be worth it to see the joy that riding brings to her life.
-Realizing that in a instant your life can completely change, I've stopped worrying about what will happen next and just try to make each day the best I can.
As hard as it will be today, please remember that Meghan made a tremendous difference in many lives. I was reading a book by Mother Angelica and I thought of you when she wrote:
I get a little distressed when I see people at funerals trying to comfort the family and friends of the deceased by pointing out that their loved one is in a "better place". ...But that is surely not the point We all know that the loved one that died is in a better place (or at least we hope so). We all know that this life is but a temporary city. We're not dimwits. We're just heartbroken. Jesus wept when His dear friend Lazarus died, even though He knew He was going to raise Lazarus from the dead. Jesus knows tht horrible weight you feel in your heart; He knows that life has been torn apart for you. And when Jesus died, Mary and John and all those who loved Him didn't try to keep a stiff uper lip. What I'm trying to say is that it's ok to cry, to weep, to grieve, and to feel as lost as you do at this moment. Give yourself time.
Good Night May... Mommy Loves You, Daddy Loves You, Tommy Lee Loves You.... EVERYBODY Loves Meghan!!
Good Night Tay.... wish ya could've stayed awhile.
Carol
Mom2Angelz
Thursday, January 13, 2005 6:38 PM CST
ATTENTION CENTRAL FLORIDA STALKERS.....
Listen to WMMO 98.9 Monday morning, 8:00 a.m., February 7th (UGH), for a Select-A-Set in Meghan's Honor (hopefully it will be played as I haven't heard back from the station so I'm assuming they will)........
Well, let’s see stalkers…… been a long time I know. The birth/death of my second Angel Taylor came and went. Another set of “firsts” under our belt….whew! Christmas also came and went as did New Years and my birthday. I guess the proverbial “clock” has ticked on past any more children in my shriveled up womb so the mourning of that reality has begun to settle in…..sigh. Please don’t email me about women having babies in their forties and beyond- I know, I know….however, I haven’t had the greatest luck in that department so it might be just as well. Who knows maybe “that’s the plan”. Not such a great plan in my mind, but I guess a plan nonetheless.
Things have been so busy with The Leukemia Society. Went to the Pasta Party for Team in Training on the 8th and got to meet some very special people whom I have come to know thru this journey. It started off by me getting to meet Ali who is from south Florida and who had her bone marrow transplant for AML right before Meghan’s transplant. She is doing fabulous!!! She and I have become very good friends and although she has some rather incriminating photos of me at Epcot (lol), I still love her to death and swore that I would only write nice things about her and her son so that these “photos” don’t get out into the public (heeheehee). This is actually a running joke between she and I and my friend Teri so none of you will actually understand any of this (unless the dreaded picture gets out), but what the heck- it’s funny and it’s a girl thing :o)
In addition to getting to meet the most gorgeous AML survivor in the world (ALI)…… I had the extreme good fortune of running across an entry in another child’s guest book from Angel Seth’s mommy, Ruthie. In that guest book, she explained that she and her husband, and their two gorgeous kids would be at the Disney Marathon on January 8th (her husband running in honor of Seth). I immediately went over to Seth’s website (www.caringbridge.org/fl/sethlovestrains) and wrote and told her that I would be at the pasta party and if she would be there. She immediately replied telling me that yes, not only would her family be there, but Angel Jalen’s (www.caringbridge.org/fl/jalen) family would be there too. Jalen just happens to be Meghan’s boyfriend in Heaven. So then it was off to instant message Jalen’s grandmother Terry who immediately answered me back saying they were coming too. At the pasta party (with roughly 2200 people there), and with the help of cell phones (what DID we do without them?), we were all able to meet FINALLY! We all had our favorite shirts on……a picture of Seth on Ruthie’s, Jalen on his grandmother and mom’s shirts, and we (Ali, Teri and I) decided to wear our First Annual Meghan Mack Softball Tournament shirts as the back of the shirt explained what our tournament is all about….. One Bat, One Ball, One Goal…..One CURE. We had a lot of compliments on our shirts and I was glad we picked that design to wear. Although we didn’t get to talk much with Ruthie and Terry, it was such a great meeting and I’m sure there will be many more “get-togethers”. The funniest (and I don’t mean this in the “ha-ha” sense of funny), as the dinner is wrapping up and the speakers are speaking about why they run the marathon, and how much money they have raised, my friend Teri looks at me with all sincerity and says “you’re NOT going to make us do this (and by “this” I mean run a marathon) next year are you?” As beads of perspiration drip down her forehead as she thinks for half a second I might say “yes- why not???? …..let’s get “Everybody Loves Meghan involved in Team in Training and run a marathon (26.2 miles) or even the half marathon (13 miles)? Here’s where the “funny” comes in….. I really thought she knew me better than that. ME run a marathon?????? Not in this lifetime…. NO, NOpe, Marco-NOlo……e-i-e-i-NO!!!! So, she sits back in her chair obviously satisfied with my answer of NO and breathes a sigh of relief (as do I). Monday rolls around and my phone rings…. “guess what????” is what I hear on the other end of the line….. Uh…what???? I answer….. Team Meghan is formed!!!!! (insert excited, out of breath bubbling Teri practically screaming in my ear)…. Team Meghan? I say….. “Yes! I was talking about the pasta party and I met a girl who ran the half marathon and” blah, blah, blah…. babble, babble babble….(my mind by now has gone completely blank, and fear is gripping me like a dark cloud)…. I interject “but, but…we promised!!! I say...” nothing….she continues on with who she has already recruited to run with Team Meghan and her excitement is almost overwhelming. So, there I sit, the pressure mounting (now sweat is beginning to form on my brow)….run a marathon???? Me???? “You don’t have to” she says sweetly……and with just the right amount of guilt to make me sweat even more…. I’m still kicking and screaming and am totally in denial- but, we’re gonna go to a Team in Training meeting (and by "we" I mean Teri [bright idea- and who I am convinced must have some sort of carbon dioxide leak in her home to give her such a bright idea], Louise-[who basically said "what the hell- why not"], Mel-[who enthusiastically said she would do the marathon-a tree must've fallen on her head -or another CO2 leak- with her excitement level] and I [begrudgingly]) and see what it’s all about. I will confess that we can “walk” the marathon so, I might be able to walk 13 long tortuous miles (or crawl)…..I am not in any way committing to this Teri….. I’m merely agreeing to attend the meeting with you. There, I said it… a non-commitment. Perfect!
In addition to that whirlwind (and complete loss of our minds), we are working furiously on the Diamond Dance scheduled for next month. Meeting after meeting, e-mail after e-mail, and telephone call after telephone call to coordinate the menu, the decorations, the auction items, and a slew of other details that have to be worked out before the event arrives. Then we, and by we, I mean Louise, Teri and I get the email asking us to help on the Golf Marathon coming up in April……yikes- as if I know anything at all about golf…. Oh well, I suppose I didn’t know a thing about softball, and now it looks like we’ll be having two tournaments this year….so, no time like the present to learn I guess…… As we gear up for Light the Night in September (or maybe October this year as the national office is a little skittish this year about having walks in Florida in September due to last year’s unprecedented four hurricanes here), we will officially have a Brevard County team of Everybody Loves Meghan to walk the Cocoa walk as well as our team for the Orlando walk. Anyone in Brevard County who wants to walk and raise money for Everybody Loves Meghan, please get in contact with me. Somewhere towards the beginning of summer I will be having a team meeting at the YMCA to sign up walkers and get fundraising information out to you. It is our goal to go national and have a team in several states, so if you’d like to start your own “Everybody Loves Meghan” team in your state, let me know and I can get you all of the information you need.
What started tonight as a pity party has evolved into a quick rundown of our activities to destroy Leukemia. Please join us, it’s something you can do and it doesn’t take a great deal of time or effort and we’d be glad to give you any fundraising tips you might want. Don’t forget to donate blood and platelets (if possible). Also, spread the word about the bone marrow registry and donating cord blood. Talk to your doctor if you are expecting and would like to donate your baby’s cord- or would like to save it cryogenically for your own peace of mind. Either way, it’s a lifesaver…….
Good Night May….. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. Everybody LOVES Meghan!!!!!!
Good Night Tay……. Wish ya could’ve stayed awhile my tiniest Angel.
Carol
Sunday, December 19, 2004 7:28 AM CST
Happy First Birthday/Anniversary in Heaven my tiniest Angel, Taylor Delaney. I hope your big sister isn't being too bossy with you. Mommy loves you two so, so, so much! Loving and missing you both my sweet Angels.
Tuesday, December 14, 2004 1:41 PM CST
Our little friend Mikey earned his wings today. Please stop by and send his mother words of encouragement. www.caringbridge.org/fl/mikey
Wednesday, November 10, 2004 8:24 PM CST
NEW PHOTOS- NEW PHOTOS- NEW PHOTOS……
We had our wrap-up luncheon for Light the Night 2004 and EVERYBODY LOVES MEGHAN was ranked the TOP TEAM in every category for all of our counties, Orange, Brevard and Polk Counties. We beat out huge corporate sponsors, Coldwell Banker and USA Space Alliance which is a NASA contractor over here in Brevard County. No one was even close to our final amount raised of $19,000.00!!!!
So, I feel as though I should update since it’s been awhile. From reading thru other Angels pages, it seems to be common- the farther away from the day our child earned their wings, the farther we get away from journaling. It’s not for lack of pain or grief, it simply and I can only use my case for an example, but Meghan was so young that there is not a wealth of memories of her to talk about. I have tried to share as many funny, silly, happy moments of her as I can so that I can hopefully show what a true gift she was, and what exactly the world has lost in her passing. It also gets harder to rehash the grief we continue to experience so as not to bore most of you. I think talking about our boring mundane lives isn’t what you come to read, so I feel a little guilty when I tell you about how well Tommy Lee did in school this past reporting period (he is a genius as most of you know :o) I do think most of you who come here care about our family, and want to know that we are coping as well as can be expected, and that we are. With that said, it is still with trepidation that I answer “that question”…. “how many kids do you have?”. I was asked that today, and actually made a joke to another paralegal walking by that this new employee asked me “that question”. Poor thing, she had to sit thru about 25 minutes worth of me telling her about Meghan and Taylor, and why it is that I have my entire office riddled with Leukemia & Lymphoma Society materials. I’ve already started my Pennies for Pasta campaign so I have quite the jump on that since it’s not until February when that event takes place in the schools. Never can be too ahead of the game I say…..especially when MY child’s class has to win the Pasta Party….afterall, who better deserves it than someone who “got the t-shirt”. So, like last year, I will push Pennies for Pasta and gather change from any poor sole trying to do their job at my office.
The Diamond Dance is coming along great. We are getting donations for the auction left and right and hopefully this year’s event will be the biggest and best they have had. I’m really looking forward to it, and if anyone knows anyone who knows anyone who knows anyone famous, and who would be willing to be a surprise guest at the event February 19, 2005, or who would donate something autographed, please get in touch with me. You never know about word of mouth, so I figure I’ll throw it out here and hope for the best :o)
I did want to throw out here that if anyone would like to have one of the t-shirts from Meghan’s Memorial Softball Tournament held this past summer, I would be happy to send you one as long as you make a small donation of $5.00 or more to the Leukemia & Lymphoma Society and send it to me. I think I only have larger sizes available, so for smaller people, those would make great sleep shirts. You can email me at the address below and I can let you know what sizes we have and get the ball rolling on getting you your shirts. I wish I had a picture of the shirt- so I will work on getting that on this page if anyone’s interested.
Other than that, please go out and donate blood and platelets if possible, and remember, EVERYONE should be registered with the National Marrow Donor Program. Oh yeah, it’s getting to be that time again when the Christmas Tree is placed in Washington, DC at the Old Post Office Pavilion and you can place the name of an ANGEL or the name of a child with cancer to honor National Childhood Cancer Awareness. http://www.candlelighters.org/cancerawarenesstree2004.stm PLEASE STOP BY THIS SITE AND PURCHASE A RIBBON TO HONOR AN ANGEL OR A CHILD WITH CANCER- it’s only $5.00!
Good Night May… Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….EVERYBODY LOVES MEGHAN!!!
Good Night Tay……wish ya could’ve stayed awhile.
Carol
Mom2Angelz
Tuesday, October 12, 2004 7:35 PM CDT
Wow- it’s been a little while since I last updated. We have been really busy wrapping up our Light the Night fundraising, and as of today, it looks like we’re going to finish up right at $18,000.00. I’ll know what the “official” total is next week when we attend the wrap-up luncheon at Baldwin Park. We are now diving in head first into another fundraising event for the Leukemia & Lymphoma Society called the Diamond Dance which will be held on February 19th at the Ritz Carlton in Orlando. This is a black-tie $250.00 a plate affair and myself along with my friends Louise and Teri who are incredibly talented fundraisers, have been appointed to the Auction Committee so we are in the process of obtaining items for both a silent and live auction. The theme this year will be Mardi Gras and was suggested by my friend Teri. The Leukemia Society is very excited about Everybody Loves Meghan helping them with this effort. We’re pretty excited too since we get to get all dolled up and dance till dawn :o)
Like last year, I was asked to speak again at Light the Night and I’ll share with you what I wrote for the evening. Some of it was taken from past journal entries as I thought they were relevant. So, here goes:
For those of us counting, tonight marks 1 year, 7 months and 11 days since Meghan lost her battle with Leukemia. Tonight as I reflect upon what I said at last year’s event I am again compelled to say something about my daughter Meghan. Last year after having lost my daughter only 7 months earlier, I had to get up here and tell you all about my daughter who was diagnosed with Leukemia at only 21 months of age and who died less than a year later at 2 ½ years old. I wanted you all to know her smile, her wit, and most of all, her sheer determination and love for her family and friends. I wanted to tell you about a 2 ½ year old who battled a cancer we never in our wildest dreams would have thought would have snuck into our family. I want you to look around and know that although our team is missing it’s most valuable player, there are countless other teams out here whose MVP is still battling, or better yet, walking with a lighted balloon firmly in hand as we once did. Last year, I told you all that my team, Everybody Loves Meghan was out for revenge. This year is no different. Again we are out for revenge…..for those who loved Meghan, ours will always be a walk for revenge. I think just this year alone we parents who have lost our children to Leukemia have “welcomed” countless parents of new Angels into our network of grieving parents. Normally, growth is good right? Not so in our “network”. Growth for us means another parent learning to wake up, roll out of bed, and actually breathe each morning knowing that they had to start yet another day without their child. Growth means another parent with a hole in their heart the size of the ocean and beyond. Growth means another parent fighting back stinging tears when he or she hears that song that their child just loved. Growth for us means another parent picking out a headstone. A perfect granite or marble piece of slab in which to etch forever the name of their most treasured gift on earth. Growth means childhood cancer won again. I, along with many, many moms and dads out here are out for revenge. We will not be stopped until we, along with the rest of you help the Leukemia & Lymphoma Society bury cancer forever. No pretty headstone for this victim. No eulogy, no mass….. just the calm sense of knowing we, in the name of our children, took out our anger and frustration on the monster we call cancer, and we won.
I guess, when all is said and done, it may simply be a case of a heartbroken mother trying to do something in her daughter’s honor. I would like to think we do it, and by we, I mean the over 50 walkers we have tonight because of a little girl who touched our lives with a smile, or a giggle, or a happy birthday cha-cha-cha that she loved to sing to whoever would listen. I would also like to think it’s for the hope. The hope that no other mom has to pick out a cold slab of marble to firmly etch the name of her daughter on. The hope that there is a true cure out there. The hope that someone finds it fast. For those of you who have never been close to a child, teen, or adult with a blood related cancer, you come out each year and selflessly raise money, and walk in Light the Night each year going home thinking that you have helped. Behind the scenes at the house of the child who has cancer, we know you helped. We know that the new chemotherapy or protocol that they are using on our child was partly due to monies raised for the Leukemia & Lymphoma Society by people like you giving them the much needed funds to research new drugs and therapies. Funds that would not be available but for the hard work and dedication of people and businesses like you. Help us help the Leukemia & Lymphoma Society find a cure…..we need our most precious gifts here on earth.
Before I end tonight, I wanted to mention a few very special children. Cassidy Jewel Guenther was supposed to be here tonight walking with us as one of our survivors……Sadly, Cassidy earned her wings early Friday morning. She was 3 ½ years old. As I know all too well, her parents lives and the lives of her big brother Cal and the rest of their family will never be the same without their precious little girl. When you look up in the sky tonight as we begin our walk, look for two twinkling stars, as I’m sure Meghan has welcomed her little friend Cassidy to the Heavens and they are dancing and eating cheetos watching the balloons as we Light the Night in their honor. We also have a special little friend Mikey from Orlando who is up at Duke in PICU fighting for his life after his bone marrow transplant. So, to kick off the team totals I‘ll say…… Leukemia……WE’RE BACK and Everybody Loves Meghan is Kickin Leukemia‘s Butt!!!! Tonight Everybody Loves Meghan has raised $17,344.00!!!!!!
Right before we announced our team’s total, it was at this point I had wanted to invite Marcus Murphy and his brother Vinson to the stage but I had not seen them arrive so I had deleted the following portion of my speech:
And last but certainly not least, I’d like to call up to the stage Marcus Murphy and his big brother Vinson. Marcus had his bone marrow transplant earlier this year and his big brother, or to those of us who know him, OUR HERO, Vinson was his bone marrow donor. Marcus and Vinson are both doing very well and we are so proud to have them on our team. I’d like for you all to say hello to these incredible little boys.
Well, as soon as I walked off the stage there grinning from ear to ear was Markie, Vinson and their mom Cathi. I was so excited to see them, I barged right back up on stage and interrupted the proceedings and introduced the boys to the crowd. I asked Vinson if he would like to say something and he grabbed the microphone (as if he’d been public speaking for years) and began telling his story, and the story of his little brother. I stood up there completely blown away and I wish I had his words on tape so everyone could read/hear what he said. Vinson spoke of how Markie had Leukemia but that he donated his bone marrow and saved his life. I can’t for one minute think that there was a dry eye in the house. All I could do was smile so big because I knew here was living proof of what we were so desperately fighting for. I so hoped that people would truly “get it”. I still believe if what Vinson said didn’t do it…nothing can convince the world to help us find a cure. I’m still looking for our Jerry Lewis….but maybe, just maybe, I found him in the way of a brave boy who got up in front of a big crowd and spoke the truth. The truth that we must find a cure. He might be a little smaller, and I know he’s a lot cuter than Jerry Lewis, but his words and his heart said more in those few moments than any Hollywood star could ever say.
So, that’s it in a nutshell. We’re all still missing our girls more and more each day. Grief is a very weird thing in that you’re going along thinking you’re fine and then “bam”! Tommy Lee has found a very novel way to get us to be… ugh…dare I say……gulp……“Gator fans”….. you see, every Saturday when we’re putting our Miami Hurricane flag up, he asks if we can “vote” for the Gators. I always scrunch my face up and make really awful hissing sounds in order to discourage him from even saying those words….but he has now taken to this comeback…… “but MOM!!!!!! Meghan’s hospital was in Gainesville and that is where the Gators are from….so we HAVE to “vote” for the Gators” ……ACK! Who can argue with that logic???? So, although I can’t stomach the thought of “voting” for the Gators and he’s way to young to hear what I really think of “Meghan’s Hospital in Gainesville”…. I’ll let him “vote” for the Gators and hope this too shall pass……….
Good Night May….. Mommy Loves You, Daddy Loves You….Tommy Lee Loves You… EVERYBODY Loves Meghan!!!
Good Night Tay….. Wish ya could’ve stayed awhile.
Don’t forget to donate blood and platelets…….register with the National Marrow Donor Registry and if you’re expecting (sigh)….. Donate your cord blood please!!!!!
Carol
Mom2Angelz
Saturday, September 25, 2004 4:08 PM CDT
All right Stalkers….. Are you ready for this????? $17,344.00 is the amount EVERYBODY Loves Meghan raised for last Saturday’s Light the Night! EVERYBODY Loves Meghan took the challenge and surpassed last year’s amount. As you can imagine, due to all of the hurricanes here in Florida, fund raising was not as easy as you would think. The good news is that this amount has actually grown since last Saturday as late monies are still coming in and I know we’re just under $18,000.00 right now!!!! (So…..(blatant use of a plug here……“if you haven’t sent that donation in….there’s still time” :o) I will update about Light the Night as I get some time. Right now, as most of you know, we’re getting ready for Hurricane #4 for Florida! Now, we are ALL Hurricane Fans….but really, Mother Nature…..we’re talking Miami Hurricanes…..not Charley, Frances, Ivan and Jeanne……give us all a break please!!!! I can safely talk on behalf of everyone in Florida….WE’RE over the Hurricanes….Can November 30th get here soon enough????
Don’t forget to stop by Cassidy’s site www.caringbridge.org/cassidy ….her family is beginning their journey without their precious daughter, and as I well know, these days are very long, and very hard. Also, please don’t forget Mikey www.caringbridge.org/fl/mikey …… he is still up at Duke and OUT of PICU!!!!! He still has some issues they need to get under control, but they are doing a great job and Mikey is one little fighter! Also, Markie www.caringbridge.org/fl/marcusmurphy ….. Continues to do great and I will definitely update you all on how proud I was to have them on our team at Light the Night, and especially proud of Markie’s big brother Vinson who I invited up on stage after I spoke and simply put… blew the entire crowd away with his beautiful words and incredible love for his little brother. Vinson is definitely a superstar and his command of the stage proved that to Orlando last Saturday night!
I’ll scoot for now since ya never know when the power will go…… don’t forget to donate blood, register with the National Marrow Donor Registry and of course, if you’re pregnant, talk to your doctor about cord blood donation. There is no effect on you or the baby, and you will most certainly be rewarded with the knowledge that your baby’s cord blood saved a child’s life.
Night May…… Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….EVERYBODY Loves Meghan!!!!!
Night Tay……wish ya could’ve stayed awhile…..
Carol
Mom2Angelz
Friday, September 17, 2004 7:57 AM CDT
Cassidy lost her battle early this morning.....I'm so very, very sad... please visit her page and let her parents know you are out there thinking about their precious Angel.... www.caringbridge.org/fl/cassidy
Wednesday, September 8, 2004 8:10 PM CDT
Hi Stalkers…… We’re in need of some very urgent prayers right now. Our very good little friend Mikey is back up at Duke again and very unexpectedly is in PICU on a vent. He and his mom traveled up there for his nine month studies (after bone marrow transplant), and he began having seizures and is now on quite a bit of medications to hopefully find out what is causing him this trouble. Please go by and visit Mikey and his mom Sherry at www.caringbridge.org/fl/mikey. She can sure use some uplifting words from us all. Mikey used to make Meghan giggle when she would peek in his door at Arnold Palmer and he would make a funny face to her and then fall back on his bed. Also, please don’t forget little Cassidy (www.caringbridge.org/fl/Cassidy). She is still battling as hard as she can but those darn blasts are swarming her blood causing her white count to skyrocket again. These two children and their families need our prayers.
These are just two examples of why we have to find a CURE for Leukemia. Bone marrow transplants work for some…..but we need a CURE FOR ALL. Our walk for revenge is just over a week away, September 18th and Everybody Loves Meghan will be out in full force showing the country that we care. I was thinking the other day (yes people, I do think sometimes), that WE need a weekend telethon. Where is our Jerry Lewis?
On another note, if you’re wondering about Hurricane Frances, we all made it through ok. At first we were going to high-tail it down to the Naples area, but with the sheer size of Frances and the fact that it was as big as the state of Texas and engulfed the state of Florida, we decided to “hunker-down” (that’s for you Laurie :o) and ride out the storm. Once the tornado warnings started coming in fast and furious Saturday late afternoon, I grabbed Tommy Lee and as many blankets and comforters I could find and we went into our office in the house and stayed there. Well, it was loud, windy and rainy and we were doing good not losing our power…. that is until Sunday morning, when, as the hurricane was still not done with us, our power went out. So we were without power until Tuesday afternoon which considering how many people were without power for over a week with Hurricane Charley…we did pretty well considering. So, our entire family is fine and safe and our homes suffered no damage…..
So, although this is a short entry (amazing huh?), it is a very important update. There is a Light the Night in almost every major city in the United States. You DO NOT have to have a team put together to walk for a cure. You can simply go to lightthenight.org and find a walk in your area and get out there and let your community know how children such as Meghan, Cassidy and Mikey (and boy, oh boy, could I name other kids but unfortunately the list would be staggering). If you’ve ever wanted to see an “Angel List”, check out sharethelove.org and look at the Angel page. The names on this list far outnumber the list of names “off treatment”. It should be the other way around. Also, while you’re there, why don’t you “adopt” one of these families and visit their webpage and let them know you care and you’re doing something to fight Leukemia and other childhood cancers. As is the natural “ebb and flow” of life, the number of “hits” to an Angel’s webpage decreases as the weeks, months and years go by. It is much easier and as a human and natural voyeur, it is a lot more interesting to read the stories of those “still in the mix”. For those parents who keep up their “Angel’s page”, they still come to those pages and read what you write. A perfect example of this is my “first Angel” Shane’s page. I think you could count on one hand the number of days his family has NOT put an entry to him in their own guest book. Shane’s grandmother and mom write to him basically daily and post it in his guest book. The number of outsiders visiting his site has certainly dwindled. Shane will not be forgotten. Neither will Meghan or Alexandria, Jalen, Seth, McKenzie, Janie, Alex, Kailie, Miranda and on and on and on……sigh…. I thought I might go ahead and list this year’s Angels but got too bummed out so decided to quit while I was ahead.
This is especially for those of you in Florida…..PLEASE DONATE BLOOD!!! The shortage is staggering and the need is REAL. With this double hurricane whammy (and I won’t mention the dreaded “I” word taunting us to the south…….blood supplies are running low. Normally when you think of donating blood, you think it’s for trauma patients or surgical patients. This is only partly true. Children AND adults with cancer NEED BLOOD PRODUCTS all the time.
Recap: Pray for Mikey, Cassidy, (Markie that he continues to do so well), and all the other children AND their families battling childhood cancer. From the newly proclaimed “Head of the “Parents of Angels Who Wonder Group” or “POAWWG” (hey Alison…..what do you think about that name??? (lol), please show your support to these families.
Good Night May…. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…..EVERYBODY LOVES MEGHAN!!!!
Good Night Tay…… wish ya could’ve stayed awhile….
Mom2Angelz
Carol
Friday, August 27, 2004 8:33 PM CDT
NEW PHOTOS IN POSITION 3 OF THE PHOTO ALBUM….ENJOY MEGHAN BEING SILLY :o) WE DID!
DON'T FORGET TO STOP BY OUR LIGHT THE NIGHT PAGE AND DONATE ONLINE TO EVERYBODY LOVES MEGHAN: www.active.com/donate/ltnorland/cmack
WARNING, WARNING, WARNING…..THIS IS SOME PRETTY DEPRESSING STUFF…..
When you watch your daughter die, a great big piece of you dies right along with her. I remember every second of her last hour as if it were this morning. I remember when the nurse pointed up to the monitor to show me that Meghan’s heart had stopped beating. I remember thinking, that’s it. How on earth do I get home? How do I get all of Meghan’s clothes, her toys, her pictures, her “night-night” home? I had about a 2 ½ hour drive home alone and although I can remember every trip to the clinic with Meghan, every trip unexpected and expected to the hospital with Meghan, I cannot remember this drive home. I remember making some calls to dear friends who I had to tell before I sent out the email. It was a very surreal drive home. It was incredibly similar to the drive I made behind the ambulance as they transported her from Titusville to Orlando when she was first diagnosed. I remember they wouldn’t let Tommy or I go in the ambulance with her. I’m not sure why I didn’t insist on going in the ambulance. It quite possibly could be because I was definitely having an “out of body” experience and couldn’t believe that it was really Meghan they were transporting. Who knows. What I do know is that I can recall with the most vivid recollection, every minute, hour, day, week, month that she and I spent together after her diagnosis. I don’t think I would have had quite the same snapshots engrained in my head if things were different for us. Would I remember how we would pull the peas away from the other vegetables when she ate vegetable soup? Or would I be annoyed that she was such a picky eater? Would I be annoyed that when she and I were in the garden she would leave those darn weeds there because they had little white flowers on them? Those were flowers to Meghan and she liked them. I’ll always look at those weeds differently. Meghan taught me that. She also taught me that just because life throws you a big fat supersized crap sandwich, you don’t have to act like you just got served the all-you-can -eat cancer buffet. You can smile and dance your way past all the crap and still smile and melt your mommy’s heart. You can still cuddle up close and take a nap with that beautiful “bebe” in your mouth. She was buried with her “bebe”. I’m sure she still has it in her mouth and can still talk perfectly with it in there without it falling out.
My cousin’s wife told me that her little boy got into their laundry basket and did the laundry train choo-choo. She cried thinking of Meghan……. I smiled thinking of Meghan. Meghan loved to do the laundry train choo-choo and it makes me happy to think she’s teaching others her little secret.
Almost 19 months have passed since Meghan earned her wings. I try not to wonder what she would be doing as a 4 year old, but generally, can’t help myself from wandering into that “what if” portion of my brain. I know she would be in ballet class, that’s for sure. She would have also started Pre-K which is now a mandatory thing here in Florida. She would be going to the same school Tommy Lee goes to. She would see him in the cafeteria and want to sit by him…… he would want to be with his friends and probably tell her no. She may still even tell him “hold my hand Tommy Lee” like she used to. She would be swimming at the YMCA with us getting a cute little tan in her pink bikini with her dark eyes. I wonder if her legs would still be so chubby you just wanted to bite them every time you saw them. I wonder, I wonder, I wonder. We are the parents of “I wonder”. We are the parents who look at every child who just might be the age our child would be and wonder. We are the parents of the children who pass the children’s section and clothing racks as if they had a communicable disease , just so we don’t happen to see “our size”. We are the parents whose heart breaks if they have to go into the toy section and see their child’s favorite toy. We’re the parents who when channel surfing, try so hard to skip over PBS Kids just in case Clifford or Zaboomafoo is on. We’re the parents who can hear our children singing those songs. We’re the parents who wonder.
I’m not sure why I even came to write any of this tonight. This website truly is a catharsis of sorts, and short of paying a professional to hear my depressing crap, this actually works for most of us. I know it generally works for me. I hate when I jump from subject to subject and this page doesn’t have a flow to it, but mostly these are thoughts and ramblings, and if I were to edit this into some cohesive paper, I’d chuck it all in the garbage and probably have to go on an antidepressant (not that there’s anything wrong with that :o)
Remember, Everybody Loves Meghan is walking for revenge again this year on September 18th. Please make a donation to our team. You can do it online at http://www.active.com/donate/ltnorland/cmack It’s easy and it’s for a great cause… Please help us help The Leukemia Society find a cure!
Oh well, I guess I’ve taken up the customary hour in this therapy session, so I will end with my usual requests to donate blood and platelets, and please, please, please, register with the National Marrow Donor Program!
Good Night May… Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. EVERYBODY Loves Meghan!
Good Night Tay…..wish ya could’ve stayed awhile…..
Carol
Mom2Angelz
Saturday, August 14, 2004 3:59 PM CDT
UPDATED 8/27/04 WITH NEW PHOTOS in Position 3……Please take a look at silly, silly Meghan :o)
Ok Stalkers- The Leukemia & Lymphoma Society has given you an even easier way to make a donation to our Light the Night team. Please go by my Light the Night webpage at www.active.com/donate/ltnorland/cmack and follow the prompts that will allow you to make a donation online to our team Everybody Loves Meghan. Remember, our goal is $20,000.00!!!! Help us get there!
On to bigger, better things…… Tommy Lee started first grade last week and right off the bat, was chosen Student of the Week. This entitled him to a gift certificate to Roadhouse Restaurant (the one that does the YeeHaw for birthdays). Anyway, he continues to do great at school so I’m very thankful for that. We dodged Hurricane Charley with only some trees down in the neighborhood. My sister Laurie in Orlando was not quite as lucky as she is still without power as is my brother Scott. Laurie’s home has some damage and I’m not quite sure of the extent of that, but luckily, everyone is ok and it’s only property.
I have started to update several times but have not been in the frame of mind to do so. Little Cassidy is still fighting, however, she is having some issues with pain bless her heart. To make matters worse, I got a call last night about 10:00 pm while we were in the middle of the hurricane from Alison, Alexandria’s mom. At first I thought she was just checking on us, but after about a half of a second, knew her voice didn’t sound “right”. It seems a little girl who she is very close with, Kailie, is doing very poorly and her family was having a very difficult time watching her earn her wings. I was very concerned about Alison as she was sitting in the exact same hospital where not quite 19 months ago, it was her Angel growing her pink-tipped wings. I have not had the “guts” to go back to Arnold Palmer to visit. As much as I love the people there, the hospital has too many memories, including unimaginably, delivering Taylor there. The thought of walking into that hospital is just about overwhelming to me. That is why I’ve been especially worried about Alison being at “her” hospital caring for Kailie and her family. I know she’s a tough cookie, but even the toughest break. I heard in her voice last night a very real sadness. I won’t go into details of our talk, but I can say that I admire her with every ounce of my being. She is completely unselfish and does not think about herself (perhaps until it’s too late). So, say a prayer for Kailie and her family as she joins our beautiful girls in Heaven. This is the start of a different journey for them and one that I wish on no parent. Childhood cancer is one thing, and the fight is rough and never pleasant, but the loss will always be greater. So, in the name of those who continue to fight, we will walk our walk of revenge on September 18th.
Keep all of our caring bridge kids in your prayers. Don’t forget to donate blood, platelets and if you haven’t done so already, register to become a bone marrow donor.
Good Night May…..Mommy Loves You, Daddy Loves You, Tommy Lee Loves You….. EVERYBODY Loves Meghan!
Good Night Tay…..wish ya could’ve stayed awhile…..
Carol
Mom2Angelz
Monday, August 2, 2004 6:41 PM CDT
WELL….IT’S OFFICIAL AND THE TOTALS ARE IN!!!!! The First Annual Meghan Mack Memorial Softball Tournament raised $2,500.00 it’s first year out! This is the actual donation amount we are turning in on behalf of our team, Everybody Loves Meghan AFTER our expenses! This is only the beginning as we continue to sell t-shirts and balloons at a very quick pace. Our $20,000.00 goal is coming into view….look out Coldwell Banker….we’re right behind ya!
Now on to details of the softball tournament itself. After months of hard work by my friend Angie getting donations for food, water and raffle prizes, the day was finally upon us. We started out early Saturday morning putting up tents, tables and grills. Thankfully, Louise coerced her husband Allan to get up at the crack of dawn and come down to help out. Little did he know he would be putting up tents with very little in the way of real tools. Isn’t that what women do…..use the back of their heel as a hammer????? Who knew there was an actual metal thing with a stick attached to it that men use to bang stuff with? So, without the proper equipment, Allan got the tents up with little to no cackling from the women watching :o) As we were setting up, the teams began to arrive early and began warming up and at exactly 9:00 a.m., the first pitches were thrown out starting the games. We had three fields going at the same time, two co-ed fields and one men’s field. It was a little bit chaotic after the first games ended and scores were turned in and players were hungry. Luckily, I had great friends and family members who came out and worked tirelessly all day in the scorching Florida sun. T-shirts were sold, raffle tickets sold, and lots, and lots of water and food was sold. Tommy took control of the grilling (mumbling under his breath about what I’d gotten him into this time :o); my sisters, Laurie and Terri handled the food tent along with Laurie’s friend Nikki. Good thing they both work for the police department, as there was quite a bit of money exchanging hands out there. Louise and Teri held down the checking in of teams, selling t-shirts and raffle tickets, as well as helping out in the food tent when they would get bombarded. Me? I was stuck refereeing between teams and umpires who had opposing ideas about tournament rules and calls made during games. I had no idea that I would be called upon (several times mind you) to “make the call”. I also got a crash course in bracketing a softball tournament shuffling 13 teams on three fields, and what began as four umpires, after several hours, dwindled down to two umpires to umpire the remaining games for the tournament. The two umpires that ended up completing the day, began their day at 8:30 a.m. and didn’t leave until the last game finished after 9:00 p.m. I cannot say enough about how hard they worked. I knew the teams would be competitive, but I was a little taken aback at some of the “issues” I had to deal with. I have a lot more knowledge for next year, and I guarantee that the umpires will be treated with more respect. I don’t want to leave you all with the impression that anyone or any team got completely out of control, but there were “heated” debates about calls made, and rulings made. On a side note, the head umpire called me Sunday morning to tell me that he thought the tournament was a success and that it ran very smoothly. He also commented that he had not realized that Meghan was my daughter and how sorry he was for her loss. He also told me to contact him at any time and he would be right there to help! I know he knows I’ll be calling him for next year’s tournament :o) While all of this was going on, the Brevard County Sheriff’s Department came out with their petting zoo, bomb squad robot and motorcycle police to entertain and educate the children (and parents) at the tournament. The Sheriffs Department was an incredible addition to the tournament and Angie gets credit for organizing their attendance at our event. So, we learned quite a bit for next year and I’m sure with Meghan’s help, it will be a bigger, better event!
First Place in the Men’s Division went to the team from Herb Daniels Towing from Titusville
Second Place in the Men’s Division went to the team from Florida Casa Realty from Titusville
First Place in the Co-Ed Division went to team V.S.I. from Daytona Beach
Second Place in the Co-Ed Division went to On the Mark Softball from Delray Beach
This past Sunday, I along with many friends and family members of little Cassidy attended her Make-A-Wish Princess “un-birthday” party out at one of the Disney resort hotels. To say that this party was spectacular is an understatement. Cassidy was dressed like the beautiful princess she is complete with tiara, magic wand and very sparkly shoes. Of course the overshadowed sadness was still palpable as you watched this sweet little girl cling to her mommy as she got overwhelmed by the attention bestowed on her. I know there was not one person there who would not give their right arm or any other body part for that matter, to make her all better. The love for Cassidy that filled the ballroom was magical, and her smile (albeit sometimes pressed into mommy’s shoulder) was worth every second of being there. I was so grateful to run into some very, very special people. Mimi, one of Meghan’s nurses was there and it was so very nice to see her and talk to her and find out how some of the kids were doing. I saw Theresa whose beautiful little girl April lost her battle with cancer last year. I got to see Sherry and Mikey (who looks fabulous after his transplant), along with Carol and “Baby Grace” who was one of Meghan’s very best friends at Arnold Palmer Hospital. Lastly, I saw the cutest little boy walk thru the doors and knew instantly it was little Markie. Markie is doing great after his transplant and looks the picture of health! The best part of seeing Markie walk thru the door was the person who followed him into the room. Cathi and I met thru little Cassidy and her family. Cathi works with Cassidy’s daddy Ray and if you don’t think there is something going on, listen to this…….out of a very small office (I think there are maybe four people in their office), two of the children were diagnosed with Leukemia. Hmmmmmmmmmm……….. Coincidence? Not sure, but I will spend my life fighting this disease and making sure I don’t meet any more wonderful people this way. I have met so many incredible parents during our journey, and as my journey without Meghan continues, I continue to meet moms and dads who are over the top and excellent role models for parents of healthy kids. I think every parent who takes their children for granted should have to walk onto the oncology floor of a pediatric hospital. Watch as these parents fight for their child’s right to live, and then watch as some of those same parents fight for their child’s right to die………with dignity, grace and most importantly, on their own terms. This is not easy. But these are the parents I know.
As we gear up for our revenge walk again this year, I ask each and every one of you to take a minute to write out a check, no matter how big or small, to The Leukemia & Lymphoma Society and help us reach our goal. I know $20,000.00 is a drop in the bucket in the scheme of things, but it may be your check that helps find a cure. Please mail any donation, large or small to me at PO Box 1204, Titusville, FL 32781.
Remember to stop by Cassidy’s website www.caringbridge.org/fl/cassidy and let her mom and dad know you’re out there praying for her and if you want to see some really handsome little boys, stop by Mikey’s page at www.caringbridge.org/fl/mikey and Marcus’ page at www.caringbridge.org/fl/marcusmurphy I know a lot of you who are regular stalkers are faithful caring bridge followers and are always kind enough to stop by a link and follow yet another child battling a horrific disease that no child or adult should have to endure. Please take a minute to let these kids know you care.
Good Night May…..Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…..EVERYBODY Loves Meghan.
Good Night Tay……Wish ya could’ve stayed awhile…..
Mom2Angelz
Carol
Monday, July 19, 2004 7:36 PM CDT
Hey Stalkers…….I know it’s been awhile, but we’ve been busy, busy, busy. First, let me remind everyone that The First Annual Meghan Mack Memorial Softball Tournament is this Saturday, July 24, 2004. Also, don’t forget to wake up Friday morning, July 23rd and wish our sweetest Angel a very Happy Fourth Birthday. I have asked our local radio station, WMMO 98.9 to do a birthday Select-A-Set in honor of Meghan’s birthday, so don’t forget to listen at 8:00 a.m., Friday, July 23rd. It’s very hard to pick out 3 songs, but I thought I’d give it a try since my good friends Louise and Mel have been so good at selecting songs in Meghan’s honor, the first Select-A-Set sent in by Louise last year for Meghan’s first birthday in Heaven, and then Mel sent in a very moving Select-A-Set in honor of Meghan’s first “anniversary- hate that saying” in Heaven. So, anyway, listen up and get the tissues out. I’m always up for a good cry on my way to work! I like to keep them guessing when I’ll be a basket case and when I’m actually stable :o) Speaking of stability…….
When worlds collide……….. I don’t know the exact date, but before Meghan earned her wings, I had the fortunate experience of “meeting” a mother of a little girl who had undergone her bone marrow transplant after relapsing with ALL (you know the Leukemia…..the one with the “greatest” cure rate????? HA!)…. Anyway, this little girl wrote in Meghan’s guest book and I had to go “check her out”. That’s where I “met” an incredibly wonderful and beautiful mom. The little girl’s name…..Alexandria Nicole Haddock. Her mom……Alison. Well, our girls earned their wings within 9 days of each other, and Alison and I have been providing each other strength ever since (she more so to me than I to her). So, 17 months after losing our girls to Leukemia, we finally meet in person. Alison asked me to meet her in Charleston, South Carolina to attend a Bereaved Parents USA Conference. After what almost became a sequel to “Planes, Trains, & Automobiles” we meet. When I say it was as if we had known each other all our lives, I mean it. She even drinks a soda first thing in the morning like me :o)
So, Friday morning, we attend the opening ceremony, then it’s off to seminar after seminar each one lasting an hour and then right on the heels of that one ending, another one begins. The majority of parents there had not lost their children to cancer, rather it seems the majority lost their older children to automobile accidents. The reason I’m mentioning their mode of passing is that it seemed to me that most of the parents could barely say their children’s names without becoming emotional wrecks. There was much talk about guilt and anger from these parents especially. In retrospect, it appears to me that I am one of the lucky ones. HUH? Yes, lucky in that I was there. You know the saying your parents have told you (or maybe it is just my wacky parents, but….. “I brought you into this world I can take you out”?) That statement has become very profound to me. I brought Meghan into this world, and although I did not “take her out”, I was there and held her as she left. I got to say my goodbyes. I got to hold her and kiss her and smell her. I got a chance to begin grieving her death long before it became a reality. As the pessimist in our family, I always had the feeling she would not beat that Leukemia. I hoped and prayed and fought as hard as I could to help her beat it, but something, maybe “mother’s intuition” told me this was beyond all of our powers. Ok, let me get out of this deep rambling I’m in and resurface. Anyway, I think the conference was helpful, maybe in the sense of letting me know that (1) I am not alone; (2) I am not an emotional wreck [most days] and (3) there is life after losing a child (or 2 in my case, but at this point, who the hell is counting huh?).
One of our “seminar’s” at this conference was “Journal Writing” where they encouraged parents to write their feelings down. Well, for Alison and I, this was a no-brainer. The two of us could ramble like nobody’s business. So, in we go, pens in hand. Everyone is asked to write a journal and then read it out loud. I know I’m in serious trouble as the readings begin. Serious, and sometimes dark entries emerge from the lips of bereaved parents. UGH! I have no time to rewrite something. I slip a note to Alison telling her “I have done this completely wrong”…….sweat begins to pool on my forehead as I think to myself, I am such an idiot. Here I am surrounded by these people who can barely mention their kid’s name, and I’m writing something totally inappropriate. Well, in all it’s inappropriateness, I made Alison cry (woohoo- I did it- I was the first of us to make the other cry :o) (kinda an inside joke, but anyway)….. So, here’s what I wrote in it’s first version (I’d clean it up, but it’s the first draft that I read aloud, and wanted to keep it that way for my dear friend Alison.
“Off to South Carolina. Off to meet Alison. Our lives came crashing together due to one horrible disease, Leukemia. Will she like me? Am I as clever in person as I am on Meghan’s page? Have we truly bonded or will we go home thinking sheesh- I hope I never had to see her again! So we meet. Instantaneously I knew that the friendship we developed over the past year and a half since our daughters died within weeks of each other is real. We are truly kindred spirits. We have pain, yes, and lot’s of it. But she and I laugh too. The kind of laughs you had with your girlfriends in high school. I feel as if I’ve known her forever and yet it’s only been 24 hours. Our girls are smiling at their moms- and their moms are smiling back”.
So, as you can read, not the kind of thing you want to read aloud after person after person writes gut wrenching, soul-searching, mind-wandering notes about their grief. But, I wrote it, I’m proud of it and I’m especially proud of my friend. Even if she does cry at the drop of a hat :o) If I had known it was that easy, I could have really made her lose her mascara (lol).
On to other things……..when you get your child’s original diagnosis, you feel as if a brick wall has been firmly placed upon your chest. I don’t believe the brick wall is ever removed after your child is in “remission”…..or after the ever-elusive, 5-year cancer free mark. I can only imagine what that wall feels like when they tell you your child has “relapsed”. Well, Meghan’s dear little friend Cassidy has relapsed. To make matters worse, she has relapsed after her bone marrow transplant where her big brother Cal was her perfect matched, sibling donor. The reason I am being SO specific in this information is to point out again, WE NEED TO FIND A CURE! Transplants, are great, but they are not the “end all, be all”. We need something more. Cassidy had EVERYTHING going for her (as much as can be when you have Leukemia). She is continuing to fight, and I am beside her family all the way, but we must be the ones to find a cure. This is absolutely ridiculous. Doesn’t it seem odd that there are so many children out there with childhood cancer? Does anyone see this but me (and Alison)? Think back….. When you were a kid (some of us farther than others :o)……. how many families did you know where there was childhood cancer? Come on…..think????? One, two????? If you are average, probably NONE. Yes, we have computers, and yes we have this wonderful CARINGBRIDGE family, but we all had telephones (at least most of us)…..we had local newspapers…..we all went to school……how many? How many kids can you count that you knew (or even heard of) that had childhood cancer??????? Exactly! OUR generation must be the ones to find a cure. Please, register to become bone marrow donors (it’s still the last resort), donate blood, donate your time to local charities who help kids with cancer. There is too much talk on caring bridge of kids relapsing and Angels earning their wings. If not you…..than who? Go visit Cassidy’s page and let her family know you’re out there thinking about their precious daughter and their whole family as they begin to fight again for Cassidy’s life. www.caringbridge.org/fl/cassidy
Ok, had to jump off my soapbox, sorry, sometimes that jump is a little higher than other days. It just makes me so mad that all of these kids are suffering so. Oops, there I go again………
Let me summarize the above, since this is such a rambling mess. First, Say a prayer for Cassidy and stop by her website. She is a beautiful little girl who has been so brave. Second, this Friday, July 23rd at 8:00 am, listen to WMMO 98.9 for Meghan’s Birthday Select-A-Set. Third, If you can, stop by Saturday, July 24th the Sandpoint Park Marina Softball Fields to help us out. Donate your time to a worthy cause. ALL of the monies raised go to our Light the Night Team “Everybody Loves Meghan” benefiting The Leukemia & Lymphoma Society. And lastly, donate your blood, platelets, bone marrow and register to become an organ donor. ALL of these things save lives. Do your part.
Good Night May….. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You…..EVERYBODY Loves Meghan.
Good Night Tay……wish ya could’ve stayed awhile…..
Carol
Mom2Angelz
Wednesday, June 23, 2004 7:54 PM CDT
REMINDER---- REMINDER----- REMINDER------
SATURDAY, JULY 24, 2004
THE FIRST ANNUAL MEGHAN MACK MEMORIAL SOFTBALL TOURNAMENT will be held at the Titusville Municipal Marina Softball Field at Sandpoint Park. We have over 25 great raffle prizes including stays at some of Cocoa Beaches nicest resorts, Ocean Potion Suntan Lotion Gift Basket, tickets to Wet-N-Wild, a Facial, a Massage, gift certificates to Dixie Crossroads, and much, much more. Also, don't forget the Brevard County Sheriff's Department will be out with their petting zoo, K9 demonstration, Bomb Squad Robot demonstration, child fingerprinting and much, much more!
Ok, Stalkers, This year I was asked to speak at the Leukemia & Lymphoma Society's Kickoff Luncheon held last Tuesday, June 15th. Since I am not an "off the cuff" speaker, I had to write out my thoughts. So, for all of you to read, here is what I said last week:
As we approach this year’s Light the Night Walk, I reflect upon what I said at last year’s event. Heather had asked me to speak before the walk, and although I absolutely hate public speaking, I felt I had to say something about my daughter Meghan, very much like again today. Last year I had to get up and tell the crowd about my daughter who was diagnosed with Leukemia at only 21 months of age and who died less than a year later at 2 ½ years old. I had to tell them about her smile, her wit, and most of all, her sheer determination and love for her family and friends. I had to tell them about a 2 ½ year old who battled a cancer we never in our wildest dreams would have thought would have snuck into our family. I had to tell them that although our team was missing it’s most valuable player, there were other teams out there whose MVP was still battling, or better yet, walking with a lighted balloon firmly in hand as we once did. Last year, I told the thousands of walkers in Orange County that my team, Everybody Loves Meghan was out for revenge. This year is no different. Again we are out for revenge…..for those who loved Meghan, ours will always be a walk for revenge. I think just this year alone we parents who have lost our children to Leukemia have “welcomed” the parents of over 25 new Angels into our network of grieving parents. This may not sound like a lot but if you consider we’re just 6 months into the year that averages out to over 4 children per month….and that’s just the ones I know about personally. Normally, growth is good right? Not so in our “network”. Growth for us means another parent learning to breathe each morning. Growth means another parent with a hole in their heart the size of the ocean and beyond. Growth means another parent fighting back stinging tears when he or she hears that song that their child just loved. Growth for us means another parent picking out a headstone. A perfect granite or marble piece of slab in which to etch forever the name of their most treasured gift on earth. Growth means childhood cancer won again. I, along with many, many moms and dads out there will be out for revenge again this year as we beg, plead and guilt our friends, families and complete strangers like you to help us raise one, two, five, ten, twenty, thousand dollars for the Leukemia & Lymphoma Society whose goal it is to bury cancer forever. No pretty headstone for that victim. No eulogy, no mass….. just the calm sense of knowing we, in the name of our child, took out our anger and frustration on the monster we call cancer, and we won.
I guess, when all is said and done, it may simply be a case of a heartbroken mother trying to do something in her daughter’s honor. I would like to think we do it, and by we, I mean the over 50 walkers we had last year because of a little girl who touched our lives with a smile, or a giggle, or a happy birthday cha-cha-cha that she loved to sing to whoever would listen. I would also like to think it’s for the hope. The hope that no other mom has to pick out a cold slab of marble to firmly etch the name of her daughter on. The hope that there is a true cure out there. The hope that someone finds it fast. For those of you who have never been close to a child, teen, or adult with a blood related cancer, you come out each year and selflessly raise money, and walk in Light the Night each year going home thinking that you have helped. Behind the scenes at the house of the child who has a blood related cancer, we know you helped. We know that the new chemotherapy or protocol that they are using on our loved one was partly due to monies raised for the Leukemia & Lymphoma Society giving them the much needed funds to research new drugs and therapies.
Funds that would not be available but for the hard work and dedication of people and businesses like you. Help us help the Leukemia & Lymphoma Society find a cure…..we need our most precious gifts here on earth. So on behalf of parents everywhere like me, thank you, and good luck with your fundraising efforts.
In closing, I will end with what I told Meghan every night before she went to sleep. This will also give you an insight as to how we got our team name…. Good Night May, Mommy Loves you, Daddy Loves you, Tommy Lee Loves you….. to which she would reply in her froggiest voice…..EVERYBODY Loves Meghan!! She was right. Everybody Loves Meghan!
As I was speaking and my legs shaking, all I could hear were sniffles throughout the room. I look over to what I was hoping would be my rock....my source of strength.... Louise who is our die-hard leader and team captain of Everybody Loves Meghan. Well, wouldn't ya know it, her face is beet-red and she has big tears running down her face. So much for the strength :o) After I finished speaking, a woman came up to me and asked if she could use my speech to print in her next newsletter for her office because they have a team participating. Of course I was flattered and after saying of course, blah, blah, blah....it dawned on me......so I said...."hey.......you better not use MY stuff to raise more money than MY team" (always the competitor I know)..... anyway, she smiled and said "There's no way we can catch you guys". She's right. Everybody Loves Meghan has a lofty goal this year, but we've got the cutest angel on our shoulders and a magic wand pushing us all to raise more money to find a cure.
So, everybody get your wallets out, and write those checks. We're coming after you!
Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Good Night Tay......Wish ya could've stayed awhile.
Mom2Angelz
Carol
Monday, May 24, 2004 7:55 PM CDT
June 6, 2004****Update on Miranda Rae****
Stalkers: Miranda didn't make it. She lost her battle with this awful monster yesterday. Please stop by and show your support for her family. www.caringbridge.org/nc/mirandarae
Journal Entry May 24, 2004:
I wanted to keep this up a little longer (there is a new journal entry below this poem)..
Why Us?
Most women become a mother by accident, some by choice, a few by habit. Did you ever wonder how mothers of children with cancer are chosen? Somehow, I visualize God hovering over the earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs his angels to make notes in a giant ledger...
"Armstrong, Beth, son, patron saint Mathew" "Forest, Marjorie, daughter, patron saint Cecilia" Rutledge, Carrie, twins, patron saint Gerald. “He's used to profanity" Finally, he passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly, smiled God. "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But does she have patience?" asks the angel. "I don't want her to have too much patience or she will
drown in a sea of self pity and despair. Once the shock and the resentment wears off, she will handle it". "I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother, You see, the child I'm going give to her has its own world. She has to make it live in her world and that's not going to be easy." "But Lord, I don't think she even believes in you," said the angel. "No matter. I can fix that. This one is perfect, she has just enough selfishness. The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child
occasionally, she'll, never survive.” Yes, here is a woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a step ordinary." "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." "And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles and says "A mirror will suffice."
"Author Unknown"
Greetings Stalkers. As I’ve said before, I usually need something to compel me to write in this journal. Tonight I was compelled by a random thought I was having (which, if you know me…..I have lot’s of “random” thoughts (lol). Anyway, as I was doing my usual “checking in” of my caringbridge kids, something someone told me a while ago popped into my head and made me think a little deeper about what she said.
We had been talking about Meghan’s Fund and what exactly the money should go for and I was saying that I thought we should have “buddy families”. This would pair the family of an Angel with a family whose child is currently undergoing treatment. This would be helpful because as many of you know, hospital and clinic visits and just daily routines are very hectic and with the buddy family, we would visit new families recently diagnosed, bring them materials about resources they could contact to assist them, and basically be a support system as a kind of “been there, done that…got the t-shirt” go-between. I was told that although this was a “good idea”……she didn’t think it would work because we are their “reality” and they may not feel comfortable being around us. Now, you might say “oh, how awful…why would anyone not want to be around you?” The answer is simple. When your child is battling cancer, you rely on every last bit of hope, prayer, and yes, even a little bit of hiding your head in the sand to help you keep your sanity and the thought of your child not making it as far away from your thoughts as possible. When a child is newly diagnosed, a family does not want to meet someone, get close and as they tell you their deepest darkest fears, they ask you “how did you become involved?”…..”oh, your child “had” cancer?……how is he/she now????? She’s an Angel you respond…..she was one of the ones the “statistics” didn’t take into account. She is one of the ones that a bone marrow transplant didn’t cure. She is one of the ones who just like your child, started out so well, beating the odds, playing all day, eating well, never nauseated……she was one of the ones who didn’t make it. So, as you can see, that would not be something a family would want to know starting out in the crazy, mixed-up world of childhood cancer. So, the “buddy family” idea is evidently not such a great one. Even though we have experience under our belts and a long road under our feet….no one wants to wear our shoes. To get back to my original point, and yes folks there is one somewhere in this rambling mess, as I look around the caringbridge sites and I see all the guestbook entries of complete strangers who have peeked into our worlds and extended their prayers and well wishes to those newly battling this disease, and to those who continue their battle, I think you too, I’m afraid, are no longer “their reality”. They have entered a new world. There is the “perfect world” where your children are all healthy and happy. There is the “not so perfect world” where your child has childhood cancer and is undergoing treatment or in remission. And then there is as I like to call it, the “completely over the top, crappiest of crappy worlds” where your child becomes the Angel. This is the world where you visit other caringbridge sites and unless you are visiting the site of an Angel, you are an outsider. Not necessarily an unwelcome outsider, but a “reality bites” outsider. We are the mothers who always put angel wings around our child’s name, or always put “mom to Angel so-and-so”. And again I realize that this is our very strong urge to keep our child’s name alive. We do have our own little network too. In fact, it is growing by leaps and bounds. I think just this year we are at or over 25 new Angels into our network. Normally, growth is good right? Not so in our “reality”. Growth means another parent learning to breathe each morning. Growth means another parent with a hole in their heart the size of the ocean and beyond. Growth is another parent waiting for a sign from their child to know he or she is ok. Growth means another parent fighting back stinging tears when he or she hears that song that their child just loved. Growth means another parent picking out a headstone. A perfect granite or marble piece of slab in which to etch forever the name of your most treasured gift on earth. Growth means childhood cancer won again. I, along with many, many moms and dads out there will be out for revenge again this year as we beg, plead and guilt our friends, families and complete strangers to donate one, two, five, ten, twenty, one hundred dollars to the Leukemia & Lymphoma Society whose goal it is to bury cancer forever. No pretty headstone for that victim. No eulogy, no mass….. just the calm sense of knowing we, in the name of our child, took out our anger and frustration on the monster we call cancer, and we won.
So, with that said, I’m officially kicking off the 2004 “Everybody Loves Meghan” Leukemia & Lymphoma Society’s Annual Light the Night Event with a plea to all of you to send whatever you can, whenever you can (hopefully by September 19th if possible, but we’ll certainly forward any monies received after that date to the Society). Our first fundraising event as you all know will be our “First Annual Meghan Mack Memorial Softball Tournament” on Saturday, July 24th at the Titusville Municipal Marina Softball Field at Sandpoint Park in Titusville, Florida. Entrance Fee per team is $125.00 with all proceeds going to the Leukemia & Lymphoma Society. We will have the Brevard County Sheriff’s Department out with their K9 unit, Bomb Squad demonstration with their Robot, Face Painting, Fire Trucks, Motorcycle Unit and many, many more activities to “get this party started”.
Well, I will remind you all to donate blood and if possible, platelets…don’t forget to spread the word and get people registered with the National Marrow Donor Registry and if you’re pregnant, or thinking about becoming pregnant, talk to your doctor about donating your cord blood. We must all work towards getting a national registry for cord blood.
Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You, EVERYBODY Loves Meghan!
Good Night Tay……wish ya could’ve stayed awhile……..
Mom2Angelz
Carol
Sunday, May 16, 2004 10:11 AM CDT
Why Us?
Most women become a mother by accident, some by choice, a few by habit. Did you ever wonder how mother of children with
cancer are chosen? Somehow, I visualize God hovering over the earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs his angels to make notes in a giant ledger...
"Armstrong, Beth, son, patron saint Mathew"
"Forest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, patron saint Gerald. “He's used to profanity"
Finally, he passes a name to an angel and says, "Give her a child with cancer."
The angel is curious. "Why this one God? She's so happy."
"Exactly, smiled God. "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But does she have patience?" asks the angel. "I don't want her to have too much patience or she will
drown in a sea of self pity and despair. Once the shock and the resentment wears off, she will handle it".
"I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a
mother, You see, the child I'm going give to her has its own world. She has to make it live in her world and
that's not going to be easy."
"But Lord, I don't think she even believes in you," said the angel.
"No matter. I can fix that. This one is perfect, she has just enough selfishness.
The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child
occasionally, she'll, never survive.”
Yes, here is a woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be
envied. She will never take anything her child does for granted. She will never consider a step ordinary."
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise
above them."
"And what about her patron saint?" asks the angel, his pen poised in mid air.
God smiles and says "A mirror will suffice."
"Author Unknown"
UPDATE MAY 16, 2004:
ANNOUNCING, ANNOUNCING, ANNOUNCING!!!!! The First Annual Meghan Mack Softball Tournament to benefit the Leukemia & Lymphoma Society will be held, Saturday, July 24, 2004 in Titusville, Florida. Team registration is ongoing, so if you have a softball team (or would like to get one together), please contact me and we will get you registered. Registration per team is $125.00. We already have at least 6 teams committed to play this event with other teams signing up daily. Please don’t think you have to be here in person, or on a team to simply make a donation to the Leukemia & Lymphoma Society. Any money you send now will go towards our team for Light the Night in September. The pure outpouring of support and excitement to play this tournament has been to say the least, unexpected, but incredibly rewarding. This whole idea came from my good friend and Meghan’s “other mommy” Angela…or as we all call her “Jazzy’s Mommy” :o) She is spearheading this tournament, and quite frankly, this woman is on a mission and it’s getting just a little bit scary :o) Hopefully no one at the Brevard County Sheriff’s Department reads this website, because I guarantee, from now until July 24th……if it doesn’t have anything to do with Meghan and this tournament…..nothing is going to get done at her job (lol). I won’t make the obvious joke (as if anything ever did get done at work by her….besides stalking Meghan’s Journey every ten minutes (lol). Ok, I guess I should stop the jokes….she really is behind this whole thing and I definitely couldn’t do it without her (who else has the time….ooops! I digress- ya know I love ya Angie :o)…. As a lot of you stalkers know, last year, our team “Everybody Loves Meghan” exceeded our wildest dreams and raised over $15,000.00 for the Light the Night event held to benefit the Leukemia & Lymphoma Society in September. Our team was over 50 walkers strong last year and this year we are hoping to have just as many walkers and we have increased our goal to an outrageous amount of $20,000.00! I know this sounds like a lot for one small little “home grown” team who beat hundreds of corporate teams and ended up SECOND “Overall Team” and FIRST “Family and Friends Team” in Brevard, Orange and Polk Counties!!!! We are definitely “The Little Team that CAN”!! With an Angel pushing us along with her “magic wand” we really have no excuse as to why our team can’t blow all of the competition away this year! Hopefully, in addition to walking in memory of my Angel Meghan, our Arnold Palmer Hospital Survivors, Cassidy, Mikey, and Marcus can join us walking proudly to show the world Leukemia can be beaten! These three have beaten tremendous odds following their bone marrow transplants this year and depending on what their doctors say, may or may not be able to be there personally. There are a lot of restrictions for these kids for quite awhile after transplant, so unless they are cleared by their doctors to be around thousands of people (which, as you can imagine, may not be a great idea for someone with such a delicate immune system), they may not be able to be there physically but they and their families will definitely be there in spirit! Last year, Cassidy and Meghan’s friend “Baby Grace” who is also kicking Leukemia's butt, surprised us all by showing up and walking proudly with their “Everybody Loves Meghan” shirts. “Baby Grace” and Cassidy’s mommies and daddies raised thousands of dollars for the Society last year and the surprise of them being there was nothing short of wonderful.
Ok, so that’s it for now…..if you’re wondering how we’re all doing, we’re “ok”. Tommy Lee is doing wonderful in Kindergarten and CANNOT wait to get to First Grade. There are so many funny moments with him that I could write a book already with his “Tommyisms”…..one in particular which has become a running joke at my office is, that his teacher (the wonderful) Ms. Gandy (and no, folks…she doesn’t know a thing about this website so I’m not kissing up for better grades :o).....anyway, she called him up to her desk to ask him if he would be one of two students in his class to read a story he had written about Abe Lincoln to other grades in his school. He immediately told her yes. As he was explaining this story to his father and I, (and mind you, this kid is very dramatic)......he said “mommy, I went back to my desk and sat down and (picture him banging his fist against his head) said to myself...... “I can’t change my mind now!”. I guess this will never depict how funny it really was, but I have to laugh now every time I think of him banging his fist to his forehead “I can’t change my mind now” (lol).
Meghan apparently is visiting Tommy Lee quite a bit these days (probably not any more than usual, he is just being pretty vocal about these visits).....anyway, he came home one day and told me he heard Meghan at recess. He told me he was looking at the sky and the clouds started moving apart and he heard Meghan say “hi Tommy Lee” (of course, this too had to be done by him in a higher voice to simulate Meghan’s voice ;o) Then one day this past week, before school he wanted to play checkers BEFORE leaving (ugh!). So I told him while I made his breakfast he could play. All is well, and we get into the car. First thing he says is “Meghan cheats”......now, we all know Meghan cheats......she’s a girl, and as a girl....we have different rules naturally :o) Anyway, I asked what happened and he said as he was getting the checker board set up, she kept moving her pieces before he could even start the game. He was NOT happy with her cheating :o) I told him she’s just younger than you and she’ll get better and learn to play better one day. He was fine with that response, I on the other hand had to blink my eyes and try to push those stinging tears away before once again, my makeup ended up all over my dress. So, swallow the lump, kiss him goodbye and open the locked car door to let my little boy out to school. As usual, have to drive by “the bears” who always manage to put a smile on my face even though they bring back such a wave of emotion. Their silly laziness up on their platforms lying on their bellies sunning themselves always reminds me of Meghan. She LOVED those bears :o) I do too.
Well, I will remind you all to donate blood and if possible, platelets…don’t forget to spread the word and get people registered with the National Marrow Donor Registry and if you’re pregnant, or thinking about becoming pregnant, talk to your doctor about donating your cord blood. We must all work towards getting a national registry for cord blood.
Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You, EVERYBODY Loves Meghan!
Good Night Tay……wish ya could’ve stayed awhile……..
Mom2Angelz
Carol
Monday, April 19, 2004 9:33 AM CDT
UPDATE: APRIL 30, 2004: This will be brief. I wanted you all to stop by a website that was made for Meghan by a special young lady who lost her baby sister several years ago to a drowning. She has another little sister who is having some health issues now. She did have a caringbridge site however, I'm not sure what has happened as the page has been deleted. Anyway, please take a moment to check out this beautiful memorial to Meghan.
http://www.angelfire.com/va3/stardancermemorials/meghan.html
I also want to let you know we raised about $235.00 for Candlelighters of brevard with our garden stepping stones. Meghan's Memory Makers are off to a great little start with special thanks to Lynn of Ohio for her donation, Melanie of Orlando for her donation and the many, many friends and family who came out to help, especially Louise and Teri who were my backbone throughout my panic attacks. Also, special thanks to my good friend Ann who came all the way from Minnesota for about two hours worth of visiting time (we won't mention her FABULOUS sense of direction :o) Also, my dear friend Angie has come up with another GREAT idea to help us in our fundraising efforts and we will be getting these together soon. Stay tuned......
UPDATE APRIL 19, 2004
“We’ll do the best we can”. That’s it…that’s what Meghan’s doctor told us exactly two years ago today when he told us Meghan had perhaps the rarest Leukemia known, Bi-phenotypic Leukemia. Essentially he said, you have the “good” Leukemia ALL (and trust me when I say I use that term very, very loosely) AND the “bad” Leukemia AML. As he sat there and wrung his hands and fidgeted in the hospital chair not quite knowing what to say next to us while I watched Meghan’s blood go thru the “cleaning machine” I thought I had fallen into the rabbit hole and anytime now the Cheshire cat would appear and give me that toothy grin and say “just kidding”. Well, the cat never showed up in this nightmare and Meghan spent the next 16 days in ICU fighting for her life. She survived those rough days in ICU and went on for another 10 days on the Hematology/Oncology floor at Arnold Palmer Hospital for Women and Children in Orlando, Florida. She went on for another 7 months of chemotherapy and many, many pokes and prods that most people never could imagine a child has to go thru. As she regained her strength, humor, silliness and her loving nature, we all had hope. Hope that she would be the one to survive. Well, after a very stressful soul-searching decision, we of course decided on transplant (this, after the top leukemia doctors from St Jude and Memorial Sloan Kettering – the best of the best in the country advised me in no uncertain terms to do it now). So, now it’s time to find a match. No such luck on this front. Must try cord blood. Well, as luck would have it, we could only find a 5/6 match on the cord blood front. So, again, after much research, we take it. Most of you know the outcome. Leukemia Sucks.
So, that leads us to today. If you’re keeping track, today is officially Taylor’s “due date”. Well, you know that God of ours….he’s a real jokester….first he says, here, let me give you this beautiful child…a boy…you’ll be so proud and happy….and we were. To add to our happy family, we had another baby on the way….. a girl…..she’ll be called Meghan Marie I decide. And so she was born. July 23, 2000 as her daddy, Aunt Laurie and Aunt Terri all welcomed her into the world at Parrish Medical Center in Titusville, Florida. She was only 21 months old when she was diagnosed. How’s that for comedy? Next, in the endless bag of tricks, we have to bury our most precious baby girl. A pink fluffy coffin is where she lays now. Then, as luck would have it, we jump through hoop after hoop and I become pregnant again. A girl they say…..woohooo! I say. But wait, there’s more….he has some more tricks up his sleeve. This baby that I have sent will not even get her first breath. And you my dear will still have to wake up each morning and begin each day anew without your girls in your arms. I, on the other hand, have two of your precious children here with me. Why, I say. And the answer never comes. And so it goes. The questions continue, no answers to be found and everyone expects me to get up each day, put on this fake smile and go about my days as if all was well in the world. Well, this world I live in is not well. There is an ache in my heart that will never go away. And yet I’m a survivor.
My Mom is a Survivor
by Kaye Des'Ormeaux October 15, 1998
-Dedicated to the mothers who have lost a child and have somehow survived-
My Mom is a Survivor,
or so I've heard it said.
But I can hear her crying at night
when all others are in bed
I watch her lay awake at night
and go to hold her hand.
She doesn't know I'm with her
to help her understand.
But like the sands on the beach
That never wash away...
I watch over my surviving mom,
who thinks of me each day.
She wears a smile for others...
a smile of disguise!
But through Heaven's door I see
tears flowing from her eyes.
My mom tries to cope with death
to keep my memory alive.
But anyone who knows her knows
it is her way to survive.
As I watch over my surviving mom
through Heaven's open door...
I try to tell her that angels
protect me forevermore.
I know that doesn't help her...
or ease the burden she bears.
So if you get a chance, go visit her...
and show her that you care.
For no matter what she says...
no matter what she feels.
My surviving mom has a broken heart
that time won't ever heal.
Good Night May…. Mommy Loves You, Daddy Loves You, Tommy Lee Loves You… EVERYBODY Loves Meghan!
Good Night Tay…..Wish ya could’ve stayed awhile.
Your Mom
Thursday, March 25, 2004 7:20 PM CST
UPDATE AS OF APRIL 1, 2004 (NOT AN APRIL FOOLS JOKE MY FRIENDS)
Ok, The "Kids Helping Kids" Family Festival to benefit Candlelighters of Brevard County will be held on Sunday, April 25, 2004 from 11:00 a.m. to 4:00 p.m. at Gleason Park in Indian Harbor Beach. It's right over the Eau Gallie Causeway at South Patrick Drive. During this event we will be showcasing our Meghan's Memory Makers and all donations will go towards Candlelighters of Brevard. There will also be face painting, a bounce house, food, drinks and other activities for the children. At 1:30 p.m. the 2nd Annual Crystal Kabboord Memorial Kids Walk will begin with a one hour continuous walk around the lake. Families are encouraged to create teams in honor of their Angels, their children battling this disease, or for any other reason they would like. You can dance, skate, jog, run, walk, bounce your way along the lake's path. We encourage teams to be creative and show their team spirit by wearing t-shirts, hats, buttons, balloons or come up with any other spirited way to show support for the children we have lost or those still fighting this deadly disease. Registration fee for the walk is a $5.00 donation and registration begins at 12:00 noon. The first 200 registrants are guaranteed a t-shirt (not sure if this is a Candlelighters or Crystal Kabboord t-shirt), but either way.....it would sure be nice to have :o) We encourage everyone to get as many sponsors for your walk as there are prizes for the team who raises the most money, most spirited, largest team, youngest walker (Miss Mary...this means your little princess better get here quick:o) etc. This event is open to the public. We are in the process of scheduling a blood drive and bone marrow registration (however, we are awaiting word because the Brevard County blood mobiles have been booked solid for this day and they are hoping to bring a team over from Orlando to help us out). I will keep you posted on this. In the meantime, if you wish to make a small (or large) contribution to Meghan's Team for the walk, please send your check made payable to Candlelighters of Brevard to my home address PO Box 1204, Titusville, FL 32780 and I will happily add it to our team's collection. I appreciate each and everyone's support and hope that we can make this event a huge success.
Previous Journal Entry of March 25, 2004:
Meghan’s Memory Makers.......... This is the name of our first endeavor to raise money in Meghan’s name for Candlelighters of Brevard. What is this you ask????? Well, let me start at the beginning.....ok, not the real beginning, that’s far too depressing so we’ll skip 2003 and head into spring of 2004 with a new outlook (ok, this is all a coverup, but what the heck...I can make stuff up as I go along...it’s my journal, and God knows you all keep coming back for some reason :o) So, where was I???? Oh yeah, spring 2004 and our first “official” fundraising event.
Sunday, April 25, 2004 is the Family Festival here in Brevard County sponsored by Candlelighters. I will get the details shortly which will include the location and time of the event for all you here in Central Florida who would like to come out and enjoy your day and help a great cause (if I have to guilt you into it....I‘m not above that, so go ahead and write the date in your calendar, cause you‘re coming and you‘ll like it :o). Ok, as I was saying.... Family Festival...... We are planning on setting up a booth where for a small donation, we will have cement garden stepping stones for the children to decorate with stamps for imprinting, marbles, beads, and other little trinkets, or if you would prefer you could imprint your child’s handprint, write their name, and for the parents of Angels, they can stamp imprints of Angels on theirs with their child’s name, date of birth/ date of death or whatever they would like on their special Angel garden stepping stone.
I’m VERY excited about these Memory Makers and hope we raise alot of money on our first little fundraiser. In addition to this, we will have the bouncing house, face painting, and several other things to do along with a walk in support of and in memory of those who are fighting and for those who have earned their wings. In talking to Carrie at Candlelighters I was going over some ideas about charging for this and that, registration fees for the walk and told her I had an idea that I would like to throw at her. I mentioned that I think it would be very special if we have the Central Florida Blood Bank there for blood donations and that in addition to that I would like to schedule a whole bone marrow registration. I must say I impress myself sometimes because besides Carrie thinking that was a great idea, I keep thinking how important blood donation is and if we have a relatively captive audience, we can get alot of people registered!!!!!! As I always say to my good friend Ann “I have the ideas...just not the means to implement”.......THIS I can implement and will be making the call tomorrow morning!
As Carrie and I talked more and more, she mentioned that she is having a hard time keeping up with what’s going on with the families. There are so many newly diagnosed that there are more and more families that one person cannot keep up with it. Mind you, this is a non-profit organization so hiring a helper for her is basically out of the question. She said, I try to put in the newsletter special events such as “so-and-so’s off chemo”, etc. I told her I thought a “buddy family” would be a great idea where families of Angels buddy-up with families whose child is undergoing treatment, etc., and thru us, we could get updates to the newsletter, let everyone know when the child is inpatient, answer questions for the family, order phone cards, and basically be a liaison to Candlelighters to assist in any way we can. I guess for those of you reading this you’re thinking are there that many Angels in Brevard County?????? YEP........ unfortunately, there is, and unfortunately there are that many newly diagnosed.... So.....Carrie and I are meeting in early April to discuss this, the Family Festival and also my other idea not yet mentioned above of me being the Brevard County parent who visits the children from our county at Arnold Palmer to bring them goodies, a meal for the parent, and to just sit and listen to the moms and dads and to cry with them whenever they want.
I can’t think of anything else right now, although my head is still swimming with little things to do. So, I’ll bid you all a goodnight and ask that when the time comes, you all reach into your pockets and help me make Meghan’s Memory Makers a dream come true. Don’t forget to say a little Meghan prayer for Cassidy www.caringbridge.org/fl/cassidy; Mikey www.caringbridge.org/fl/mikey; and Marcus www.caringbridge.org/fl/marcus. Cassidy is Day 8 and doing well. We are all singing the GROW CELLS GROW song for her and it is working. She’s feeling a little “poopy” right now but that is to be expected and we pray VERY, VERY shortlived. As for our little friend Mikey, well, the great news there is that he about to come home. He gets his Broviac out this week or early next week and they will put a port in. He will be able to swim and take a real bath for the first time in a long time (for those of you who don’t know, alot of children with cancer have broviacs placed and these are external and CANNOT get wet- so no real baths and certainly....no swimming). Then there’s Marcus. Marcus is right on the heels of Mikey in busting out of North Carolina. He is doing so great and he is even growing back hair (and a mustache...... :o) It’s the drugs people...he’s just a little guy. Anyway, Marcus and Cassidy were BLESSED to have a perfect sibling match (which is basically a one out of four chance). For those of you who remember, Tommy Lee was not a match for Meghan so that was not an option for us. Marcus’ big brother Vinson is his Super-Hero and Cassidy’s big-brother Cal is her Super-Hero. Mikey had an unrelated donor and whoever he or she is out there they are OUR Super-Hero.
So, in honor of my three little friends (who also still need blood and platelets routinely)... go donate a pint, and encourage the next stranger on the street you see to register with the National Marrow Donor Program (because I‘m sure YOU as a Stalker have already done that right???). Lastly, even though it didn’t work for us, it CAN and DOES work and we must all work a little harder in getting people registered and continuing our fight for a cure. Children should not have cancer and parents should not be afraid of taking their children out in public for fear of “germs”. Might sound phobic to those of you who haven’t been there, but germs are our biggest enemy. Germs for a cancer patient can be deadly....we fear the playground for our kids...do you??????
Good Night May......Mommy Loves You, Daddy Loves You, Tommy Lee Loves You... EVERYBODY LOVES MEGHAN!
Night Tiny Taylor......wish ya could’ve stayed awhile.
Carol
Saturday, March 20, 2004 8:49 AM CST
Hi Stalkers.....Here’s the thing about this journal. When your child is alive and undergoing treatment we keep these pages updated so you know when you can or cannot visit (it’s all in the counts baby), and also to let you all know if we are inpatient in the hospital, and whatever else is happening with our children with cancer. Once our children earn their wings (and trust me, there are alot of them- we‘re only in March and we‘re already over at least six kids....that‘s more than 2 a month who have died from childhood cancer), we try to keep these pages updated with how our families are doing and surviving without our Angels.
The reason I’m telling you this is to let you know that alot of times, I have to be motivated by something to write (or pour my soul out onto this page). There are times when I think “this is depressing and no one wants to read this crap”, but write it anyway. When you put your innermost thoughts out here, besides being a great catharsis, it also opens you up to alot of emotional soul-searching and I’m sure alot of mental health professionals would have a field day with some of us parents :o)
It has been 13 months (for those of you still counting), and it has not gotten any better. I think I maybe miss Meghan more today than I did at any other time as I think of what she would look like, how her froggy voice would sound, how tall she would be, what she would like right now, and all of the other things that are taken for granted on a daily basis. This past Thursday and Friday my sisters and I took all the kids to Universal (gotta love the season pass), and all I could do was think, Meghan would love that ride (ET especially), as well as the Barney show, all of the kids areas, the water play areas, and on and on and on and on and on and on and on (sorry, I digress)........ To top that off, yesterday was March 19th (that would be exactly one month before my due date with Taylor of April 19th). That’s when I notice all the tiny newborns and little 6, 7, 8, 9 month olds at the park, and all the diaper bags, bottles, diapers, and notice the sheer look of wonderment on the tiny faces out there experiencing this excitement for the first time.
I think back to a few months ago when I was worried that Taylor would want to wear Meghan’s clothes and shoes and me saying “what am I going to do, no one else can wear her things?” and I was soooooooo worried about that and then I guess that worry got taken care of for me. UGH! See, you try to go back to some sense of “normalcy” (whatever that is), by worrying about trivial things, and then WHAM.....no need to worry about that any more. I could have used that kind of worry.
Still working on the Meghan Fund. Got some things going on and will let you know shortly. In the meantime, donate blood, platelets (if possible), register with the National Marrow Donor Registry and of course, if you’re pregnant, talk to your doctor about donating your baby’s cord blood. Also, don’t forget to drop a note to Cassidy (www.caringbridge.org/fl/cassidy). She had her transplant last week in Philly (her big brother was her donor.....He’s a Super-Hero).....and she is doing well and we are all chanting our “Grow Cells Grow” chant for her. Also, our little friend Mikey may be coming home from Duke after transplant in less than two weeks....he has done fabulously and then, lastly (but not least :o)...Marcus is also doing fabulous after his transplant up at Duke...his big brother was his donor and he too is a Super-Hero :o) He may be busting out of that place and on his way home to Florida in the next few weeks too! Transplants can work everyone, and the more donors we get registered, the greater the chance to have more and more survivors out there.
Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You.....EVERYBODY LOVES MEGHAN!!!!
Night Tiny Taylor.....wish ya could’ve stayed awhile.
Carol
Sunday, February 29, 2004 8:21 PM CST
Hi faithful stalkers. This is going to be short and to the point tonight as I am about to have a major meltdown. Little LaKota has relapsed and I am asking you all to visit her website and extend your prayers to her mother Debbie who must be having an awful time right now. Go to www.carinbridge.org/mn/laplafcan and let Debbie know that all of Meghan's Stalkers are praying for them. THIS is a prime example of why it is so important to register with the National Marrow Donor Program. LaKota may be headed for transplant now and YOU may be her lifesaver.
Also, Meghan's friend Cassidy is leaving this week for transplant up at CHOP in Pennsylvania. You can visit her site at www.caringbridge.org/fl/cassidy. She was diagnosed a few months after Meghan and Meghan loved her and the two of them would sit right in the middle of the floor in front of the nurses station and eat cheetos while Cassidy's dad and I would talk. Often, unexpectedly one of them would jump up and run one way the other the other way entangling their IV poles and you would have two parents jumping trying to untangle lines and not having anyone rip out their broviacs....such is the life......anyway, please let LaKota and her mom know that you are thinking about them and go ahead and check on Cassidy as she starts her journey with an Angel on her shoulder :o)
There's alot of news coming about Meghan's fund but I'd rather get the details worked out before I start running my mouth. So, go donate blood, platelets and get registered with the National Marrow Donor Program.......don't forget the cord blood, cord blood, cord blood......
Good Night May....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY Loves Meghan!!
Night Tiny Taylor....wish ya could've stayed awhile.
Mom2Angelz
Carol
Tuesday, February 17, 2004 6:39 PM CST
Yeah, yeah, yeah.....I know...it’s been a long time since my last journal entry. I’m trying to avoid pulling all of you faithful stalkers into this vortex of depression I am in. February Sucks. Not only for me, but for many, many other families and especially for two very special women.... Gina, who lost her beloved husband Dave a year ago on February 13th and then Alison who lost her beautiful daughter Alexandria a year ago on February 16th. That’s just the first part of the month. There are so many more February Angels whose families are facing the end of their “firsts”. And so many, many more who don’t know what their February will bring. Hate to sound so dark, but frankly, the children dying has me a bit on edge and I’m about over it.
To my dear friend Mel....I know you want to kick Leukemia’s butt and you all know how much I want to organize something that will honor Meghan and her spirit. I’ve been tossing around some ideas for our “revenge” on this dreaded disease and I will post them for everyone to toss around and see what you all think. First of all, I think any money raised by whatever we do should go directly to the families of children battling cancer. You all know how close to my heart Candlelighters is. It is true they are a national organization, but what you don’t know is somehow, Carrie who is the head of the Brevard chapter has managed to sneak in under the radar and manages to keep all of the money raised for Candlelighters here in Brevard County. Every month Carrie writes check after check to families here in Brevard County to help them pay for mileage, food, gas, electric bill, groceries, whatever it is...you name it you can use the money for it. She does not ask that you fill out a ten page application and she doesn’t make you jump thru hoops to get 7 cents a mile for trips to and from the hospital. She simply asks for the dates of the clinic visits or the hospitalization and voila, a check appears. The thing that amazes me about her is that her daughter beat cancer when she was young and Carrie has taken this crusade and made the Brevard chapter of Candlelighters the strongest in Central Florida. She is a tireless fundraiser and I have seen her after an event, where she’s kicked off her shoes and she is cleaning up after everyone else has gone. She runs the Candlelighters Thrift Shop and money raised there goes to help the families as well. She stops to send you a card just to let you know she’s remembered what day it was. So, what I think is that in honor of Meghan’s birthday on July 23rd, we have a fundraiser and raise money for the little organization that could. If you think we should walk.....we’ll walk....if you think we should dance and shake our booties...we’ll dance and shake our booties....if you think we should sell chatchkies....we’ll sell chatchkies...... ribbons, balloons, yard sales...you name it.....we’ll do it..... whatever it takes or by any means necessary.
Good grief, I’m all over the place...now, I’m on to my next tangent which is a cure childhood cancer automobile license tag. In Florida we have save the Manatee, save the Whales, and even save the Bass for God’s sake....not to mention every college and university (GO MIAMI) has a tag.....ya think we could get enough signatures to get something like childhood cancer into the forefront? I’d give up my Hurricanes tag in a heartbeat! We would have to come up with an organization that the proceeds would go to. See, why this is all so taxing on the brain????? Idea.....brick wall......Idea.....brick wall....... UGH! Ok, so, here’s what we have to do......THINK Everyone!!!!! I’m having a hard enough time getting out of bed each morning...how the heck am I supposed to come up with all of these brilliant ideas by myself (LOL). They are brilliant too :o)!!!!!!
Alright, I need volunteers to do the research on the internet and with local legislators etc to get the license tag thing going.......I need volunteers to do research on how to go about setting up a national cord blood bank registry........I need volunteers to come up with ideas on way to raise money to start the Meghan Mack Foundation.......I need volunteers to help me coordinate all of this activity that I have going on inside my feeble little brain.......and I definitely need a freaking vacation! I won’t mention anyone’s name who is on a seven day spur-of-the-moment cruise this very minute :o).......
Ok, so, you wanted an update...ya got one with instructions :o) And here are the lifelong instructions to live by......donate, donate, donate your blood!!!!!!! Register with the National Marrow Donor Registry.....Donate your cord blood (or at least ask about it)......and most importantly..eat desert first and hug your children tight! We’re here for but a moment in time and then all we have are the memories. And since I didn’t mention it....February 7th sucked. I was awakened about 4 am from a sound, much needed sleeping pill induced sleep. Coincidently, this was about the exact time last year on that date I was awakened but last year it was to alot of beeping and very bright lights being turned on and lots of loud talking and lots of activity. In my daze I was told Meghan simply would not make it and I had to make an awful call to her daddy to let him know that his little princess was earning her wings. I put the phone to her ear and daddy talked to her and told her how much he loved her. Then I held her and kissed her and snuggled as close as I could get to her singing and kissing, and kissing and kissing her. I had the Priest come in and baptize her. Alot of her nurses from bone marrow came in and some of her doctors came in as well. Then as I snuggled up close she opened her eyes, looked at me and then she was gone at 7:53 a.m. I don’t think my feet ever hit the floor as I ran out of that hospital and away from Gainesville forever leaving behind the one thing I wanted most to bring home. To coin a phrase.....Gainesville Sucks! Anyway, don’t know why I shared all of that.....I know most of you are saying “we don’t know why you share most of the crap you write in here” (lol...I hope).....Anyway, you all keep coming back so I guess you’re all gluttons for punishment, or, as I’d rather hope to think...you all care. And for that, we thank you. Well, the meter on this therapy has run overtime and time is money...so I’ll be off for now.
Good Night May....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You...EVERYBODY Loves Meghan!!!!
Good Night Tiny Angel Taylor....wish ya could’ve stayed for awhile..........
Carol
Mom to Angels in the Sky.....Meghan and Taylor
and my Angel on Earth....Tommy Lee
Wednesday, January 21, 2004 6:56 PM CST
Hi Stalkers.....I guess it’s “tax time”. I check Meghan’s site all the time and I feel as if I’m supposed to say something profound here. And frankly, I can’t come up with anything. The 19th came and went and thoughts of Taylor flooded my mind. My sister told me that she thought Meghan was bossing Taylor around right that very minute. I’m sure she was right. I can imagine Meghan bossing Taylor around telling her..... “nooooooo, you sit here!!!!!”. Poor Taylor’s probably thinking what a bossy big sister I have :o) That’s ok Taylor, she bossed her big brother around also. She was definitely an equal opportunity bossy little girl. Didn’t matter how old you were, if Meghan wanted it her way.....she got it her way. Funny thing is, it worked for her. There wasn’t a person she met who would not give her her way.
I wanted to take a minute and let Alan Hamilton know how much I appreciate his beautiful writing and the song he wrote with our family in mind. I can’t wait to hear the song in all its glory once music has been put to it. I’m amazed that Meghan has inspired so many people to do great things, and even simpler, to hug their children a little tighter and to be thankful for the health of their children. The number of children battling this disease and cancer in general is staggering. Take a look at the newly revised Adopt-A-Kids site at chubbychica.com and you will begin to see how devastating this disease is. The saddest part is that they had to revamp their website because of all of the “newly diagnosed” and that, along with the number of “angels” was getting so large that it became harder and harder to navigate their site. It’s now broken down into categories and I encourage every one of you to go take a look, and especially, if you have 5 extra minutes in your day to become an “adopter” and can promise to visit one child’s site each day. I also want to encourage anyone who would like to “adopt” an adult (which is new to this site) to do so. The “adults” are those 18 and older undergoing treatment as well. It doesn’t take much to drop in and write a few words of encouragement either to someone who is still fighting, or someone who has reached a milestone (off chemo, post bone marrow transplant, etc) or to those families such as ours that have lost our fighter to this disease. Everyone on this caringbridge network needs support. Also, don’t forget to visit Meghan’s Memorial Quilt at smilequilts.com. Just go to the memorial quilt index and you will find her. She still has her smilequilt as well and that can be found in the smilequilt index as well.
Tommy Lee’s school has just started their “Pennies for Pasta” campaign which benefits the Leukemia and Lymphoma Society. I have a jar up at work and am “guilting” co-workers into putting in their spare change for this cause. I’m also selling raffle tickets for Candlelighters of Brevard’s Valentines Extravaganza. The raffle ticket is $10.00 and they are raffling off a 2004 Hyundai. Most of you stalkers know how dear Candlelighters is to me and if you’re anywhere in Florida...beware...I’m going to hit you up for the 10 bucks (and a chance to win a car :o) The only reason I don’t offer the raffle tickets to all of you outside the state is because I think it would be a huge hassle for you to pay the taxes and everything to take the car out of state...someone correct me if I’m wrong, and certainly, if you want to donate $10.00 or more, for a raffle ticket, please don’t let me stop you. Our post office box is 1204 Titusville, Fl 32781. All donations are welcome. Speaking of all of this, I’m trying to figure out a way to honor Meghan this year and don’t feel I can get something together by February 7th so I’m thinking we need to do something special in honor of Meghan’s birthday on July 23rd. I’m thinking maybe a donation to Candlelighters. We did so well raising over $16,000.00 for the Leukemia and Lymphoma Society I would love to do something as spectacular as that but don’t quite know how to go about putting some sort of charity event together. If anyone has any ideas, please let me know.......ah hem....Alexandrias Angels......any hints for me?????? :o)
Ok, for someone with not much to say, I guess I’ve said enough. February 7th is coming fast and furious and I feel like the brick wall it’s going to smash in to. So, as I wait for the train to hit, I’ll once again ask for your indulgence and go with my usual requests. Donate blood people.....it doesn’t take long and it’s virtually painless (don’t get me started on what these kids have to go thru getting poked all over like little bitty pincushions).....sorry, I digress....ok, where was I?.....donate blood (got it).....cord blood......talk to your doctors folks....Florida moms-to-be.....there is a contact here in Florida which accepts cord blood for donating.....(unfortunately, I’ll have to post that at another time as I have completely forgotten where I saved that info to).....not the most puter-literate person round ya know???? Ok, now, let’s see.....blood, cord blood....oh yes....the big one....REGISTER WITH THE NATIONAL MARROW DONOR PROGRAM!!! Go to their website if you have any questions or fears about the procedure. The most unfortunate part of becoming registered is the fact that the odds of you being called to donate are pretty slim. Remember, it takes quite a match to transplant, and having said this, I mean not to discourage you but quite the opposite...I mean to strongly encourage you to register because there are so many out there waiting for the right match and you....yes you......you may be the one. You may be the match to save a life. So, tell your friends and family. Oh, and whilst I’m on my proverbial soapbox.....remember to register to donate your organs. And don’t forget, just registering alone doesn’t cut it. You HAVE to make your family aware of your wishes in this regard. They are the ones who will be the deciding factor in the event something happens to you. Remember, where you’re going, you won’t need that liver, or kidney, or whatever ya got to donate......you’ll be perfectly whole again just like our little Angel who has no more tubies, no more owies and no more medicine to take and who has the most beautiful ringlets of black cascading from her sweet little shoulders as she dances to the beat of the music. Gosh, I can smell her right this minute. Thanks for that little whiff of heaven peanut :o) Mommy misses you May. Take good care of Taylor and share your toys :o)
Good Night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You......EVERYBODY LOVES MEGHAN!
Mom to Angel Meghan and Angel Taylor
Carol
Tuesday, January 6, 2004 8:05 PM CST
I made a mistake when I wrote Taylor’s time of birth/death. She actually was born/died at 7:52 p.m., December 19th instead of what I had previously put, 8:52 p.m. Damn military time :o) 1952 not 2052. Anyway, you’re probably going so what? An hour’s difference. I was thinking the same thing until I reread my original journal entry letting everyone know Meghan had passed away back on February 7th. The time of Meghan’s death was 7:53 a.m. I like that they were a minute apart in time (not in am or pm standards, but you get the drift). If you want a reality check, go back and look at my February 6, 2003’s journal entry. You could tell in that post that we never thought we would be losing Meghan in a mere couple of hours. I have tried to go back every couple of days and read old journal entries as close to the day they were written last year as possible. We had such hope, such promise, and now on the eve of marking the 11th month since my first precious baby daughter earned her wings, we have new “dates and times” to dread.
I know I always talk about dates and times and coincidences. Meghan’s birthdate 7/23/00, date of death 2/7/03.........Taylor conceived 3 days after Meghan’s 3rd birthday ........Taylor due 4/19/04 the same date as Meghan’s official diagnosis of 4/19/02. Now, Meghan’s time of death 7:53 am and Taylor’s time of birth/death 7:52 pm. I’m not a huge believer in the paranormal, but maybe I need to consult a numerologist. There could be some winning lotto numbers or something in this all for me....... God knows, if anyone deserves a winning ticket it’s me. I’m so sick of getting the losing end out of every deal.
So, for now I’ll let you all know we’re surviving. Tomorrow night I take Tommy Lee to basketball practice where I will have to come face to face with another mother who is due just days after I was due in April. UGH! I will also have to explain what happened....Double UGH! I will also have to try to keep my tears in check as I explain Taylor’s passing. It’s not as if I haven’t already done this though. I’ve been back to work. Unfortunately for me, there is a girl at work who is exactly one month behind me in her pregnancy. Now I have to watch her pregnancy bloom while the site of her makes me want to vomit. Don’t get me wrong, it’s her first pregnancy and she’s so excited and happy........but from my perspective....... woohoo...something else to remind me of our loss. Every time I go in my closet and see those stupid maternity clothes I want to scream at them....I don’t need you anymore! But I do need them. I need to confront the monster that lies within my closet..... reminders of a tiny little baby girl who never got the chance to take her first breath. They say “life is what you make of it”. I have to tell you, I didn’t make any of this, and can’t for the life of me find the proverbial “silver lining” to any of this crap. This always leads me to the “why Meghan” and now...... “why Taylor”. So I won’t go there, because it would simply be rehashing old questions that will never be answered and if they are, certainly not to my satisfaction.
Oh well, enough therapy for tonight. Just as I typed that the “Hot Potato” song that the Wiggles sing was on a commercial. For those of you who don’t know who “The Wiggles” are, they are a group of four (or five) guys on the Disney channel who have a little kids show singing and dancing, etc. Meghan LOVED that show and she LOVED singing Hot Potato........another coincidence? I would like to think she had a hand in that commercial being on just now- just to make me smile. Funny thing was it wasn’t about The Wiggles ....simply about Idaho potatoes, but it was her song :o) Silly rabbit! Speaking of the Wiggles, the other night Tommy Lee starting singing “fruit salad.....yummy, yummy” (another Wiggles song) and said “Meghan loved fruit salad”. She sure did. Come to think of it...The Wiggles have a thing for food.....hmmmmm...so did Meghan (LOL). Well, now every time you see that commercial for potatoes you can think of Meghan shaking her booty and singing that song. Now it can make you smile too :o)
Well, good night all. Please, just because I haven’t asked you to do so, please don’t forget to encourage people to become registered with The National Marrow Donor Program, have any pregnant (UGH) women talk to their doctors about cord blood donations, and lastly, please go donate blood and if possible, platelets. So much need and not enough donors.
Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You.....EVERYBODY Loves Meghan!
And although we didn’t get to share this ritual angel.......EVERYBODY Loves Taylor Too!
Carol
Mom to Angel Meghan and Angel Taylor
Sunday, December 28, 2003 3:00 PM CST
“There are only two lasting bequests we can hope to give our children. One of these is roots; the other, wings.” Cecilia Lasbury
Well, I guess I’ve perfected one of the bequests. Two Angels with wings. Who would have ever thought? When Meghan earned her wings, it was as if life had stoodstill for all of us. When we became pregnant with Taylor it was as if Meghan was telling us it was ok to move on. It was ok to have another baby and maybe share some of the joys of girlhood we were robbed of by Leukemia. Meghan embodied life. She laughed through the worst times, and sang and danced through even tougher times. Now I sit here with the emptiest of wombs and a heart so broken I don’t think it can ever be mended. We were supposed to be having at least a slightly joyful holiday this year, with the plans of a new baby on the way, even if it was with the memory of Meghan so fresh in our minds, but we instead were sitting in the funeral home on Christmas Eve planning “arrangements” for our second daughter. These people are getting to know us on a first name basis, and that my friends, is NOT a good thing when the funeral director says “so sorry you’re here again this year”. I’ve got her tiny footprints, her tiny little hat and dress they placed on her at the hospital. I’ve got her first and only blanket that never really got to keep her all snuggled and warm. And I’ve got an empty belly where once there was life kicking and hiccuping. Now, empty and slightly swollen. And so sore. I don’t think it really is a painful soreness, just a woeful soreness that is unexplicable.
So, we begin the new year with more heartache, more trepidation about the coming months. Not only do we have to live thru February, we now have to live thru April when we would have been happily awaiting the arrival of our bundle of joy, we now will dread the month of April as if it too were February. More grief, more heartache, more wanting. Wanting so much to hold her, to smell her, to see her smile. Wanting the long nights, the bottles, the messy diapers, a baby to love. And nothing comes. Nothing but an empty baby’s room that remains empty and lifeless.
Prayers for a peaceful New Years to all of you......thanks for still stopping by and caring.
Carol
Mom to Angel ^^Meghan^^ and Angel ^^Taylor^^
Saturday, December 20, 2003 4:22 PM CST
Most of you know I was pregnant with MeghanÂ’s baby sister. Unfortunately, last night, Friday, December 19th at 8:52 p.m., Taylor Delaney Mack was born prematurely due to a fatal chromosomal abnormality called Trisomy 18. We are all very saddened, and will try to update at a later date. One thing, please, if you see Tommy Lee, please do not tell him anything about this as we are struggling with the proper way to tell him he will not be having another baby sister. This is very important to our family and we want to make sure WE are the ones to tell him this devastating news.
Mom to Angel Meghan and Angel Taylor
Carol
Sunday, November 30, 2003 7:06 PM CST
Hi Stalkers. Sorry it’s been awhile since my last update but as you might imagine, I’ve been feeling pretty poopy (to coin a phrase). I hope everyone had a nice Thanksgiving. We were out of town which I think was pretty helpful for me. All day last Wednesday all I could think about was one year ago that day was transplant day. Now, in the world of bone marrow transplants everyone calls it “your new birthday” and there’s some hoopla associated with the day. I never caught on to that whole “new birthday” thing and did not refer to November 26th as Meghan’s “new birthday”. Afterall, she had a birthday, the very best one she could have, July 23, 2000. That is and was her birthday. I don’t think I’ll ever feel anything about November 26th except that for us, it was the beginning of the end.
I’m trying real hard to “be thankful” for things this holiday season, but trust me, it’s difficult. I’m thankful that I have a great husband, son, family and friends, a new baby on the way, and alot of wonderful strangers who came along on Meghan’s Journey and felt the ups and downs of a 2 1/2 year old’s precious life. I am questioning this whole notion that we are each put on the earth for a certain number of days and then no matter what, your time is up. I could live with that whole scenario except if that’s the case, why not just take these children peacefully instead of making them fight for every second of their lives only to end up taking them from their parents anyway? Some of these transplant children even make it out of the hospital only to relapse and pass away anyway. Why not just take them away in their dreams without all the cancer and sickness? If Meghan’s life was only to be so many days here on earth and no matter what we did, she was not going to survive anyway, what is the lesson in that? She didn’t deserve what she went thru. Was it to teach Meghan something? Was it to teach me something? What lesson was that? That you battle with everything you have and all the resources you can find only to be stripped of the one thing that you were fighting for? Why is it that a child can get hit by a car and survive only to be rendered a vegetable for the rest of their life? What lesson? I have always held the belief that life is too short, even way before Meghan was ever born. Was it to teach each of you? I frankly wish you would have learned that one on your own sparing my daughter the misery of 10 months of chemotherapy, radiation, transplant and death. So much for lessons.
So, with another therapy session coming to a close, the requests are: Hug your children extra tight tonight and please, please, please, go donate blood and platelets and continue to encourage everyone you know to become registered with the National Marrow Donor Program. As for the cord blood, I have some new information for Florida and will post that soon. There still is no national data bank which as you know is critically necessary. Also, don’t forget to look up into that cold crisp evening sky and look for Meghan’s star.....you know the one, the biggest and the brightest!
Good Night May....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You.....EVERYBODY LOVES MEGHAN!
Night,
Carol (Meghan’s Mom)
Thursday, November 13, 2003 6:05 PM CST
Ok Stalkers.....First I want to explain myself to you all. I know you all say “you shouldn’t feel that way”, “it’s not your fault”, “you didn’t let her down”, etc. But understand a couple of things. First we did not go to any “grief counseling”, or therapy, or anything else after Meghan’s death. I have chosen to use this site as my catharsis and sounding board. True, it’s very difficult to write your innermost thoughts on here for who knows who to read, but I happen to feel it’s therapeutic for me. I know there are other mothers of Angels out there who do the same thing (maybe not as graphic as I sometimes, but.....). With this said, I appreciate your constant support you have given me throughout this ordeal, and I am in no way chastising any of you for trying to be supportive and make me feel better. I cannot help the way I feel. It may be part of the grieving process, who knows, but there are many, many reasons why I should question what course we chose for Meghan. It would certainly fill a book to explain in detail some of the reasons why I should have taken her and run screaming away from Gainesville. First and foremost, her own treating physician advised against transplant. I know that out of the three partners in the group, he was the only one who felt that way, but I will never forget him saying “if she were my granddaughter, I would not do it”. Pretty powerful huh? I also know that all of the physicians we contacted on an expert basis advised to transplant her, so that’s what we went with. Then there’s the night we were in Gainesville for the preparation phase, and I woke up in the middle of the night in a panic and told Tommy that we shouldn’t do it, and I wasn’t comfortable with the whole idea and what did we do? Went ahead with it anyway. This is just a very small sampling of the things that went on prior to transplant. There are so many more stories like these that I could bore you all into eternity with them. What I do want you to know is that when I write in this journal I do not want, nor do I expect a pity party. It is just my way of expressing my emotions. Emotions that are so raw at times it is palpable. For those of you who see me on a regular basis, you wouldn’t know this to be the case. I think I do a pretty good job at putting on an “appearance”.
As for the new baby, I too, loved the idea of the “love box” that Mel had. The only part of that I didn’t like was the fact that I would have to go up to the crying room and box Meghan’s things up. This only brings up another finality in the scheme of things. Right now, her room looks as if she could walk right back in there and crawl into her crib and go night-night. I know this will never happen, but it’s a little easier this way right now. So for now, I’ll leave everything as is and struggle to gain some strength to go up there and get the job done.
On a completely different note, I had another “moment”. I was thinking about when Meghan was diagnosed and the day we took her to the doctor. That day was April 17th. Her doctor thought it was Leukemia (he was right). The next day, April 18th Meghan was transferred to Arnold Palmer Hospital in Orlando. The next day, April 19th, her bone marrow biopsy results came back diagnosing her with Bi-phenotypic Leukemia. I know, you’re all saying.....yeah Carol.....tell us something we don’t know......well, the 19th of April was sticking in my mind because that is my due date. Is that a coincidence or what? The fact that this new baby was conceived 3 days after Meghan’s 3rd birthday and is now due on April 19th, the day of her diagnosis really blows my mind! And then maybe, these are not coincidences at all. Maybe this is my Angel’s way of becoming a part of this new baby’s life. Who knows?
So, another therapy session comes to a close. I think I had given you all fair warning that November is going to be the start of some especially hard months for me, and my journal entries are proof of that pudding. Meghan was admitted to Shands on November 18th and started her weeklong radiation treatments on the 19th. Following that, she had two days of intense chemotherapy and then her transplant was on November 26th. So, you can see that every day is going to be a trying one from here on out. I know we’ll survive. We have to.
So, go hug your children, and eat desert first. Also, please, go donate blood and platelets. My regular pleas for bone marrow registrations continue. And it is critical that a national registry be set up for cord blood. I truly believe this.
Good Night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You......EVERYBODY LOVES MEGHAN!
Carol (Angel Meghan’s Mom)
Monday, November 10, 2003 7:19 PM CST
Hello Stalkers. Apparently I got thru another 7th (sigh). November 7th marked nine months since Meghan left us to become the perfect Angel that she is now. Somehow it doesn’t seem like it has been nine months. Sleep still eludes me and the nightmares still chase me throughout the day, so maybe nothing changes as time goes on. Meghan dances in and out of my thoughts all day and all night. Some of the memories are most horrific, and others are some of the happiest times I have ever had.
I was telling my boss this afternoon at lunch that I was having second thoughts about wanting another girl. I have been really stressing out over this new baby and have thought on many occasions what will I do if it’s a girl? I can’t possibly let a new baby wear Meghan’s Mickey Mouse shoes. She adored those shoes. Actually, she adored ALL of her shoes (some will say she gets this from her mother :o) How can I let someone else wear Meghan’s clothes and shoes? I know that if she were alive these would simply be called hand-me-downs. Now they are simply called MEMORIES. And they are way too painful. I think about if the new baby were to wear Meghan’s things I would have to relive what Meghan was doing in those clothes, shoes, etc. I can come up with a story for every outfit Meghan has ever had. Not to mention all of the clothes she never got to wear. I have several outfits in her closet that were for when she got out of the hospital. I even had an outfit for her to wear when she walked out of the hospital’s doors. Because it was supposed to be last December when she would be released I had gotten this beautiful gray pleated skirt with a red, “Scottie Dog” sweater for her to wear with tights and black patent leather shoes. She never even saw this outfit. I think she would have really liked the little doggies on the sweater. Anyway, I want this new baby to have his/her own memories. So, I guess I’ll be buying a whole lot of new stuff either way. Anyway, after going on and on about hoping this baby turns out to be a boy, my boss said “it’s simply out of your hands. It has already been decided.” And that was that. She is right. I had no choice in choosing Meghan or Tommy Lee and this baby is no different. So, I am trying to come to grips with the new baby being a boy or a girl. Either way, I know a little Angel is blessing us and is smiling down on her family as we continue to struggle on without her.
It was this time last year when I was washing clothes and sealing them in plastic bags getting ready for our trip to Gainesville. Meghan was admitted on November 18th and began her radiation and chemotherapy on November 19th. She had her transplant on November 26th and was supposed to engraft within 15 to 20 days. I can’t even go on. What I could do is smack myself in the head for taking her there in the first place. Stupid, stupid, stupid! Parents, when it comes to your child....go with your gut. You KNOW what’s best for them. I know you all tell me not to beat myself up over taking her to transplant, but sit in my shoes for a minute. We were never guaranteed she would relapse. The chances were very high, but relapse was not definite. She may have gotten thru treatment and have been cured by the chemotherapy. Either way, she would have been with us longer than she was. She would have had a Christmas last year that she could enjoy. She may have even made it to her third birthday. But no, I had to panic and put her through some horrible treatment that did nothing but take her life. She trusted me and I let her down. It was my job to save her life and I led her straight to the wolves.
Go hug your kids, they love you and trust you. And by the way, another toddler drowned here in Florida last week and you probably heard about the toddler in California who drowned and then an hour later as police were photographing her body, realized she was attempting to breathe on her own. All I can say is WATCH your children people!
Lastly, please, please, please go donate blood and platelets. Leukemic patients need blood products often, sometimes several times a week and there is an incredible shortage of blood products. This is a HUGE problem right now and if you can help, it only takes about 20 minutes to donate blood and about 2 hours to donate platelets (but worth it to a patient somewhere). Also, encourage registration in the National Marrow Donor Program and maybe some day we’ll be able to come up with a national databank for cord blood.
Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You.....EVERYBODY LOVES MEGHAN!
Night all,
Carol (Angel Meghan’s Mom)
Monday, November 3, 2003 7:50 PM CST
******SEE NEW PHOTOS - These are not newly scanned, since the scanner is STILL not working, but newly posted anyway*******
Yes Stalkers, two in a row! I was leaving work this afternoon and thinking of nothing in particular when a wave of grief enveloped my soul and I had to stop and make myself take a breath. This is not the first time this has happened and I am sure it won’t be the last, but these are very powerful, gut-wrenching waves that can almost knock me to my feet. I don’t know if it’s a subconscious thought, or a smell, or what it is that can bring on an emotion so powerful that you physically can’t breathe, but it happens, and they are no fun. I tried to think back to what exactly I was thinking about as I waited for the elevator and I think it was how envious I am of other people. I envy the moms taking their kids to school, daycare, the park, the movie. I envy the moms taking their children to the clinic for labwork, or even the hospital for chemo. I envy everything about parents who have never experienced the grief I am going through. How’s that for complete and honest selfishness? I want to scream at parents who yell at their children and I especially want to scream at the most recent stupidities here in Florida. Just this week, two children drowned in swimming pools because no one was watching them. One was a 3 year old whose mother went to take a shower and the other a 10 year old from out of state who did not know how to swim and was allowed to go down to a pool and got into the deep end and never came out. I want to tell them YOUR child actually had a chance to live a full life, but for your stupidity, they will not. For those of us who fought so hard keeping our children alive, these tragic, senseless deaths are the most amazing acts of stupidity on their parents part. I know how quick a 3 year old is. I also know that you don’t leave any door unlocked, any pool enclosure unsecured when you have one. Yes, you have to take a shower, but first and foremost, you HAVE to watch your kids. I know, I know, that poor, poor mother....she must be grief stricken. I’m sure she is. I’m sure if she could turn back the hands of time, she would not have taken that shower.....but, as we all have seen, time is reversed for no one. As many times as I have said, and will say over and over....I wish we hadn’t taken Meghan to transplant, I feel sometimes as if I had no control over the situation. It is almost as if this was her destiny. She was placed on this earth for a very short period of time and she was taken from us as quickly as she came to us. Too deep for you guys? Maybe so, but that’s what you get for reading back to back updates. I told you all before I am either on my soapbox, or something has made me sad or mad, and I guess tonight you’ve got a combination of all three.
I thought about Meghan going to clinic (which we did alot) and made myself laugh today thinking about how she would come home covered in stickers. You’re only supposed to get one, maybe two, but there was not a nurse around that would not let her have her way with the stickers and plaster herself with them. She also loved to go to the lollipop basket. She’d always take 3 or 4 of those too. Now SHE had a sweet tooth! Daddy would always come to the hospital with Krispy Kreme donuts for them to munch on. Between the two of them they would keep Krispy Kreme in business. I remember one time at Shands Meghan was on a banana kick where all she wanted was bananas. I had such a hard time finding them in the cafeteria, and there was this little place in the courtyard where the staff mainly ate and I went in and bought a whole bunch of bananas. The girl just looked at me and said you want them all? I cleaned them out of bananas. Meghan was happy.....so was I :o) She had done so well in the beginning. We just knew she was going to engraft and make it out of there. I wonder what happened. Why didn’t she engraft? Why did she have to get so sick, and then I go back to thinking, maybe she truly was sent here just for a moment. If that’s the case, there’s going to be plenty of explaining when I get up there.
One last thing, I saw a very pretty rainbow right by the bears this morning. It just stayed with me as I drove along. Those two bears make my morning drive harder and easier. I never paid too much attention to them before I had kids, and then when Meghan and I would go to clinic, I would stop there just for a minute so she could look at those bears. Now I look at them and they remind me of Meghan. I guess I can find anything that reminds me of Meghan. I guess that’s what makes daily living so incredibly hard.
Well, I guess I’ll end this session as my glasses are fogging up. Remember, for those of you in central Florida, there is a huge blood shortage at this time. If you can donate, please do!!!! And when you meet a new person, tell them the importance of becoming a bone marrow donor. And lastly, cord blood, cord blood, cord blood........need I say more????????????
Good Night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!!!
Carol
(Meghan’s Mom)
Sunday, November 2, 2003 9:50 AM CST
Hi Stalkers. Well, we got thru Halloween (barely). I should’ve stayed in bed actually. Woke up with a terrible headache that morning, got to work, checked Meghan’s guestbook entries as usual....started crying, and that pretty much was how the rest of the day went. I carried her fairy princess wings with me all day long. I thought it would be comforting, but I think they turned out to be such a reminder and such a heartache. Anyway, Tommy Lee was count Dracula and was VERY scary. He had a great time trick-or-treating with his cousins and got lots of loot :o)
Yesterday (November 1st) the church where Meghan’s service was held had their Feast of All Souls Mass and it was held at their cemetary in Sanford. I was given a candle to hold and as they called out all of the names of those who had passed away this year, we each got up and had our candle lit and placed it at the base of the cross at the cemetary. Meghan is not buried in this cemetary, but is buried down the road at the same cemetary as my mom. I went to visit Meghan first and first thing I noticed was someone had come by and placed a little statue at the base of her headstone. I have no idea who did this and I am thankful that she is being visited, but remember, I am the one who is not a big fan of the little chatchkies or mementos left at the graves. I left the little angel where it was because for all I know, Meghan put it there herself to let me know she is ok. I have to go back down there and replace her flowers because the ones that were there were all mildewed. I’m having such a hard time finding appropriate flowers to place at her grave. Silk flowers are SO unchildlike. There is not much in the way of baby flowers to choose from, so it takes me awhile to decide what to put there. Oh well, I’ll find something. I wasn’t really happy with the last flowers I had placed anyway. They were very pretty, but too formal.
Sheila, I know you asked about what year round school is so I wanted to let you know. Because education is such a mess here in Florida “someone” in their infinite wisdom figured, hey, if we have kids go in shifts, we’ll save money and we can fill the schools to capacity. What this meant was your child was put on a “track”, for instance the “blue” track. That would mean you go to school for 9 weeks and are off for 3 weeks, and during your three weeks off, the “yellow” track would be in school and then they would overlap anyway and all be in school the other 6 weeks. Very confusing and hard to follow I know. Anyway, what’s weird about Tommy Lee’s school is that they don’t have the “tracks” they all go at the same time....school for 9 weeks, off for 3 weeks, then school for 9 weeks, off for 3 like that. They start back to school in July and end in May so they don’t have “summer” like normal kids. It’s a bad system, and luckily we have a new principle and there is alot of talk that this is the last year of year round school. So, that’s that.
The picture of Meghan with the ballet dancers on her front page was done by some wonderful people at heavenlylights. I still don’t know how to link you all to her star, Christmas Stocking and Christmas ornament, but I will keep trying to figure it all out. So many caringbridge pages have all these really cool pages with graphics, links, and everything else you can imagine and I can barely change photos on my page....not to mention that our scanner is STILL broken and I can’t replace any photos on her page which I desperately want to do so I can share other pictures of Meghan with you all.
Let’s see, this month is the month Meghan was transplanted. Not looking forward to any of this actually. Well, please pray for all of the children who are still fighting this disease, and those whose lives are about to change with the newly and daily diagnoses of Leukemia. We have a very dear friend of Meghan’s who is headed to Duke this month for transplant. He was diagnosed at Arnold Palmer after Meghan and Meghan would love to walk by his room because he would always make her laugh. Please keep him and his mom in your prayers. I will ask his mom if she would like me to put his caringbridge page up for all of you who would like to send your well wishes. She is a pretty private person and I wouldn’t do it without her explicit permission. Anyway, remember to let your kids eat desert first, and I’m sure this is happening everywhere, but central Florida is desperately in need of blood and platelets. I actually got a call from the blood bank asking me to donate but I told them I was pregnant so I am not a candidate anymore until after the baby is born. So, go donate......encourage everyone to register with the National Marrow Donor program and talk to your doctors about donating your cord blood. We NEED a national databank!!
Good Night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You.....EVERYBODY LOVES MEGHAN!
Mommy Misses You Most Angelface!
Carol
(^^Meghan’s^^ Mom)
Tuesday, October 21, 2003 8:20 PM CDT
Hey Stalkers...did ya think I retired? No such luck my friends....still here.....still typing. Today was Tommy Lee’s 6th birthday. WOW! Where did THAT time go? We had his party this past Saturday and he of course wore us all out. They delivered the moon walk (or as we like to say....the bouncy thingy) at 9:00 am for a party that didn’t start until 3:00pm. Needless to say, straight to the bouncy thingy he went.....bounce, bounce, bounce......I’m sure he can get a job at Disney World as Tigger whenever he wants to :o) Anyway, so bouncing he goes.....then it’s time for his flag football game at 11:00 a.m....scored a touchdown and a point after! Definitely a CANE! After football, bath, more bouncing and then party time! Of course Meghan’s best friend Jazzy was invited with her older brothers and the look on her face as she came down our front hall (with the kazillion pictures of Meghan down it) was absolutely priceless. Her head just went from side to side looking at every picture. I took her mom, aunt and Miss Mary up to what I call “the crying room” but was so afraid to let Jazzy up there. Lucky for me she was bouncing away with the other kids and didn’t even miss us. The reason I was afraid for her to go up there was because I felt like she would think Meghan was in there. Nothing in that room has changed since Meghan became an angel and to me, it still smells like her in there. I couldn’t bear to think of Jazzy up there looking all over for her best friend and then being disappointed when she couldn’t find her. Afterall, of course Meghan would be in her own room in her own house (at least in the mind of a 3 year old). So, thankfully, Jazzy didn’t know we were there and that saved some serious explaining to a 3 year old for me. So, the rest of the party went great. Tommy Lee had a great time and I think everyone had fun.
Today was Tommy Lee’s first day back to school (he’s in year round........probably the last year round school on earth :o), and I brought the obligatory cupcakes, juice, cheetos (for Meghan) so he could have a little party at school. Once out of school he goes to Kindercare (where there was another birthday cake waiting for him).....lucky for me, he doesn’t eat much in the way of sweets so while some of you are saying good grief Carol......that’s TOO much sugar.....I know he probably had 3 bites of a cupcake and possibly 2 bites of cake. No worries there for me...he definitely has my salty tooth and prefers chips to sweets. Tonight we went to dinner at Roadhouse because he wanted a YEEHAW just like Meghan. If you remember (or if I typed that on her birthday)......we went to Roadhouse on Meghan’s birthday and Tommy Lee was so concerned about getting them to yell YEEHAW for Meghan’s birthday over the speaker in the restaurant. Anyway, because they always want to be alike, Tommy Lee wanted a YEEHAW and got a really big one tonight. They gave him a sundae (see.....more sugar) that he ate the cherry off of and then gave away to daddy as well as a balloon. Do you know the first thing he did when we got home was to take that balloon off his wrist and send it to Meghan? They continue to be “joined at the hip” which is such a blessing for us. In addition to that, he was playing one of those “as I like to call them..... “rip-off games” where you put the money in and then position the claw-like thing over a stuffed animal or something and let it go only to have the claw not grasp anything......anyway, he was doing that and I’m sure Meghan put her wand down and he won the stuffed animal “Thing 2” from Dr Seuss. He said “this is for Meghan”. He’s such a good kid :o)
Speaking of being joined at the hip......one night we were talking about family and I was saying, “me, you and dad are a team aren’t we?”.....wherein he piped up and said Meghan’s on my team too! I said “what about the new baby?” He said the new baby isn’t on our team until it comes out of your belly. Meghan can be anywhere she wants to be and she will always be on his team......this new baby has very big shoes to fill in Tommy Lee’s eyes. Hopefully he’ll get better with this later, but for now, it’s very sweet that he continues to think of Meghan all the time.
So, as we approach Halloween this year it’s filled with incredible emotions for me. Meghan of course was in her fairy princess costume running after Tommy Lee and Rian yelling “wait for me” and we were gearing up for transplant with high hopes and lofty dreams. The thought of November makes me want to vomit now and every day thereafter is just a countdown to another first......I cannot tell you all how horrible this is. I KNEW I should have waited. I remember telling the transplant team that I would really like to wait until after the holidays and I’ll never forget them saying that the hospital is open thru the holidays and it makes no difference to them that she will be in over the holidays. I said it makes a difference to me. Fear of course won out because we went with what they told us that we should do it then because she was in remission and with her disease, there was a very high chance she wouldn’t be for much longer. Anyway, you all know the rest of this story...every day is a struggle to survive the day and then we have to have these “firsts” looming over us. I can’t imagine our “seconds” are going to be any better.
Lastly, thanks to Stalker Angie who looks for every memorial site on the internet for “her baby” to be placed on, Meghan is now linked to www.cancerkids.org. Go to children and memorials and then under type of disease type in biphenotypic leukemia. Also, if you want to purchase a gold ribbon to be placed on the Christmas tree in the capitol building in Washington, DC, in memory of Meghan or any other child with cancer, go to candlelighters.org and go to “light up the holiday with hope” section. Also, as if this isn’t enough..... I will soon be figuring out how to link you to Meghan’s Christmas Tree ornament which was made in her honor. I have to figure out how to link and do this and do that which I am totally inept at....so I have asked for directions, and hopefully will be able to do that soon.
I’m exhausted.....so I’ll go for now. Please, please, please....go donate blood, and if possible, platelets....there is a huge shortage of blood products. And don't forget to encourage everyone you know to register with the National Bone Marrow Registry, and if you, or anyone you know is pregnant, please talk to your doctor about donating the baby's cord blood.
Meghan.....continue to bless us with your gifts. Keep up the good work May :o) you’re changing the world angelface!
Good night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Carol
(Meghan’s Mom)
Thursday, October 2, 2003 7:56 PM CDT
Stalkers, Stalkers, everywhere! I know you’re out there because I can hear you breathing.......actually it’s much simpler than that...... I can tell by the visitor counter that you’re checking in and I appreciate it. That’s ok that you don’t leave a message, I really don’t have much to say myself :o) I figured I’d try to update with something meaningful or thought-provoking although I have no idea what I plan on talking about tonight. Usually when I start a journal entry I have a purpose. Something has either made me really angry, really sad, or gotten me way up on my soapbox. Not the case tonight. Nothing new is going on. The baby in my belly is growing, and I was able to see the baby’s first pictures last week during my first ultrasound. It’s VERY tiny, but knowing my kids, it won’t be for long.
I did get word from Candlelighters that they will be having bricks created to be placed in a park in Satellite Beach which I am really excited about. Candlelighters is providing all of their families with one brick and you can buy additional bricks for $25.00 a piece. I’m afraid I may go “brick crazy” building my own road out of all the bricks I buy in memory of Meghan. Oh well, she deserves a road named after her :o) I also plan on attending Candlelighter’s Ladies Night Out this coming Tuesday night. Last year was my first year at this event and it was absolutely wild. Lots of women drinking great wine, eating great food and watching the Candlelighter Moms model clothing from shops around Brevard County. Last year I modeled clothing and had a fabulous time. This year my belly is preventing me from modeling anything except the mustard stains from all the burgers I am consuming. There will also of course be no wine drinking for me......the running joke at my office is (and this is because I’m such a huge football fan...MIAMI HURRICANES....who else??????) anyway, when I first started telling my co-workers I was pregnant, one of my fellow Cane fans looked at me and said.......that’s great....but during football season?????!!!! Man! at the time I hadn’t thought about that! It’s very difficult on those Saturday afternoons at my sisters’ when our family is together watching the Canes mow down another opponent to not have that ice-cold Michelob Ultra.....but again, I digress.....one of my vices.....an ice-cold beer and football (I would say I was probably supposed to have been born a guy, but one of my sisters is a huge football fan as well as my niece). So, football with no beer it is....oh well, I still get to eat the snacks....and eat, and eat, and eat! One of the perks of being pregnant is people don’t look at you as you consume mass quantities of food like you’re crazy. Not too bad I guess.
As I was typing this (and I won’t say I don’t know why, because I do), Shane came to my mind. Instead of finishing this journal entry I went immediately to his website and knew then why I was directed to go there. It is one year ago today that Shane became an angel. I really can’t remember how I found out about him last year, but I followed his progress religiously through the summer as Meghan went through her treatment. I remember so well last year when I went to his website on October 2, 2002 and read that he had become an angel. I remember crying. Shane was the first “one” I lost. By that I mean I had never been up close and personal to a child dying and he was my first. Weird to say but maybe that’s why he is so special to me. A kid I’d never met, never spoken to and who lives hundreds of miles away spoke to me and was the first to show me how brave these children are. I am less of an amateur at losing children to this disease now, but it never gets easier. Each one who has fought so hard only to be taken away gets implanted in my heart and even if I never write another entry in their guestbooks, their parents should know I remember. If anything else, they should know Meghan’s Mom remembers their child. The memory of these children does something to you. People ask me why I still follow these children or why I still follow the parents who are grieving and I cannot explain it only to say, they are a part of me. For those still fighting, I can share in the joys of a clear bone marrow aspiration like nobody’s business, and I can share in the sorrow of a bad one, and really, truly feel the sorrow. For those who are grieving, I can find comfort in the fact that my emotions are not unlike most grieving parents. We are all angry, sad, and miserable and yet find some way to make it through each day. How? Who knows? Maybe it’s the angel we have sitting on our shoulder cheering us on as we sat and cheered them on so many, many long days and nights.
Before I get into my usual requests, I want to ask you all to stop by and let Patty (Shane’s mom) know you care. Shane’s website is www.caringbridge.org/oh/never_give_up (I guess my journal entry did have a purpose afterall)
Right now there is a little girl here in Florida, Katia who could really use a break. They are desperately searching for a bone marrow donor and have been having bone marrow drives all over the Tampa area. In fact, the Tampa Bay Bucs are getting involved this weekend with bone marrow registrations at the game on Sunday. Anyway, if you haven’t done so yet, please, please, please, register to become a bone marrow donor. It doesn’t matter where you are, this is a national databank (unlike the cord blood banks.....don’t get me started)! Speaking of cord blood banks, we received our information about saving our new baby’s cord. This process is different from donating it and I’m going to contact another cord blood bank to discuss some things with them. The cord blood bank here in Florida that I am looking at does not do the HLA typing (which is what determines a cord blood match for someone) prior to cryo-preserving it. This bank simply freezes the cord and keeps it for you until (God forbid) you were to ever need it. The cost of this service is very affordable. The initial collection at the time of birth is $275.00 which includes your first year of preservation. Every year thereafter there is a $50.00 charge. Reasonable enough I think. My nagging question that I need answered is: If we were to use another cord blood bank that does HLA typing prior to the preservation, does this mean we could potentially be contacted to donate the cord to someone? I think I want that option. If I were to receive that call saying your baby’s cord matches a child who needs a transplant will you donate? I would be hardpressed to say no. Then again, if I never asked this question and went with the Florida bank, I would never have that dilemma where I get a call but panic because I keep thinking “what if?” “what if lightning strikes MY family twice?” what if I saved my baby’s cord blood, got a call to donate it to someone who needed it right then....and then found out 1, 2, 3, 20, 30 years later that my child needed their cord blood and I had given it away? Good grief........I hate that family’s have to think about this at all!!!!!
So, say a prayer for all those still fighting, and for all those who are angels watching over us. You are all missed deeply and know that you made a difference...each and every angel who has graced this earth and left too soon. Your mom, dad, brothers, sisters, aunts, uncles, cousins, and friends miss you and think about you daily. Even those of us who never “knew” you....miss you.
Meghan.....Mommy’s request to you is for your to continue to bless us with your gifts. Keep up the good work May :o) you’re changing the world angelface!
Good night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Sunday, September 21, 2003 8:55 AM CDT
EVERYBODY LOVES MEGHAN!!!! Over $14,000.00 was raised by OUR team last night for the Orlando Light the Night Walk!!! Looks like we are one of the top teams in Central Florida, we were second last night behind a very large real estate company which only raised about $6,000.00 more than just our little "friends & family" team!!!! We may be the number one "friends and family" team in Central Florida.....we'll see :o)
Below is the speech I read at the Orlando walk for those of you who were unable to be there. For those who were...thanks for your love and support when I needed it most. As most of you know, that is "not my thing". Getting up before thousands of people and speaking....well, needless to say, I stink at it, but I have a mission and sometimes you have to do what you have to do. Anyway, I had a little angel on my shoulder giggling in my ear most of the time. So, for those of you who were there, you will see I missed a few lines in my speech, namely the request for donating blood and becoming bone marrow donors. Oh well, maybe next year.....anyway, you all know what you have to do anyway...that was just a reminder for the "stalker challenged". So, here goes.... and Billy....your song was played in Cocoa and Orlando, and EVERYONE loved it!
First let me start by thanking you all for coming out tonight and supporting this incredible cause. Last year was our family’s first Light the Night walk with the Leukemia & Lymphoma Society. Up until then, we had never heard of the walk. That is until last year when we were thrown into the world of Leukemia, and the constant hospital and clinic visits. Last year we came out with our 2 year old daughter Meghan who had been diagnosed April, 2002 with a very rare form of Leukemia, called Bi-Phenotypic Leukemia which is basically, AML and ALL combined. If you were here last year you may have seen her smiling and dancing and simply enjoying the night out with all the beautiful balloons. That night we joined the thousands of walkers with great hope and promise that our daughter would be coming back year after year walking as a survivor. This year we are back without our inspiration. Our daughter Meghan died February 7, 2003 at only 2 1/2 years old. So today, and until there is a cure, we are walking for revenge. Revenge against this deadly disease that kills far too many babies, teens and adults. The money that is raised by dedicated people such as yourselves helps to fund research for new therapies and hopefully, in the not too distant future, a cure. A cure so that no other family has to pick out a 3 1/2 foot pink fluffy coffin for their daughter.
I also want to ask each and every one of you to go donate blood and if possible platelets on a regular basis because these patients require alot of blood products sometimes almost daily. And please, if you ever do anything in your lifetime, register to become a bone marrow donor- you may one day be called upon to give life back to someone who otherwise would not see tomorrow. And now, I’d like to call up our team captain Louise Brill and give her this gift as a small token of our family’s sincere appreciation for all her hard work and dedication in making Meghan’s legacy live on thru our efforts to help raise enough money to find a cure for this disease.
With this said, I’d like to end with what I would tell Meghan every night as she lay cradled in my arms as I rocked her to sleep. This got to be a game where I would have to name friends, family, co-workers, nurses, doctors, Sesame Street Characters....anyone I could think of and it always ended with me saying... Good Night May....Mommy Loves You, Daddy Loves You, Tommy Lee loves you...to which she would reply..... “EVERYBODY LOVES MEGHAN“! And boy was she right! So now I want to introduce a song to you that was written for Meghan after she passed away. It was written by a complete stranger from a small little town in Ohio called Ironton. He had made his way to Meghan’s website and followed her journey through her treatment and cord blood transplant religiously. Meghan’s journey touched him so much that he wrote a song he called “The Shoebox”. What he didn’t know at the time was that Meghan died the day before her daddy’s birthday so there is very special meaning in the lyrics, more so than he ever imagined. So now, here’s “The Shoebox” written by Billy Bruce and sung by Alan Hamilton.
So, once again.....THANK YOU TO ALL OUR SUPPORTERS, THOSE WHO MADE DONATIONS AND OUR WONDERFUL SPONSORS:
Gold Sponsors (those who donated $500.00): Gemstone Realty; O'Hara & Nugent, PA; Publix Super Market Charities; The Health Law Firm-George F. Indest, PA; Catherine M. Youngdahl; Wicker, Smith, O'Hara, McCoy, Graham & Ford, PA;
Silver Sponsors (those who donated $250.00): Allen & Murphy, PA; Hamlin & Burton, Liability Mgmt; Florida Builders Direct; Magic Reporting; KNS Construction; Maher, Guiley & Maher, PA; Southern Sports; Ringer, Henry, Buckley & Seacord, PA; Ann, Gregory & Kaitlyn Weber
Bronze Sponsor (those who donated $125.00): Critters Pub; Merit Electric; Optronic Laboratories; Westmont Homes; The Presentation Group; Tommy,Carol & Tommy Lee Mack
All the same requests still stand: the desert first request still stands.......singing twinkle, twinkle little star also stands......and then come the usuals: Please, please, please....go donate blood, and if possible, platelets....there is a huge shortage of blood products. And don't forget to encourage everyone you know to register with the National Bone Marrow Registry, and if you, or anyone you know is pregnant, please talk to your doctor about donating the baby's cord blood.
Good night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Meghan: Changing the world....one Light the Night at a Time
Carol
(Angel ^^Meghan's^^ Mom)
Sunday, September 14, 2003 7:38 PM CDT
“The moment I wake up, before I put on my make-up, I say a little prayer for you.....while combing my hair now, and wondering what dress to wear now...I say a little prayer for you.....Forever and ever, you’ll stay in my heart and I will love you, forever, and ever we never must part, oh how I love you, together, forever, is how it must be to live without you would only mean heartbreak for me” ......... I’m sure this song sung by Dionne Warwick (ok- I’ve aged myself) was written under totally different circumstances and was never meant to refer to literally living without someone, but every time I hear it I cry and by cry I mean the heavy-duty, sobbing, mascara down your face cry. The words are so true. This is true heartbreak for me. I go to bed thinking about Meghan, dream about Meghan, wake up several times thinking about Meghan and wake up thinking about Meghan. That’s all when I’m supposed to be asleep. All day, it’s Meghan, Meghan, Meghan. A song, a smell, a picture, a food, a voice, a laugh, a story.......it never, ever ends. When I’m clicking channels I look away from the TV when I know I’m going to pass PBS Kids. God forbid Clifford or Jay, Jay the Jet Plane is on. I can hear her yell at the end of Jay Jay’s song “THAT’S ME!”. Meghan had such a large vocabulary for a 2 year old. I sometimes think God blessed me with this because he knew I wouldn’t be hearing her for my lifetime only for her lifetime. She knew all her ABC’s, the whole Twinkle, Twinkle Little Star song, Happy Birthday song, and loved to say the words when she watched ET and The Grinch. She would literally sit there and speak the dialogue as they were doing it. This had to be for her dad and I to store in our memory bank. These are things I think about just when I’m consciously thinking about her. As I’ve written about so many times before, the number of times where thoughts run through my head are so many that I have to make a concerted effort to block them out. I hate thinking about how rough she had it. I think about when she was vomiting blood constantly and no one would do anything telling me it was “just mucositis”. Until they put that tube down her nose to drain the never-ending blood accumulating in her belly, she would throw-up blood constantly, and not just a little bit. Can you imagine how horrible for a baby to see that and feel that and taste all that blood over and over almost hourly for literally seven days before someone did something about it? Think about when your child just throws up and how awful they feel. Now put blood by (what seemed to be) by the gallons in the mix. This is just one of the horrible thoughts I relive daily.
Sorry to gross everyone out. I don’t think most people know how truly horrific this disease is and even in my best and worst stories, I could never give you a true feeling of how helpless the parents feel and how sick these children get. They don’t deserve this, Meghan didn’t deserve this and I’m pretty mad about all of it. Just for the record, I TOLD all of you STALKERS that I would not be able to keep my ranting and raving in check for long. So I digress back to my old ways. Yelling, screaming, kicking and being just plain mad at the world.....and this, all in my head....outwardly, I don’t think you can tell. Guess Meghan isn’t the only actor in this family. Another Jeckyll and Hyde moment in my daily life.
On to much more happy news. Meghan has taken her magic wand (come on guys...this is a family show)....and blessed us with the expectation of a new baby. The official due date is April 19, 2004. This is most bittersweet as Tommy had a permanent (or not-so permanent afterall) surgical procedure to make sure our family would only consist of Tommy Lee and Meghan. When Meghan was diagnosed and we were desperately searching for a bone marrow donor, we contemplated surgery to reverse the birth control measure we had elected but decided we didn’t have enough time to have the procedure, try to get pregnant and then wait the 9 months to deliver. And so, as you all know the story goes we chose cord blood and went to transplant. After Meghan died there was no doubt in my mind that I wanted another baby. As all of you who know me, you know I wanted more anyway and have always said I would have 100 babies. My husband is the kindest, most loving husband and underwent the reversal with the hopes of our being able to conceive again. Well, true to form, less than 3 months after the surgical procedure, I am pregnant.
I was incredibly hesitant to tell Tommy Lee because we had broached the subject before with him and he has never been open to the idea. He constantly would tell me. Meghan is my family. I don’t want another baby. So I stayed quiet and thought as time passed he would be a little bit more open to the idea. One night he and I were in a store and he wrapped his arms around my waist and put his head to my stomach. All of the sudden, with as much contempt and disgust as he could muster he stood back and said “is there a baby in there”!!!! I said yes, I think so.......and he said “aw mom!” It was as if he were saying “we discussed this....there is to be no more babies”. I wish there was surveillance tape of that event, because it was such classic Tommy Lee. So anyway, he’s gone back and forth on the baby issue and one night the three of us were driving home from dinner and Tommy Lee said “Mommy, what if the new baby pushes Meghan out of my heart?” His dad and I tried to explain that his heart was big enough for Meghan and the new baby, but he kept insisting that this baby might make him forget about Meghan. We’re still working on this. Just the other day Tommy Lee came up with the perfect plan (at least in his mind)......his cousin Rian always talks about wanting to be a big brother so Tommy Lee told me “mommy, we can keep Meghan and Rian and Aunt Laurie can have the new baby so Rian can be a big brother” (don’t get any ideas Laurie....not gonna happen :o) So with the blessing of a new baby on the way you’d think it would make daily life a little easier. Trust me, it doesn’t. Now my mind is consumed with Meghan would have loved to be a big sister, and on and on it goes. There’s so much more that you can’t even think about such as when I’m in the doctor’s office for the first prenatal visit- I have to fill out “how many pregnancies, live births, living children”....UGH! Three pregnancies (including this one), two live births, one living. Crappy huh? This is the life of a parent who has lost a child. Always something there to remind me........
Well, it’s getting late, and my glasses are smeared with tears so I must go for now. For those of you who I will see this weekend at Light the Night.......our team is doing awesome! We have two banners that read “Everybody Loves Meghan” which we are requesting each and every one of our team members sign, and of course we’ll have our “Everybody Loves Meghan” t-shirts to wear. Billy’s song “The Shoebox” will be played at both the Cocoa and Orlando events so bring your tissues. Our goal of reaching $10,000 is well in sight.....Louise and I think we’ll make it or be VERY close to it! Keep up the fundraising this week....every penny counts!!!!
Another therapy session completed......requests are as follows: the desert first request still stands.......singing twinkle, twinkle little star also stands......and then come the usuals: If you want to help our Light the Night teams, please send a check payable to The Leukemia & Lymphoma Society (to my address: PO Box 1204, Titusville, FL 32781). Any amount is a good one. If you have a corporate sponsor who is willing to help: please email me directly at mmm723@aol.com and I will get back to you with the information. And, please, please, please....go donate blood, and if possible, platelets....there is a huge shortage of blood products. And don't forget to encourage everyone you know to register with the National Bone Marrow Registry, and if you, or anyone you know is pregnant, please talk to your doctor about donating the baby's cord blood. For those of you asking about the cord blood issue, there is no national databank like the bone marrow registry and hopefully with alot of hard work, I will at least start something in my lifetime. The best we can do at this point is talk to your doctor and find out whether or not there is a facility in your state that will accept donations. I will keep you all up to date with my efforts on this issue because as you can see, it’s such a waste to throw away this potentially life saving blood.
Meghan.....Mommy’s request to you is for your to continue to bless us with your gifts. Keep up the good work May :o) you’re changing the world angelface!
Good night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Meghan: Always in my heart, forever in my soul
Friday, August 29, 2003 8:37 PM CDT
“And the child born on the Sabbath day is bonny, blithe, good and gay”. Well, that seems to sum it all up doesn’t it? I guess from reading that you can guess that Meghan was born on a Sunday. I guess you would be able to guess that if you remember the childhood poem “Monday’s Child”, which I don’t blame you if you don’t because for the longest time.....I couldn’t. And so it goes like this:
Monday’s child is fair of face,
Tuesday’s child is full of grace,
Wednesday’s child is full of woe,
Thursday’s child has far to go,
Friday’s child is loving and giving,
Saturday’s child works hard for a living.
And the child that is born on the Sabbath day
is bonny, blithe, good and gay.
So, because I know I’ll be called upon the carpet for these words....I had to look each word up myself. Bonny: attractive, fair....also, fine, excellent. Blithe: of a happy lighthearted character or disposition. Good: better, best...of a favorable character or tendency. Gay: Happily excited, keenly alive and exuberant.
This poem has been on my mind since Tommy Lee was born. When I was in my last week of pregnancy with him, I kept worrying that the baby I was carrying would be a “Wednesday’s child”.....”full of woe”. I had Tommy Lee at 11:21 p.m. Tuesday night, October 21, 1997. When my boss at the time found out I had Tommy Lee at 11:21 p.m. he said “you REALLY didn’t want to have a Wednesday’s child”. It was almost like a running joke, but in some weird way, it was true. For the longest time I couldn’t remember the entire poem, and I kept saying to myself if I ever found it I would buy it. Who knew you could find it on the internet? DUH, sometimes I amaze myself. Anyway, just this past week I kept thinking about the poem again and ran a search and voila..... there it was. When I got to the last paragraph, the smile that swept across my face was huge. I KNEW there was a reason I wanted this poem. Those descriptions could not be any more perfect for Meghan. If anything I have ever written on this site has given you a little insight into her personality, these words do more to capture her spirit than I think I have ever done. So with this said, the little laundry-basket, choo-choo train loving, cheetos eating, happy, giggly, bear loving, booty shaking froggy voiced girl is definitely bonny, blithe, good and gay.
So, I guess I should apologize to you stalkers because this is such a short update, but I’m trying to keep my ranting and raving to a minimum. I’d hate for you guys to come each time only to get an earful from me and my wacky self. I’m trying very hard to maybe put some positive entries here to let you all know I’m not always a ranting, raving lunatic (although for those of you who know me, you can imagine how long I’ll be able to keep THAT charade up).
I do want to let you know (and I REALLY hope this isn’t a big secret), but Meghan’s song “The Shoebox” is up for song of the month on whitedoveradio.com. Can you even imagine that it has only been playing maybe 2 1/2 to 3 weeks and is neck and neck with another song that has been playing at least all month if not longer????? I’m pretty sure Meghan is having her Angel friend Shaney use his computer and click on the “thumbs up” button every time it plays on the station (they might even be cheating clicking it over and over.....I‘d imagine you‘d have that kind of power in Heaven, and knowing those two, they’re probably a mischievous pair). For those of you who have gone to the website for whitedoveradio, if Meghan’s song is playing be sure to give it a “thumbs up”. ....apparently our votes count....and the more, the better...... Our little angel definitely had a hand in this :o)
And, now that our therapy session has come to a close, I'll end with what you all come here for....Meghan’s Mom’s All Request Hour:.......the desert first request still stands.......singing twinkle, twinkle little star also stands......and then come the usuals: If you want to help our Light the Night teams, please send a check payable to The Leukemia & Lymphoma Society (to my address: PO Box 1204, Titusville, FL 32781). Any amount is a good one. If you have a corporate sponsor who is willing to help: please email me directly at mmm723@aol.com and I will get back to you with the information. And, please, please, please....go donate blood, and if possible, platelets....there is a huge shortage of blood products. And don't forget to encourage everyone you know to register with the National Bone Marrow Registry, and if you, or anyone you know is pregnant, please talk to your doctor about donating the baby's cord blood. Unfortunately, if you don't donate this life-saving cord blood, it is literally thrown in the trash as "medical waste". And that my friends, is truly a waste! Also, I continue to ask that if you haven't done so already, it’s never too late to send a little bit of money to Candlelighters on behalf of Meghan's birthday: Candlelighters of Brevard County, PO Box 1353, Melbourne, FL 32902-1353.
Oops, sorry was going to end this but, this reminds me...... THANK YOU to: Christopher & Melanie Rizzo - Lynn McCalvin - Sheila, New York State - Alan, Louise & Haley Brill - Lea Cohen - Chris & Cassidy Guenther - Patti & Jesse Black and Ann Weber for their generous donations made to Candlelighters on behalf of Meghan’s birthday. You guys amaze me with your generous spirit and neverending giving. Each and every one of you, and let me say for the record, that Lynn and Sheila have never met me or Meghan and only know about us thru this website, but have found it in their hearts (along with those who know us) to give a little something extra of themselves. They come here religiously as do the rest of you and because Meghan touched their lives in some small way, sent a check across the United States to a charity that they probably had never heard of and that hopefully will never have to do anything for them or their family, but has done so much for me and mine. This is in no way intended to take anything away from those friends who know us and sent their donations, it’s simply a sampling of how good people truly are deep down inside. I’m not sure that if I had not been thrust into this “caringbridge” world, and had just stumbled across some mother asking for donations for a charity I’d never heard of, if I would have done what these two incredible women did. I’d like to think I would, and I know I would now......but 16 or 17 months ago......I wonder. Meghan continues to bless us all with her gifts. Keep up the good work May :o)
Good night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Meghan: Always in my heart, forever in my soul
Wednesday, August 20, 2003 8:07 PM CDT
Hi Stalkers! Time for yet another therapy session....care to join in? It happened yet again.....”who are these beautiful children???” I’m starting to wonder if people are so shocked that my kids are so beautiful (and, by the way.....look NOTHING like me.....hmmmmm....starting to get a bit of a complex here (LOL). Anyway, luckily for them they look nothing like me I say :o) So, again, I say, those are my kids, Tommy Lee just started Kindergarten.....Meghan just started Heaven.
Just like the countless other parents of children who have earned their wings MUCH too early, it is an extremely awkward conversation when someone asks “how many children do you have”. Your first instinct is always (in my case, to answer two)....and your second instinct is to say, one just had to leave this earth a little early....she’s done her job here, now it’s up to her to watch over us all and make this world we live in a little better place since she left it behind.
In my Jeckyll and Hyde world, these conversations are a daily occurrence. It seems, and I’m sure I could poll all of the other parents of angels, that our worlds have come to a complete standstill, and amazingly, everyone else’s has continued.
I know I’ve talked about this before, but think for a moment about the unthinkable. What if your child who you just tucked in to bed tonight is gone tomorrow. There is no way to fully understand the loss, but bear with me. For those of us with children who battled life threatening diseases, our entire lives were wrapped around the countless clinic visits, hospitalizations, and the numerous medications we administered as well as our daily cleaning of the “tubies” flushing them religiously with saline and heparin to make sure those lines were always patent. One of the greatest fears was a broviac breaking or clotting. This could potentially mean a surgery to remove and replace the line, or a clinic visit with the nurses trying desperately to save the line by pushing TPA through it to clear the line. In addition to all of this, we become complete “germaphobes”. Mind you, this isn’t the typical “new baby germaphobe” this is life-threatening germaphobe. These children who are so severely neutropenic and immunocompromised are at such an incredibly high risk of developing any type of infection from the littlest thing. This of course changes your life drastically in and of itself. No more family get-togethers... You can no longer pop in to the grocery store with your child. What if they touch the shopping cart that has been touched by a million other hands? What if someone sneezes on them? What if you get caught in the rain? What if, What if, What if? Our entire lives evolve around the child whose life is now threatened and we’re tired, worn down, emotionally exhausted and in alot of cases, financially drained. The running around that we did because we had to came to a screeching halt. Sometimes with no warning. You get into a routine with Leukemia and then one day everything you worked so hard to get right, medications, being on time to clinic when you KNOW she wants to stop and watch the bears is no longer needed. It’s a very strange feeling when all of the sudden your days are so much more emptier. Emptier in ways you could have never imagined. Not only are you dealing with the loss of your child, but your whole life, your whole routine, your whole being is changed without warning. I guess it’s zero to sixty in real life only in reverse......
Getting on the subject of hospitals, let me give you a little insight as to “if you think it’s bad enough you’re driving home 150 + miles leaving behind the body of your precious angel” .....you get a call from the hospital saying “your child’s organs are not suitable for donating, however, we’d like to know if we could have your child’s tissue and skin”.......HUH? I’m sorry, I thought for a moment you just asked me to donate my 2 1/2 year old daughter’s skin......Yep, that’s the life we parents experience after the death of our children. I wanted to yell, of course her organs are “not suitable” YOU destroyed them while she was there! She came in with perfect “organs” and was left with “unsuitable organs” to be buried with. How’s that for irony? As I’ve mentioned before, these thoughts generally are a prelude to the other horrible thoughts that cloud my head about Meghan’s last days. She fought so hard and so valiantly only to be taken away. If only I could have amnesia starting about December 26th (her first seizure), to today and every day hereafter. If all I had were happy thoughts about her treatment, that would be one thing, but transplant is a very horrific procedure....even for those who survive it, it leaves long-lasting scars.
Moving on to another subject and jumping all around, I finally got my copy of Meghan’s song “The Shoebox” written by Billy and performed by Alan. I knew it was going to be difficult to get through. Simply reading the lyrics will bring me to tears in an instant so I knew this was not going to be easy. And having said that, and being a glutton for punishment, I put the CD in and pushed play. Wow- THIS is my Meghan’s song. It is beautiful and heart wrenching all at the same time. I didn’t tell Tommy Lee the song was written for Meghan because sometimes he gets a little miffed at all the attention she STILL gets....but he was smiling and listening so I knew he liked the song too (usually if he doesn‘t like a song, he‘ll tell me to put on the Shrek song....which is really the song that goes “hey now, you‘re an all-star, get your game on, go play“) but he didn‘t so I knew it was a hit in his mind and definitely in mine. See Billy, Tommy Lee definitely approved....you’re golden now :) Anyway, since Monday night, I’ve listened to it many, many times, and because I don’t think in advance of my actions, made the mistake of putting it in first thing Tuesday morning on my morning drive. Well, my make-up did look good at one point that morning, that’s all I have to say. After that song, it was all downhill.....I’m pretty sure when they say “waterproof mascara” they don’t mean it will withstand torrential downpours....just a tip for all the women out there.....waterproof mascara plus tears equals one HUGE mess on the face. So, off to work looking like Dr. Jeckyll. Well, it was appropriate at least.
If any of you are still reading at this point, and I haven’t bored the mascara off the women, I want to thank you for coming by and continuously showing your support for me, Meghan, Tommy and Tommy Lee. I sometimes wonder what brings you all back......Meghan or my ramblings and insanity and train-wreck of a life, and I always come to the same conclusion. You all care how we’re coping with this. Most people cannot fathom (there ya go Bubba).....what our worlds are like. I think you might try, but your worst scenarios can’t come close, trust me. Grief is an all-consuming shadow that has been placed like a veil over our heads and while we walk through the shadows of our veil, people around us have completely forgotten what happened six short months ago. I’ve seen people who have the audacity to write on other Angel’s website’s guestbooks (say that real fast) about this exact same thing telling the parent “life goes on...people move on” .....as if we’re supposed to “buck up and suck it up” and we’re then expected to say “you know, you’re right.....my child who I was only partially attached to...I’ve got others (hopefully I don‘t have to explain this as tongue-in-cheek, but I will), has gone to heaven and I have to behave appropriately in front of my friends and family hiding my grief so as not to “offend” anyone” ......or better yet, make you uncomfortable by talking about my angel. Can you believe this goes on in our world? It does and I can point you to site after site. Boy, I’m all over the place tonight.....guess that’s what free therapy does for ya....ramble, ramble, ramble, vent, vent, vent..... thank goodness you all don’t charge by the hour or I’d be broke.....plus I’d have a horrible crick in my neck from typing while lying on a couch......
So I’ll end tonight’s therapy session with my usual requests.....you all know the ones.....eat desert first, wander aimlessly with a goofy smile on your face and sing “Twinkle Twinkle Little Star” as loudly as possible so Meggie can hear ya (oh, hey, this is a good one....I’ll make this an official request- aw, what the heck- the desert one is a real request as well....there I said it...it‘s law).....now on for the real requests.....If you want to help our Light the Night teams, please send a check payable to The Leukemia & Lymphoma Society (to my address: PO Box 1204, Titusville, FL 32781). Any amount is a good one. If you have a corporate sponsor who is willing to help: please email me directly at mmm723@aol.com and I will get back to you with the information. And, please, please, please....go donate blood, and if possible, platelets....there is a huge shortage of blood products. And don't forget to encourage everyone you know to register with the National Bone Marrow Registry, and if you, or anyone you know is pregnant, please talk to your doctor about donating the baby's cord blood. Unfortunately, if you don't donate this life-saving cord blood, it is literally thrown in the trash as "medical waste". And that my friends, is truly a waste! Also, I continue to ask that if you haven't done so already, there's always time to send a little bit of money to Candlelighters on behalf of Meghan's birthday: Candlelighters of Brevard County, PO Box 1353, Melbourne, FL 32902-1353.
Good night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Meghan: Always in my heart, forever in my soul
Carol
^^Meghan’s^^ Mom
Friday, August 15, 2003 7:18 PM CDT
Hi Stalkers.....I had to update to thank each and every one of you who came to our defense. As most of you “faithful stalkers” know, there is an idiot who doesn’t get our term of endearment, ie: stalkers. As usual, the first thing I did when I got to work this morning was go to Meghan’s website and read the guestbook. I guess I’m my own stalker...oh well, getting back to the guestbook.....I was so surprised, and happy when I read all of the entries from my true, faithful stalkers. Your words are heartfelt and mean a great deal to me. There were even entries from people I don’t think I’ve ever seen on the site....and they too were positive and powerful.
Most of you who read Meghan’s site come here because you were “touched by an angel”. Just so happens, it is my angel ^^Meghan^^ :o) Through our journey I’ve “met” so many other families of children who are battling childhood cancer and the like. The thing I find most interesting, but not surprising, is that the messages to those families from caring friends and family also tell of how much their child has touched lives. I thought long and hard about how Meghan has touched lives, and continues to do so, and it dawned on me, that Meghan, like the many, many children before her, and since, touch lives because of the way they battle a disease whose odds are not particularly in their favor. The number of stories I read about children taking their medications, having spinal taps, chemotherapy treatments and the like are truly staggering, but they all share one thing in common, they handle this most difficult time in their life with grace and dignity. Now, you wouldn’t think a 2-year-old would have any dignity, but Meghan did, and so do all of the other children I read about. It is not uncommon to read that their child danced, played, smiled and enjoyed life the entire time of their treatment just as Meghan did. These children truly live life to the fullest, and even in their most darkest hours, manage to make their friends and family wonder....how do they do it? How does this 2-year-old who is having horrible things happen to her little body, wake up with a smile and dance her way across the hospital? And I think part of the answer may be, each and every one of these children were put on this earth to remind us all that life is too short and we are not guaranteed another day. And for the parents of healthy children, please don’t think I am saying your child’s life is not as “important”, because that is about as far from the truth as you can get. I think the children battling diseases are here to help remind us all not to take those healthy children for granted. Had you not ever “met” Meghan, would you be as patient? Would you be as forgiving? Take a minute to scroll down to the guestbook entry written by Billy Bruce on March 1, 2003. This song “The Shoebox” was written after Meghan passed away and has now been recorded. In fact, it will be played at both the Light the Night Events in Brevard County on September 19th and the Orlando event on September 20th. Anyway, back to the song, this song epitomizes what these children leave behind in their legacy..... the ability to make us all stop and think about our actions. Hopefully, the next time you start to fuss about the spilled Cheerios, or the painting outside the lines...you will think...I’m lucky to have spilled Cheerios. There are so many out there who aren’t as lucky.
As a parent of a child who has passed away (boy, even after six months, that’s still so difficult to type and read in print), I find myself doing all I can to keep her memory alive. I know I’m rehashing here, but hang in here with me.....Meghan is my daughter, and the idea that anyone could forget about her or not ask about her if they see her picture can send me over the edge (although I guess it doesn’t take much)....for example, just this week a new employee came into my office (for chocolate....because I’m the keeper of the candy at work :o), anyway, you cannot get to the chocolate without reaching over pictures of Tommy Lee and Meghan. So, this person said, who is this beautiful little girl, and I said that’s my daughter Meghan, she died of Leukemia in February (gulp....breathe, breathe, breathe- ok, blink, blink, blink). I thought this person was going to stumble over all of her “I’m sorry’s”. I, of course, had to explain that I want people to ask me about her and that she did not bring up any “old wounds“..... there is nothing old about my wounds, I think they’re about as fresh and as painful as they can be. So, again, not to rehash but, the purpose of this is to let you all know that I want people to tell me stories about her. I want people to remember her. I want people to tell me she touched their lives...even if through a website. So, stalkers, to go back to my initial reason for writing tonight was to thank each and every one of you for standing behind me and Meghan. For letting us know that even in my most insane ramblings, you all are here for us and you care. And most importantly, reminding me that Meghan did touch lives and has made a difference in this world...even if she was here for only 2 1/2 years. And for each and every time I use the term “stalker”, my friends and extended family, know that I mean it with the utmost respect and gratitude. Gratitude for each of you coming back day in, day out, and sometimes, day in, day in, day in, day in...... :o) (as any true stalker does).
So, here goes.....you all know the drill.....Don’t forget......if you want to help our Light the Night teams, please send a check payable to The Leukemia & Lymphoma Society (to my address: PO Box 1204, Titusville, FL 32781). Any amount is a good one. If you have a corporate sponsor who is willing to help: please email me directly at mmm723@aol.com and I will get back to you with the information. And, please, please, please....go donate blood, and if possible, platelets....there is a huge shortage of blood products. And don't forget to encourage everyone you know to register with the National Bone Marrow Registry, and if you, or anyone you know is pregnant, please talk to your doctor about donating the baby's cord blood. Unfortunately, if you don't donate this life-saving cord blood, it is literally thrown in the trash as "medical waste". And that my friends, is truly a waste! Also, I continue to ask that if you haven't done so already, there's always time to send a little bit of money to Candlelighters on behalf of Meghan's birthday: Candlelighters of Brevard County, PO Box 1353, Melbourne, FL 32902-1353.
Good night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Meghan: Always in my heart, forever in my soul
Carol
^^Meghan’s^^ Mom
Tuesday, August 5, 2003 8:16 PM CDT
Hi Stalkers......I promised I would update soon, and although this is sooner than even I would have expected, I felt compelled to write another journal entry. I believe I have had an epiphany (like that one Billy Bruce? :) I was driving home from work this evening and as usual, my thoughts turned to Meghan. I have about an hour’s drive to and from work in Orlando which, could either be a very good thing where I can unwind and clear my mind....or, most often, think of Meghan. Sometimes, my thoughts of her are horrible ones. I can remember every tube, every IV, every machine, every medication, every single lab value that ever crossed the charts, and I can remember very horrible things that happened to her little beautiful body while in the hospital. I HATE when these thoughts cross my mind, because I can truly feel her pain. The only thing I repeat to myself when these things cloud my mind is that she was on a great deal of pain medication, and I know she wasn’t in pain. I made sure of that with every ounce of my being. My daily instructions to the doctors and nursing staff was always, she is to NEVER be afraid, and NEVER be in pain. If, for a moment I thought either of those two things were creeping into her life, I would make them give her medication. I hated the thought that she could wake up and see all of the machines, and tubes, and IV’s in her and be afraid. And so it was.....she was never in pain, and she was never afraid.
Anyway, back to my epiphany.....I was thinking how incredibly strange my life has become. Every day I get up , take a shower, put my make-up on, get dressed, and go to work at a large Downtown Orlando Law Firm. While there, surrounded by pictures of Tommy Lee, Meghan and Tommy, I work and try to keep thoughts of how sad I am at bay. I go to lunch with my friends, laugh, joke, and help our attorneys on cases dealing with very complex medical malpractice claims. Of course, while going through medical records, I always take notice of labs, know exactly what the physicians are referring to in their notes, and sometimes, have to stop reading before my mind is flooded with thoughts of Meghan’s hospitalization. What used to have me fascinated beyond belief, now has me dreading one more medical record. I always go straight to the White Blood Counts, Platelet Counts, Liver Enzymes, Blood Pressures, Heart Rates, and I can truly go on and on and on. I know the normal levels of each of the labs like the back of my hand. Gosh, I am rambling, but what the heck, you’re still reading this, so I’ll continue. Anyway, right, my epiphany (gosh I love using that word)..... anyway, as I was driving home and had this epiphany, I realized that I am a living Dr. Jeckyl and Mr. Hyde (only a female version that doesn’t kill :)....... Anyway, when I am at work, or out with friends and family, or cooking dinner.....I am Mr. Hyde. I do what I have to do, smile, laugh, tell the occasional bad joke and act like everything is “fine” (there’s that word again). And then, when I’m in the car alone, trying to get to sleep (which always necessitates a sleeping pill), or just have a minute to think, I am Dr. Jeckyl. I am completely, emotionally drained, sad, angry, defiant, and mad at myself for putting her through transplant which I was never 100% sure about. I was never the parent that said “it’s my gut feeling to transplant”, because for sure, I had NO gut feeling about it. I guess that SHOULD have told me something. I should have listened to my “no-gut” feeling and realize that “if you choose not to decide, you still have made a choice”. And so this is why I say I am living two very distinct lives at the same time. Happy, carefree mom to Tommy Lee, wife to Tommy, and then, sad, sad, sad, Mom to Angel Meghan.
I know some of you mentioned that it must be hard to write these entries. It is, but if I didn’t, maybe I wouldn’t be able to be Mr. Hyde. Maybe I would always be Dr. Jeckyl and THAT couldn’t be good for anybody. So, as much as this is a catharsis for me (Billy Bruce....ya still with me??), it is also a catharsis for my Dr. Jeckyl side. I can’t run down the street kicking and screaming at every one in sight, at least not if I want to stay out of jail.....so, I’ll run kicking and screaming to my computer and write down my innermost thoughts and feelings for the whole world to read (oh boy- I really AM sick aren’t I?) (LOL).
One more thought before I go (yeah right.....) I was thinking as I was driving home about how Meghan, Tommy Lee and Daddy would play hide and seek every night. They both would hide and Daddy would walk around the house saying “are you in the closet???” “are you in the bedroom?????”.....and Meghan would always pipe up each time and say “NOOOOOOOOOOOO” and giggle with such delight. She never got that you were supposed to be quiet and hide....she thought it was a guessing game.....That makes me smile :)
Don’t forget......if you want to help our Light the Night teams, please send a check payable to The Leukemia & Lymphoma Society (to my address: PO Box 1204, Titusville, FL 32781). Any amount is a good one. If you have a corporate sponsor who is willing to help: please email me directly at mmm723@aol.com and I will get back to you with the information. And, please, please, please....go donate blood, and if possible, platelets....there is a huge shortage of blood products. And don't forget to encourage everyone you know to register with the National Bone Marrow Registry, and if you, or anyone you know is pregnant, please talk to your doctor about donating the baby's cord blood. Unfortunately, if you don't donate this life-saving cord blood, it is literally thrown in the trash as "medical waste". And that my friends, is truly a waste! Also, I continue to ask that if you haven't done so already, there's always time to send a little bit of money to Candlelighters on behalf of Meghan's birthday: Candlelighters of Brevard County, PO Box 1353, Melbourne, FL 32902-1353.
Good night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Meghan: Always in my heart, forever in my soul
Carol
^^Meghan’s^^ Mom
Sunday, August 3, 2003 4:52 PM CDT
Hi Stalkers.....Sorry for the long delay in updating. As most of you know, I haven’t updated since before Meghan’s birthday on July 23rd. I’m sure you all can figure out why. In addition to July 23rd being a most stressful day because it was what would have been Meghan’s third birthday, it was also stressful in that the Monday beforehand, July 21st, my father was hospitalized. He had some very confusing symptoms, and was ordered to undergo a heart catheterization. You guessed it....on July 23rd. So, of course I did not go to work that day, and after going to the cemetery to visit my May and put down some very pink and white roses, I went over to the hospital to sit and wait out my father’s heart cath. Luckily, all went well and my dad had no blockage and although he is still experiencing weakness and fatigue, he is out of the hospital and doing relatively well (although you can’t convince him of that).
Anyway, we all went back over to the cemetery on Sunday the 27th to visit Meghan again. I have to call and complain to the cemetery people because someone is leaving food at one of the gravesites near Meghan’s which is just plain grossing me out. There are also alot of people leaving chatchkies all over the gravesites, such as soda cans, beads, and other bizarre stuff. The reason this bothers me so much is that my mother is buried in the same cemetery as Meghan and when she first died I had purchased a small angel and placed it on top of her marker. Within less than one week, it was gone and I was told that unless it is flowers in an “approved” vase, it will be removed. It seems now they’re getting very lax in their maintenance and are actually letting stuff sit there that is just plain gross. I understand that the kid who is buried there liked soda....but good grief....don’t leave a soda can on his gravesite. I think it’s rather morbid and in particularly bad taste. The food thing is so gross that I can’t even begin to describe it. So, another mission for me.....you’d think the cemetery people would notice this stuff as they’re mowing the grounds. I may get a few raised eyebrows from some of you reading this thinking “who does she think she is saying what we can and can’t put on our gravesites”.....well, you’re right except for the fact that I have to physically walk over and around all the “mementos” you are placing there. I also understand that it somehow makes you feel a bond or something, but I’m pretty confident that the kid in that plot is not drinking that soda, and the guy buried near Meghan is not eating those bagels and the other nasty food you keep leaving there. All that you are accomplishing with that is the birds come, tear up the food and leave presents on top of the headstones for us parents to clean off. Thanks.
Wow, what a diatribe that was! Take your shots at me if you want, I’m not budging on my opinion that you should have some decorum and respect for those buried around your family member as well.
Enough said about that......the three of us just returned today from a weekend at Indian Rocks Beach with my sisters and their families. We had such a great time swimming, relaxing and eating. Of course, as always, there was such a feeling of somebody being missing that it is almost overwhelming to me at times. It is SO wrong that Meghan never got to go swimming with us, go to the beach, run in the sand and have mini-sleepovers at her aunts’ hotel rooms. It is all I can do to wake up in the morning without what feels like two very strong arms pushing my shoulders down. The despair is like no other in this world. To know that you have to get up and live your life after it has been shattered is a very difficult road and the physical pain in my heart is sometimes scary. My chest constantly feels as if there is (for lack of a better term) a huge hole in it. Meghan was such a bright star. She was so funny and smart.. I can hear her voice all the time (which I guess is a very good thing), but incredibly painful. I just cry all the time thinking she should not have gone thru all of that chemotherapy and radiation only to die. I wonder if we had done nothing would we have had her longer? I know what the doctors say, but sometimes you can’t convince me. I am sure that had she not been transplanted, we would have had her at least a few more months.
Sorry for jumping around here, I just wanted you all to take special note of the guestbook entry written by my good friend Angie (Jazzy’s Mom) about our girls last playtime. That is exactly my point. Angie and I NEVER thought for a millisecond that those girls would never see each other again. If either of us had any inkling, things would have been SO different. We would have let them play longer that day at Kindercare, we would have let them hug a little longer, we would have taken more pictures, we would have, we would have, we would have....... You get the point people. Neither, Angie or I, nor Meghan and Jazzy knew what was going to happen in less than 3 full months from that date. Which, of course, is exactly why I say, let them eat cake, let them play longer, let them watch one more movie with you, read that book one more time for the hundredth time......I am a living testament to the if I only had one more day with her. I know Meghan knows how much we all loved her....after all, she told me so every night :) But, when you don’t have that “one more day” you think of all the things that you should have done. I should have let her push the choo-choo train laundry baskets a hundred more times, I should have given her another handful of cheetos, I should have kissed her neck and made her laugh one more time, I should have held her harder and longer one more time, I should have tape-recorded her singing, videotaped her dancing, let her garden the weeds as if they were the most beautiful flowers in the world, I should have let her stand at the door and yell for Bear and then sat and REALLY watch her as she would run screaming from the doorway as he came bounding up onto the deck. But all of these things I have etched in my mind like the most incredible Leonardo DaVinci piece of art. In fact, I don’t think, in all his glory, he could have made a more beautiful picture than those etched in my heart of Meghan. In fact, I’m sure he couldn’t. The thing about Meghan was she was very sly. She knew she wasn’t supposed to do something, but I think she thought “I’m too cute for them to get REALLY mad at me”....and she was right. One time Tommy Lee came running into the kitchen “Meghan’s on the stairs”...so I go running and Meghan is sitting on the top stair grinning like a Cheshire cat. I’m glad she got to master those stairs.....I don’t know what it is about kids and stairs when they’re toddlers, but they love ‘em and we do everything we can to keep them off ‘em. I’m glad she got up there. She looked so proud that she did it by herself. Of course, truth be known, she was following Tommy Lee up to his room :)
Well, I’ve poured my heart out and now I must go compose myself. I’ll update again soon- I promise. Thanks for still checking on us. We’re all “fine”.
Don’t forget......if you want to help our Light the Night teams, please send a check payable to The Leukemia & Lymphoma Society (to my address: PO Box 1204, Titusville, FL 32781). Any amount is a good one. If you have a corporate sponsor who is willing to help: please email me directly at mmm723@aol.com and I will get back to you with the information. And, please, please, please....go donate blood, and if possible, platelets....there is a huge shortage of blood products. And don't forget to encourage everyone you know to register with the National Bone Marrow Registry, and if you, or anyone you know is pregnant, please talk to your doctor about donating the baby's cord blood. Unfortunately, if you don't donate this life-saving cord blood, it is literally thrown in the trash as "medical waste". And that my friends, is truly a waste! Also, I continue to ask that if you haven't done so already, there's always time to send a little bit of money to Candlelighters on behalf of Meghan's birthday: Candlelighters of Brevard County, PO Box 1353, Melbourne, FL 32902-1353.
Good night May.....Mommy Loves You, Daddy Loves You, Tommy Lee Loves You....EVERYBODY LOVES MEGHAN!
Meghan: Always in my heart, forever in my soul
Carol
^^Meghan’s^^ Mom
Sunday, July 20, 2003 10:02 AM CDT
Hi to all my stalkers out there! As we approach July 23rd, what would have been Meghan's third birthday, I want to thank each of you who sent in a donation to Candlelighters on her behalf. I also wanted to let those of you in the Central Florida area know that on Wednesday, July 23rd at exactly 8:00 a.m. a local radio station 98.9 WMMO will be doing a select-a-set in honor of Meghan's birthday. What they do is play three songs in a row and make a dedication to her. I do not know what songs will be played in her memory as this was all brought together by my very good friend, and team captain of our Light the Night Team, Louise Brill. So, if you're on your way to work Wednesday morning, or at home and can listen to the radio, please do. WMMO has also asked to put Meghan's picture and story on their website and we have agreed, but I do not know if that has been done yet. I'm sure for all of you out-of-towners, you can log on to WMMO.com or 98.9 (I guess- I'll get the correct address on here if that's not it), and you can see a little bit about Meghan on there.
As far as our teams go for the Leukemia & Lymphoma Society's Light the Night walks in September, both Meghan's Munchkins in Brevard County and Everybody Loves Meghan in Orlando are off to incredible starts raising money for the fight against Leukemia and Lymphoma. We truly appreciate all of the work everybody is doing helping this worthy cause. Once we reach the cutoff for corporate sponsorship in the Orlando area which is the end of August, I will be posting the names of all of the people and corporations who have made very large, generous donations on behalf of our team Everybody Loves Meghan so that you can visit them and support their business.
So, as you all know, this upcoming week will be miserable for our family. Meghan deserved to have her third birthday here with us, not watching from the stars as we sit at her gravesite and grieve. I wanted to share this little thing that happened yesterday at the mall when we were out school shopping for Tommy Lee who starts Kindergarten on Thursday, July 24th (as if my week won't be bad enough, I'm sending my baby boy to "big school".....traumatic for me.....probably not for him :). Anyway, we were all walking out of Sears and there was a little girl mannequin and a little boy mannequin which we all walked right past and after we were out of the store and into the mall Tommy Lee walks back into the store and said, "wait everbody, look.......me (pointing to the taller, little boy mannequin) and Meghan (pointing to the smaller, little girl mannequin) with the biggest smile on his face. I love that he thinks of her ALL the time.
So, I continue to ask that if you haven't done so already, there's always time to send a little bit of money to Candlelighters on behalf of Meghan's birthday. Also, if you want to help our Light the Night teams, please send a check to The Leukemia & Lymphoma Society (to my address: PO Box 1204, Titusville, FL 32781). Any amount is a good one. If you have a corporate sponsor who is willing to help: please email me directly at mmm723@aol.com and I will get back to you with the information. And, please, please, please....go donate blood, and if possible, platelets....there is a huge shortage of blood products. And don't forget to encourage everyone you know to register with the National Bone Marrow Registry, and if you, or anyone you know is pregnant, please talk to your doctor about donating the baby's cord blood. Unfortunately, if you don't donate this life-saving cord blood, it is literally thrown in the trash as "medical waste". And that my friends, is truly a waste!
Good night May....Mommy loves you, Daddy loves you, Tommy Lee loves you......Everybody Loves Meghan!
Meghan: Always in my heart, forever in my soul:
Kisses to my angel ^^Meghan^^
Carol
Tuesday, July 8, 2003 7:31 PM CDT
Gainesville Sucks! From the mouths of babes. I wasn't going to update tonight, however, I wanted to share a little story with all my faithful stalkers (LOL). Last night I was making up the guestroom bed which happens to be right across the hall from Meghan's room (which looks exactly as it did before she left), and in to Meghan's room walks Tommy Lee. I hear him say "I wish Meghan would come back". UGH I think, I'm going to have this discussion tonight...I'm not ready, I'm not up for it tonight, etc, etc. So then he comes into the guestroom and says to me, "where did Meghan die?" I said remember baby, she died at the hospital in Gainesville. Tommy Lee turned around and looked me straight in the face and said "Gainesville Sucks". I tried to hide my smile because yes, Gainesville Sucks....but I knew I had to have the "that's a bad word" talk and not crack a smile. So, in my most motherly voice I told him that although we think "Gainesville Sucks", that is not a nice word and he is not allowed to say it anymore. I've thought about him saying that all day today. He is SO right, Gainesville Sucks and if I never go there ever again I will be happy.
As I said, I was not going to do a journal entry tonight so I made an entry in the guestbook asking everyone to visit Jillian's page: www.caringbridge.org/fl/jillian. Jillian earned her wings today, another beautiful baby who fought so hard but lost the battle. Please visit her site on behalf of Meghan and let her family know you're thinking about them.
I also wanted you all to stop by a wonderful young teenager's site, Christie: www.caringbridge.org/nc/survivor. She visited Meghan's site and left a beautiful, inspirational message and I'd like for you all to visit her site and encourage her as she continues her fight. Make a special visit on July 10th....it's her birthday- please remember to send her the biggest happy birthday you can muster.
So, don't forget to make a donation to Candlelighters on behalf of Meghan's birthday. See last journal entry for the address. I appreciate your support of this organization. Also, things are moving along for the Leukemia/Lymphoma Society's Light the Night Walk in September. Meghan has two teams walking in her honor, in Brevard County, Meghan's Munchkins will be pounding the pavement again this year and in Orlando, "Everbody Loves Meghan" will be walking in support of our Angel.
I've been remiss in past journal entries, and I don't mean to be. Please continue to donate blood, and if possible, platelets to your local blood banks and don't forget, register to become a bone marrow donor and sign up to donate your baby's cord blood. These are all ways you can help and families like mine truly appreciate it.
So, Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You.......Everybody Loves Meghan!
Meghan: Always in my heart, forever in my soul,
Carol
Thursday, July 3, 2003 6:58 PM CDT
Hello Stalkers (or however many are left that I didn’t offend)......Wow, what a difference a day or two makes. I’ve gone back and reread my last journal entry many times and my selfishness and blatant guilt-trip is even hard for me to stand. As I told my sister Laurie today, it’s very difficult to comprehend that everyone in the universe doesn’t feel our (my) pain. I know that each and every one of you who knew personally, or knew of and loved Meghan miss her, but sometimes that simply is not enough for me. In that entry (you probably didn’t have to read between too many lines.......I wanted everyone to be as miserable as me). Boy even seeing that in print is really nasty. What you read July 1st was my anger showing and it was not pretty. There is no way possible that your pain over losing Meghan could even come close to the pain experienced by me and the rest of Meghan’s family. This of course, is the rational Carol speaking now.....what you saw July 1st was an angry, desperate mother trying to understand why life is so unfair and why everyone else in this world can go on with their lives and ours are stuck in this never-ending sea of misery. And then I think rationally again, and know that each one of you has probably at one time or another lost someone in your life. Maybe not to death, or maybe so.....but lost them nonetheless. So, for this I am sorry. Sorry that in my own grief I placed blame on those who are just being human, and just living their lives as they should be. We know you care about us, and Meghan, and we also know you have lives and you can’t possibly think about Meghan 24 hours a day, seven days a week like her family does. With this said, I hope someday we will be able to go an hour without the constant gut-wrenching knowledge that Meghan is no longer here and our lives are forever changed. I’m working very hard to channel my anger into something better, and once we are a little farther down the road, I’ll let you all in on our plans. For now, bear with us (especially me) because I truly do not mean to offend, nor do I mean for you to feel sorry for me, I just want you to know that your words of kindness are not only comforting, they are quite often necessary. I know alot of you say..... “I don’t know what to say”.....you know what... just tell me you think about Meghan even if it’s just for a split second, or because of Meghan you changed a habit, or you made a difference in a child’s life. I don’t care that you think of me.....I don’t want Meghan forgotten by anyone. That’s my mission, my goal, my life- to make sure she is NEVER forgotten. That’s all and it’s that simple. I know you all check her website because I know I don’t look at her website THAT many times a day (maybe a couple hundred......sorry work...just kidding on that) and for this I am thankful.
So, I’ll try to be a little more positive (but bear with me....it’s very hard sometimes to put a smile on and write a cheerful upbeat journal entry). I think back to last Fourth of July and can see Meghan so clearly watching the fireworks. Like all kids, she loved the booms and the bangs and the bright lights. I know she now has the “best seat in the house” for this year's shows and she’ll be oohhhhing and ahhing with the rest of us.
And as I requested on my last entry, for Meghan’s birthday this month, I ask that anyone who can please send a donation in her name to Candlelighters of Brevard County, PO Box 1353, Melbourne, FL 32902-1353. I don't care if it's five dollars, or a hundred dollars, just do it for Meghan and all the children who are still battling this disease and whose families need financial help that Candlelighters so graciously provides. Please make sure you put on the check that it is in memory of Meghan Mack‘s birthday. They keep me up to date with donations made in her name (only by names of those donating, not the monetary information) and it makes me feel good that Meghan is making a difference for an organization that does so much for this community.
Whew, that’s off my chest....thanks everyone for bearing with me and lending support when truly needed.
Good Night May, Mommy Loves You, Daddy Loves You, Tommy Lee Loves You......Everybody Loves Meghan!
Meghan: Always in my heart, forever in my soul
Love,
Carol
Tuesday, July 1, 2003 7:53 PM CDT
Hi Everyone, I guess I mean anyone who even reads these things anymore. I've been thinking that this site is such a clear example of how life goes on and how friends and family get pushed to the back burner. When Meghan was going through her transplant, there were guestbook entries several times a day, sometimes from the same people, sometimes from complete strangers. And then as the days go by, then the weeks, and then the months, people go back to their daily routine....hurry, hurry, hurry, another meeting, another appointment, another soccer game, another dinner to cook, another bath to give...and then there are those of us who haven't progressed as far. Everyday is another struggle with our grief. Another day to wonder what we could have done differently, what if, what if, what if. I guess I'm feeling sorry for myself because this month Meghan would have celebrated her third birthday. I know we shouldn't "wish" our lives away, but if I could just skip July altogether, I'd be a much happier person. What am I supposed to do on July 23rd? No birthday cake to buy, no presents, no singing the infamous rendition of Happy Birthday that would make Meghan fall over laughing. Instead, I'll be at a gravesite putting flowers on the grave of one of the most precious people in my life, my daughter. What will you be doing? Taking another day for granted? I hope not. I hope that Meghan has showed how precious every life is and how quick things can go very bad. We never have yesterday again, hug your children as if you might not see them again, call that old friend who you've been meaning to get in touch with, and most of all, don't take life for granted.
So, I had a thought that in Meghan's memory, I would like everyone who knew her or knew about her, to send a donation in her name to Candlelighters of Brevard County, PO Box 1353, Melbourne, FL 32902-1353. I don't care if it's five dollars, or a hundred dollars, just do it for Meghan and all the children who are still battling this disease and whose families need financial help that Candlelighters so graciously provides. I could go on and on about what exactly they do every month for the families of children with cancer, but I think I've made it pretty clear that this is a great organization and the money goes to the families. Please make sure you put on the check that it is in memory of Meghan Mack. They keep me up to date with donations made in her name (only by names of those donating, not the monetary information) and it makes me feel good that Meghan is making a difference for an organization that does so much for this community.
I'll go now with an apology for my ranting above, but I know this month is going to be especially tough for all of us and I want everyone to know that every day counts in the life of a child, and when I come across an idiot or two (who I've mentioned before), it makes me ask the question, why Meghan, why didn't she have a chance, why didn't she survive the transplant, she was so strong going in. That's what they all told us. She had that in her favor. HA! They don’t call it “practicing medicine” for nothing now do they? I think they need to practice quite a bit more....and definitely not on our children. I’m sure there are lots of laboratory rats who are up to the challenge (sorry all you PETA folks....walk in my shoes for an hour)!
Good Night May.....Mommy loves you, Daddy loves you, Tommy Lee loves you.....Everybody Loves Meghan!
Meghan, Always in my heart, forever in my soul,
Love,
Carol
Thursday, June 12, 2003 8:00 PM CDT
Hello Stalkers..... Thought I'd share with you our balloon release that we had for Meghan this past Sunday. Meghan's headstone was placed and it was the first time I saw it "in all it's glory". As for headstones, it truly is beautiful (if there is such a thing). Of course there's a little angel above her name (how appropriate). Anyway, we all got there and there were already some red tulips placed in her vase. None of us knew who placed them there, but apparently some kind family must have come by and placed them. So, we placed our pink and white flowers with a fairy princess whose wings twirl in the wind in her vase and then proceeded to release the balloons. It should come as no surprise that these were the pinkest and whitest balloons in all of Florida. As we were getting ready to release them, Meghan's daddy took out a marker and wrote a special message to "his girl" on the balloon. This prompted everyone to write a special message to Meghan on each balloon. Funny thing is, no one asked what the other wrote. I thought that to be strange, as we are probably the most open, and talkative family, but I too didn't volunteer my message to May, and thought it perfect that no one else volunteered their message either. I know Meghan's Meemaw, Ma Nina and Grandpa were up in Heaven with her as she caught every balloon squealing with delight as they read each and every heartfelt message to her (again and again and again) :) With Meghan, if she liked it, it would be read, watched, played with, or held again and again and again. Nothing got by her. So the balloons went fast and high straight into Meghan's waiting hands. We all were so amazed at how high and fast they went. It truly was as if she was pulling them up to her. I kinda think she was...she had very little patience and was not one to wait for something to come to her.....if she wanted it...she would go get it. And so it was with the balloons. I can hear her giggling as they flew faster and higher and I can also hear her grandmothers telling her to wait....they'll come to her.....
So that's the story of our balloon release. I also wanted to share with you a story a very dear friend of mine wrote to the Leukemia and Lymphoma Society. Her name is Louise and she is our team captain for our annual Light the Night Walk in Orlando. Our team name is appropriate: "Everybody Loves Meghan". Anyway, this is what she wrote:
"Everybody Loves Meghan"
On April 18, 2002, a beautiful almost 21-month-old little girl named
Meghan Marie Mack was diagnosed with bi-phenotypic leukemia. This became
a call to action for the many, many family and friends of this sweet
little baby. From organizing blood and bone marrow drives, to television
coverage, everyone who knew Meghan was eager to do whatever they could
to help.
Last September, we heard about the Light the Night Walk from Meghan's
mom and, of course, were chomping at the bit to get involved. As a team
called "Friends of Meghan," we participated in the Orlando walk, with
Meghan right there with us. Meghan's big brother and hero, Tommy Lee,
was also there. Meghan's lovely and sweet disposition was an inspiration
to all of us as we trekked through Loch Haven Park and the surrounding
area. Meghan got tired after awhile, so her Mommy carried her and then
Uncle Jim took over. Meghan did not stop smiling and laughing the entire
time!
Unfortunately, after a horrendous ten months of treatments, drugs, bone
marrow aspirations, lumbar punctures, surgeries, medicines, vital signs,
weight checks, chemotherapy, nurses, doctors, doctors and more doctors,
on February 7, 2003, Meghan put on her pink fairy princess wings and
went to heaven.
This year Meghan's friends and family will be walking in the Light the
Night Walk again as a team named "Everybody Loves Meghan." Meghan won't
be with us physically this year, but there is no way she would miss
this. For one thing, Tommy Lee will be there! Meghan will definitely be
there in spirit and she lives on in the hearts of every one of us.
The story behind our team name comes from Meghan's mom who would tell
Meghan every night, "Mommy loves you, Daddy loves you, Tommy Lee loves
you," to which Meghan would respond, "EVERYBODY LOVES MEGHAN!" Got that
right, sweet girl.
**************************
Is there anyway to top that????? I was so moved and of course cried my eyes out when I read that. Anyway, Louise has been asked by the Leukemia/Lymphoma Society to be at our local news station Channel 6 WKMG to kick-off the annual Light the Night Campaign on June 26th with her story of Meghan. So, for all of you locals, watch Channel 6 to see Meghan’s story there’s sure to be no dry eyes in the house. As for the rest of you, we’ll be hitting each of you up for donations in Meghan’s name for the Leukemia/Lymphoma Society real soon. At this point we have over 30 walkers walking on behalf of Meghan and our hope is to raise $10,000.00. I know it’s a high goal, but I’ve got a special angel helping me.
So, I’ll leave with my usual requests......please register with the National Marrow Donor Program, donate your baby’s cord blood, donate blood, platelets and don’t forget, donate to organizations such as Candlelighters (any amount is a good amount). I was asked if Candlelighters needs toys, clothes, etc. They do in fact have a thrift shop in Melbourne which you can donate anything to (even money). Remember, no good deed goes unnoticed. I’m sure Meghan will notice as will all the children you help (even if unknowingly) by your contributions of money, blood, marrow, cord blood and time. The time you take just reading our journal entries is noticed.....and I thank you for still caring about us enough to take the time to check on us.
With this said.....
Good Night May.....Mommy loves you, Daddy loves you, Tommy Lee loves you......Everybody Loves Meghan! (Got that right sweet baby- sorry Louise, loved the line, had to use it, changed it a bit though- not truly plagarizing)!
Meghan: Always in my heart, forever in my soul
Love, Carol
Sunday, June 1, 2003 6:25 PM CDT
Hello to all you stalkers out there :) We recently went to Sea World with the Brevard County Candlelighters group. We had such a very good time. After the day at the park, I was asked by Candlelighters to write a story for their newsletter about what the day meant for me. I'm posting it below so you all can see what a great organization they are and how near and dear they are to my heart. I don't know if she'll publish it in the newsletter (as usual, I'm pretty wordy).....but, I wrote it, I meant it, and I'll share it.....
It started out as any other day except today we were going to Sea World with Candlelighters! Rush, rush, rush, late as usual! We finally made it and started the mad rush around the park. Too many shows to see, too many seals to feed and too many dolphins to jump as high as they possibly can. I recognized some Candlelighter faces, knew some others, and yet, I knew there was something missing from this day that should not have been. You see, my 2 ½ year old daughter Meghan passed away this past February and she was not there as she should be watching the “whalefishies” jump. Her favorite was Shamu. She would sit mesmerized watching those whales. I would sit mesmerized watching her. I wondered as I walked around and saw other Candlelighter families if they knew that if horror of all horrors, their journey with childhood cancer should turn out the way ours did, that Candlelighters would still be there for them. I wondered if they knew that Carrie would call just to check on them, or if they knew they would still be included in these family days that Candlelighters works so hard to coordinate for us. I wondered if those who donate to Candlelighters regularly truly know how much their contributions and generosity are appreciated. I wondered if those who have never even heard about Candlelighters could possibly understand the depth of their commitment to the families they work so hard to help. And of course, I wondered why. Why do children have to get cancer? Why do some children make it and others don’t? And I knew those were questions that would remain unanswered…..at least for now. So, jump “whalefishies” jump.….jump for Meghan, jump for all children with cancer and especially, jump for Candlelighters because without these group outings and get togethers, we would all be just like fish swimming in circles..... circles of clinic visits, scheduled hospitalizations, unscheduled hospitalizations, and the neverending worry......worry about today, tomorrow and forever that outings such as this take away.....if only for a day.
So, with this said, I ask that you all look up into the night sky each and every night and look for the brightest star....you all know the one....our Meghan Star.... and wish.....wish for no more cancer, no more tears, and no more relapses and especially, no more children dying from this horrible disease. And, please register with the National Marrow Donor Registry, donate your baby's cord blood and donate blood, donate platelets, donate money, time or anything else you can donate to organizations such as Candlelighters (they're a national organization- there's probably one in your area). We need to help come up with a 100% cure rate for Leukemia and other childhood cancers.
Good Night May.....Mommy loves you, Daddy loves you, Tommy Lee loves you......Everbody Loves Meghan!!!!!
Always in my heart, forever in my soul
Carol (Meghan's Mom)
Thursday, May 15, 2003 7:33 PM CDT
Hello all you Stalkers...thought I'd forgot about updating huh? Not a chance...just had to get thru Mother's Day without being "Baker Acted". So, with that said, Mother's Day was as awful as every other day. I guess you think it will be even worse because it's "Mother's Day" but it actually was no worse than any other day because quite frankly, I'm a mother every day and nothing changes about that. Meghan is forever gone and nothing changes about that either. I have not had the nerve to watch any of our videotapes of her dancing, but I suppose that will come one day....who knows....maybe sooner than later, but it will come I know.
As I've written many times, there are things that happen since Meghan got sick or even since she passed away that have made me almost come unglued. One such thing happened earlier this week at work. A "mother" and I use the term ever so loosely, actually told co-workers that her "Mother's Day Wish" was to spend time alone away from her two year old child. Now, I know I am EXTREMELY (underline, bold print, etc) sensitive about this subject (and thankfully I was nowhere near when this conversation took place), but, I couldn't fathom the fact that someone "wished" time away from their child....and to top it off....on "Mother's Day". I have instructed all my friends at the office if this "mother" should be in a room and I happen to be in the same room and she starts with her foolishness about "how hard it is to take care of a two year old" to immediately grab me by the shoulders and push me out the door (this is for the safety of everyone who might be in a ten mile radius I assure you)..... If there is anything I could wish for mother's day, it CERTAINLY wouldn't be time away from my children! It's people like that that make parents like me wonder the infamous "why me?...why Meghan? Why is it that parents like me who adore our children and do everything in our power to make them happy and safe lose out to Leukemia and there are other parents out there who "wish to be away from them". That's when you think, life's not fair. But I guess we all know life isn't fair, we saw that firsthand when Meghan who had fought so hard all along succombed to the cancer monster.
So, I guess the lesson to parents I had hoped would come out of all this apparently didn't change some people's views about their children. One thing I always wished you all would take away from my ramblings was that you don't take your children for granted. I guess some things never change. I guess maybe this is just a bunch of rambling and doesn't really mean much to anyone but me. This site started out as a way to let everyone know how Meghan was doing thru her treatments and then transplant, and then it turned into (unfortunately) a place where a heartbroken mom could grieve out loud and hopefully make other parents who have not had such a tragedy understand. Understand that what they say and do every day impacts the life of their child and that every day another child loses their life either by an illness or some other tragedy. And that every day another family has been told their child has been diagnosed with cancer and another family's journey has just begun, and to hopefully remember each day "There but for the Grace of God go I". You never know when you will leave this earth and we are not guaranteed a long healthy life. What we are guaranteed is the choice to live it to the fullest and to be thankful for each and every day we have with our loved ones and hopefully not "wish to be away from them".
So, tonight as you wish upon our Meghan Star, please say a prayer for mother's who "wish to be away from their children" that they may see the light one day and be thankful for their children and the laughter they still can hear. As I've said many, many times, if only....if only I could hear that laughter, that froggy voice, see that smile, smell that baby, hold her once again, I'd be a happy person. So, get off your computer and go kiss your children, they love you and trust you and most importantly, they're there.
Good night May, Mommy loves you, Daddy loves you, Tommy Lee loves you.....Everybody Loves Meghan!!!!!
Meghan: Always on my mind, forever in my heart,
Carol
Wednesday, May 7, 2003 4:07 PM CDT
The 7th.....UGH! 3 months ago today, Meghan put her pink fairy princess wings on and flew into the waiting arms of God. At the end, Meghan's short life was filled with hospitals, doctors, medications, and everything that a baby should NEVER have to endure. Yet, she did it with a smile on her face and a twinkle in her eye. There are countless stories from our hospital friends of Meghan dancing in the halls and singing to the nurses. Meghan would let you know if she didn't want to do something and was as stubborn as any 2 year old, and yet, she captivated everyone who laid their eyes on her. Meghan and I would sit in the cafeteria at Arnold Palmer and all of the employees there knew her by name. We never left the cafeteria without a special treat for Meghan given by one of the cashiers. Every visit to the cafeteria would invite some unknown stranger telling me how beautiful Meghan was and that they would keep her in their prayers. She loved it when they would bring in animals for the kids to come down and see (although she was going no where near them, she loved to be in the room as the animals did their tricks). One day she actually joined in and threw a ball to a golden retriever who was there to see the kids. She got such a kick out of that dog bringing the ball back to its owner. What a silly little girl she was. I can see her so vividly before going to transplant dancing in our family room with Tommy Lee. She kept telling him "you go boy". She was SO cute....and SO sweet. The thought of her being gone from me forever is usually more than I can stand, but.....we go on because "we have to".
As if today wasn't bad enough, I ran into Dr. Giusti, Meghan's favorite doctor from Arnold Palmer at lunch today. I guess he thinks I'm such an idiot because I went up to say hello and he reached out and gave me a hug and I ended up mumbling something about wanting to come and talk to him.....I'm pretty sure he didn't hear me as I was trying so hard to choke back the tears. I was not ready to see him yet. Meghan LOVED him and he LOVED Meghan......I told you, Everybody Loves Meghan :) Anyway, I wish so much that I had something thoughtful to say to him, but I panicked under pressure and basically turned away from him in a hurry without saying goodbye.....what an idiot I am. My only saving grace is that I know he knows it's hard for us parents to see those who worked so hard to save our children's lives after it has all been in vain and our children didn't make it. When Meghan's nurses came to her funeral, I was doing ok until I saw them. I wanted to tell them how much their presence at her service meant to us. You know it must be so hard for them to see "their" kids not make it as well. I know each and every one of them did all they could and helped us make the choices we did with as much information as we could possibly get. When you hear that nurses and doctors are Angels on Earth....they truly are. They do what no one should ever have to do and what no one should ever have to see. They fix things that are broke, and mourn when they can't fix it.
So then we're on to Mother's Day weekend...Tommy Lee's preschool is having a mother's day breakfast.....I should be having TWO breakfasts there, but I will only be having one. My angel will be watching and smiling down at her big brother (who blames her for everything still.....). Last night Tommy Lee was riding Meghan's big wheel and slammed it into the wall. All I heard after this "crash" was "MEGHAN DID IT".....I couldn't help but smile, but thought, how sad....he can't use that excuse anymore.
So, for this evening, remember Meghan and all of the other children who have lost, or are losing this battle with Leukemia. The numbers are staggering and growing each and every day. Remember to make a wish on our Meghan Star that no other family has to hear the news...."your child has cancer". And don't forget to hug your children extra tight tonight......there are those of us who would give anything to be able to give one more hug, see one more smile, hear one more "I love you" from our Angel who was taken too early.
I continue to ask that you encourage everyone you know to register with the National Marrow Donor Program and discuss donating your baby's cord blood if you, or anyone you know is pregnant. And please, don't forget to donate blood, and if possible, platelets. I know of another baby (11 months old) whose family just got the news that he has Leukemia....they are in need of blood products and there is a shortage of B+ blood in south Florida right now. Meghan was B+...... As their nightmare begins... our continues.
Goodnight May, Mommy loves you, Daddy loves you, Tommy Lee loves you......EVERBODY LOVES MEGHAN!!!
Forever in my dreams,
Carol
(Mom to Angel Meghan)
Thursday, May 1, 2003 6:51 PM CDT
HOW ARE YOU? Think about that. Most people ask that question and don't really hear the answer to it. They're usually just being polite and it's the quickest, easiest thing to say as you pass someone you know in the hallway at work, or in the grocery store, or at your children's school. For those of us who have either recently lost our children, or I imagine, for those who lost their children a year, two, three or more years ago, that question is the equivalent to opening up a wound that we are trying SO hard to keep in check. I know personally that when I am asked that question and actually forced to stand there and answer it, usually because the person wasn't just asking to be polite, it takes every ounce of energy I have to control the shaking in my voice and to smile half-heartedly and answer "I'm fine". The truth of the matter is, as I'm sure you all can at least imagine (obviously not to the extent I can, but, in some way, you must have an inkling of an idea how bad it is to lose a child), we're not fine. We are functioning because we have to. We are going to work, school, grocery shopping, family outings, because we HAVE to. We have to continue to breathe (although sometimes I wonder how I manage to do that). We have to continue to laugh and smile, if not for us, for our other children. It is an effort every day and it takes a great deal of energy just to start a new day without in my case, Meghan. The stupidist thing can remind me of her. I was making spaghetti this evening and when I was making the pasta, as usual I took one strand out of the pot and tasted it "must be 'al dente' you know"....anyway, this wave of emotion hit me because Meghan LOVED to taste the spaghetti before it was done. After she and I would sneak some out of the pot while it was cooking, I would make her plate and put one side with only pasta and the other side of the plate would have pasta and spaghetti sauce on it. Tommy Lee has continued this ritual.
As if that wasn't enough this evening, I was munching on some gummy bears and Tommy came in and said those remind me of Meghan. I said I know. She loved those "gummy" anything. We had gummy sharks, gummy worms, gummy bears, anything gummy, Meghan would love it. I guess this is just a glimpse of how my mind works, and how the silliest little thing can make me think about Meghan and how much I miss her. I cannot even go near her room upstairs without knowing I am going to cry. And not just cry, I mean the cry, sobbing kinda cry where you're eyes burn as if you'd just put rubbing alcohol in them. Now, I know you all must be thinking, hmmmmm, how does she know what rubbing alcohol in her eyes feels like.....well.....I don't, but you get what I'm saying, I'm trying to give you all a visual here, give me a break....it's very hard to write these things as I have to face most of you each day and you all know my innermost thoughts.....almost a little weird isn't it? Oh well, I write this stuff cause I know you stalkers out there want to know "HOW WE'RE DOING".....you see?????
So, this is a snapshot of "how we're doing".....pretty awful huh? Just think about it for a second....in the grocery store and the cashier says "how ya doing today"? Do you think she REALLY wants to know? I don't think she has enough time for me to tell her "how I am doing" do you? Just once, I want to say "I'm horrible, my 2 1/2 year old beautiful daughter who is the light of my life died almost 3 months ago"......"how are you"????????? But, I smile faintly and say "I'm ok, thanks". So, next time you ask the question to the person you're passing in the hallway, take the time to listen to their answer. I remember that seen in the movie "What Women Want"....where the young girl who is their office clerk walks about and Mel Gibson can hear her thinking to herself...."no one knows I exist.....no one cares about me......" For those of us who have had such a horrific disease take our loved ones, we sometimes feel the same way.....no one is really listening to "how we feel". Maybe you all really don't want to know because it's too painful for you, and you don't want to bring up any "memories" for us. Realize this, our lives are all about memories. That is all we have. So, when you have a "Meghan Moment", please share it with us....it's all we have too.
I'll go with my usual requests that you register with the National Marrow Donor Registry and if you, or anyone you know is pregnant, please discuss the possibility of donating your baby's cord blood. And don't forget to donate blood and if possible, platelets. These are lifesaving to these children, and it truly makes a difference. Say a special prayer on our Meghan star tonight for all the kids out there who are battling this disease and for those who have recently earned their wings....there are so many who just this year have passed. Their loved ones pain begins and ours continues.....
Goodnight May, Mommy loves you, Daddy loves you, Tommy Lee loves you......Everybody loves Meghan!
Carol
Mom to Angel Meghan
Thursday, April 17, 2003 6:46 PM CDT
NEW PHOTOS AS OF APRIL 23, 2003
THURSDAY: APRIL 17, 2003 JOURNAL ENTRY:
Firsts......first smile, first tooth, first steps, first birthdays, first words, first year (I refuse to use the word anniversary)day of diagnosis.....HUH? That's right, instead of celebrating new firsts, we are instead uncelebrating today..... It was one year ago today when I got a call from daycare on my way home that Meghan was running a temperature. I picked her up and decided to take her to her pediatrician (who thankfully has evening hours...are we lucky or what?). Meghan had had little pink spots on her cheeks which I at first attributed to sleeping on a plastic baby book, then later, in my infinite wisdom, and sound medical reasoning, decided she had Fifth's Disease (or Slapped Cheeks) as it is also known. This virus leaves a "slapped" look on your cheeks and is basically contagious and untreatable and goes away after about 10 days.
So, I sauntered into the doctor's office with my usual "know it all" attitude and announced that Meghan had Fifth's Disease. Her doctor looked at her and said "No, I don't think it's Fifth's Disease. I want you to go tomorrow morning to the hospital and have some lab work done". Hmmm, I was not happy with having to wait until the next day because now I was getting a little bit concerned. As I checked out and started to walk out the door, the doctor came out of another patient's room and said "no, I want you to go tonight and get the lab work done". YIKES! That can NEVER be good. So, I called Tommy and told him what was going on, and said I was going to drop Tommy Lee at home and take Meghan for her blood work. I called my sister Laurie on the way and told her what was going on. She could hear Meghan singing in the background and told me "she's fine- it's nothing".
So, the lab tech Meghan had was very good and she did not cry when he stuck her to draw blood. We put a bandaid on her and I went home. I knew the doctor would be calling with the results because he ordered the labs "stat" (also not a good sign). So, the phone rings and it's Meghan's doctor. He says "I know how you are, and you won't let me off this phone until you know what's going on. I think your daughter has Leukemia". I'm sorry, did he just say we were abducted by aliens and taken to another planet???? Because I'm pretty sure that's what I heard. He went on to say, he didn't believe the results and was going right over to the hospital to look at the slides himself (another not very good sign). So, about an hour goes by (by this time it's almost 11pm) and the phone rings.....Meghan's doctor says "meet me at the ER- we're admitting her tonight and transporting her to Arnold Palmer Hospital tomorrow morning". As panic starts to set in, I go upstairs and take Meghan out of her crib for the last time without tubies, drugs, chemo, bone marrow aspirations, lumbar punctures, and doctors, nurses, doctors and more doctors. This is the last night she will ever sleep soundly after a busy day at daycare with Jazzy. The last time she will ever be "whole" again. For now, it's on to surgeries, medicines, vital signs, weight checks, chemotherapy and all of the other ugly, ugly things that make a Leukemic patient's life miserable. This you see is the day where our perfect life went terribly wrong. This is the day that changed everything. We will never be the same, we will miss Meghan no more today than yesterday, no more tomorrow than today, and no more next year than the next ten years. We will miss her with every ounce of our beings for the rest of our lives. So now unfortunately, our lives are filled with these horrible firsts. Our lives have been shattered with the knowledge that Meghan will not have a first day at school, a first day at the beach, a first boyfriend, a first car, a first dance, a prom, a wedding, nothing. She has nothing, and we have nothing. Yes, we have a beautiful son, and a wonderful marriage, and a wonderful, supportive family....but we don't have our "first" daughter. She was our ray of sun, our shining star, our Meggie May. So, tonight, as you go about your daily routines, and you think, gosh, I wish these kids would quiet down......remember those of us who wish nothing more than to hear the laughter of a child. A child who will never be heard again.
So, I'll leave with my usual requests, please register with the National Marrow Donor Registry, and please, please donate your cord blood. Also, don't forget to donate blood. These are all life-giving donations, and only take a moment of your time. Remember, life is a moment you may wish one day you could bring back.
Good Night May, Mommy loves you, Daddy loves you, Tommy Lee loves you......EVERYBODY loves Meghan!
Carol
(Mom to Angel Meghan)
Wednesday, April 9, 2003 7:27 PM CDT
Hello all you Stalkers! I know you all keep coming to check on Meghan's site to see if I've said anything profound lately.....or, it could just be me checking her site a million times a day to see if any of you have said anything profound :) Either way, I felt the urge to share a Meghan story, so where else to do it except here (I'm sure most people get really bored with me mentioning her name which is all the time), but too bad....I will talk about Meghan until the day I die.
So, on to the story.......When Meghan was at Kindercare, one of her favorite teachers was Ms. Ronnie. Ms. Ronnie is the sit on the floor, sing, march, clap your hands, and stomp your feet kinda teacher and all the kids love her. Anyway, when Meghan went into the hospital, the teachers at Kindercare put together photos of all the kids in Meghan's class and Meghan would look at them all the time. Well, when we went to transplant, I brought those photo albums of Meghan's friends from Kindercare. For the life of me, I couldn't remember some of the children's names (except of course, Jazzy :).....Anyway, Meghan and I would look through the photo album and she would say "who's that" and I would say "I don't know, we'll have to ask Ms. Ronnie". Well, that was all it took. From that point on, if mommy didn't know the answer, Meghan would say "ask Ms. Ronnie". And when I say she said it for everything, I mean everything! I think Meghan thought she was the most intelligent person in the world (not that we don't think so as well.....a little strange.....but intelligent (LOL). Boy, I REALLY hope Meghan saw Ms. Ronnie today because it was Silly Mixed Up Day at Kindercare, and needless to say, Ms. Ronnie was a hit! She may need psychotherapy.....but that's truly another story (just kidding Ms. Ronnie).
On another note, we've been doing alot of planting around the house lately (probably to keep busy), but it's beginning to look really nice. Anyway, I could see Meghan clear as day in the flower bed with me with her little shovel and her daddy's work gloves on helping tend to the little flowers we were planting (mostly on her behalf). Anyway, Meghan loved to get in the dirt and dig (partly because she saw her brother do it, and partly because...who doesn't like to get in the dirt sometimes?). Anyway, Meghan would get in there with her shovel and rake and pull at the weeds as if they too were delicate little flowers....I guess everything is beautiful to a two year old. So, she would work so hard shoveling and raking and chasing her brother around the yard giggling as hard as she could. I tried to get her to wear her hat when she was outside (and sometimes she would), but she loved to be in the sunshine and run after her brother. I hope she can see the flowers we're planting for her now. She'd be so pleased to see all the pretty colors. I guess this wasn't such a great story for you all to read, but I like thinking about her in the sunshine playing.
I was in the playroom the other night and out of the clear blue, Meghan's Winnie the Pooh bear fell off the shelf. No one was near it, no one had touched it (in what seems to be forever)....but, boom, right in front of me...Meghan's Winnie the Pooh. I looked up and said thanks May.....I'm thinking about you too :)
Well, I guess I didn't have as much to say as I thought I did....so, I'll leave with my usual requests to please, please encourage everyone you know to become registered with the National Marrow Donor Program. Also, please don't forget that if you, or someone you know is pregnant, please discuss the possibility of donating your baby's cord blood to the registry as well. Also, don't forget the blood banks. These patients need your blood and if possible, platelets. So, don’t forget to look up into the night sky and look for the brightest, twinkling star and say a prayer....a prayer for our soldiers here and abroad as well as a prayer for all the other families dealing with Leukemia or children with life threatening illnesses.
Goodnight May, Mommy loves you, Daddy loves you, Tommy Lee loves you....."Everyone loves Meghan"!
Carol
Thursday, April 3, 2003 7:13 PM CST
EVEN MORE NEW PHOTOS ADDED!!!!!
Delphinus RA 20h 26m 13.53s D13(degrees) 31'38.11" THAT'S IT.....THAT'S MEGHAN'S STAR'S COORDINATES!!!! For those of you who know anything about the galaxy, Meghan's star is located off the constellation Delphinus. And as most of you know, it will also be the brightest, most sparkly star in the entire galaxy (or universe for that matter). I want to especially thank my brother Scott for getting Meghan's star registered through the International Star Registry. Meghan would be most proud of having a real star named after her!
Every day on my drive to work I pass a little road side tourist alligator place called Jungle Adventure in Christmas, Florida. Meghan and I would stop there almost every time on our way to the clinic for treatment. She loved to see the two big brown bears they have right at the road side in a fenced in area. She would make such a fuss when I would put her back in her car seat to leave. She loved those old bears. I love to look at those bears on my way to and from work every day. It reminds me so much of Meghan.
I was also thinking about when Meghan was at Shands she would sing Twinkle Twinkle Little Star for her nurses (in her froggiest voice :) They were all so amazed at how well she could speak for being so young. She really did have a very good vocabulary. I can hear her sing so clearly in my mind. I hope that never goes away. As for us, we're all doing ok, taking it day by day. One of my favorite parts of the day is picking up Tommy Lee from Kindercare, and having Meghan's best friend Jazzy come up to me and say "where's MY Meghan?" then I'll look up and point and say she's up there in heaven, and Jazzy will look up and blow Meghan a kiss. They were truly best buddies, and I love to watch Jazzy grow....reminds me of Meghan :)
Anyway, I know this is a short update, but not much to say.....except (don't worry people,I haven't forgotten)...please, please, please encourage everyone you know to register with the National Bone Marrow Registry. I've had several people tell me that they have friends who are pregnant and because of hearing about Meghan's story, are donating their baby's cord blood to the registry. You cannot imagine what a sense of pride I have in knowing that even though Meghan didn't make it, someone else can with the help of Meghan. So, please don't forget the cord blood. It is desperately needed, and takes no effort on the part of the mother or the baby to donate. Lastly, please don't forget to donate blood and if possible platelets at your local blood bank. Children, teens and adults with Leukemia or other blood related diseases require inordinate amounts of blood transfusions, and your donation is truly the gift of life. So, with that said, look up in the night sky and say a special prayer on our Meghan's star that this war will end soon and no more lives are lost, as well as our nightly prayer that there is a cure found for this horrible disease and that no other parent has to go through the horror of losing a child to Leukemia.
I want to specially thank all of you who are writing these incredibly beautiful and moving poems on behalf of Meghan. Some of you I know personally......and some I don't. Please know that they are a welcome sight for us and we cherish every word written about our precious angel!!!! Your talents are incredible and we thank you!!
Good night May, Mommy loves you, Daddy loves you, Tommy Lee loves you......"Everybody Loves Meghan"!
Carol
Tuesday, March 25, 2003 7:35 PM CST
UPDATED 3/27/03 WITH NEW PHOTOS
3/25/03 Journal Entry:
Stalkers, Stalkers everywhere!!!! If you're not a true stalker, you might want to bail out of this journal entry now, because there's sure to be much ranting and raving from a mother who is pretty pissed at the world right now. You see, tonight was Tommy Lee's first night of T-ball practice and that in and of itself was both happy and sad. Happy of course, because he loves sports and he was so proud of himself out there and he hit that ball so hard and ran to first base two times! He told me "I made two home bases mom!" Sad because Meghan would have loved to see her big brother play T-ball. When he was in soccer she would always say "Tommy Lee soccer ball!". She thought it was the coolest thing when he would run down the field kicking the soccer ball. Of course, there were several times I had to run after Meghan running after Tommy Lee.....but, he's her big brother, and whatever Tommy Lee did....Meghan did too!
I should have known I was going to have a difficult time when one of the mothers of a child who was on Tommy's soccer team came up and first thing asked "how's the baby". She's gone, she died, she didn't make it through transplant. I'm sorry, was that me who just said that out loud to someone? Good God! When does a parent have to say their baby is gone? If you don't know, I'll tell you....it's when Leukemia snatches them right out of their crib and destroys your life. Even those who make it through treatment and/or transplant are changed forever. We have got to work harder for a cure.....hey "W" how about $75 billion towards cancer research?????
Then, to make matters worse, a woman comes up to me holding this stupid plastic Barbie watch and says "you don't have a daughter do you...cause I found this on the sidewalk". As I controlled my inner self from screaming "Yes! I do have a daughter, but she won't ever be able to wear a crappy plastic Barbie watch because she's no longer here with us", I gave a half-hearted smile and said, no, not here. She obviously had no idea what I meant by that, but I do.
So, after T-ball, Tommy Lee and I went to dinner and as we were walking back to the car, he looked up in the sky and there was Meghan's star twinkling as bright as bright could be and Tommy Lee said "thanks May"....I said "what are you thanking Meghan for?" and he said "she told me I played T-ball real good tonight and that she was proud of me". I told him we're all proud of him, and I'm sure Meghan is proud of him too. He watched that star dance in and out of clouds the whole ride home laughing and giggling saying Meghan was playing hide and seek with him.
Now, for those of you who have hung in here through this ranting and raving, I wanted to give you all something to smile about.....yes, that's right....a Meghan Story!!!!!
Meghan had this silly little toy that was a plastic steering wheel and made sounds like turn signals and the sound of the gas being pressed and making a loud vroom sound, and the funniest of them was this car horn that sounded like an old fashioned horn from the 1920's....you know the ones, errrr-errr errrr-errr (it's probably alot easier for me to hear in my head, cause for one.....I'm not sure what errrr-errr sounds like....and for two, it will forever be engrained in my mind...that silly sound :) Anyway, she always had it in her crib, and when she would wake up in the morning, that was the first thing she would do was hit that silly car horn sound (I guess telling me...I'm awake, get your rear up here and get me :) Tommy and I would always look at each other and laugh because it was soooooo Meghan. She loved that silly toy and now that toy sits in our living room right out where everyone can stop by and hit the horn for Meghan. Daddy does it the most.....he loves the sound of that toy just as much as Meghan did I think :) So, now whenever you hear one of those old car horns, you can think of Meghan up in Heaven giggling with that horse voice of hers!
So, if I haven't lost your attention yet, this will surely do it........please, please, please encourage everyone you know to register with the National Marrow Donor Program. We also encourage you to discuss the possibility of donating your baby's cord blood, if and when you become pregnant. Also, please don't forget to donate blood and if possible, platelets. There are people who need transfusions daily and your donation saves lives. Do it for them, do it for you, and do it for Meghan (that should guilt you into donating some blood huh?)
So, Good Night May, Mommy loves you, Daddy loves you, Tommy Lee loves you.....Everybody loves Meghan!
Carol
Saturday, March 22, 2003 9:17 AM CST
Well, you "stalkers" are all coming out of the woodwork and standing up and being counted aren't ya? Glad to see you're all still interested (or at least bored enough) to read my ramblings :)
Last weekend, Candlelighters took alot of families from Brevard County to Universal Studios. We had a very good time although it was very sad at the same time. Universal Studios has an ET ride (which Meghan never got to go on), and at the beginning of the ride you give the ride person your name, so little Tommy of course told them Tommy, I told them Carol and big Tommy gave them Meghan's name. At the end of the ride (after you help ET get home) there's a mechanical ET and he says goodbye to each person using their name. Of course, when he got to "Bye Meghan", I could barely hold back the tears. We went on that ride several times that day and each time, daddy would give them Meghan's name. I'm sure she was very happy that ET knows her name! They also have a live Barney show that I know she would have loved. Hopefully, she gets to see all the Barney, ET, and Grinch she wants.
Last night, Tommy Lee came up with the idea that we should each share a story about Meghan with each other. He wanted to start first, so he told us the story about when Meghan used to be afraid of Bear (our dog) and would call Bear's name and then run screaming. Then, he came over to me and whispered in my ear and gave me a story to share (even though I've got a million of my own), I chose to use his.....my story was about how much she loved to dance and "shake her booty". Daddy's story was how Meghan would always tell Tommy Lee "hold my hand, hold my hand". She always wanted to hold his hand no matter what they were doing.
Another thing that has been happening is Tommy Lee has a little toy electric guitar that he and Meghan would play all the time making "music" (remember, it's all in the ear of the beholder)....anyway, this guitar sits in the playroom and is rarely touched anymore. A couple of nights ago, Tommy Lee and I were playing Nintendo and the guitar started playing on its own. Tommy Lee turned around, looked at the guitar and said "Meghan...stop it". Now, that guitar plays all by itself at least once a night. She always did like to cause trouble :)
I'm going to be adding new photos to the photo album (as soon as our scanner starts working again....hint, hint!) But I'll let you all know that there's new photos once I put them on the site.
We've lost another Caringbridge baby this week, she was from North Carolina. This should really make us all remember that Leukemia is a deadly disease, and there still isn't a 100% cure for it like there should be. So, don't stop encouraging friends and families (and strangers, I don't care) to register to become bone marrow donors. Also, remember the cord blood. I was talking to a friend of mine who donated her baby's cord blood and she was absolutely amazed at how precise and timed the whole cord blood donation is. It is not simply something that you can save at the last minute. You must discuss this with your doctor prior to delivering (preferably months before) to get the logistics worked out. It doesn't cost you anything to do (unless you save it for yourself- and then you have to make arrangements with a cryo lab), otherwise, if you're simply donating to the registry, the doctors and staff will know what procedures they have to take and they will take care of it for you. There is no risk to you or your baby by donating the cord, so please DO IT!
Also, I was talking to our blood bank this week and they are desperately in need of blood products (as are most blood banks in the country). Anyway, they had been sending out letters to their donors thanking them for donating and they were using Meghan's name as someone their blood products were helping. I called to let them know of her passing (which they knew about) and they were most apologetic that the letters had gone out after her death. I told them we don't mind using her in an effort to get blood donations, but the letter needed to be adjusted somehow (I'm not sure how you would word such a thing), but if Meghan can help someone, I'm all for it. I just don't want one of you getting a letter thanking you for helping children such as Meghan knowing that she is in Heaven and doesn't need any more blood products, tubies, or any other yucky medications any more. She is in her perfect body now, shaking her booty and laughing and playing with no cares at all. So, I think I've gotten that all straightened out.
Lastly, I talked to Candlelighters this past week and they are going to be putting Meghan's picture in their news letter along with the names of all the people who sent in donations in her memory (which there are alot of). Anyway, Candlelighters will be having a family day in April and they are going to be sending me a donation sheet because the families are going to do a little walkathon. What this means to all of you is I'm going to be hitting you up for a small donation to Candlelighters in the next couple of weeks....so be prepared (it's for a GREAT cause).
So, I'll end on a happy note, my brother bought a star in Meghan's name so now there really is a MEGHAN STAR out there. I will be posting the coordinates on this site once I get them so we will all be able to find our Meghan star every night. Don't forget to look up in the sky for the brightest, twinkling star out there and wish on our Meghan star for a cure for this most horrible disease, Leukemia as well as a quick resolution to this war we are in in Iraq. These men and women over there have moms, dads, sisters and brothers, aunts, uncles, etc. over here worried about their every breath (literally). Please take the time each night and thank GOD we are all home safe and warm in our own beds. And don't forget the children of Iraq. They did not ask to be brought into this world, and their fears are just as real as our children's fears. It must be horrific for the children over there to hear the bombs exploding close to your home not knowing if you will get hurt. Don't forget them.....they need our prayers too.
Night May, Mommy loves you, Daddy loves you, Tommy Lee loves you.....Everybody loves Meghan!
Carol
Saturday, March 15, 2003 7:05 PM CST
Just came to add a new journal entry and vent. I took Tommy Lee to the YMCA's pool party today and could not get my mind off of Meghan. I kept thinking, Meghan should be here. She would have loved splashing in the water and chasing her brother in the pool. I saw all of these beautiful babies playing in the sunshine and could not get myself to stop wallowing in my grief. It is so unfair that Meghan is gone. There were so many little baby girls in their new bikini's and all I could think of was Meghan should be in a bikini playing in the sunshine on this beautiful day. They had a DJ there playing music and I could just envision Meghan shaking her booty and laughing and playing and splashing and all the things that little kids growing up in Florida do right now (sorry to all you northerner's who are still up to your elbows in the white stuff :) I tried very hard to keep my chin up but got more and more anxious as I would notice mothers fussing at their little kids after the child had splashed water and gotten her mother's hair wet. I just wanted to run up and get in their face and let them know how much a stupid splash by a toddler can mean to someone who has had their baby ripped from their arms. I wanted so much to say "chill out"...if you only knew what it felt like to not have your baby anymore you would never fuss about something so stupid as wet hair (or clothes) or whatever. Live in the moment, you never know when that moment will be gone.
On a brighter note (you know I try very hard to find one), I'd like to share a funny Meghan story (unless of course you all have fallen asleep at your computer after my rambling above)......anyway, for those of you still here, we have a black labrador retriever named Bear (the kids call him Bobo). Bear weighs about 90 pounds (or more)... (ok people, I know, he's fat)....anyway, Meghan would always stand at the patio screen door and yell for Bear.....I can hear her right now in her froggy voice...."Bear come" she would say in her most demanding voice and with all the command she could muster up. And Bear would come galloping his 90+ body as fast as he could to come see Meghan. Once he got close to the patio, Meghan's eyes would get real big (as if they aren't big enough) and she would scream bloody murder and run into the house. The funny thing was, she was scared of Bear (even though he would never hurt her) but she would call him dozens of times a day repeating the above ritual many, many times (poor Bear....he would always come running for her). He never caught on that she would run away from him screaming (LOL). I miss her froggy voice and I know Bear misses her too :(
So, I'll end with my usual request to encourage everyone you know to become registered with the National Marrow
Donor Program and remember, if you, or anyone you know is pregnant, please discuss donating the cord blood with your doctor. He or she will know exactly what they need to do and what you need to do to have this done. Also, remember to donate blood (and/or platelets). It is a gift of life and there is such a need for blood. Remember to look for the brightest star in the night (Meghan's star) as we like to call it.....and wish for a cure for Leukemia. Also, the Leukemia and Lymphoma Society's Light the Night Walk is always in September. This is a nationwide event. Contact your local chapter and get involved. Take a walk in Meghan's memory and help save a life and find a cure.
Goodnight May, Mommy loves you, Daddy loves you, Tommy Lee loves you...."Everybody loves Meghan"!!!!!!!
See you in my dreams May! (Love Mommy)
Carol
Wednesday, March 12, 2003 5:06 PM CST
I thought I'd share another story with you all about exactly how close Tommy Lee and Meghan still are. Apparently last week or so, Kindercare (where Tommy Lee goes to daycare and where Meghan used to go) had a fire drill. Well, for a five year old, apparently it's a big deal and perhaps a little scary. Anyway, I had taken Tommy Lee to bed and he starting crying and telling me he didn't want to sleep upstairs in his room anymore. I asked him why and he said "what if there's a fire?". I said, well, you'll hear the fire alarm and mommy and daddy will come get you and take you out of the house and you'll be safe. He was pretty upset and kept asking what if's....what if I don't hear the alarm.....what if we can't get him.....what if there's smoke.....and on and on and on. I finally told him that nothing could possibly happen to him because he has an angel looking after him every day and night. He paused for just a moment, and then smiled with those dimples and said, you're right mom, Meghan will take her magic wand and put the fire out and I'll be ok. I told him he was exactly right and he rolled over and went to sleep just like that. It was the sweetest thing.
I also want to share one other thing with (whoever reads these things.....you know who you are "stalker" :), another thing he does ALOT is he'll stop for a minute and say "ok Meghan, I'll be good", or "Meghan told me to be good". Last night he said "Meghan just told me that she'll hit me with her wand if I say bad words" (LOL). I told him she wouldn't hit him, but he's not supposed to say bad words. He's convinced this magic wand is going to come out of the sky and smack him upside the head. I guess I should let that "vision" continue as long as I can. That way I'm almost assured there will be no bad words out of his mouth :)
So lastly, Meghan has unfortunately had alot of other caringbridge children join her in Heaven this year. We need to do something about this people.....hey, I have an idea, why don't we use the cazillions of dollars we are about to spend on going to war (and then cleaning up and rebuilding Iraq) to cure Leukemia? Now there's an idea......How about a Cure Not War?????? Sorry to get political, but there's no excuse for the children dying out here. We have the brightest minds in the world, but we can't cure cancer? We'll also see how many children die (remember, our soldiers are someone's children too). So, with this in mind, make a wish on Meghan's Star and say a prayer for the thousands of soldiers going off to war and let's pray they all come home safely. Their families need them.
And please, don't forget to register with the National Marrow Donor Program and if you're pregnant, discuss with your doctor the possibility of donating your baby's umbilical cord to the registry as well. This is where cord blood comes from for transplants, and it is saving many, many lives. Just because it didn't work for us, remember it still works for others and there are many, many out there who need transplants. And, please don't forget to donate blood (and/or) platelets. Your community needs it.
So, goodnight and don't forget to look up in the sky each night for Meghan's star and say a little prayer that we get some peace in this world and a cure for this most horrible, devastating disease.
Night May, Mommy loves you, Daddy loves you, Tommy Lee loves you, "Everybody Loves Meghan"!!!!!
See you in my dreams,
Mommy
(PS: For those of you wondering why we call her May, her name is Meghan Marie and we called her Meggie May and I always sang the Rod Stewart song Maggie May to her.) Just a little trivia for those of you keeping score :)
Thursday, March 6, 2003 7:16 PM CST
You know how you always remember "where you were" during certain events in your life? For example, I bet 99 people out of 100 could tell you exactly where they were when they heard that President Kennedy was shot, or that the Space Shuttle Challenger, and now, Columbia were lost. It's these times that are forever etched in our beings. That is how I feel tonight thinking about one month ago. On the eve of March 6, 2003 going into Friday, March 7,2003, exactly one month to the exact day Meghan earned her wings, I can tell you exactly minute by minute, what I was doing during Meghan's last night here with us.
It was pretty uneventful (as uneventful as any night in PICU). I had roughed up the doctors as much as I possibly could trying to get help for Meghan's then failing liver even going so far as to call doctors at Duke University and getting consultations from them. As usual, I was doing research trying to figure out what could possibly be going on in Meghan's lungs and liver that weren't responding to anything they were doing, and why on earth she had 98.5% male donor cells when she had not engrafted and there were no white cells being produced, and why at such a late stage in the game had we given her back her own cells instead of doing it sooner.
As I did every night, I said a prayer as I gave Meghan a kiss goodnight telling her as I did each and every night, Mommy loves you, Daddy loves you, Tommy Lee loves you.....everybody loves Meghan (which is something she used to say after I finished telling her that :) I kissed her face and cheeks, smelled her beautiful skin and went to bed. I was awakened around 4:00 a.m. by the sound of doctors and nurses in the room. I could hear them talking about her blood pressure and not being able to keep it up. After a few minutes, the doctor came over to me and showed me some of Meghan's latest lab results. He told me that they were having an extremely difficult time keeping her blood pressure up and her oxygen saturations were not doing well and they were particularly concerned about her CO2 levels. I was told they could make some of those numbers look better for "awhile", but that it was strictly the medications at this point keeping her alive. I was told she was getting the amount of epinephrine that they give to patients when they are trying to resuscitate them during a code. It was at this point I called Tommy at home and told him that I thought it was time to let Meghan go to heaven. Meghan had had enough and her little body was simply shutting down. He agreed and I put the phone to her ear and let her Daddy talk to her one last time.
I asked that a priest be called to come in and he did and he baptized her right there in PICU. I then asked the doctors to go ahead and discontinue her heart medications which at that point was the only thing keeping her "alive". There had to be two physicians to sign off on the turning off the life support order so we had to wait for the hematology/oncology doctor to arrive. I sang the Barney song to her over and over and whispered as many times as I possibly could that I loved her and that it was "ok" to go to heaven and that we would be seeing her soon. I kept Tommy on the phone and at 7:53 a.m. Friday, February 7, 2003, Meghan put her pink fairy princess wings on for the last time and went to be with her two grandmothers, Meemaw and Ma Nina, her Grandpa, and her "surrogate" grandfather Gordon (this all took less than 30 minutes). This is how I know we did the right thing. Meghan went to heaven peacefully, quietly and quickly. Something most of us could only wish for. Once she got to heaven's gate, we're not sure who knocked who down trying to be the first one to pick her up and hold her, but we know they each have gotten their turn to love on her and hold her and play with her. We find so much comfort in knowing that Meghan is being well cared for in heaven.
My friend Gina's husband Dave passed away from Leukemia on February 13, 2003 in England, the day Meghan was buried. Gina told me she did not tell Dave Meghan had passed away as he would have been too distraught. Imagine his surprise when he got to heaven and Meghan was the first smiling face he saw! I know that Dave is having a ball being surrogate daddy to Meghan and between the two of them, they are making a run for the Cheetos and any other cheesy snack food they can get their hands on. They are also dancing up a storm (although Dave reportedly has two left feet). Hopefully Meghan is showing him all her moves as he sings BeeGee songs to her :)
So, as I say goodnight to each of you this evening, I want you all to say a special prayer for our Meghan. A prayer that no other family has to go thru the heartache of losing a child, teen or adult family member to Leukemia. And, you all know, this wouldn't be a Carol update without my usual boring rhetoric.....so here goes......please, please, please contact your local blood bank and register to become a bone marrow donor. Also, if you are pregnant, or know someone who is, have them discuss with their doctor the possibility of donating the baby's cord blood to the National Marrow Registry. Your doctor will know exactly what to do....just ask!!!!! We also continue to ask that you continue to donate blood and if possible, platelets (I almost typed "in Meghan's name"- force of habit I guess). The blood banks are in desperate need of blood and there are so many children, teens and adults with blood related disorders and cancers that continue to need many, many transfusions. If you don't believe me, take a walk up to your local hospital and ask to speak with one of the hematology/oncology nurses.....they'll tell you how it is. If you ever do plan on dropping in on a hem/onc ward, don't be surprised or hurt when they tell you you cannot simply tour the ward. These patients are at the highest risk of any infection, and you may not know you have something brewing, but the littlest thing can be life threatening to the patient. So, my point to all this is, take my word for it, donate blood and platelets and you will truly help someone in need.
Lastly, tomorrow morning at 7:53 a.m. look up in the sky (our Meghan star just might be twinkling even in the morning time), and tell Meghan hello and that you'll always remember her. WE WILL! Night May, sweet dreams and happy thoughts. Mommy, Daddy and Tommy Lee love you (and everybody loves Meghan :)
Prayers for a Not-so-tearful day tomorrow,
Carol
Thursday, February 27, 2003 8:06 PM CST
It's a beautiful day in the neighborhood.....At least in Heaven's neighborhood that is. As you probably know, Mr. Rogers joined all the angels in Heaven this morning. I'm sure Meghan was one of the first in line to greet him with her beautiful smile and twinkling eyes. I'm sure she's singing his song with him this minute :)
I was doing laundry (yes, people....Tommy isn't the ONLY one who does laundry in our house:)...anyway, it reminded me of a Meghan story I'd like to share with you:
I was taking the two laundry baskets out of our room (for the story, I must provide you with a visual). These two baskets are the size of indoor garbage bins and were just a little shorter than Meghan's height. Anyway, Meghan and I would always make a train with these baskets. Once we would get to the tile floor, she would get in front of the two baskets holding on to the first basket (the engineer), and I would be the caboose (easy people).....anyway, we would chug-a-chug our choo-choo train thru the house to the laundry room. It was always great fun and sure to elicit many giggles. We would make loud choo-choo train noises and go as fast as we could (without falling down). So, I was doing the laundry the other day and out of habit, put the baskets down on the tile and started to push them across the floor to the laundry room and this incredible wave of emotions swept over me as I could hear Meghan giggling with glee at my poor attempt at an engineless choo-choo train. You see, she was always the lead, the engine, the one that would make us go, go go! And so, I had to stop and pick up the baskets because without my engine, this train couldn't go anywhere.
I also wanted to share another story with you. The one where Meghan always thought she was getting the upper hand with her Aunt Laurie. You see, Meghan would always dance her way into Aunt Laurie's kitchen and Aunt Laurie never failed to put a cookie into each of Meghan's outstretched hands. Then, she would turn with that sparkle in her eye when she got TWO cookies, as if she pulled the wool over Aunt Laurie's eyes and walk out of the room smiling. What Meghan never got to learn was that Aunt Laurie would have put TEN cookies in each hand if MEGHAN had wanted them :)
So, I'll go for now knowing that Mr. Rogers is singing my Meghan to bed each night and telling her stories each day. I also ask that you continue to encourage people to register with the National Marrow Donor Program. Don't forget to encourage pregnant women to donate their cord blood as well. And please, get out there and donate blood and if possible, platelets. The need for blood products is unbelievable, and you will truly be helping someone very much in need. So, look for the brightest star tonight and say a prayer on our Meghan star that there be a cure found for this disease and that no other child, teen or adult has to suffer from Leukemia.
PS: The Leukemia and Lymphoma Society's annual "Light the Night" Walk is always in September. This year is no different. Please consider contacting your local branch and walking for this worthy cause. You can get your friends from work and create a team and raise money for a cure. Last year Meghan's Munchkins walked and raised thousands of dollars in her name. Consider walking in her honor. She'll be watching- she loved all the lighted balloons last year and this year, she'll have a special vantage point from Heaven!
Fairy Princess Forever!
Carol
Monday, February 24, 2003 9:19 AM CST
MEGHAN: Greek for PEARL. How perfect is that? I was looking up the meaning of names and of course looked up Meghan's name and was pleasantly surprised by this description. Meghan will always be our "pearl". So perfect, so rare, so beautiful.
I was not going to continue Meghan's journal because I always felt that what I wrote in my journal entries was Meghan's Journey, not mine. Well, I think I was right in a sense, but not completely. Meghan's journey was all of our journey. Her Daddy's, her brother's, mine and yours. You all came faithfully to read about this precious little girl, whom alot of you never met except by way of this journal, and who was fighting a horrible disease with grace, dignity and the strength shown by few adults. So, this morning, I felt compelled to share with you some things about Meghan. My journal entries to date had always dealt with medical terms, blood counts, waiting, hoping, and hoping some more. So, I'd like to try and share tidbits with you about Meghan. Not the Meghan you all met with Leukemia, but the Meghan who was born so healthy and happy on July 23, 2000 to a mommy, daddy and big brother all anxiously awaiting her arrival.
To begin with, with both of our kids, we never wanted to know the sex of the baby prior to his/her birth. The excitement we felt when first we were blessed with a boy, Tommy Lee Mack, III on October 21, 1997 was almost more than any parent could ask for. Skip to almost 3 years later, when on July 23, 2000, we were blessed with a beautiful baby girl. Both of my sisters were in the delivery room along with Tommy. I can so vividly recall my sister Laurie asking with such excitement....."what is it????". Apparently the nurses and doctor didn't know that we did not know the sex of the baby. "It's a girl" I heard. I was so happy. I now had a beautiful, sweet, charming little boy and now, was blessed with a cherub of a baby girl.
Meghan came home from the hospital and immediately won the affections of her big brother. He doted on her and always helped with diaper changes, feedings, and caring for his little "Meggie". These times are so etched in my heart and mind. Meghan's routine was pretty normal, sleeping, eating, diaper changes......
Meghan was a smiler. She was happy and playful and was very astute at getting her brother to cater to her, which he did gleefully. She loved being the baby, and he, in turn, loved being the big brother. Meghan's first Halloween she was dressed as a bumble bee. She did NOT like the costume and cried until we took it off. Luckily for us, we did get to snap a few pictures (mostly with her screaming bloody murder:) Meghan was about 5 months old her very first Christmas, and like most babies, enjoyed the boxes and paper wrappings far better than the toys themselves.
Meghan began walking around 11 months. This of course, is where the trouble begins :) Now, she can get to her brother's toys and take them away from him. This usually doesn't bode well with a 3 1/2 year old, however, Tommy Lee took it all in stride and sometimes even let Meghan have the toy without a screamfest (although not often).
This is about the time they became truly inseperable. Peas and Carrots as I liked to call them. Whatever Tommy Lee did, Meghan wanted to do too. So, this is a mere snapshot in a life cut short at 2 1/2 years. I only got to about her first birthday, and will try to update off and on with additional stories about her little life.
As for the rest of us, there are no words to describe our feeling of loss. Everywhere we go, everything we do, we will always be missing a very integral part of our family, our little Meghan. I would never have imagined me hating to walk into a store, but now there is not one store I can go into without thinking, boy, Meghan would love that dress, those shoes, that hat, that purse, that toy and on and on and on and on. I try very hard now to skip those aisles that are especially painful and try to get in and out as quickly as possible. I guess on a good note, the fact that I find it so difficult to go into a store, should somehow help my bank account :) Remember, gotta find a bright spot every day don't we?
So, I'll close for today with my continued requests that if you, or anyone you know is pregnant, to please discuss the possibility of donating your baby's cord blood to the National Marrow Donor Program. Also, please encourage everyone you meet to become registered bone marrow donors as well. It's as simple as donating blood and letting the blood bank know that you want to become registered. These transplants CAN save children, teens and adults who are battling life threatening blood cancers and disorders. We must not forget about them. Please also continue to donate blood in your local community. There really is a shortage of blood and leukemia patients, as well as many other types of diseases require multiple blood and platelet transfusions regularly. Also, please take a minute to look up into the sky each night and look for our Meghan star and make a wish. A wish that no other child, teen or adult be ravaged by this disease and that we never have to lose another precious baby, teen or adult to Leukemia.
Carol
Monday, February 10, 2003 8:21 PM CST
As you all know, Meghan's journey ended Friday, February 7, 2003 at 7:53 a.m. when she earned her wings and flew into the arms of GOD. As parents, the hardest thing to do is prepare for the burial of your child. We have taken great pains in order for Meghan to have the proper end to her journey here on earth and send her to her new beginning as an Angel in Heaven.
Visitation will be held Wednesday, February 12, 2003 from 6:00 pm to 9:00 pm at Baldwin Fairchild Funeral Home, 994 East Altamonte Drive, Altamonte Springs, Florida 32701, (407) 831-2031.
Church services will be held Thursday, February 13, 2003 at 11:00 a.m. at All Souls Catholic Church, 902 Oak Street, Sanford, Florida 32773, (407) 322-3795.
Should you wish to send flowers, please feel free to do so. If you would prefer instead to make a contribution in Meghan's name to a charity, we would respectfully ask that you consider Candlelighters of Brevard, Inc., PO Box 1353, Melbourne, Florida 32902-1353, (321) 728-5600. This is an organization which helps local families with children with cancer. This organization has been incredibly helpful to our family and we treasure the friends we have made through them. Each Candlelighters chapter provides for its own county and all monies donated to them stay in our local community.
With this said, I will close for tonight, with our most gracious thank you's to everyone who has been here for us through our journey. You are all special to us in ways we can never repay and there are not enough thank you's possible.
I will also continue to ask that you continue to encourage everyone you come across to become registered with the National Marrow Donor Program. And please don't stop donating blood, there are so many other children, teens and adults who need blood products on a daily basis. Thank you all!
Directions to Baldwin Fairchild Funeral Home (407) 831-2031 from Brevard County: Highway 50 west to Orlando, turn right (north) on Highway 436 toward Altamonte Springs. Baldwin Fairchild is on the left hand side of Highway 436 at the corner of Highway 427 (before Altamonte Mall).
Directions to All Souls Catholic Church (407)322-3795 from Brevard County: Highway 46 west to Sanford. Turn right onto Highway 17-92. Travel to 9th Street and turn right. Church is approximately 2 1/2 blocks down.
Alternate Route from Brevard County: Highway 50 west to State Road 408 (East/West Expressway) west to Highway 417. Travel north on Highway 417 to Sanford exit, Highway 17-92. Turn right onto 17-92 and continue to 9th Street and turn right. Church is approximately 2 1/2 blocks down.
Directions to All Souls Catholic Church (407)322-3795 from Orange County: 17-92 towards Sanford. Turn right onto 9th Street. Church is approximately 2 1/2 blocks down.
Good Night and Prayers for a Healthier, Energized Tomorrow,
Carol, Tommy, Tommy Lee and GOD's Newest Angel, Meghan Marie
Friday, February 7, 2003 11:29 AM CST
It is with grieving hearts that we announce that Meghan's Journey ended this morning at 7:53 am (Eastern Time) when she took her pretty pink fairy princess wings and flew into GOD's arms. Her battle was long and she fought hard. She is deeply loved and is sorely missed and the world today has lost an inspirational and joyful child. Just know that GOD got a perfect little angel this morning.
I will provide service information as soon as that becomes available. Thank you all for your prayers, and please continue to encourage people to register with the National Marrow Donor Program.
Love, Carol
Thursday, February 6, 2003 4:48 PM CST
Hi Everyone. I updated Meghan's website yesterday, however, Caringbridge had a problem with its server and most information including all guestbook entries from Wednesday were lost. Can't complain too much, they are providing this service free of charge to families of those battling life threatening illnesses. For our update, Meghan continues her battle here in PICU. We made a decision yesterday to begin high-dose steroids with the thought being maybe her lung problem is not an "infection" at all, but perhaps radiation pneumonitis (which essentially is radiation burn). She has not responded at all to all of the antibiotics and antifungals she is on, so this is basically, a last ditch effort to improve her lungs. The upside of starting the high-dose steroids is that we should see an improvement in her lungs within five days or so if in fact this is radiation related. The downside of this is, that if it is still a fungal, bacterial or viral infection, the high-dose steroids will basically take the infection and spread it all over like wildfire.
She was started on the steroids at 4pm yesterday afternoon and had her second dose at 4am. This will continue for five days. The chest film this morning was read by the radiologist as "slight improvement in aeration in the right lung". So, the good news is we had some improvement hopefully related to the steroids. Her GI bleeding has picked up today with many large bloody stools. She continues to have blood coming from her NG tube. She is receiving platelets right now and will be getting granulocytes shortly. Her bilirubin went down slightly today, so, another positive.
On the other hand, Meghan's stool has now tested positive for the Adenovirus. As you may recall, her nose was the first culture that came back positive. This means the Adenovirus is most probably systemic although the cultures grown from her eyes, ET, and urine have not grown anything to date. I was visited by the Infectious Disease doctor who told me that if we want to start the Cidofovir they are prepared to do that with the understanding that she will most assuredly lose her kidneys. Meghan also had to be started on Epinephrine and a vasopressor today in addition to the Norepi for low blood pressure. She is not able to keep her blood pressure in a good range without these medications. All of these things of course do not bode well for her, but we are keeping the faith in hopes that Meghan's white cells will kick in soon and start to help with some of the things that are going on with her.
So, for my bright spot today I am choosing the chest film and the fact that there was some "slight improvement". I am hanging on the hope that Meghan's cells will engraft soon and start kicking some butt!
So, it's time for my usual requests that you continue to encourage everyone you come across to register with the National Marrow Donor Program and that if you, or anyone you know is pregnant, to please discuss the possibility of donating your baby's cord blood to the registry as well. And as always, please say a prayer for Meghan tonight and every night, and get your kids out under the stars wishing for our Meghan Miracle!
Good Night and Prayers for a Healthier, Energized Tomorrow,
Carol
Tueday, February 4, 2003 8:04 PM CST
Hi Everyone. Meghan continues her battle in the PICU and is still hanging tough. Nothing much has changed with her ventilator settings. They're basically on the highest settings there are. In regard to her blood pressure, she's still on the Norepi and her blood pressure is remaining stable. Her bilirubin was elevated again today. I won't bore you with the numbers, but they almost doubled. I'm thinking this dramatic change may be due to the Norepi she is on for her blood pressure as I'm pretty sure I read something about epinephrine increasing bilirubin levels. Tomorrow Dr. Mogul comes back to town and we'll be able to sit down and go over everything in detail. Meghan had a slight seizure last night (which would have gone undetected as her seizures are almost invisible). I happened to be holding her hand when it happened and that's how I knew she was seizing. I mainly could feel the rhythmic throbbing and could see the slight tick of her thumb. They had just given her Ativan, so this one was over within three minutes. By the way, they have now started her on an Ativan drip (I have to check if that has any reflection on her bilirubin levels- just another thought). Meghan's GI bleed has started back up and they have stopped her feedings and have resorted to giving her some of her medications thru her feeding tube rather than her NG tube because her stomach is so fragile that when they have to clamp off the suctioning of her NG to give her medications, she ends up vomiting blood. We run the risk of aspiration if this were to continue. The problem with giving her her medications thru her feeding tube is that some of the medications are specifically for her stomach and they are now being bypassed and sent to her intestines by the feeding tube. Because of her throwing up the last couple of nights, she did not get the full effect of her medications so they stopped all NG medications for a dose or two. This included her seizure medications. So, I'm thinking that this is the reason she had a seizure. A dose or two of her anti-seizure medications were missed.
The doctors at Shands did agree to talk with Duke doctors and were told basically that the medication that could possibly work for Meghan's liver is one that is in a study and because of Meghan's condition, she is not a candidate. So, again, it's watch and wait.
I got a pleasant surprise today. Tommy and Tommy Lee came up for a visit. I think daddy got the best surprise because Meghan was pretty alert and daddy was playing with her and you could see her mouth turn up and her eyes kind of sparkle with laughter. It was so very obvious that she was enjoying it. When we left for dinner, I turned on ET for her to listen to. Meghan's late afternoon nurse is so wonderful. Every day Meghan gets the most incredible bath, massage and "lube job" (this nurse always lotions Meghan up with lotion called Sweet Pea) and gets her hair washed (yes I said hair....Meggie has the beginnings of a crew cut :)
So, let's see....bright spot for tonight... (and every night actually) is Meghan's incredible will to live. Her perserverance is overwhelming. For a two and a half year old, she has shown incredible strength and love of life. Meghan has not given up and neither have we. She is a pillar of strength and keeps me going every day with her willpower and desire to live. I have been in the depths of despair and then go over to her bed and look at her beautiful little face and think, if she can keep fighting, so can I. So, watch out doctors, I'm reenergized and on a mission!
Ok, people, this is where most of you drop off the page I know.....but, I feel it's still important to get the word out there.....and what word would that be you ask????? Today it would be b-o-n-e
m-a-r-r-o-w and c-o-r-d b-l-o-o-d donation and registration. Alright class, we've gone over this before (did you read the Cliff Notes or what? Are ya keeping up here?). All you have to do is simply go to the nearest blood bank and tell them you wish to register with the National Marrow Donor Program and then donate a pint of blood and you're in! And, if you're pregnant, even simpler for you all.....tell your doctor you would like to donate your baby's cord blood to the registry. Then, have a safe, painless (and possibly medicated) birth, have your significant other "snip" the cord and away it goes....on to save the life of a child suffering from a blood related cancer or disease. Is this all simple or what? See, the littlest things can make the greatest difference! So for now, remember to say a prayer tonight and every night for Meghan, our beautiful little girl who is fighting with all her might (gotta be the shoes.....her Minnie Mouse shoes lay at the foot of her bed waiting to be put on once again :) And, don't forget to get out under the stars and wish for our Meghan Miracle!
Good Night and Prayers for a Healthier, Energized Tomorrow,
Carol
Sunday, February 2, 2003 9:02 PM CST
Hi Everyone. Still not much to report. Meghan continues to hang tough. She had a wild ride this morning and refused to respond to the Dopamine so it's on to Norepi we go. She has responded well to that and they are weaning her Dopamine level down and I guess eventually she will be off that completely as it no longer seems to do anything for her blood pressure. She had a bloody diaper yesterday as well as some bleeding from her NG tube. We are thinking this may be due to an increase in her feeding and the fact that she was not able to tolerate it. The feedings have stopped and will resume probably tomorrow at a much lower dose. She has not had a bleed in over a week or two, and I thought we were done with that, but perhaps the feeding was too tough on her still fragile intestines. Her liver enzymes looked much better today (although what I call much better, the doctors say "slightly improved"). I don't know, see for yourselves: Yesterday: Total Bili 17.8; Direct Bili 17.1; ALP 567; AST 625; ALT 188. Today: Total Bili 14.8; Direct Bili 12.2; ALP 403; AST 376; ALT 143. So, what do you think? Am I being naive and overly optimistic? I know we have to watch for a constant trend downwards, but I'm trying to find a bright spot each day and after the blood pressure fiasco this morning, I am picking and choosing my bright spots as I see them. So, for today, this is my bright spot....don't rain on my parade folks!
Nothing much more to report. So, I'll go for now, with our usual requests: please continue to encourage everyone you know to become registered with the National Marrow Donor Program and we also ask that if you, or anyone you know is pregnant, please discuss the possibility of donating your baby's cord blood to the registry as well. And don't forget your organ donor card too! And as always, please don't forget to say a prayer for Meghan tonight and every night and get your kids out under the stars wishing for our Meghan Miracle!
Good Night and Prayers for a Healthier, Energized Tomorrow,
Carol
Saturday, February 1, 2003 9:06 PM CST
Hi Everyone. There's not much to report tonight. The Infectious Disease doctor came in this morning to discuss the Adenovirus. As of right now, the only culture that has come back positive for this virus is from Meghan's nose. They took a sample this morning from her ET (ventilator tube) and on preliminary testing, it was negative for Adenovirus. They have also cultured this specimen and will have to wait several days or more to see if it grows Adenovirus by culture. I was told there is very little in the way of antibiotics used to treat this particularly nasty virus, and the one that is predominantly used will almost guaranteed destroy Meghan's kidneys. So, they will not begin treatment of the Adenovirus with this medication unless other cultures taken from her ET, stool and/or urine come back positive. That would indicate that the virus is systemic and would be a whole new can of worms. I was asked point blank, if we have positive cultures in other locations, are you willing to destroy her kidneys to treat it? It will be with a very heavy heart, but yes, I think we will go ahead with the medication. The unfortunate thing is this is no guarantee either. If you are a positive person, you may think along the lines, there are people everyday who live with dialysis. So, the dilemna continues.
On another note, Aunt Laurie and Aunt Terri came to visit Meghan today. She was pretty alert most of the time and opened her eyes when they talked to her. I know she liked hearing someone else's terrible singing voice for a change (sorry Aunt Laurie, but you and I are not American Idol material :)
Meghan continues to be extremely sensitive to any movement or change and let's you know her displeasure by dropping her blood pressure frighteningly low. I know the little rat fink somehow delights in the uneasiness she instills in her nursing staff and mother. Keep the fight Meggie, your spirit amazes us all :)
Tommy Lee woke daddy up this morning with a sick belly. He was taken to the doctor this morning and given a shot of phenergan and went home and slept all day. I spoke to him a short time ago and could tell he was feeling much better. So, no visit from the Tommy's this weekend :(
That's about all the news for today on this front, on the American front, all of us on the space coast lead the rest of America in mourning the loss of the space shuttle Columbia this morning. Our deepest sympathies go out to all of the families of the astronauts as well as all of those who work so hard to keep the American space program the best in the world. God bless each and every one of them.
So, I'll end tonight with my usual requests (you know what they are)........ please, please, please encourage everyone you know to become registered with the National Marrow Donor Program, and we continue to ask that if you, or anyone you know is pregnant, to please discuss with your physician the possibility of donating your baby's cord blood to the registry as well. And, on a side note, don't forget to sign up to be an organ donor too. I also want to thank all of you who continue to donate blood and/or platelets in Meghan's name and ask that if you haven't donated in a while, to please do so. As I've indicated before, she is transfused almost daily. So, remember to say a prayer each night for Meghan and take your children out each night to wish upon a star for a Meghan Miracle (it's good quality time with your children, and gives you a chance to stand outside under the moon looking at the stars and realize just how blessed you are).
Good Night, and Prayers for a Healthier, Energized Tomorrow,
Carol
Friday, January 31, 2003 at 07:40 PM (CST)
Hi Everyone. Nothing much has changed since last update. I have fought all day long today over the medications for her liver to no avail. They are increasing one of her other medications in an attempt to help her liver and they are deciding on whether or not to add glutamine to her hyperalimenation in another attempt to improve some of her liver function tests. I have been told that the medications we have been discussing are unproven and the potential side effects can be deadly. So, after jumping up and down, screaming and accusing some of the physicians here of not being proactive and simply waiting until something goes terribly wrong and then reacting, I have calmed down (somewhat). Interestingly enough, earlier in the week, I had asked one of the physicians if we could do a nasal culture because Meghan's nose and mouth had alot of secretions. This was done, and today we have a positive culture for Adenovirus. They are starting her treatment this evening which consists of some type of immuno globulin therapy. At least we have an actual diagnosis of something and can begin treating it. Now they are running cultures on every other secretion as well as her urine and stool and we should know something on those soon.
As for last night, I awoke around 3:30am to discussions over Meghan's saturation levels. The respiratory tech, nurse and resident felt like Meghan needed a deep suctioning in her ET (ventilator tube). This would entail them taking her off the vent and using a bag to ventilate her (I have seen them do this once and it is not pretty). So I told them that she responds poorly to suctioning (her heart rate and blood pressure drop dangerously low) and asked if before they do something that drastic, if they would simply try suctioning the inside of her mouth and nose because she gets full of mucus secretions in there and they just sit in the back of her throat. So, they tried that and low and behold, her saturations came back up slowly and steadily and they did not have to do the drastic suctioning. I'm very glad about that.
So, for now, I'm encouraged that we have a diagnosis we can work with. The Adenovirus is very serious but there is literature indicating that there has been success treating it with the proper management. I hope we're on the right track now.
So, I'll leave with my usual request that we all continue to encourage everyone we come in contact with to register with the National Marrow Donor Program and also ask that if you, or someone you know is pregnant to please discuss the possibility of donating your baby's cord blood to the bone marrow registry as well. And, don't forget to get your organ donor card. So, as always, please say a special prayer for Meghan tonight and every night, and let's get all the kids across the world wishing on stars each night for a Meghan Miracle.
Good Night and Prayers for a Healthier, Energized Tomorrow,
Carol
Thursday, January 30, 2003 at 01:17 PM (CST)
Hi Everyone! Meghan got the second (and last) bag of her cells back this afternoon. Her blood pressure has been stable all night and dialysis continues with no real news there, except that it's working. Her liver enzymes were even more elevated today and they are working on getting a medication to help with this. With all of the medications she is on, they have to make sure that every new medication they start does not in some way interact with her current medications. I have asked that they run Hepatitis and CMV tests (too much internet surfing obviously) and the resident agreed to do so. They will also do a c-dificile test (which she has had before), and we will see what those tests show. My motto around here is "always save the liver" (special thanks to Julia Childs for that one :) It's obviously not a laughing matter, but, you have to have some levity in your life, otherwise I may just have a coronary and be in the bed right next to Meghan.
As usual, I continue to surf the net and look for all possible ways to "save the liver", and for those of you who might have some spare time to surf as well, feel free to research obscure sites for proven or experimental ways to make sure Meghan's liver does not continue to fail. They either love or hate my input (I'm sure it's the latter), but I'm not giving up on her or her liver :)
On a side note, we've finally been booted out of our room on the bone marrow unit (we knew it was coming). They are now at capacity. This means we're back to the nasty "family shower" room. We do have a toilet in Meghan's room, but all that's between you and the rest of the world is a curtain, so....it's off to the "family potty" too. I have told bone marrow that we are claiming seniority when we get back down there and they're going to have to kick someone out of a shower room when we get back.....or, I'll pay top dollar to a family who will trade. Either way, we're getting a shower back!
So, all this being said, it's time for me to plead with all of you to do some simple things to help another child, teen or adult who may be in need of a transplant and that is to simply go to your blood bank and tell them you wish to register with the National Marrow Donor Program. It's as simple as donating a pint of blood and filling out some paperwork. We also continue to ask that if you, or anyone you know is pregnant, to please consider the possibility of donating your baby's cord blood to the registry as well. Simply talk with your physician to see if this is available to you. And, while I'm at it, don't forget to become an organ donor (contact your local driver's license facility).
So, as you all head home from your busy day today, don't forget to say a prayer for Meghan tonight and every night, and let's see how many kids we can get wishing on stars for a Meghan Miracle.
Good Night and Prayers for a Healthier, Energized Tomorrow,
Carol
Wednesday, January 29, 2003 at 08:45 PM (CST)
Hi Everyone. Meghan got her cells back today. She will get the second bag of them tomorrow and we're on our way. They have been able to change some of the ventilator settings today without making her uncomfortable (this is a good thing). The dialysis is making her kidney labs look good so with that help, her kidneys are functioning appropriately. She is continuing to produce some urine still. Although it's not alot, any urine is good urine at this point. Her liver enzymes basically remain unchanged with very slight decreases/increases which I guess, even themselves out making not much change at all. They have increased her dosage of one of her medications which is supposed to help her liver, so hopefully we will see some progress in the next few days.
They inserted another tube in her nose to tube feed her and that began yesterday. She did vomit some up today while they were suctioning her so they stopped the feeding. They are going to restart the feedings at an even lower dose. She was basically getting about a teaspoon an hour of formula, but because she hadn't gotten any food in her gut for such a long time, it apparently had a hard time accepting it. Hopefully with the even lower dosage, she will be able to tolerate it and it will help make her stronger.
Her chest film was unchanged from yesterday and she continues to cough up mucus which is hopefully helping to clear her lungs.
She had a very erratic night last night with her blood pressure going all over the place. They kept having to tweak her dopamine levels until they got to a point where she was stable and did not have such high/low swings in her blood pressure. She is very touchy with her blood pressure and it seems the littlest thing will make her swing one way or the other. She has been stable all afternoon and they have not had to make any adjustments to her dopamine level.
Tomorrow more Meghan cell infusion. I will update with any new information and hopefully news of her labs going in the right direction. We have been told it can take around two weeks for her cells to re-engraft. It can also happen sooner or later. Let's all hope they engraft sooner! I think Meghan deserves that break don't you?
So, last, but never least, (I love this part).....please, please, if you, or anyone you know is pregnant, please discuss the possibility of donating your baby's cord blood to the National Marrow Donor Program. And don't forget, encourage everyone you come in contact with to register to become bone marrow donors themselves (and organ donors too). And remember, all blood/platelet donations made in Meghan's name not only helps Meghan, but helps your community as well and on behalf of everyone needing blood products, we thank you.
Good Night for Now and Prayers for a Healthier, Energized Tomorrow,
Carol
Tuesday, January 28, 2003 at 02:27 PM (CST)
Hi Everyone. Meghan continues to hang tough. The dialysis is doing exactly what it should be doing and her elevated levels are trending down. She is still on the ventilator and they adjust those settings all the time. One minute we're on less oxygen and the next on more. Her liver enzymes have been trending up (which is not a good thing), and the doctors are concerned her liver may be beginning to fail. The doctors were talking about using experimental drugs on a compassion basis in order to get her liver back on track, but apparently the drug they were thinking of is only being used at a few facilities, the closest one to us being Duke. Meghan is not at a point where she could be transferred, so this is not an option. So, after alot of praying last night, and having one of those wake up from sound sleep because you can't stop thinking nights, I told her doctors that I think they should discontinue all Tylenol from her pre-meds. They agreed and so now Meghan will not be getting Tylenol (which can be toxic to the liver). So, prior to the Tylenol being discontinued, her labs came in and her liver enzymes have gone down just a little bit (they've come down on their own). I asked the PICU doctor about her chest film this morning (they do one each morning) and he said, "oh, it's about the same....the radiologist said the right side is looking a little bit clearer" HUH???? soooooo, it's NOT the same is it??? I'll take a little clearer as good news any day. I told him today he should be much more optimistic about his patients and not write them off so soon.
So, in comes Meghan's hem/onc doctor, Dr. Slayton who has the results of the DNA or FISH test done on her bone marrow last week. 97% male donor cells. So, the doctors are even more confused and had a "meeting of the minds" today in which the team decided to do another bone marrow aspirate today and if there are no cells in it, they will go ahead and give her back her cells tomorrow. They are confident Meghan's cells will kick the donor cell's butt. The reason for this is because we need white cells desperately and if this donor cannot produce the cells we need, we need to get rid of him and get her cells back in and allow them the two weeks time to engraft. I always knew males were the weaker sex.....:)
Meghan has been opening her eyes quite a bit and squeezed my hand last night. I've told her not to give up and to hang in here and fight. As most of you know, she's not going down without a fight and I'm encouraged by the littlest thing nowadays. So, I'll take the 97% male donor cells (for what they're worth); her slight improvement in her right lung; her bilirubin lowering (if even the slightest bit); and the fact that Meghan has squeezed my hand as if to tell me....I'm not giving up mom, I'll be fine.
So, I'll update tomorrow after the results of today's bone marrow aspirate and hopefully will be able to tell you all her bilirubin is even lower (insert prayer here). And, as usual, I leave with my continued request to all who are, or may be pregnant, please discuss the possibility of donating your baby's cord blood to the National Marrow Donor Program and encourage everyone you know to become registered bone marrow donors (and organ donors too)! Also, all blood/ platelet donations in Meghan's name are appreciated. And last, but not least, say a prayer for Meghan each night, they're working and remember to hug your children tonight as you stand wishing on a star for a Meghan Miracle.
Prayers for a Healthy, Energized Tomorrow,
Carol
Sunday, January 26, 2003 at 04:10 PM (CST)
Hi Everyone. Meghan is hanging tough. Unfortunately, she was put on dialysis today in an effort to help her kidneys out. Her BUN is so incredibly high (153) that they are hoping that dialysis will help get this back in line. Apparently this number is so way out of wack that it in and of itself can be hindering her engraftment. We have been told that this is not permanent and is only to help her kidneys function at 100%. She has not had complete kidney failure and she continued to urinate very well although she wasn't clearing her kidneys appropriately. In that, I mean what was coming out in her urine was not all of the toxins that they normally clear and she was keeping some of the toxins that need to come out of the kidneys. She is on CVVHD which is a dialysis machine that runs 24 hours a day.
On another note, they turned her back on her back today and she seems to be doing well. I'm watching her right now and she is trying so hard to breathe over the ventilator and started really moving her left arm. The nurse went ahead and gave her Ativan and the paralytic drug to make her stop moving.
That's all the excitement for the day. Tommy and Tommy Lee have gone back home. We all had a nice lunch (my car had a dead battery (UGH- good thing Tommy was here to fix it :)
So, I'll end for now and won't let you all down.....please, please, if you, or anyone you know is pregnant, please discuss the possibility of donating your baby's cord blood and remember, encourage everyone you know to become registered bone marrow donors. Don't forget to become an organ donor too! We also ask that you continue to donate blood and/or platelets in Meghan's name. She is transfused every day with one thing or another and every donation helps. Don't forget to say a prayer each night for Meghan, and remember to have your kids wish upon a star for a Meghan Miracle!
Good Night and Prayers for a Healthier, Energized Tomorrow,
Carol
Saturday, January 25, 2003 at 10:08 PM (CST)
Hi Everyone. Not much to report. The results we were waiting for today are only halfway back. We were told today that they have enough cells to do the DNA test on Meghan's marrow and we will find out Tuesday whether or not Meghan still has male donor cells and if so, how many. If she has male cells we will have to make a decision depending on how many cells there are on whether or not to let her keep trying to engraft, or to go ahead and give her back her harvested marrow. So again, it's wait, wait, wait.
Meghan's lungs were acting up this morning and her CO2 levels were not doing as they should so they decided to turn her over onto her stomach (while she is on the oscillating ventilator). Apparently, this was a good thing because the PICU doctor told Tommy this evening that some of her levels were looking better and they want to keep her on her belly the rest of the night. The original plan was to turn her back onto her back at 11:00 pm this evening but because they think she has made some improvement by being on her belly, they are going to leave her that way. She always has been a belly sleeper :)
Along with the lung problems, Meghan's kidneys are not functioning at 100% and her sodium level is sky high along with her BUN. So, I requested a nephrology (kidney) consult and the PICU doctors had already requested an endocrinology (glands/hormones) consult. After looking at everything to the most minute detail, they have attempted to get rid of all sodium from her flushes, HAL (nutrition) and any other place sodium is added. So far, we have not had any change in her sodium level (but I guess I should give it more than a day). They have also decided to stop some of the more nephrotoxic (kidney toxic) drugs which she is on (either by way of some of the antibiotics and/or her immunosuppression drugs). Hopefully, this alone will allow her kidneys to come back to 100%. The bright news is that she has not stopped or slowed down in her urine output and this alone, is a very, very good thing.
So, I sit here across the street from Shands in the hotel with Tommy Lee and I watch his every breath and know how much he loves his little sister. I think his visit alone to Meghan made her feel better. We were standing by her bed talking to her and he was kissing her hand and rubbing her arm and she really started moving (moreso than she has in a very long while...she's on a paralytic remember)and he said to me "Meghan's energy needed a rest, her energy's strong now". The nurse was there and asked me if he had these "feelings" around people and I said "no". She said, you know, there are people who just know things (WOW huh?).
I don't know where he comes up with this stuff, but what a profound statement for a little boy who I didn't know knew what "energy" was. He truly does know Meghan and I'm glad.
So, I will update with more good news as it comes and as Meghan's energy continues to strengthen :) and, will of course not dare end this journal entry tonight without my continued requests for bone marrow donors and cord blood donors. As I've harped before, registering is as simple as donating a pint of blood (which you can do in Meghan's name [shameless plug]) and donating your baby's cord blood is as simple as discussing it with your physician. There are so many lives waiting for that match and it's my goal to find at least one match through our efforts. We have alot of people on this website who know people, who know people, who know people. Get them on the ball and let's save a life! Don't forget to say a prayer for Meghan tonight and every night, and have your kids wish upon a star for a Meghan Miracle.....I think it's working!
Good Night and Prayers for a Healthier Energized Tomorrow!
Carol
Thursday, January 23, 2003 at 06:45 PM (CST)
Hi Everyone. Meghan continues to be on the oscillating ventilator. I got the results of yesterday's bone marrow biopsy back and unfortunately her marrow is empty of cells. We are awaiting one more test which should be back either Saturday or Monday and then we will have her own marrow which was harvested from her back in November when we came in, infused back into her. This is obviously a blow as she has gone through so much only to be given back her own cells. We are at a point where we have to face up to the fact that she has failed to engraft and there is no other choice. Once her own cells are reinfused, we should see some engraftment within two weeks. One of the possibilities is that Meghan can be cured from this procedure too. Because she was in remission when we came in, and there are no detectable leukemic cells in her old marrow, and she has no cells in her marrow at this time, this may act as a bone marrow transplant in and of itself. This is a remote possibility, but a possibility nonetheless. So, she is receiving granulocytes this minute to help with this lung infection we are still battling. We are very hopeful that once her cells are reinfused they will attack the lung infection and get her off the ventilator.
I'm unsure whether or not we will go back into chemotherapy or what the plan will be. That is something Dr. Mogul and Meghan's doctor in Orlando, Dr. Giusti will decide together. So, even though this obviously didn't work for us, it does work for others, so we continue to ask that if you, or anyone you know is pregnant, to please discuss the possibility of donating your baby's cord blood to the National Marrow Donor Program. And please remember to encourage everyone you know to become a registered bone marrow donor (and an organ donor too). And as always, we continue to ask for your prayers. Meghan is a tough little girl fighting a very hard battle which she will win!
Good Night and Prayers for a Better Tomorrow,
Carol
Wednesday, January 22, 2003 at 01:59 PM (CST)
Hi Everyone. I know you're all checking in daily and I really don't have much to report right now. Meghan's white count is still at .1 which as her doctor told me this morning, "is disappointing". Dr. Mogul himself did another bone marrow biopsy within the last two hours because the specimen they took yesterday was not a good sample and they were not able to get any information from it. Hopefully I will get some news later today from the preliminary report. I of course, did not watch the procedure, but came in right after it was completed and actually saw the marrow sample. I must say it was a big piece and pretty cool looking. It was a long cylinder looking thing and was white on the tip and turning red as you go further down. This time they actually went into her hip from the front instead of the usual backside entry. This was mainly due to the fact that she is on the ventilator and to move her around too much is stressful, and because he's such a good doctor, he can do it that way. Anyway, wait, wait, wait. They are talking about giving her granulocytes again this week (YUCK). I say that because as you may remember, her blood pressure usually bottoms out when she gets them. I will definitely make sure that they properly premedicate her this time with Demerol, Hydrocortisone, Benadryl and Tylenol. They may skip the Demerol because of her other sedating drugs, but that will be ok.
So, nothing new to report. Her blood pressure is doing great. Lab values are hanging in here, and we are praying for good news from the bone marrow biopsy. If there is any news tonight, I will again update this site. If not, I will update as soon as I get any news. So.....you all know what's coming......please, please, if you or anyone you know is pregnant, please discuss with your doctor the possibility of donating your baby's cord blood to the National Marrow Donor Program. We also ask that you continue to encourage everyone you know to become registered marrow donors as well. We know this saves lives and there are so many waiting and hoping for a match. Also, don't forget to become organ donors too. We still appreciate any and all blood/platelet donations you can make. Remember to say a prayer for Meghan tonight and have your kids wish upon a star for a Meghan Miracle!
Carol
Tuesday, January 21, 2003 at 09:32 PM (CST)
Hi Everyone. Not much to report. Meghan was able to come off the epinephrine and hold her blood pressure early today and has continued to have a very stable blood pressure. They have also continued to "tweak" her ventilator settings and are working towards placing her on a conventional ventilator which she can then be weaned off of. Meghan's white count is back to .1 but Dr. Mogul is confident that this is because the white cells that are being sent into her bloodstream from her bone marrow are going directly to her lungs to help fight this infection. He did do a bone marrow biopsy again today and we don't know the results of that yet. Her other lab values are steadily going in the right direction, her kidneys are still functioning and her liver is still hanging in as well. With all of the medications she is/has been on, these organs get quite stressed and have to work overtime. Meghan has managed to keep these organs working, and we pray they continue to hang in there.
Other than that, Meghan's PICU Nurse is fabulous (yes, everyone I said fabulous)....she bathes Meghan everyday, lotions her up (slippery little sucker :), and repositions her often, makes sure her mouth is clean, her eyes have salve on them and basically makes her feel better with her loving hands. She says a prayer for Meghan every day before she begins her shift and another one when she leaves. Unfortunately, these nurses work 7 days on, 7 days off, and Thursday is the trade-off day. Hopefully we'll get someone just as caring and in-tune with Meghan as Michelle has been.
I know there's not much here, but, there's really not much to report. I will update again with any news that comes this way, and of course, when the bone marrow results are in, I will let you all know the results.
So, I'll end with my usual requests that if you or anyone you know is pregnant, discuss with your physician the possibility of donating your baby's cord blood to the National Marrow Donor Program. We also continue to ask that you encourage everyone you know to register as marrow donors (and don't forget, organ donors too). There are still so many out there looking for that match. We also appreciate any blood and/or platelet donations as Meghan is transfused pretty much daily. Remember to say an extra prayer for Meghan tonight and each night (and morning too).
Good Night and Prayers for a Better Tomorrow
Carol
Sunday, January 19, 2003 at 08:26 PM (CST)
Hi Everyone. Day +54 and nothing good to report at all. Meghan was placed on an oscillating ventilator late yesterday afternoon. She had been on 1 liter of oxygen by nasal canula Saturday morning and began desaturating so they changed her to oxygen by mask and she was doing fine. Tommy had come up to relieve me so I started back to Orlando for some rest. Tommy called me to tell me the doctors were in her room discussing the option of putting her on a ventilator because she was so sedated and they were worried that she would either gag or perhaps choke if she were to vomit. I could think of no rational argument to keep them from placing her on the ventilator so I told him I didn't like it because I know how hard it is to get them off the ventilator, but I agreed this was probably a good option. We were also told they were going to wean her off the ventilator as soon as she was off the phenobarbitol and on to another anti-seizure medication which they were starting her on and which is less sedating so she shouldn't be on for long. So, I figured I would continue home pick up Tommy Lee and turn around first thing in the morning and come back up. Just as I got into Orlando, I was again called by Tommy who told me Meghan's blood pressure had dropped dangerously low while they were still debating whether to intubate her. Both Dr. Mogul and the PICU doctor were pushing epinephrine, norepi, dopamine, etc into Meghan as fast as they could in an attempt to at least get her up to PICU. They got her up there, intubated her and she again dropped dangerously low and more measures were taken to stabilize her. I was called again and told that now this was an emergent situation and Dr. Mogul requested that I immediately come back to the hospital. Remember that train I spoke about last time (must have been a plastic model).... because the train that hit me this time must have been carrying 5,000 cars behind it and they were all filled with concrete walls each slamming into my heart at an incredible rate of speed. So, with my eyes burning, I turned around and sped back to Gainesville not quite sure what I would find.
I got to PICU and Meghan had stabilized. I was told in a lighter moment, Meghan actually used her left hand (which is the side she has had paralysis on) to swat away the doctors and nurses working on her :) She also opened her eyes last night and looked at me. I immediately asked the nurse to give her some Ativan as my biggest fear is that she will awaken, not know where she is, have all these new tubes and wires in her and be afraid. So they are keeping her sedated and she is given a paralytic to make her paralyzed so she won't fight the ventilator. The neurologist was in today and is in the process of weaning her off the phenobarbitol and changing her to another anti-seizure medication. The doctors did say this morning that part of Meghan's heavy sedation was because although she was getting oxygen, she was not expelling CO2 and was basically putting herself to sleep. So, the ventilator is helping greatly with that as well. Her various labs are beginning to look a little better. There are so many now to look at (aside from the easy to read, WBC, RBC, Platelets, etc) that it's hard to keep up. They have added two new lines to her already existing three, one being an arterial line to measure blood gases and another to give them more access for medications. She basically looks like a pin cushion right now and with the oscillating ventilator, she is a pin cushion on top of a washing machine.
So, last night I had Tommy go back to Orlando and pick up Tommy Lee as he was crying and wanting me, so he did and they both came back up here this morning while I stayed with Meghan overnight. She is relatively stable although her blood pressure still continues to trend downwards. They have her on a continuous drip of epinephrine which they can slide up or down depending on how her blood pressure is responding. So, I'm across the street from the hospital with Tommy Lee while daddy takes a shift with Meghan tonight. Tommy Lee saw Meghan today and did very well with seeing her like that. He asked very appropriate questions and we explained everything on a level which he could understand. There were also very nice doctors there at the time telling him they were taking care of Meghan and telling him some things and basically he handled the whole thing very well. We were both very worried about him seeing her like that because the last time he saw her intubated for her MRI and some other procedures she had, he got very upset and was almost inconsolable. This time he did very well, and told her he loved her and told daddy to give her a kiss for him. All in all, he is understanding she is very sick but that everyone is working very hard to get her better.
Meghan had a white count of 200 Friday with an ANC of 20!!! Then her white count went to 600 with no ANC and then 400 with no ANC. The doctor believes this is due to her new cells (neutrophils) going to her infection in her lungs and fighting it. We are hoping her white count will continue to trend upwards and that will be a great improvement in and of itself.
So, all this being said, I still ask that if you or anyone else you know is pregnant, please consider donating your baby's cord blood to the National Marrow Donor Registry and don't forget, register yourself to become a bone marrow donor. There are so many out there looking for that perfect match (or anything close) to save their life. Also, don't forget to become and organ donor. We also ask for your kind donations of blood and/or platelets in Meghan's name. And, as always, please, please say a prayer for Meghan. We are desperate for a turn for the better.
Good Night All, Will Update Soon,
Carol
Friday, January 17, 2003 at 06:26 PM (CST)
Hi Everyone! Day +52 and as I've said...what a difference a day makes (or two really). After such a "high" on Tuesday, we woke up Wednesday to three more seizures. After the first two, the neurologist came in and bumped up her phenobarbitol to a much higher level and gave her a loading dose again of 300mg. She broke through and had another seizure (her third) so they gave her another 80mg and so far, that has done the trick. Meghan is not responding again and cannot move her left arm and leg. The neurologist believes this is due to the seizures and believes this may go away and hopefully is temporary. Another EEG was done which turned out to be a little better than the previous one. We attempted to have an MRI done of her brain last night around midnight, but Meghan could not keep still due to her coughing so hard.
Meghan had a rough morning this morning breathing very hard and her heartrate was consistently up in the 180's. The doctor felt it was due to the Lasix they gave her Thursday to get some of her swelling down, so they decided to boost her with some packed red cells. This apparently worked as her heartrate is now staying steady in the 140's to 150's (which is still very high, but manageable). We went for a CT of the brain today and I requested they do a repeat CT of her lungs at the same time. Meghan's nurse got a call while in our room from the radiologist stating that the lungs looked worse than they did Monday. I immediately went to find Dr. Mogul and had him paged. He came to our room and I told him that I wanted him to take me down to look at the CT myself. So, we walked down and looked at the CT and compared it to Monday's. It did indeed look a little worse in that the "infiltrates" were getting larger or spreading. He thinks it may be fungal (which is never a good thing) and said that this is very serious and that we really need her white count to come up quickly. These are the types of things a doctor says to you and all you can do is look around for the train that just hit you. So, no train found, I picked myself up and asked about doing a lung biopsy to find out exactly what type of fungus we're dealing with. This can be done two ways, one a needle biopsy or two, an open lung biopsy. Hopefully the way some of the infiltrates are situated, a needle biopsy will suffice. I will know a little bit more about this tomorrow.
As if that's not bad enough (which it is), her GI doctor came in and told me her liver is enlarged. This can be due to a couple of things, one, he believes its a combination of an infection she has (presumably from her lungs), and two, all of the medications she is on which are toxic to her liver (and which can't be stopped). So, with her liver enzymes still elevated (high but not increasing, just kind of staying where they are), it's a watch and wait game there.
So, I sit here and look at this precious baby (receiving platelets), and what does she do...she opens her eyes and really looks at me! (She's so intent on making me a liar :) So, I have to go for now, but not without my usual requests....please, please, if you or anyone you know is pregnant, please discuss the possibility of donating your baby's cord blood to the National Marrow Donor Registry. This along with registering to become a donor with the NMDP can save the life of many, many, children, teens and adults who might not have any other alternative. Remember, we also ask that you sign up to be an organ donor! And don't forget, please donate blood and platelets in Meghan's name. We need them! And as always, say a prayer (or two or three) for Meghan. She's having a rough time right now, and we're using prayers up right and left! Keep them coming please!
Good Night, and Prayers for a Better Tomorrow,
Carol
Tuesday, January 14, 2003 at 08:14 PM (CST)
Hi Everyone! Day +49 and we're out of PICU! Meghan had her bronchoscopy today and did well. She had some bleeding during and afterwards, but it stopped before she left recovery. We will not know the results of the lung biopsy for a few days. There are a few things that changed today and I'll try not to drag this out (yeah right Carol)... First, Dr. Mogul now feels that the "pneumonia" that has infiltrated her lungs has probably been there for awhile. He feels that because Meghan had no white cells the infection did not show up on CT because there was no white cells to fight whatever it is/was. So, now that I've confused you all, here's the good side of this....
Meghan is engrafting!!!!!!!!!!!!!!!
The bone marrow biopsy from last Friday showed engraftment and he feels we should be fully engrafted by the end of this week! HOORAY! So, what this means to all of the lung mess is that the granulocytes she has been receiving as well as her new donor cells coming in have attacked this infection in her lungs and this was what they could now see on CT. Dr. Mogul said that he truly believes that the granulocyte infusions saved her life! Thank you granulocyte donors!!!
As if that wasn't great enough news....Meghan began responding to me today for the first time in at least two weeks. They were infusing granulocytes today and we were all in here watching her like a hawk and the PA came over to her and went to hold her hand and Meghan looked at me and reached for my hand! From that point on she has been looking at me and trying to talk (still has the NG tube so it's probably difficult for her to say anything). She even watched Barney for a little bit. She also had an abdominal ultrasound this evening and pushed the lady's hand away and shook her head no. The funniest part was when the girl doing the ultrasound started singing the Barney song to Meghan and then said "do you like my singing?"....Meghan shook her head NO fast and furiously! I couldn't help but laugh hysterically. After all this, she's still a critic :)
Meghan is resting comfortably right now (thanks to a little Ativan and Morphine). I asked for the morphine because I thought the Ativan might take the edge off her fussing (which was actually music to my ears...but I felt bad for her or I would have let her go on and on just to hear that voice) but it didn't and I remembered that the first bronchoscopy left her throat sore and painful so apparently the morphine did the trick.
So, I'll end this on a cheerful note and we thank all of you for your continued prayers and well wishes. Meghan is fighting a very hard battle, but she certainly turned the corner today. What a difference 24 hours can make in a lifetime (don't forget that people)! And now, here's the moment you all come to this site for.......please, if you or anyone you know is pregnant, please discuss the possibility of donating your baby's cord blood to the National Marrow Donor Registry. And as usual, don't forget to get on your soapbox and get people registered as bone marrow donors. Just because Meghan's battle is being fought and we had a donor, there are many, many people who do not and are waiting for that one person. Just so you know, someone whom I cherish very much is helping her husband fight this leukemia battle and he had a match and was ready to be admitted to the hospital when the donor started missing appointments and became unreliable and dropped out. They are back to square one searching the globe for a donor. So, you see, it only takes one person to save a life or crush someone's hopes and dreams. So, do it for us, and do it for someone you don't even know...but just do it (sorry NIKE...illegal use of a slogan). So, I'm done for now, but you know..... I'll be back (sorry Arnold) and I will continue to harp on this subject. And, of course, while I'm at it, become an organ donor too! I know someone who is very greatful someone did! Good night for now, my Tylenol PM is kicking in :)
Proud Mom to the Toughest Little Fighter in the World,
Carol
Monday, January 13, 2003 at 09:07 PM (CST)
Hi Everyone! Day +48 and we're back in PICU. Meghan had trouble this afternoon when they started her granulocyte infusion. She is to be premedicated with Demerol, Hydrocortisone, Benadryl and Tylenol for granulocytes because she has a reaction to them wherein her blood pressure drops very low and her oxygen saturations decrease. She was not premedicated as indicated above and was given only Benadryl and Tylenol. She of course dropped her pressure and her oxygen sats. A code was called and of course everyone came running in. She never stopped breathing or anything, and I was not sure why they called the code, except for the fact that her sats dropped. Her blood pressure and saturation levels came right back when they stopped the infusion of the granulocytes. So, we were transported to PICU to continue the granulocyte infusion under close supervision. I was told by the PA this afternoon when I asked why the order was not sent to the bone marrow unit and was told it's like you were at another hospital...the orders don't transfer. Am I overreacting or does this sound like the most insane dangerous thing you ever heard of? So, just another thing I have to keep one eye open for....premeds, wrongs meds.....what the heck....just a little thing like an allergic reaction!
Anyway, a CT scan was ordered today of Meghan's brain and chest as well as her abdomen, however, the abdomen scan was canceled because I refused to let them give her contrast again (remember she vomited this up the last time). Meghan's nurse also indicated that she did not want to put the contrast down her NG tube because just the littlest flush of her NG tube with water sends Meghan into coughing fits that last a long time. We suggested IV contrast but that was rejected by as we like to call him....Dr. Useless. Because of my low confidence level in Dr. Useless, I called Dr. Mogul to let him know my concerns about Meghan's lack of responsiveness and lethargy. He told me he had not been made aware of any of this and came right over and looked at her. He was very unnerved by her presentation and went immediately to look at the CT scan. He came back a little while later while they were in doing another EEG of Meghan's brain and told me he was very concerned with a couple of things. First he said her brain had more changes on CT and secondly, and most disturbing to him was that her lungs had gotten terribly worse. He said the CT of 12/31 showed the spots on her lungs had gotten better and now after weeks of intense antibiotic therapy, the lungs had actually gotten worse and he could not explain it. He ordered a pulmonology consult as well as a neurological consult. Both physicians came in right away and were very good.
The pulmonologist said her lungs sounded clear but said that was clearly not the case on CT and they needed to do a biopsy. After much discussion, it was decided that they would do another bronchoscopy with biopsy of Meghan's lungs tomorrow to find out what was infiltrating them. The neurologist came in and did a very thorough exam of Meghan and said that after looking at Meghan, her CT and the EEG which showed some slowing of brain waves, he felt that it is medication induced and she is not permanently brain damaged.
So, I stopped by another girl's room up here in PICU from our unit and was talking to her parents. Amazingly enough, this teenager has the exact same diagnosis as Meghan. They were telling me that what I am describing to them is exactly how their daughter ended up on a ventilator for 6 weeks or so. We exchanged many similar stories and they have given me a whole arsenal of questions to ask the doctors tomorrow. Tommy is coming up as a spur of the moment thing to see Meghan. Maybe it's mostly to support me, but whatever the reason, I'll take seeing him. We actually snuck out Sunday during our changing of the guards and had lunch together. It was very nice!
So, I'll update tomorrow after we get results (we should have last Friday's bone marrow biopsy results as well). This of course wouldn't be Meghan's website without me ending with our plea for cord blood and bone marrow registration. So, in that regard (I've still got it), please, if you or anyone you know is pregnant, please talk with your doctor about the possibility of donating your cord blood to the National Marrow Donor Program. Also, please keep getting the word out to everyone you know or those you don't know....to get registered with the National Marrow Donor Program. This, along with cord blood is saving many children, teens and adults who may not otherwise have a chance at life. Also, don't forget...be an organ donor too!!!! Say some extra prayers tonight for Meghan! They're working and we need them!
Carol
Sunday, January 12, 2003 at 07:48 PM (CST)
Hi Everyone! Day +47...Meghan's out of PICU and back on the 4th floor on the Bone Marrow Unit. She seems to be doing better and has not had any bloody drainage from her NG tube in days. I'm not sure when they will take it out as I'm sure this is helping her gastrointestinal tract heal and it sure needs some rest after what she has been through. She continues to sleep most of the day and night with brief periods of awakeness. She is not her alert self yet, but there are periods when she does look around and at you. At this point, Tommy and I both feel that she needs all the rest she can get. There's not much to report at this point as we are closely watching her white count and hoping it holds steady. We are a little bit hindered in that she is receiving donor granulocytes (white cells) four times a week, Monday, Tuesday, and Thursday, Friday. What this means is that her white count will jump up to a great range of 4,000+ after infusion, and then of course will come back down. We were told the best way to see if her own counts are coming back up is to watch the weekend labs. So we've been watching them closely and they are holding relatively stable anywhere between .4 and.5 I'm hopeful the evening labs will continue to show a steady count before her infusion tomorrow. This is not an accurate way to measure by any means, but it at least gives us an idea.
Other than that, Meghan is hanging tough and giving all she has. She's a little fighter and has recently began to give the nurses the "what for" again telling them "stop it" and "no" and pushing their hand away and trying to kick. That's our girl! I love to see her fight back!
So, hopefully we'll get the results of this past Friday's bone marrow biopsy Monday or Tuesday. Apparently, the Physician's Assistant who performed the procedure commented that he didn't know if he had gotten enough (UGH). So, we'll wait and see, we should at least know if they still see "clusters of cells" in her marrow as they did the previous aspiration. They were unable to do the DNA testing on those cells as well due to the small amount of cells present. What we're looking for there is male donor cells and no Meghan cells (insert your prayer now).
So, here I am another week in Wally World (National Lampoon's Vacation people....stay with me here).....Meghan has been joined in the unit by another one of her friends from Arnold Palmer whom we wish a very successful uneventful transplant! And now, (change the channel if you wish)......please remember, if you or anyone you know is pregnant, please discuss the possibility of donating your baby's cord blood to the National Marrow Donor Registry and encourage every adult you know to become registered with the National Marrow Donor Program. I can't say enough how many children, teens and adults are affected by blood related illnesses and can be given a new lease on life with the donation of your marrow. The chances of you being called on to save the life of someone this way is incredibly slim, but it could happen, and think about the person you could save and the impact you could make in someone's life. When you hesitate to register, think about our Meghan or anyone else's child, teen or family member going through this and the heartache families go through fighting these diseases and the unknown of finding a possible donor and this alone should give you great pause and be thankful for the healthy children and family members you have and warrant you to simply go register. So, off my soapbox for this installation (I know you all wait for that part so I oblige).....We continue to ask that you donate blood and if possible, platelets in Meghan's name. I'm pretty sure she is the "Tranfusion Queen" at this point, and the blood you donate actually helps your community (with Meghan's account credited for the pint). So, when you're donating you're actually helping someone in your community as well as Meghan and we thank you for that. And if you're not already an organ donor, please take the time to become one, there are so many waiting for new organs and "that call". We've seen firsthand what an organ donation can do for another little friend of Meghan's whom we wish all the best to. So, say a little prayer for Meghan each night and also a prayer for all of the other thousands of children, teens and adults fighting this horrible disease. Your prayers are working and we thank you dearly for them. Hope to update soon with some good counts!
Carol
Wednesday, January 08, 2003 at 01:12 PM (CST)
Hi Everyone. Day +43 and still in PICU. Meghan had a rough night last night throwing up and otherwise expelling large amounts of blood about every two to three hours. She had no rest last night and was visibly whipped. I had the nurse call the PICU doctor at about 3am only to be told that they know she's actively bleeding and "they're watching her labs closely". I had the nurse re-call the PICU doctor and made him come in to see what was going on for himself. So he brought himself to the room and basically told me the same thing in person. I told him I wanted the Attending PICU doctor consulted as well as Meghan's hematologist/oncologist, Dr. Graham-Pole. They were both called and Dr. Graham-Pole immediately didn't like her change in hematocrit and ordered packed red blood cells. For the record, these did not get hung until he was here this morning doing rounds at about a quarter to nine. Nothing like a six hour delay in getting blood products when we've got a child bleeding. Such is life here, nobody in too big a hurry. Anyway, she only threw up (and then some) two more times before the blood was hung....I'm so demanding!
Anyway, the afternoon brought no difference in these so after thinking about it, the following was ordered: an ultrasound of Meghan's abdomen (isn't this what I asked for early last week???); an NG tube to suction out the blood in her belly, and a PICC line to give the nursing staff more access for all of the medications and blood products Meghan is receiving. So, I sit here now and watch this bright red blood stream from the tube in her nose and wonder "why wasn't THIS done earlier"?? Then, as Meghan's doctor was leaving I asked how low were we going to let her hematocrit get before transfusing (it was 20), and he told me 30. I said will you please write the order now so I don't have to scream at 3am that this is what you wanted and not have to wake you up? So, the order was written to transfuse when Meghan's hematocrit gets to 30. I'm encouraged by the little bit of proactiveness going on.
We are still scheduled for another bone marrow biopsy this Friday if all goes well. I am hoping this NG tube will relieve her and let her rest while suctioning all of this nasty blood out of her poor belly.
On a somewhat "funny" note, we had a visit from an Infectious Disease physician yesterday to help the doctors figure out why she continues to spike these fevers even with all the antibiotics she is on. The first question the doctor asked the nurse as she was walking in the door was where are the gowns, gloves and masks required before entering Meghan's room. The nurse informed the doctor that they did not have to use them because Meghan was "not actively VRE positive"(not according to all the precaution signs on our door)...but....I stayed quiet waiting for my chance to pounce, and when the doctor asked the nurse where she got her information, the nurse said "that's what we were told". So, you know me....seeing my chance, I interjected with...not only do they not have to wear gowns, gloves and masks, they don't have to wash their hands or glove up to hang medications in here either. I felt so sorry for that doctor as she almost became faint. Devious as I am, I knew that she, being an infectious disease physician would have a conniption....and.....she did. "Mom is absolutely right" everyone needs to wash hands, gown, mask and glove up. I said (again knowing right where to land the knockout punch), "well, Meghan is already VRE positive so I knew it wouldn't affect her, it could only be spread throughout the floor". Ok, ok, a little harsh I know, but you guys, I have to have some enjoyment in life.....:) what better way for me to take out some frustrations then to have infectious disease climbing the PICU walls? PS: EVERYONE suddenly began to wear gowns, masks and gloves (too funny).
So, for now, NG tube still draining nasty bright red blood. She has gagged a few times still having a coughing urge. The GI doctors were just in and saw what was coming out and also her gagging. They said hopefully this will let her heal and this gag/cough will diminish (let's all say a little prayer for that one).
Ok, so, now for the best part I know you all have been waiting for...the winning numbers to this weeks lotto are (oh sorry, wrong web page)....(little punchy aren't I???) Here's to no sleep in several days!!!! Waiter....another Corona please, and more sunscreen on my back! Oh sorry, back to reality......please, please, if you or anyone you know is pregnant, please discuss the option of donating your baby's cord blood. We also ask that you continue to recruit whomever will listen to you into the National Marrow Donor Registry. I cannot tell you enough how this, along with cord blood is saving the lives of many children, teens and adults stricken with this terrible disease as well as other blood related illnesses. I also ask that you remember to become an organ donor too. I have seen firsthand so many organ transplant children here (running through the halls with their little steroidal faces :) and enjoying a new lease on life. Well, I will update again hopefully with much more positive news. Remember Meghan in your prayers, she is a beautiful baby and deserves this cure.
Carol
Tuesday, January 07, 2003 at 11:51 AM (CST)
Hi Everyone. Day +42 and we're still in PICU. Meghan had an endoscopy yesterday to find out the source of her bleeding. She tolerated the procedure well and they found a small tear at the bottom of her esophagus, and her entire gastrointestinal tract is swollen and inflamed. The tear is most likely due to the vomiting she has been having. The blood is from all of the inflammation in her intestinal tract. They have added some medications and upped the dosages on others and feel that her condition is manageable. She was in quite a bit of pain last night after the procedure (sore throat, etc) and I ended up having to argue with the PICU doctor for some pain medication for her. I have never once since her diagnosis asked for pain medication for her and the one time I do I get resistance. I was not pleased. Anyway, after going back and forth, she was given something (that lasts an hour) and she began to rest. About one hour later she awoke again in discomfort and agitated (lack of sleep, feeling horrible and sore belly and throat). So, they gave her another one hour dose of pain medication. UGH! Then, I hate to say fortunately, but Meghan got rigors (trembling and shaking throughout her body- probably due to one of the antibiotics she is on), so they gave her Demerol. She then slept peacefully through the night until she awoke vomiting bile and old blood as well as having the same contents come out the other end as well. We got her cleaned up and she went back to sleep. She awoke four or five hours later with the same problem. Apparently, this will continue until her intestinal tract heals.
I also had a run-in with her nurse this morning who refused to wash her hands each and every time she comes into Meghan's room and also would not wear gloves when she was hanging her medications. I told Meghan's nurse that under no circumstances was she to enter this room without first washing her hands and she was not to touch Meghan or her medications unless she was gloved up. Nice little argument at 8:00 a.m. after just getting back to sleep from the vomit session.
Meghan is receiving her granulocytes now and resting comfortably (premedicated with Demerol.....works every time). I took the time to go search out the head of the bone marrow department, Dr. Mogul and ask what he thought of Meghan's current status and to advise him of the pain medication issue as well as the handwashing issue. First, he feels that Meghan is doing much better than she was when he last saw her Friday. He said her heartrate has come down, her blood pressure is manageable, her respirations aren't as fast and that on last Friday's bone marrow aspiration they saw "signs of engraftment". I asked what this means and he said there were small clusters of cells in her marrow (which weren't there on biopsy the previous week). He was very encouraged with this sign and said we will do a repeat bone marrow aspiration this Friday. Then I discussed with him the pain issue. He was not happy that I had to jump through hoops to get her pain medication and said that the bone marrow unit is "very liberal" with pain medication (as they should be). He said if it happens again, he wants to be called immediately. Lastly, he was very unhappy that the nursing staff was not washing their hands and gloving up and said that if I have a problem to let him know.
So, when I got back upstairs to PICU, the attending doctor this week, Dr. Graham-Pole was charting in Meghan's chart. I talked with him at length about how he felt she was doing and he basically said the same thing as Dr. Mogul. I also advised him of the pain medication issue and he said that was inexcusable and he was going to talk to the residents right then (which he did). He also wrote an order for pain medications if necessary, around the clock until she gets better.
We may be transferred back to the bone marrow unit tomorrow and I cannot wait. So, for now, that is the latest. Meghan is a tough little nut and is hanging tough! Everyone comments to me that they cannot believe how strong she is to handle these complications and still manages to hang in here. I figure I'll sneak my obligatory request here as I've amazingly still have your attention. So....please, if you, or anyone you know is pregnant, please speak with your doctor about donating the baby's cord blood. And remember, get everyone you know on the bandwagon and register with the National Marrow Donor Program. This, along with cord blood is saving the lives of many children, teens and adults who may not otherwise have a chance. Also, while I'm at it, please, become an organ donor as well. One of Meghan's little friends from our hospital in Orlando was fortunate to get a desperatly needed liver transplant. She is just around the corner from us here in PICU and doing fabulously! Also, remember, to donate blood and if possible, platelets in Meghan's name. She is transfused often and platelets are the last thing to come back, so we'll be needing those for awhile. Remember to say a prayer for Meghan each day and also for all the children, teens and adults who are battling life threatening illnesses such as this.
Will update soon,
Carol
Friday, January 03, 2003 at 12:46 PM (CST)
Hi Everyone. Day +38 and still no counts. Meghan is back in the PICU. She had been having some dark tarry stools recently (which is an indication of a bleed somewhere in her belly) and Wednesday night began to cough and threw up dark "coffee ground" like substance followed by two large bright red bloody clots. The nurse was standing there as it was occurring and I had to yell at her to call the doctor. I'm not quite sure what she was waiting for as she was not doing anything to help the situation as it was occurring. At least she could have hit the call button and have another nurse call the doctor if she felt it necessary to stay in the room with Meghan. Apparently she did not, and finally went out to make the call......So, we had PICU residents and doctors in here as well as her treating physician here, Dr. Mogul who came right away (and almost got a speeding ticket in the process). Anyway, we were transported up to PICU and there were some changes made to her medications. At this point, the only procedure to find out where the bleeding was was to do an upper and lower GI. This of course, was not something they wanted to do due to her low counts, etc., so they watched her carefully all night. She had several seizures that evening and more changes to her medications were made. She finally went to sleep around 6am and slept in and out all day. Her eyes have lost their brightness due to all the medications she is on and she looks drugged and groggy. I look forward to that sparkle and see glimmers of it as she has gotten better this week. She has switched from watching ET all day to watching The Grinch (with Jim Carrey, or as my son would say....the "real" Grinch..... I haven't been able to convince him that this is NOT the "real" Grinch, but rather the cartoon version is, he just won't accept it.....I thought I raised him right...he saw the cartoon version before the Jim Carrey version so I thought he'd get it, but, I guess when you're 5 and headstrong, sometimes, mom just isn't right about some things :)~
So, Thursday Meghan had a day of high heart rates, high blood pressures, and still feverish. She had one more episode of throwing up dark bloody material but it was a very small amount and she has not done so since (crossing fingers & toes).
Thursday evening brought a good change of events and Meghan's blood pressure, heart rate and fevers all responded nicely to her changed medications. At about midnight Meghan's nurse came in and I asked what she had for Meghan and she gave me the name of one of the antibiotics which was discontinued by her doctor earlier that day because one of its side effects is seizures, and they were thinking possibly her seizures now were related to this medication. So I told the nurse that no, she wasn't supposed to have that medication and she said there were no orders discontinuing it or changing it to something else. I told her to call Meghan's doctor (he must love me), and she said she would rather have one of the PICU doctors talk to me about it. Well, in walks this doctor telling me that this was her broad spectrum antibiotic and that she needed it. I said I know exactly what it is and Dr. Mogul and I had three separate conversations about changing this drugs because of its threshold for seizures. This doctor told me that he asked the pharmacy about the name of the drug I told the nurse she was being switched to, and the pharmacy had never heard of it. I said, well, I suggest you call Dr. Mogul because I may be pronounicing it wrong, but I am sure she is not supposed to get this medication. About 20 minutes later the PICU doctor came in saying he spoke with Dr. Mogul and they were unclear as to why the order discontinuing the broad spectrum antibiotic hadn't been written, but that I was indeed correct and Meghan was NOT supposed to have gotten that this evening and I was correct about the name of the medication. So......now when you see me you'll know why the dark circles under my eyes....lack of sleep guys. It's one thing to have to be an advocate for your child, but it's another very stressful thing to have to worry about what medications she is being given correctly or incorrectly. Oooopps....sorry, we forgot to write that order...guess that's why she's seizing (UGH). Anyway, as my medical knowledge continues to grow by leaps and bounds (I'm pretty sure I can pass the Boards right now :), I also must be on top of a very long list of medications which are changing daily (something else to do with my time). Anyway, enough griping, Meghan slept very comfortably all night and did very well. I hated to see them come in this morning for her bone marrow aspiration because she was feeling so much better and laughing watching the Grinch. Anyway, that procedure went without event and she is resting very comfortably now.
So, I'll leave for now with my usual request....please if you or anyone you know is pregnant, please discuss the possibility of donating your baby's cord blood to the National Marrow Donor Registry and if you haven't done so already, please get registered yourself for bone marrow donation. This along with cord blood is saving the lives of many, many children, teens and adults who may not otherwise have a chance at life. Also, please remember to donate blood and if possible, platelets in Meghan's name. We continue to need them and she is being transfused with platelets even more now as they have again increased her from transfusing her at 50,000 to transfusing her when she goes below 100,000. This is ALOT of platelets. Also, we'd sincerely like to thank two very special PA's, Jeremy and Christine who have generously began donating white blood cells for Meghan. This procedure involves a shot to boost their counts and then approximately 2 hours of donation time and their generosity in this respect is overwhelming. So, say a little prayer each night for Meghan. We truly believe they are working and these setbacks are just a minor bump in our road.
Carol
Tuesday, December 31, 2002 at 08:23 PM (CST)
Hi Everyone. Meghan is Day +35 and still no counts. We have had some good news and I will give you details below. First of all, Meghan got out of PICU on Sunday. Her medications were changed and some new antibiotics, antifungals and antiyeast medications were added. The Bone Marrow Biopsy which was done last Friday was empty of white cells so they will repeat the bone marrow biopsy this Friday and every Friday thereafter until we have some counts either showing in her bloodstream or through the biopsy. Because Meghan has no white cells and has continued to have high fevers which they cannot pinpoint, they have decided to give her granulocytes (white blood cells) from a donor. Since Meghan was born with B positive blood she could not receive these white cells from me because my blood type is A positive. So, her dad was told he was going to be her donor since his blood type is B positive. Well, after much going back and forth we found out that he cannot donate because Meghan's blood type is changing from B positive to A positive (which is her donor's blood type). This is very good news....something is happening in there and it is positive.
So, one of the Physician Assistants who is O negative and CMV negative, volunteered to give Meghan white blood cells. This is a very generous thing for him to do as he will undergo shots to get his white cells proliferating, and then the actual donation time is approximately 2 hours. Meghan got her first donation of white blood cells this afternoon.
Meghan also underwent the repeat CT scan today before getting the white cells as we were told they could give a false reading on the CT scan. Her doctor came in to tell me that the two spots on the left side of her lung which showed on the CT scan of last Friday (which they think is possibly a yeast infection) were almost completely gone, and the spot on her right lung was smaller in size. We are hoping that with these "yeast" spots diminishing, the change in her medications and additions of antifungals and antiyeast medications along with the donated granulocytes will put an end to her fevers. She has continued to spike pretty high temperatures with them breaking through her Tylenol which is given every four hours.
So, all in all, it's been a pretty fair week so far. I am looking forward to a much better new year for Meghan. I will update this site as soon as we have some new information and hopefully donor cells! In the meantime.....I know, I know, you all really look forward to this part of the journal, so I won't disappoint......please, please, if you or anyone you know is pregnant, please talk to your physician about the possibility of donating the baby's cord blood. We also ask that you get out there and register with the National Marrow Donor Program and if you're already registered, we thank you from the bottom of our hearts and ask that you get the word out to your friends and family about registering themselves. This, along with cord blood is saving the lives of many, many children, teens and adults who wouldn't have a chance at life.
And, remember, please take the time to donate blood and if possible platelets in Meghan's name. She is being transfused quite a bit, and they have now changed her parameters in that they will be transfusing her platelets when she hits 50,000 instead of the 20,000 they were waiting until her platelets got to. So, to give you an example, she has had 3 transfusions of platelets since midnight last night with the third one being a short time ago. Platelets are a precious commodity with these patients, and I know it takes alot of your time, but trust me, there are so many patients that need them regularly.
So, I will end with a very big Happy Healthy New Year to you all. And for all the patients, moms, dads, aunts, uncles, grandparents and friends of children we have met at the hospital, online, or on the various caringbridge pages who are going through this Leukemia nightmare, an especially healthy new year to your loved one. We are all in this together and have become extended family to one another and you are all in our hearts and prayers. Remember to say a prayer for Meghan and all the children, teens and adults who are fighting this disease. Your prayers are working and are comforting to us all.
Healthy New Year to All,
Carol
Saturday, December 28, 2002 at 11:09 AM (CST)
Hi Everyone. Meghan is Day +32 and still no counts. She had a rough couple of days this past week but is doing much better. Meghan began having seizures Thursday morning around 4:00 a.m. She had a total of three seizures that day with the last one being around 1:30 p.m. This last seizure was witnessed by her oncologist and a neurologist who identified them as being "focal" seizures. During these seizures she is conscious, alert and responds to verbal commands. There is no loss of bowel or bladder continence and the seizure consists of twitching in the eyes and flexing and releasing of her arms. Anyway, an EEG was performed after the last seizure and the report was normal brain actvity with no residual seizure effects. A CT scan was also performed which was also negative (which is positive :) for us). So, Meghan was transferred to PICU Thursday afternoon for observation and has had no other seizure episodes. She was put on phenobarbitol to make sure there is no other seizure activity and her medication cyclosporine (which is what the doctors think caused these episodes was changed to another immunosuppressant drug).
In addition to all of the above, Meghan has continued to spike fevers and it was necessary Thursday night to have her (read me too) sleep on a cooling blanket. Her temperature is still fluctuating and they are trying to figure out what is causing the fevers. All of her blood cultures have come back clean with no bacterias, etc so they decided to have a repeat CT scan done of her lungs and abdomen to rule out any abscesses or fungal infections again.
So, she was scheduled for the following procedures Friday morning: a bone marrow biopsy (to see if there are any donor cells in her marrow); a lumbar puncture (to rule out meningitis (fevers and seizures); an MRI of her brain (to rule out any brain lesions) and the CT scan of her chest and abdomen (to rule out fungal and/or abscesses). Of course, for all of the following, they were going to put her under general anesthesia so an operative suite was scheduled for 10:00 a.m. Friday morning. Well, 10:00 am came and went without any word of what's going on with Meghan's procedures. 12:00 noon also came and went without any word. Now, mind you she is NPO all this time. At about 1:30 Tommy asked the nurse what was going on. She called down to OR and was told the procedures were canceled for the OR. Tommy asked the nurse why we weren't informed and she said, if I hadn't called down there, I wouldn't have known either. Anyway, apparently in someone's infinite wisdom at "the mighty Shands" it was decided that all of these procedures would be performed in the MRI suite (so much for a sterile field huh?). So, at about 4:00 pm with no information about the schedule of her procedures, Meghan asks for water. Since her lips were cracking and her mouth looked like the desert, I obliged and gave her one sip of water. Well, you would have thought she had a steak and baked potato the way the nurse started screaming that she couldn't have anything. I told the nurse she IS having a sip of water and that was that. The nurse said "well, I'm going to make you sign a form saying that I told you she was NPO and you gave her water for legal purposes". Oooops! Wrong thing to say to me! I told her listen, you don't even want to go down the legal road with me (and a few other niceties I will refrain from putting into print). So, Meghan had a sip of water (which actually was more like a drop of water since she really didn't want it afterall, but she did wet her lips and take a sip). Well, here comes her doctor saying "you gave her water" I told him yes, and he said well now the anesthesiologist will probably cancel the procedures. I told him that Meghan had a sip of water and that the Tylenol which they were going to give her orally would be more liquid than she had in water. He said he had been working on coordinating these procedures all day. And I told him that if that was the case, we should have been kept up to date with what was going on and that nobody has communicated with us when her pocedures (which were scheduled for 10:00 am and it was now after 4:00 pm) were going to take place and if they were even going to take place at all Friday. So, anyway, at about 4:30pm, we were finally taken down to MRI (which by the way is outside the building). I wonder what they do for patients who have to go there and it's raining or freezing cold? Anyway, Meghan got to go outside for the first time since November 18th so I guess that was good for her.
So, the anesthesiologist gets prepared, they call in a Physician's Assistant to do the LP and Bone Marrow and who by the way, NEVER introduces himself to us or discusses what he will be doing (shaking my head). So, apparently he does his job (which he also never comes out to tell us how it went, or that he is done) lovely patient care huh? So, Meghan is then ready for MRI. Does well and is returned to PICU. Once there they tell me they're going to place an NG tube to get the contrast down for the CT scan. I told the nurses no one has told me they were going to do that so of course, I tell them I want the doctor to explain why yet another invasive procedure is going to be performed. Yada, yada, yada (which is basically what I hear from them there), and after my voicing my concerns over the contrast, agree. Well, wouldn't you know.....guess who throws up the contrast (WHILE INTUBATED)? Do they just not hear parents or as is my guess.....they are way smarter than us????? So, after some anti-nausea meds, Meghan goes down to CT WITHOUT contrast! Told you so almighty doctors at Shands!
Anyway, I know this is long, but good grief what a week this has been! So, here are the results to date: original CT of brain: normal; EEG: normal; MRI: normal; LP: normal. We don't have the results of the bone marrow aspiration or the CT from last night of the chest and abdomen. I will of course update when we get the results.
In the meantime, here we go......if you, or anyone you know is pregnant please discuss with your doctor the possibility of donating the cord blood. Also, remember to encourage everyone you know to become members of the National Marrow Donor Registry. This, along with cord blood is saving the lives of many, many children, teens and adults who may not otherwise have a chance at healthy, happy lives. Also, please take 20 minutes and donate blood and if possible, platelets in Meghan's name. She continues to be transfused regularly. And, also, please say a prayer each night for Meghan. They're working and we need lots more to get us all through it. Thanks to all of you, and we hope you have a Happy, Healthy New Year!
Carol
Sunday, December 22, 2002 at 08:55 PM (CST)
Hi everyone! Day +26 and still no counts. The good news is that the bronchoscopy results were negative for any fungal infections. The pathology from the lung biopsy was also negative for any infections. There was a little bit of good news in that what they did find in the lung fluid was some white blood cells. Although they're still not detectable in her blood stream, they are there somewhere. If there are no counts by the end of this week, they have scheduled her for a bone marrow biopsy for Friday, December 27th which would be Day +31 to see if there's anything going on in her marrow. Of course we're hoping that won't be necessary and are hoping for our Christmas miracle! Wouldn't that be the greatest present to wake up to Christmas morning?
Other than that, Meghan is doing well. She is very tired most of the day and then perks up and eats late at night. They are having to stick her every 3 days for cyclosporine counts which as you can imagine I am not happy about. I have asked the doctor to give her a mild sedative prior to the blood draw because when they try to put the Emla creme on her arms she starts to cry and scream. I know she knows what's going to happen when they put that creme on her. So he said he would, so I'll see if that helps her anxiety any. Tomorrow is the first day they will use the medication on her so we'll see if that helps her stress level.
On a bright note, I put a small Christmas tree in her room and she just loves it. She knows "ho ho" is coming to bring her presents and she is pretty excited about it.
I'll update as soon as there are some counts or anything else to report. I'll end with my usual request that if you or anyone else you know who may be pregnant, talk to your doctor about donating the cord blood. We also ask that you become a registered member with the National Donor Marrow Registry. This, as well as cord blood is saving the lives of many beautiful children, teens and adults who wouldn't otherwise have a shot at life. We also ask that you please donate blood and if possible, platelets in Meghan's name. She's still getting alot of transfusions and will need more in the future. Also, please remember to say a little prayer each night for Meghan, they're working and we appreciate all the kind prayers, wishes and thoughts you have been sending our way. Also, remember to give your kids an extra kiss each night. They are truly blessings and we are lucky to have them given to us to care for. Also, don't sweat the small stuff, life's too short and kids will be kids....that's their job and the only thing that matters is their health and happiness. Merry Christmas to all of you and have a safe and wonderful New Year.
Carol
Thursday, December 19, 2002 at 12:30 PM (CST)
Hi Everyone. Day +23 and still no counts. Meghan underwent a bronchoscopy yesterday afternoon because she began spiking a fever Sunday night and they starting hearing "crackles" in her lungs. She had an x-ray that was read as normal, however, her doctor insisted that a CT Scan be performed (over the objection of the radiologist who thought it was unnecessary because he read the chest film as normal). So, once the CT was read, they saw "hazy infiltrates" on her right lung. The radiologist admitted that it was a good thing the CT was done because of course, there was something there. So, the bronchoscopy was performed. Meghan of course was sedated, although I kept telling the doctor it would take alot to put her down. After the procedure he told me he was amazed at how much sedation he had to give her because she kept fighting it. She had to get platelets before the procedure began and then during the procedure she got another transfusion of platelets. She had some bleeding, but it was controlled.
So she did fine, they did a biopsy and got some tissue off both lungs, then they "lavaged" her lungs which essentially means they washed them with some fluid. They also took some fluid out of her lungs for pathology as well. We are awaiting preliminary results today. Anyway, on a little brighter note, after she slept off the anesthesia, she awoke and starting eating bananas and spaghettios. I thought she wouldn't eat for a day or two due to having a tube stuck down her nose and throat, but Meghan rarely misses a meal, and there are few things that are going to keep her from one. Apparently this is not one of them :)
So, I'll update this page when I get the results of these tests. They're mainly looking for any fungal infections in her lungs. And, as usual.....please, if you or anyone you know is pregnant, please talk to your doctor about donating the cord blood. And remember, become a member of the National Marrow Donor Registry. Cord Blood and Bone Marrow is saving the lives of many, many children, teens, and adults. Also, please remember to donate blood and if possible, platelets in Meghan's name. We appreciate all of your thoughts, prayers and well wishes. And remember, say a little prayer for Meghan each night. They're working and we're greatful to all of you who have taken her into your hearts. Holiday wishes to you all.
Carol
Saturday, December 14, 2002 at 08:41 PM (CST)
Hi Everyone. Not much to report. We are Day +18, still no counts. Her doctor's guess is it will be Day +22 which would be Wednesday. My guess is Day +21. In any event, we have been told that once her counts come up we will probably leave the hospital within a day or two of that because she is doing so well and having no problems eating and especially due to the fact that she has had no mouth sores throughout the whole time.
Meghan's broviac broke again last night and has been repaired without incident. We have to wait 24 hours to see if it is usuable, and with alot of prayer, it will be. Otherwise, they will need to take her to surgery to replace the broviac and at this point she has no counts, so that makes surgery a little more risky. I spoke to her doctor by phone today and made sure that he understood I want everything done possible to continue the use of this broviac and that replacing this one should be as a last resort only. He is a great guy and completely agreed with me.
We had some other snafu's earlier in the week with the nursing staff. Medications about to be given wrong (was going to give something over 30 minutes when it was supposed to be timed to hang two hours), nurses dropping uncapped syringes of medication on the floor then proceeding to hook it up to this incredibly bizarre web of tubing, etc. etc. I made her take the whole tubing down along with the medication and throw the whole thing away. I was told she normally just wipes it off with alcohol swab and continues to hang it. I told her not here in this room you won't. So, not too many friends made here, but we've kept Meghan healthy (no thanks to some of the staff). Oh, another thing that had my head about to fall off was I've had two different techs come in and refer to Meghan as a he. Now, I know she has no hair, but puh-lease she looks like a girl, and if you really couldn't tell, ya think they might want to read her name on the wall???? Just a thought. I figured they might want to actually KNOW their patients. UGH! Enough griping here.
Otherwise, we're still waiting and watching. She still wears the Minnie Mouse shoes everyday :) Still eating everything in sight, playing and singing. I can't wait to take her back to Arnold Palmer so all her nurses and doctors can see how much she's grown and how much her vocabulary has grown. Two years old is such a great age!
So, I'll update as soon as something new happens and yes people don't hold your breath, you know it's coming......please, if you or someone you know is pregnant, please discuss the possibility of donating your cord blood to the National Marrow Donor Registry and encourage everyone you know to beome registered bone marrow donors. We also ask that you continue to donate blood and if possible, platelets in Meghan's name. She's using up more platelets than you can shake a stick at. Guess it goes with the territory. The platelets are one of the last things to come back on their own, so we'll be needing those for possibly months. And so, I'll end this on a note of thanks to everyone (I'm assuming you're still reading this and haven't stopped reading where I start my normal spiel), cause you'll all be tested on what's put into this update! Again, thank you everyone for your continued prayers and good wishes. I wish everyone could see her and see how great she looks and to truly understand that Meghan has not changed one bit (still feisty too).
Adoring Mom to Tommy Lee and Meghan,
Carol
Wednesday, December 11, 2002 at 01:25 PM (CST)
Day +15 and still doing great although still no counts. Meghan has not taken off those Minnie Mouse shoes except when I insist she go to bed. Otherwise, from the moment she wakes up she has them on. Meghan is eating, playing and laughing all day. She had some high blood pressure which they are treating due to some of the medications she is receiving. They are not concerned about it and have told us most of the children receiving these medications have bouts of high blood pressure. So, nothing really to report about that. She had a reaction (redness on her skin- no itching or anything else to go along- just blotchy)to an antibiotic she is receiving so they've changed that and she is doing fine.
As I said, Meghan is eating very well. Last night she had finished her soup and I told her it was all gone and she told me "go buy some". Pretty demanding for a two year old. The nurses thought it was hysterical and came up with several varieties of soup she could choose from. So, I cooked the soup and brought it in and by that time, she was on to wanting Spaghettio's. So, I cooked those and she ate that very well. This is all after she ate several bowls of pot roast cooked by her Aunt Laurie. So, it's eat, eat, eat and wait, wait, wait for her counts.
So, I'll leave for now with my usual rhetoric....If you or anyone you know is pregnant, please ask them to discuss the possibility of donating their cord blood to the National Marrow Donor Registry. This along with your registration into the National Bone Marrow Registry is saving the lives of many children, teens and adults who might otherwise not have a chance at life. Also, please remember to visit your local blood bank and donate blood and if possible, platelets in Meghan's name. She is receiving alot of platelet transfusions and some blood transfusions. I will update this site again and hopefully it will be with the news that she is starting to engraft and getting her counts up. In the meantime, please say a little prayer for Meghan tonight, they are working and we appreciate all of your good wishes for Meghan's speedy recovery and cure!
Proudest Mom in the world,
Carol
Sunday, December 08, 2002 at 07:37 PM (CST)
Hi Everyone. Day +12 finds Meghan doing great. Still no counts, but very good spirits and eating very well. Right now she is on her 5th plate of chips and dip. She had a good dinner and I guess this is desert! Whatever works.
Meghan spent the weekend with Daddy playing, eating and sleeping well. I took the opportunity to spend the day with Tommy Lee, his cousin Rian and my sister Laurie enjoying Christmas Disney World style courtesy of a great cancer organization, BASE Camp which provides outings and different things for children with cancer as well as their siblings. We rode alot of the rides, even saw Regis Philbin and Kelly Rippa shooting their Christmas Parade at Disney World Special which will aire Christmas Day. We got the boys on Thunder Mountain Railroad, and then, couldn't get them off of it.
Well, I have to go, one of the nurses here brought me dinner from home and Meghan has eyed the container and is wanting me to go heat it up right now. I can tell right now I'll never see any of this food :) So, I'll say goodnight for now, and because I know you are all counting on me to say this.....Please, if you, or anyone you know is pregnant, please have them discuss the possibility of donating their cord blood to the National Marrow Donor Program. Also, please continue to encourage everyone you know to register with the National Marrow Registry. It's as simple as donating a pint of blood to register and it's saving the lives of many, many children, teens and adults who would not otherwise have a chance at life. Contact your local blood bank for details. Also, we still ask that you continue to give blood or if possible, platelets in Meghan's name. She is receiving platelets every couple of days, and will be getting packed cells tonight. Also, please continue to say a little prayer for Meghan each night, they are working!
Carol
Tuesday, December 03, 2002 at 07:59 PM (CST)
Hi Everyone! Meghan has been doing very well since transplant. Her doctor came in yesterday and told me he didn't have anything to discuss with me about Meghan because she was "cruising thru". He said he couldn't be happier with her progress.
Day +7 brought a fever today. Everyone says this is to be expected. She is definitely not feeling too good today, but is still watching ET (I'm sure I have seen it now one million times :) Anyway, Tylenol brings it down, and she has been resting all day. They have started her on some other antibiotics to counteract whatever bug is stirring within her. I anticipate her being back to her old self within the next day or two. She usually doesn't let anything get her down and I expect this will be another one of those occasions where she amazes the doctors at her stamina. No one thought she would be up and around for as long as she was with no counts, so I figure today was just a resting day for her little body and she will be right back to playing tomorrow or Thursday (certainly in time for Daddy on Saturday).
Meghan has been eating well although today was a no eating day for her (except for the Ritz cracker I can't pry from her fingers). I cleaned out the frozen food aisle at Albertsons, so we're pretty well stocked. The doctor took one look at the snack cabinet I have in here and said Meghan was the most well stocked patient he has. They still can't believe she is still eating on her own and has not had to go on any supplements. I bet if the other patients would stop eating this crappy hospital food, they would be eating better too!
So, I'll end for tonight as there's not much to report. Just waiting for those counts to come up. And... you know the drill, please register with the National Marrow Donor Program and if you or anyone you know is pregnant, please talk to your doctor about donating the cord blood. It truly is saving lives. Also, don't forget to donate blood and if possible, platelets in Meghan's name. We have already had several platelet transfusions and will definitely need more. By the way, as I am typing this, Meghan is sitting on my lap watching ET and eating that RITZ CRACKER! Hey snack cabinet....here we come!!!!!! Remember to say an extra prayer for Meghan tonight. We're still not out of the woods, but we can sure see the light!
Wednesday, November 27, 2002 at 07:06 PM (CST)
Hello Everyone! Transplant Day has come and gone! So sorry I am late with this update. Meghan's cord blood transplant lasted approximately 45 minutes yesterday. It was scheduled to be infused for a half an hour but her blood pressure was a little high so they kept slowing it down. She slept through the whole thing! I however, watched the first drop go in and watched the last drop go in. It's pretty overwhelming considering this is what is going to bring her new life!
As for the high blood pressure, she was monitored and I was told this is a relatively common occurrence with transplant. Her blood pressure went back to normal and the rest of the day was uneventful. The doctor came in that evening and said she looked great. They keep telling us that "she's not going to want to eat", however, although she is eating less (probably the food), she is still eating. When we woke up today, there was a new twinkle in her eyes. The doctor came in and Meghan was smiling and jumping up and down in the crib for him. He said she looked fabulous and is a "very sturdy" girl. Meghan really likes this doctor. He has a very good way with her. No one has taken over Dr. Giusti's place in her heart, but this doc is sure trying to :)
Anyway, Day +1 and she was up running around (although we're quarantined....I keep saying we have cooties)because Meghan has two separate bowel thingies, one is VRE (not an active infection, but this bacteria or whatever it is has colonized in her bowels and the other is C-dificil. We have to wear gloves and gowns and masks when we go out of the room and everyone wears them when they come in to see her. I have heard so many times that most people on our floor have these two things (I guess they're trying to make me feel better about it). Anyway, neither thing seem to bother her at all and she shows no ill effects from it either. She actually likes wearing the gowns and gloves (remember all the gloves she wore at APH) and mask so it makes no difference to her at all.
So, I had a sore throat so I came home tonight to get some rest and antibiotics and will go back this weekend. I hope everyone has a Happy Thanksgiving tomorrow. We have so much to be thankful for including all of you who are praying for Meghan each day.
I will close this update with my usual boring rhetoric....please continue to donate blood and if possible, platelets in Meghan's name. We will be needing them. AND, please continue to urge friends and family members to become registered with the National Marrow Donor Program, and if you, or someone you know is pregnant, please ask them to discuss with their physician the possibility of donating their cord blood. This as well as registering with the National Marrow Donor Program is saving the lives of many special children, teens, and adults around the world who would otherwise have no other chance at life. As the mother of a beautiful, happy two year old, I thank you on behalf of all of the moms, dads, aunts, uncles, grandparents, friends and families of those suffering with any of the many blood related cancers and especially on behalf of those who may be contemplating or may have already had a bone marrow, stem cell or cord blood transplant and whose life you may have saved.
With thanks and extreme pride to my little fighter who has taken this all with a grain of salt and has not let one day get her down. And also, extreme thanks to Meghan's best friend, and my most beautiful son, Tommy Lee for being such a great kid thru all of this. Tommy Lee and Meghan: Someday you'll understand how much the two of you have helped each other (and your mom and dad) thru this. Even though you don't realize it now, you have made us so incredibly proud of your love for each other and courage to hang in there when the two of you have to be apart and you really don't understand why. Tommy Lee, I know in her dreams you're holding her hand each night and letting her know how much you love and miss her. You help her keep her fight and we love you for it.
Proud Mom of Tommy Lee and Our Fighter, Meghan Marie
Carol
Friday, November 22, 2002 at 03:43 PM (CST)
Hi Everyone! Sorry for the delay in updating Meghan's page. Was unable to get online from the hospital. Hopefully that will be straightened out this weekend. I'm home for the weekend to regain my sanity (and take a good long shower- without worrying there was someone waiting to use the shower after me or that something may be growing or mutating on the shower floor....I'll explain later in the update).
Ok......Meghan was admitted Sunday night and began radiation therapy Monday morning. Her protocol is that she would have one round of radiation Monday, and then she would go to twice a day Tuesday thru Friday. Since she is 2, Meghan has to be sedated for the radiation. Monday's treatment went very well with no problems. After her first treatment Tuesday morning, Meghan was a little combative with the nursing staff and did not want to be touched after waking from sedation. After each round of radiation and anesthesia, this became progressively worse, so once she arrived back up to the Bone Marrow Transplant Unit we let her go back to sleep after each radiation dose. This made all the difference in the world. There were occasions when I could not get her back to sleep (particularly after the morning sessions). In those cases, she was extremely tearful and fussy. This all would wear off after about an hour or so. She completed her 9th total body radiation at about 3:30 pm this afternoon.
I feel at this point, the radiation is kicking her butt. She is not eating very well and drinking very little. The problem with the eating is that 1) this hospital has particularly nasty food; 2) We're spoiled coming from Arnold Palmer where I can call at any time of day and order off a menu food for Meghan; 3) Shands has menus they pass out every day for the following day and that's all you can get; and 4) I've been fighting with everyone trying to get Meghan a regular diet ordered. "They" in their infinite wisdom looked at her age and put her on a toddler menu. It's very apparent they never looked at her, because they would then be clued in that Meghan doesn't miss many meals, and she certainly doesn't eat "strained or toddler foods". In fact, she never would eat that Stage 3 crap and went straight to table food. Anyway, enough of my ramblings.... I complained to anyone who would listen (or at least pretend to listen), and finally I got a visit from the dietitian who explained they could put her on a regular "adult" diet, but I had to be aware of the hospital's concern over choking hazards (DUH). Oh here Meghan, here's a chunk of beef, gnaw thru it if ya can....UGH! So, being as pleasant as possible (yeah right).. I gave my best girl scout pledge to thoroughly cut her meat up and not jam the green beans down her throat. So.....here comes dinner....an ice cream scoop of something made of chicken and rice casserole-thingy which sent my head shooting off of my shoulders. I went straight to the nurses desk babbling something about would they eat this crap. (Not making too many friends). Anyway, I went so far as to complain to the anesthesiologist working on Meghan each day for radiation, and he got straight on the phone and worked out some of the kinks for me. Great Guy.
Alright, enough about the food catastrophies. Meghan also hasn't been drinking so well, so today they finally put her on I.V. fluids to help with that. Had some bowel problems (probably asociated with new surroundings, not eating or drinking well, not feeling that great, and new medications). Looks like that has been taken care of now.
For the shower thing. Our room does not have a private toilet or shower (again, maybe I'm too spoiled) but.....puh-lease! I have to walk about 5 blocks (exaggerating just a bit), to get to the shower (which I might add, is pretty nasty). To go to the bathroom, I have to walk out of the unit and down the hall. Very comfortable surroundings.....what's that???another 4 weeks to go????AGH!
Enough about ME :)... Meghan starts chemotherapy tomorrow for 2 days and then transplant day is Tuesday. After transplant she will be getting medications to help her counts come back up quickly and from there it's just a watch and wait type of thing.
It has been one heck of a week! I hadn't seen Meghan smile so brightly all week until her dad came through the door. She was ecstatic.
So, that's it for now. Please remember to donate blood (and if possible, platelets) in Meghan's name. And remember, get the word out to everyone you know to please register with the National Marrow Donor Registry, and I know, I know....I'm getting boring with this but.....if you or someone you know is pregnant, please talk to your physician about donating the cord blood. This as well as bone marrow is saving the lives of many, many children and adults who may not have any other chance. Thank you on behalf of all of us parents, aunts, uncles, grandparents, and extended family and friends of children, husbands, wives or other family members living and fighting cancer every day for becoming a registered donor and possibly saving the life of a loved one of ours. Trust me, you never think it can happen to you.
And P.S: Please say a special prayer for Meghan tonight and everynight. She is one special little girl and the light of our lives.
Thanks for your prayers,
Carol (with pride, Meghan's Mom)
Friday, November 15, 2002 at 02:25 PM (CST)
Hi Everyone. Thanks for checking in on Meghan. We are back home for a few days from Shands due to a little miscommunication (way to start off a transplant huh?). Anyway, we were under the understanding that Meghan would be admitted on Wednesday, November 13, however, that was not the case. After staying up half the night doing laundry and sticking them into sealable ziplock bags (as is required), we drove the 2 1/2 hours to Gainesville on Wednesday. As we were walking in, we met up with Meghan's transplant doctor who informed us that he would not be performing the bone marrow harvest on Thursday, nor would he be there Nov. 15th thru Nov. 20th, as well as the entire week of Thanksgiving. If you know anything about me (as I'm sure some of the nurses at Arnold Palmer reading this can attest to, this did not go over well with me).
After a sleepless Wednesday evening, we went back to the hospital early Thursday morning (prior to bone marrow harvest) in order to talk directly with the transplant doctor regarding our concerns over his absence during the prepatory phase as well as the actual transplant day itself. After speaking with him and advising him of our concerns and him alleviating our concerns,we proceeded with the bone marrow harvest.
I was allowed to carry Meghan into the operating room (got some cute scrubs and booties out of the deal :). While there, I overheard the Anesthesiologist speaking with his CRNA about Meghan's weight. The CRNA told him she was 7 kg. I, of course, spoke up asking who they were talking about, and they said Meghan. I said she is not 7 kg. The Anesthesiologist said, we're talking in kilograms, not pounds. I said I know exactly what you're talking about and she is not 7 kg. She weighs 34.7 pounds which is 15 kg. The Anesthesiologist looked at me, and said "I didn't think she weighed 7 kg". All I can say is Thank GOD I was there!!!!! Needless to say, I will be on hyper-alert (even more than usual).
The surgery went well, with them extracting ample bone marrow from both hips. As usual, Meghan was up and about after waking up from anesthesia. She had a popsicle and talked and sang for everyone who would listen. Her transplant doctor stopped by Recovery to see her and asked if they had done the surgery yet. I said she's done and we're about to leave. He was amazed and said how good and pink she looked. I told him that's Meghan's way. She never let's anything get her down. They took out 200cc's of bone marrow (100 cc' from each hip), and she never flinched. She awoke from anesthesia happy and ready to play. That's Meghan's way!
I will update this website once we get into the hospital Sunday, November 17th. She will begin total body radiation on November 18th for 5 days and chemo on November 20th for 3 days. Her transplant date is Tuesday, November 26th.
Please continue to encourage everyone you know to become registered with the National Marrow Donor Program, and if you, or anyone you know is pregnant, please ask them to discuss donating their baby's cord blood to the registry as well. As you can see, cord blood and bone marrow is saving people's lives. Please keep Meghan in your prayers. And thanks to everyone who is registered with the National Marrow Donor Program on behalf of all of the children and adults around the world who are suffering from cancer or any other blood related disease requiring this risky, but life-saving transplant.
Sunday, November 10, 2002 at 09:18 AM (CST)
Hello Everyone! We're back from Shands in Gainesville where we were there for 3 days of consultations and pre-transplant evaluations. At this point, everything is a go for transplant. Meghan will be admitted to Shands Wednesday or Thursday, November 13th or 14th. Her own bone marrow will be harvested on either Thursday or Friday. They are doing this as a backup in case for one reason or another, the new cord blood does not engraft. If that were to happen, Meghan's own marrow will be put back in and we would be right back where we started from. This is precautionary only.
After Meghan's bone marrow harvest, she will begin 5 days of total body radiation beginning on Monday, November 18th thru Friday, November 22nd. She will also be getting 3 days of intense chemotherapy on Nov. 20th-22nd. The way this works is that November 18th (the start of pre-transplant conditioning) will become Day 8. We then count down (backwards) to Day 0 (Nov. 26th) (transplant day). After transplant, we begin counting back up the days toward engraftment (possibly around Day 20 or so).
It is during this point Day 0 through Engraftment that she may be weak and will certainly be at the most vulnerable time during this transplant. Once she engrafts, we wait for her counts to start coming up showing that the new cord blood is doing its job and beginning to make new and healthy cells. It is also during this point where she will likely be needing a number of transfusions of both blood and platelets.
Once that happens, and she is doing well, we will be moved out of the hospital and into an apartment in the Gainesville area (we must be within 20 minutes of the hospital). The stay there will be anywhere from 2 to 3 months (depending on how well Meghan does).
I will be updating this site with Meghan's progress once we are admitted and begin this journey. In the meantime, please continue to donate blood (and if possible, platelets) in Meghan's name. We also ask that you, or anyone you know who is pregnant, discuss with your physician the availability of donating your baby's cord blood to the National Marrow Donor Program. There is no effect on the mother or the baby, and it will be discarded if you do not have it saved for your family or donate it away. Also, please tell everyone you know to get registered with the National Marrow Donor Registry. You may save someone's life and we truly thank you for it on behalf of all those with cancer or other blood related diseases needing bone marrow or cord blood transplants.
Thursday, October 31, 2002 at 08:43 PM (CST)
Happy Halloween Everyone! Meghan was the most beautiful fairy princess in the world tonight and her big brother was the most awesome Spider Man and her cousin Rian was a very strong Power Ranger both relishing in having the duty of protecting her all night from the scary monsters. Super Heroes United! Meghan's first trip to the door was somewhat confusing for her. The kids knocked on the door and all yelled "Trick or Treat", so....Meghan did the same. Then came the good part, the man who answered the door dropped candy into her pumpkin. She looked at the candy, then back up at the man with a big grin and said "thank you". Then as the older kids were running to the next house, all you could see was a pink fairy princess running after them trying to keep up yelling and giggling "wait for me". It was all her night after that. After that first house she figured out all she needed to say was "trick or treat" and she would get candy......well, needless to say, her pumpkin was full by the end of the night!
On another note, it seems (at least to me) since my last post our road to transplant has gone into hyperspeed. We are scheduled to be at Shands next week beginning Wednesday, November 6th for three days of orientation (for lack of a better word) and meetings with the radiation oncologists, anesthesiologists, and other healthcare providers to discuss Meghan's journey through transplant. Once that is completed, she will have the weekend and then begin 5 days of total body radiation and chemotherapy for approximately 3 days. She will then have a couple of days for rest and then it will be transplant day. This is all assuming her counts (taken at the lab today) are back up to normal range. We will know the results tomorrow (Friday). If they are normal, Meghan will also be scheduled for another bone marrow biopsy to be performed here in Orlando either Monday or Tuesday of next week, before going to Shands.
Once we begin our journey at Shands I hope to update this site more frequently. In the meantime, we still ask that you donate blood and/or platelets in Meghan's name. As noted before, once she has been transplanted, she will be needing quite a lot of transfusions until her body starts producing her own blood. All of which takes time. We also ask that you, or anyone you know who may be pregnant to ask your/their doctor about having the baby's cord blood donated. It requires nothing of the baby or the mother (and will only be discarded if not donated or saved by the baby's family). We also ask that you please register with the National Bone Marrow Registry and if you've already registered, to ask five people you know, and ask them to ask five people they know, etc. It's as simple as giving blood and is truly "A gift of Life". You can save someone's life and we truly thank you.
Sunday, October 20, 2002 at 08:44 AM (CDT)
Hello Everyone. Thanks for checking back in on Meghan. After getting the recommendation from Sloan Kettering that Meghan should be transplanted as soon as possible, we again contacted Shands and asked that they run another donor search on Meghan's behalf. We were told that they had just been affiliated with two additional stem cell/bone marrow registries (unfortunately, the National Bone Marrow Registry is not the only registry and there are other smaller registries out there which are not affiliated, and therefore not searched as frequently). Anyway, as luck would have it, they were able to find three good 5/6 cord blood matches for Meghan. We went Thursday, October 17, 2002 and met with the transplant doctor at Shands who showed us the match he had picked for Meghan. He advised us that the mismatch was at a place where they could comfortably transplant her. He also advised that it was a particularly large unit and was "packed with stem cells". This is all very good news for us. We are anticipating going forward with the transplant within the next 3-4 weeks (or whenever Meghan's counts are back up).
In that regard, Meghan was readmitted to Arnold Palmer Thursday night (after our visit to Shands) due to a temperature. Her blood counts were particularly bad in that her platelets were 4,000 (normal range is 150,000-450,000), her white cells were 200 (normal range is 6,000-11,000) and her hemoglobin was 5.4 (normal is 11.0 - 14.0). She was transfused with both platelets and whole blood and as usual, acts as if she is not sick at all. We continue to ask that you donate blood and platelets on behalf of Meghan as she is still in need of transfusions (and we were told that once she is transplanted, she will need alot of transfusions of both whole blood and platelets until her body starts producing cells again). Remember, anywhere in the country, all you have to do is go to your local blood bank and tell them you want to donate on behalf of Meghan Mack and that her account is with the Central Florida Blood Bank. They should be able to credit her blood bank account (the actual blood stays in your community and helps your local community's blood shortage and helps Meghan in that her account here in Central Florida will be credited with a unit of blood from you). It's truly a gift of life.
For your peace of mind, Meghan is laughing and playing at the hospital (most of her toddler friends were there Thursday night, so she had many little ones to play with). She continues to delight the nurses with her silliness. She even brought her rubber snake and was scaring the nurses (wonder where she gets that from.....Tommy Lee :)
We will update this site with more information and transplant date as soon as all of that is set down and Meghan's counts allow her to be transplanted. For those of you who are, or know someone who is pregnant, please ask them to donate their cord blood to the cord blood registry. All you need to do is advise your doctor that you want your cord blood donated. Cord blood is saving children's lives and they are working on ways to help adults with blood diseases with cord blood too. Please keep praying for Meghan, and PLEASE register with the National Bone Marrow Registry, you could save someone's life.
Tuesday, October 01, 2002 at 07:05 PM (CDT)
Well, we have heard from Sloan Kettering regarding Meghan and it is their opinion that we should transplant her AS SOON AS POSSIBLE. I advised the doctor that we have only found a 4/6 match and he indicated that that was NOT good and we needed to continue our search. He indicated that the likelihood of relapse with Meghan was great. In that regard we ask that you tell EVERYONE you know to please become a member of the National Bone Marrow Registry. It's as simple as donating blood at your local blood bank and telling them you want to become a member. Remember, you do NOT have to be the same blood type as Meghan to be her donor. On another note, we go into the hospital this Thursday for more chemotherapy. Hopefully all will go well there. We will continue to update this site, so please check back with us. Also, PLEASE register with the National Bone Marrow Registry.....you could save someone's life!
Friday, September 20, 2002 at 08:22 PM (CDT)
Hi everyone! Sorry it's been awhile since last post, but we were hoping to hear news from Sloan Kettering about which direction we should go with Meghan's treatment. So far we have heard nothing back. Hopefully we'll get some input next week. In other news, Meghan was in the hospital Friday, September 13th for another round of chemo (this one was for the ALL side of the disease). She began Saturday morning with a wake-up call consisting of intrathecal Methotrexate (in other words, a spinal tap with chemotherapy injected into spinal fluid). This is strictly prophylaxtic as she has no cerebral spinal involvement in her disease. Unfortunately, these spinal taps with chemotherapy are a routine part of her treatment. Anyway, she did well with it. They give the kids a medication called Versed which is basically an amnesiac and they don't remember the procedure. They are also given a medication to put them into what I call "la-la land". As soon as the first dose is given to her she puts the funniest happy face on and always says with a big grin "HI"!. The nurses love it. That is usually the point where I run out of the room as I have no desire to watch them stick her spine with a needle the size of the Empire State Building. I must tell you all that when daddy is there, he is much braver than I and stays and holds her hand throughout the procedure. Anyway, she tolerated the procedure well and then began her round of IV chemotherapy. In one day, I counted 5 different types of chemotherapy that she received. But, again, Meghan danced through it all. Meghan was able to "clear" her Methotrexate level quickly and was out of the hospital on Tuesday morning. She was so happy when we got to her brother's preschool to pick him up. The whole time she kept saying "hold Tommy Lee's hand". She follows him everywhere and always wants to hold his hand. Sometimes, as 4 year old boys do, he doesn't want anything to do with holding her hand. Then, when you least expect it, he'll reach over and I'll catch him out of the corner of my eye reaching for her hand :) They truly are as Forrest Gump would say "peas and carrots" (just made to be together). We went to the clinic today for labs, her counts are fine, they usually bottom out between the 10th-14th day after chemo, so we'll see how it goes. We don't go back in for labs until next Friday, so hopefully we'll be able to post some news from Sloan Kettering next weekend. Please remember to register and become a member of the National Bone Marrow Registry. You can visit your local blood bank to do this. You could save someone's life!
Friday, August 30, 2002 at 08:51 PM (CDT)
Hello Everyone! We're just out of the hospital today after a 13 day stay due to fever/infection. Her blood counts remain pretty low and have not bounced back as quickly as they have in the past. As such, she has had three transfusions in three weeks of both whole blood and platelets. As is the norm with Meghan, she never acted as if she were sick and played and ran and ate and smiled and laughed her whole stay at the hospital. She now knows everyone's name there and makes a point to use her charm on them. She makes the nurses laugh as she wiggles her hips and sings "Shake, Shake, Shake, Shake your Booty". We had one incident while there in which her Broviac (the tube placed in her chest in which she gets chemotherapy as well as any medications and her bloodwork done) snapped and broke. There was quite a lot of blood as this tube goes directly into her heart. The nurses were able to repair the Broviac and it is now completely useful again. Again, this did not slow Meghan down (although I was a basket case)! Anyway, we are awaiting a third opinion on whether or not to do a non-related donor bone marrow or stem cell transplant. We have been explained all of the risks and complications which can arise (especially a non-related match) and Meghan's physician is not in favor of transplanting her due to the fact that we do not have a sibling match as well as the fact that he feels she is doing so well and responding excellently to the chemotherapy treatment. Her physician would like to continue the chemotherapy, while the transplant physicians we met with at Shands Hospital are in favor of transplanting her now while she is in a good solid first remission. We have contacted the Chair at Sloan Kettering and he is very interested in reviewing Meghan's original bone marrow biopsy (due to the rarity of this Leukemia) as well as her medical records and we are in the process of getting those sent up to him for his review. We will wait to hear his recommendations on further treatment and decide what course of action we should take with her treatment. We will continue to update this site with photos and journal entries, and we sincerely thank all of you for your prayers. Please remember to donate blood and/or platelets (you can ask that they be put towards Meghan's Account at the Central Florida Blood Bank) and get registered with the National Bone Marrow Registry. It could save someone's life!
Thursday, August 15, 2002 at 06:30 PM (CDT)
Meghan was diagnosed on April 18, 2002 with bi-phenotypic leukemia. She has undergone multiple rounds of chemotherapy and went into remission during her first hospitalization. She continues her chemotherapy and has adjusted well to being in and out of the hospital. In fact, we believe Meghan thinks she owns the place. Everyone knows her from the administration to the doctors, nurses, meal providers, security personnel and volunteers. She has them all right where she wants them...in the palm of her hand. She never ceases to make them all smile as she marches down the hospital corridors with either her father or I frantically trying to keep up with her and pushing her I.V. pole. By all outward appearances, you would never know she suffers from such a horrible disease. One of her doctors commented recently that they had never seen anyone keep their weight on as Meghan has done given all of the chemotherapy she has received. We are very proud of her spirit and she adores her big brother and is constantly trying to keep up with him (or him with her). We still ask for everyone to become registered with the National Bone Marrow Registry. You could save the life of someone.
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