Thursday, March 29, 2007 7:37 AM CDT

If anyone is interested in 50/50 tickets, just email me. The proceeds go to the ACS. They are $5.00 each. Last year's winner won $915.00.

I know I know I know…it has been a longggg time since last I wrote. Things have been good. We are busy as usual around here. It’s all about the kids and their school work and their sports. In the fall, Chris and Michael both played soccer and football. Nicholas played soccer. Through the winter they all played basketball. Michael’s team only lost 2 games in their official season, both to the same team. I believe he scored 190 points for the season minus his tournament scores from the beginning of the year…I forget to write them down. Right now Chris and Mike are playing baseball and Nicholas is playing baseball and soccer. Nick is only 7 and he is playing in the U10 division for soccer.

I am still babysitting and loving every minute of it. Brian still works with computers. We pretty much live our lives around the schedule of the kids. We miss Anthony every minute of every day. I wonder all the time how we did all that we did back when Anthony was in the hospital all the time. I still keep in touch with our CHOP friends…we miss them a lot. After spending night and day for months at a time they become your family and that is how I see them all.

The holidays were great. I think the boys all got what they wanted. Life was a little rough around here at that time in our lives…hopefully things are getting back on track now.

Nicholas will be making his 1st Holy Communion on MAY 5th; the date would have been Anthony’s 9th birthday. ANTHONY’S 3RD ANNUAL GOLF TOURNAMENT is on May 7th. The Relay for Life is on June2-3, Anthony passed away on June 2nd. So, the upcoming dates are going to hit us hard this year.

Chris graduates from 8th grade this year. I can’t believe that I am old enough to actually have a high school kid. Next thing you know he’ll be going to college.

So, nothing all that new around here…just sports, sports, sports. We hope you all have a wonder EASTER!!!

High…the weather lately

Low…As always…missing my baby

Thursday, February 22, 2007 4:11 PM CST

Update is coming soon!!!!!

I promise!!!!

Tuesday, June 13, 2006 7:35 AM CDT

WOW, it has been a long time!!!

So much has happened since last I wrote. The boys all finished up their basketball seasons. They all did great. Michael had 168 points for the season. Chris and Mike are actually now playing in their summer league basketball game. Michael plays for a Malvern league and they both play for an Ursinus league.

Nicholas is finished his soccer where he was a scoring machine. The last day he had 8 goals. His baseball is almost finished. He made the All-Star team, but can’t play in the game because we will be on vacation. He was bummed out about it.

School will be out in a couple of days and then we will get the opportunity to spend some quality time together…the kids and I. I feel like all we do is run from the minute they get home from school until we go to bed.

Our Relay for Life has come and gone. Our team raised over $ 23,000.00. Our goal was $15,000. so you can see we have far exceeded it.

I was very busy this year with so many things…one being our annual Golf Outing. I ran most of it myself. I learned to delegate some of it here and there that was a big help. We raised over $ 20,000. at the Golf Outing alone. It was such a nice event. The day went off without a hitch. It was supposed to pour down rain and Anthony must have held back the clouds because it was a beautiful day. We had a 50/50 that was so awesome. The winner won $ 915.00.

Another project I took on this past month was a school dance. Our youth minister left and they needed someone to step up and I did. Yes, I’m the biggest sucker there is. I organized a Luau Dance and it was so much fun. The 8th graders appreciated that they had their last dance and the 5th graders enjoyed their right of passage to join the older kids at the last dance of the year. Everyone had so much fun. We had a huge turn out…almost 100 kids. I’m going to try to get the kids to help me organize next year’s dances.

All in all the family is doing well. The kids love school, Brian still loves his job, and I love mine. We keep busy and stay out of trouble. We have had so many doctor and dentist appts lately, but we are all healthy. They were just routine, but they seemed to be all at once. Chris was diagnosed with Scoliosis recently. He sees a specialist at CHOP in KOP in August.

Chris and Brian went to New York with school. I finally had tea with a girlfriend that I don’t get a chance to see often and she lives around the corner. The boys went to a Philly’s game with friends. I went to my niece’s recital and I’m going to another one soon for a friend. That one will be at Lily Langtry’s. So, we have been busy, busy, busy!!!

We hope all of you have been well. Enjoy your summer. Enjoy your kids. Enjoy LIFE!!!

I still can’t believe Anthony has been gone now for 3 years. So, that is my low…

High…Summer is here!!! Vacation!!!

Thursday, January 5, 2006 2:24 PM CST

Soccer is finished for the season. Nicholas had an incredible year. He scored one goal his first game and nothing less than 4 goals per game after that. One game was 7 goals. It was amazing. The Pee Wee games are 30 minutes long and he only plays half the time. So, he scored 7 goals in 15 minutes.

Football finished up for Michael and Christopher. Nicholas has decided to play football next year…should be interesting.

Basketball season is upon us. Brian and I are coaching Michael’s JV team this year. Chris is on Varsity for his school and Nick is playing for a township team. Let the fun begin!!! Michael has scored 44 points for his team so far. He had 18 points in his 1st game and 14 in his 3rd game. Game #5 is this weekend. Chris has also scored for his team. Nick’s team is so much fun to watch. All I can do is laugh. They are so small.

School is well on its way. The kids enjoy it so much. There haven’t been any book reports due yet, so it hasn’t been so hectic. Chris made honors for the 1st trimester and Michael missed it by one grade in one class. Nick had straight A’s!!!

Christmas has come and gone. It is my favorite holiday and it sucks that I can’t share it with Anthony anymore, but I brought him up as much as possible this year so he could still sort of be a part of it with me.

We had a WONDERFUL holiday season. Everyone got what they wanted for Christmas. I had so much fun shopping this year. I am all about giving during the season. If I didn’t receive one gift for Christmas I would be just as happy. Maybe I am growing up and it just hit me that…OH MY GOD, I am growing up!!! Stop please let me stay this age forever.

Brian was sick over the holiday, but he is feeling much better. The rest of us have been sickness free…yes, I knocked on wood.

I visited the KOP clinic over the holiday and it was so nice to see the many faces we haven’t seen in awhile. I would love to visit the Philly clinic, but I don’t think I am up for it. Maybe one day I will meet Anthony’s primary nurse there and we can visit the floor and clinic together. Chrissie, his nurse, also left CHOP some time ago. I’m sure they miss her.

I’ll try to update again in a month, but I seem to be slacking in that area.

We love and miss you all!

High…The holidays

Low…they are over and Anthony wasn’t here for them

Thursday, September 15, 2005 6:18 AM CDT

The rest of the summer went by so fast. We enjoyed the pool so much this year, but now it is closed…bummer!!! We have spent EVERY weekend cooking out with the neighbors and enjoying their company. The boys have come and gone to be with their friends…sleeping here and there, etc…

BUT…

Life is back in full swing since school has opened last week. Christopher is now in 7th grade, Michael is in 5th and Nick is a big 1st grader. They all like their teachers. I went to BACK TO SCHOOL night on Monday and had a chance to meet the teachers and hear what the coming year will be like. It all sounds good.

Christopher and Michael are both playing football for CYO. Michael’s 1st game was awesome. He sacked the quarterback in the 2nd play of the game. Then the other team double teamed him the rest of the game. All three boys are also playing soccer. Nick scored his 1st game. He was disappointed to not score more than once.

We have 7 games every weekend…2 football and 5 soccer. Nick plays soccer just on Sunday but Chris and Mike both play on Saturday and Sunday.

Chris served (as an alter boy) for a wedding last weekend and he really like it. Now he has served a funeral, a wedding, a daily mass and Sunday masses.

Yesterday was my 14th anniversary and Brian and I each received a present from Anthony. Brian was listening to the radio and Anthony’s song came on for him to hear. I went to the cemetery and there were 2 purple flowers growing out of the dead grass area. Purple is my favorite flower. So, thank you Anthony. We love and miss you so much.

I joined the YMCA last week. My girlfriends and I plan on working out often. I hope we can stick to the plan. Check back with me at a later date.

So, I must leave you now…the day is about to begin and there are so many things to do. I will try my best not to leave you hanging for so long next time.

Remember to hug and kiss your children and listen…really listen to them when they talk.

I love you all…thanks for checking in!!!

High…Our gifts from Anthony

Low…kids back in school

Monday, June 6, 2005 8:59 AM CDT

Life without Anthny…

I DID IT!!! I actually made it through my speech without passing out. Friday night I slept very little (3 hours, at most) because I was so nervous about speaking. Saturday morning came quick. We got up at 6:30 and started packing the car to bring everything over to the track at the high school. We still had lots of decorating to do. Our tent site looked so great. The theme this year was RELAY AROUND THE WORLD…A World of Hope!!! Our country to decorate like was CHINA!!! We built a pagoda and had a dragon head at the top. We tied balloons together to make a longggg body that floated in the air from the front of our tent to the back of it…20 feet long.

The day started with stomach jitters and quickly turned to dizziness. I felt so lightheaded…so I ate something small so I wouldn’t throw up. Opening ceremonies were about to begin when I finally found Marguerite, Joe, Joseph and Kyle Santorine. Marguerite was to be the guest speaker after me. Marguerite and I met at CHOP. Her little girl, Elizabeth passed away a little before Anthony. We love you Elizabeth!!!

Here is what I said at the Relay…(my speech)

We all came here today because we know someone who has or had cancer. I stand before you involved with the relay because of my beautiful son, Anthony.

When Anthony was 13 months old he was diagnosed with AML (acute myeloid leukemia). My husband, Brian, and I thought that our world had come to a halt. However, Anthony found it to be just another day. He endured his chemotherapy, his radiation, his transplants, and his relapses like a champ. Don’t get me wrong he had times when he was limited as to what he could do, but he worked around those limits. When he was having so much pain in his knees and he couldn’t walk, he took up Playstation and became quite the player. When he had to stay in his hospital room for weeks on end, he made due with the situation and never asked to walk out his door.

It was hard to be around Anthony and not laugh. He made every day an adventure. He had fun drawing his own blood, even if it was behind the couch and no one was monitoring him, he loved to flush his lumens, and believe it or not he loved to take his medicine.

Anthony handled his disease so well because he didn’t know life could be any different.

Anthony did have the chance to live a somewhat normal life for a short period of time. After his second transplant he was in remission for 1 year, 11 months and 9 days before he relapsed for the 2nd time.

I’ll never forget the day…It was April 11, 2002---Anthony & I had decided NOT to wait for his blood work results at the hospital this time because they had been so good for so long. We went right home after his clinic visit. Within 5 minutes of us coming home, Anthony’s daddy walked in the front door and when I looked into his eyes I knew. I went screaming here and there about it not being true and yet Brian had not even opened his mouth yet. I called Anthony’s dr … I wanted to hear the words from her.

I needed to know how much time we had with our baby. She said he could go next week with an infection, but he could live for up to a year.

Well, we gave Anthony the time of his life while he lived out his last days here on Earth. Whatever he wanted…he got.

First thing on the agenda, was a shopping spree to Toys R Us. We walked out of there with a big moon bounce that he jumped in all the time and many, many other toys. Next was a second trip to Disney World making it 2 years in a row.

But honestly, Anthony only really had a few things he wanted to do before he needed to go…he wanted to turn 5, which he did on May 5, 2003; he wanted to graduate from his preschool, he did that in the middle of May 2003; and last he wanted to be at the relay and take his survivor lap.

Anthony loved the relay. That was all he could talk about for weeks before it took place. He had no idea that it would be his last, but on May 31, 2003 Anthony sat on his daddy’s shoulders, hooked up to his oxygen tank and proudly took his last lap around this track.

2 days later on June 2, 2003, Anthony passed away happy knowing he accomplished everything he wanted to.

Anthony fought hard and lived 1 year, 1 month and 22 days after his 2nd relapse.

So no matter what the weather is year after year rain or scorching sun…this is what I’ll be doing for Anthony…participating in the annual RELAY FOR LIFE…I hope you’ll join us.

Throughout this ordeal we have met (either personally or through email) many people with cancer. We have a web page on Caringbridge for Anthony where we have had people from around the world sign his guestbook…people from all over the United States, Italy, Canada, Australia, England, Mexico, Brazil, Spain, Norway, South Africa, France, and even New Zealand.

People have sent us their well wishes and condolences without ever seeing my face. What a great world we live in.

Standing right here next to me is Marguerite Santorine, mother to warrior Elizabeth. I met Marguerite at CHOP back in July of 1999. She was a whirlwind of information. She gave us the ins and outs of the staff and the hospital itself. We were clueless and she enlightened us. She has since moved, but we try our best to stay in touch…Thank you and now let me introduce to you… Marguerite Santorine.

Before my speech the senator and all the people on the platform with me said that they were there to support me and that they would be strong for me. Well, as I read the speech I could hear sobbing from several people behind me and in the stands. BUT, it was all good. As the flag was being raised up I had to grab onto Marguerite because I felt VERY faint…but I did hold it together.

Once again it was a magical year. It always is!!!

Thank you to all of you that came out and supported me and out team. And a big thanks to my team. You are all so wonderful.

This morning I received a call from Nick’s teacher saying, “Mrs Makoid, good Pajama day to you.” I answered by saying, “I’m on my way”. I totally forgot to send Nick in with his pj’s on. When I got there I noticed another little boy was also missing his pj’s. So, I ran to the store to buy him some, but I realized I forgot my pocketbook. I tore through my van and found about $8.-$10.00. I thought for sure I could find something for that…but I couldn’t. Then I heard this voice and I turned the corner (with my daycare kids in tow) and saw the president of our school. She lent me $10.00 and I was able to get the pj’s. I ran back to school and gave them to him. All of this before 9am…I need to go relax!

High…Relay

Low…Relay without Anthony

Wednesday, June 1, 2005 6:27 AM CDT

Life without Anthony…

As the Relay approaches we tend to think back to the Relay in 2003 when Anthony took his very last lap as a survivor. Two days after the Relay he passed away. He waited for that Relay. He loved it…he talked and talked and talked about it all the time. He inspired so many people.

I remember back in November of 2003 at the Relay kickoff meeting a young man got up to speak and out of his mouth came the story of Anthony’s last lap as a survivor. He talked about how Anthony probably didn’t have any idea that he was sick. He talked about how Anthony sat on his daddy’s shoulders hooked up to his oxygen tank and took that last lap. It brings tears to my eyes as I type it. Anthony was a stranger to this young man and yet he made quite an impression.

Tomorrow is the anniversary of Anthony’s death. I have so many feelings running through my body…so many things on my mind. I am speaking at our Relay. It will be my FIRST public speaking experience and I am so NERVOUS!!!

The Relay for Life is this Saturday and Sunday June4-5 from 10am Sat-10am on Sun. at the Pottsgrove High School. Come on out and join us. This is an experience you just can’t describe in words. It is all about feelings at the Relay. The emotions that flow on that day year after year are amazing. If you can’t make it to ours, I hope you experience a different one elsewhere…but do experience it!!!

Again, the golf outing was incredible. I truly hope everyone will come out again next year. Thank you to everyone who supported this event.

The school year for the boys is coming to an end. Nicholas graduates from kindergarten on June 10. How cute is that?

The sports should be winding down in a few more weeks. Then we have S U M M E R !!! We could all use a dose of summer. The pool is officially open, but it’s way too cold to swim in it. We have eaten out with neighbors every weekend for weeks now…we love to picnic!!!

I’ll update again after the Relay, until then…


High…Relay is almost here

Low…Anthony will only be there in SPIRIT

Wednesday, April 27, 2005 9:19 AM CDT

Mini update…Tuesday, May 10th.

We would like to say THANK YOU to all of you that participated in the 1st Golf Outing in Memory of Anthony benefiting the American Cancer Society. I don’t have the final figure, but I am guessing we raised between $8,000-$10,000. It was a huge success. So, again we want to thank all of you that helped make the day a great one…especially Deb Showers. Anthony, thank you for the beautiful weather. Honey, can you please make sure we have the same weather for the actual Relay For Life this year. Thanks baby!!!



Mini update...Today, May 5, 2005 would have been Anthony's 7th birthday!!! Happy Birthday little man. We all love and miss you!!!


Life without Anthony…

So much has been going on that I’m not sure where to begin.

Let’s start with Nicholas. He is doing awesome in school. His report card was superb. He learned how to ride his 2-wheeler over the weekend. He has scored at least one goal at every soccer game this season. Then last week he won the game ball for t-ball for the best play on defense. He loves his sports and he has so much fun.

Michael was drafted into the majors for baseball. He is only 10 and should be playing in the minors, but he is really good. He is good at every sport. He received honors on his report card. I didn’t expect any less from him. He has been very active and enjoying the outside these days.

Christopher is also on majors. Last week he hit an awesome double. This is his last year before he has to move up to the Babe Ruth league. Christopher had a great report card. He went up drastically in a few subjects. I am currently scouting out summer camps for the boys for their sports. I found an overnight one at a local college and I am considering it for Christopher. I just need to shake the money tree outback first. I’m sure it has a few hundred dollars in it somewhere.

Brian and I are doing well and keeping busy with all of the running around and all. Brian is the assistant coach for Nick’s soccer team...I’m as shocked as you are, trust me!!!

Final plans are being made for our trip to Duck, N.C. this summer. We are going with lots of people: 8 adults, 2 college students, 3 high school students and 5 grade school students. I can’t wait!!!!!!

Anthony still remains in our hearts and minds. Our Relay for Life is coming up and it was Anthony’s favorite event. His birthday is coming up on May 5th. He would have been 7. I can’t believe he isn’t here with us.

Don’t forget about Anthony’s Memorial Golf Outing on Monday, May 9th at Brookside Country Club. If you are interested in golfing or joining us for dinner just drop me an email at the address below.

High…busy busy busy

Low…Having to celebrate Anthony’s birthday without him

Tuesday, March 8, 2005 11:33 PM CST

Life without Anthony… IT JUST SUCKS!!!!!!!!

Imagine going through your day knowing you forgot something. What is something you can’t seem to live without…a cell phone, pocketbook, wallet, money, a car, a TV show, a cigarette, or maybe eating? Now picture never having that item ever again…you would want to just die and you would wonder how you are going to get through the day without it. Now imagine how I feel without my son. Not only do I have to do without him, but I also have to go on acting like it isn’t slowly killing me inside. I have to wake up each day and move on. I can’t lie in bed and cry away the day…I have 3 kids and a husband that need me to function…but, is functioning really what I am doing, or am I just going through the motions???

Here it is another night that I can’t sleep. I am having a hard time each night trying to go to sleep. So much is on my mind and I can’t seem to block any of it out to be able to go to sleep. I think I have a bunch of demons in my head fighting over what my thoughts ought to be at each moment of the day.

Anthony continues to weigh heavily on my mind. Cierra’s anniversary date is coming up on the 17th…it will be one year since she passed away. About 10 days ago I just couldn’t keep the tears from coming. I thought so much about Anthony. I went to his grave several times that day…looking for what, I don’t know. Maybe a sign that he misses me as much as I miss him. A little girl that was here last week asked me about 20 questions about Anthony and why he died. I wanted so much to scream out that I want to know all of those answers too. I made up answers that I wanted to hear.

The boys are doing fine. Report cards come out next week. Basketball is winding down. Baseball is about to begin. The Relay For Life is getting closer. I try to get involved in school and church, but my life doesn’t always allow for everything. I used to be so much more involved and now the time isn’t there. Though I think if there were more hours in the day I would nap in the afternoons.

We have been really enjoying the snow…thanks Anthony! I know it is a gift from you.

Taxes are finished…did you do your taxes yet???????? We went from getting lots back to owing a lot of money this year…bummer!!! Hope your taxes are going better than mine.

Nothing else to say…I feel like I jumped around a lot in this journal entry…sorry about that.

Monday, May 9, 2005 is a golf outing in memory of Anthony benefiting the American Cancer Society. If anyone is interested in playing or joining us for the dinner in the evening, just email me and let me know.


High…snow

Low…Missing my baby

Tuesday, February 15, 2005 9:51 AM CST

Life without Anthony…


Petty, petty, petty!!! Some people really need to get a life. If you find this web site to be tasteless, you need not read it. Think of this as my personal journal that I allow some people to read.

I received a call from our parish priest who had called to confront me about something on this page. I appreciate the fact that he came to me. However, he was given the information from someone else… Father and I discussed the matter reasonably and he voiced his opinion and I voiced mine. I did remove the portion that he had a problem with out of respect for HIM (father).

This site is not for everyone. Most people who have lost a loved one need to know that life does go on. That mundane chores and everyday problems can consume your time. That every minute doesn’t have to be about the child you lost…that you can move on and do.

So, on to bigger and better things…

Chris was sick last week and missed 2 days of school. Yesterday Michael came home sick and Nicholas got off the bus with a high fever. SO, they both stayed home today with me. I am also sick. No fever for me. I have a sore throat, cough and congestion.

Last week when I went to go see Anthony I noticed the groundskeeper took EVERYTHING off of Anthony’s gravesite. It was a very sad moment and one I hope none of you ever have to feel. I do enjoy visiting with Anthony every chance I get. I miss him so much. It’s amazing how my heart aches for him. How I long to hold him in my arms again. I know the day will come and I will be able to do those things again, but it’s the waiting that is killing me. What if I live to be 100? That would mean I would be without Anthony for over 60 years. It seems so long to wait.

Monday, May 9, 2005 is a golf outing in memory of Anthony benefiting the American Cancer Society. If anyone is interested in playing or joining us for the dinner in the evening, just email me and let me know.



Take care and God bless you all, even those that shouldn’t be reading this site.

High…togetherness and mundane chores

Low…nosey people who need to get a life

Tuesday, February 8, 2005 1:53 PM CST

****Due to some unforeseen problems with people reading the web page that shoudln't be, I will be putting a password on the account****

*****Please leave me a note on the page or email me with your address and I'll send you the password.*****

Life without Anthony...

What a day I had today. It reminded me of my days when Anthony was here. Murphy’s Law was in affect today.

Things were going great…the kids and I were up early and had time to get extra work done before school. At 7am I received a call reminding me that it was Fat Tuesday, “MARDI GRAS”. I quick jumped up and told Nicholas to go strip down to his undies because he was to wear Mardi Gras colors today not his school uniform. I had to find his Mardi Gras cape and beads…and fast. The bus comes at 7:12. I sent Chris outside to get some clothes Pins to attach Nick’s cape to him. Well, Chris started to scream his head off…something about his leg hurting him. As he removed his hand from his calf he screamed like someone was killing him. “My leg is bleeding…I have a hole in my leg!!!” I thought oh no, an ER visit for us. He sliced his other calf open a year or two ago.

I left Chris on the bench holding a cold, wet paper towel on his leg while I sent the other 2 boys off to school. My daycare kids showed up at the house and the dad said that the baby was full of poop from head to toe this morning and had vomit all over him. In my head I was thinking and you brought him here. It gets better…he didn’t bathe him, he wiped him down…so, he stunk! I had no choice but to take them all to the ER with me.

Things went smooth at the ER. They gave Chris the option to have it stitched or not. The dr. said it would leave a scar. He also said if Chris was a girl he would definitely stitch him. Chris said, “NO!” SO, off to school we went.

I signed Chris into school and stopped in at Nick’s class to drop some stuff off. My daycare kids love when we go to visit Nick at school.

Then, the babies and I met my friend for breakfast. We were enjoying our meal and all of a sudden Thomas began to vomit all over the place…the table, floor, himself (clothes, socks, shoes), the high chair, just everywhere.

Let me just mention that all of this happened before 10am. I think I should head back to bed for the day.

The days have been busy around here with basketball and school. The boys all love school.

Everything else around here seems to be going well. Sickness is down to a minimum. The EAGLES lost and that sucks. We still love them.

Monday, May 9, 2005 is a golf outing in memory of Anthony benefiting the American Cancer Society. If anyone is interested in playing or joining us for the dinner in the evening, just email me and let me know.

High…None to speak of this time

Low…you name it

Tuesday, December 7, 2004 11:35 AM CST

Life without Anthony…

Hi there everyone--I know it has been awhile since I last wrote sorry about that. Life continues to be as hectic as ever.

Christopher is playing basketball for his school and doing very well I might add. His game has improved sooo much since last year. He actually made the “A” team. Report cards are coming home on Friday. Chris has been attending the school dances here and there. There is one Friday night…we’ll see if he can go after we get the report card. The first dance this year an eight grader asked him to dance several times. She’s cute and the girl he had a crush on since he was in 2nd grade. She now goes to a different school.

Michael is also playing basketball for school. It is a 4th grade boys team. I haven’t been to many of his practices where I actually pay attention, so I don’t know how he compares to others his age…but he has height. Michael is doing very well in school…maybe even honors this trimester.

Nicholas…what can I say about Nicholas??? He keeps us laughing all the time. He is always full of question. He loves to sleep at his mom-mom’s house. He thinks he SHOULD be able to sleep there EVERY Saturday night since he doesn’t have school. He was an ANGEL for the Halloween Parade. He also has to be an ANGEL in the Christmas show that the whole school puts on. My mother-in-law made the costume and it is gorgeous. Maybe Brian will put up some new pictures of the kids.

So, this costume Brian’s mom made…I lost it for about 3 weeks. I knew that I didn’t want to put it away for good because he had to wear it again for the Christmas show. We looked high and low for this thing. I tore apart closets, drawers, rooms…I questioned the teacher, the kids, and Brian…Then, 2 nights ago at midnight I prayed on the floor of my closet to St Anthony to please help me find it. You know, “St. Anthony, St. Anthony please come around something is lost and can’t be found.” And it usually magically appears. Well, I got up from the floor walked over to my dresser and lifted a curtain. It wasn’t there. I was so bummed. I thought for sure it would be there. I figured we really must have thrown it away. Then, I shook the curtain and out came the angel costume. I was so excited that I ran to tell Brian and then I wanted to tell someone else. I was afraid my mom would kick my butt if I called her after midnight, so I called my sister.

Brian and I have been fine. He had some testing and procedures done on him, but he is fine. I am having my eyes done during Christmas break. I have wanted to do it for a long time. Wish me luck. Kremer Eye is doing it. I found out I can’t rub my eyes for 2 months…I don’t know how I’m gonna be able to do that. If you know me, you know I rub my eyes constantly. I have been practicing for a week not to do it and I still rub them about 10 times or more a day.

I almost forgot to mention Ashley, our life savor. She came all the way home from school to cheer me up and make cookies. Actually, I guilted her into it. She is also coming home for the weekend and helping me then too. God bless Ashley, she is the best...

Anthony…well, I still believe he is with me EVERYDAY. I feel him around me and I believe he watches out for us. I just wish I could see him and touch him. OK God if you are listening…I’ll do without seeing him if I can hold him again..OK??? I’m ready at any time…and not in my dreams, for real.

My family would like to wish you and yours a VERY HAPPY HOLIDAY SEASON!!!


By the way, I have RELAY FOR LIFE ribbon magnets for cars. If you are interested in one or many feel free to email me at the address below and we’ll get you them. They are $3.00 each.

High…Christmas is my favorite holiday and it is almost here

Low…Missing my buddy

Thursday, September 16, 2004 2:57 PM CDT

Life without Anthony…

You would think that months after Anthony’s passing I would move past the daily crying, but I haven’t. I cry when I drive, I cry in the shower, I cry whenever I get the chance.

My life doesn’t stop. I continue to keep up with the kids, their sports, their schoolwork, the house, the bills, etc… However, some days I wish I had the luxury of crawling up into a corner and sobbing all day long…by MYSELF!!! I don’t get much time to myself. When the kids are in school I have my daycare kids here. When they are at their sports I am either with them or at home with the others.

Enough about me…

Christopher is playing CYO soccer and football. He plays soccer on Mondays, Saturdays and Sundays. He plays football on Tuesdays, Wednesdays, Thursdays and Saturdays. Somewhere in between he goes to school, does his homework, sleeps and showers a lot. He is very busy and loving it all.

Michael is playing soccer for Westmont. He plays on Thursdays and Saturdays. He loves school and his new teacher.

Nicholas is playing soccer for our township and doing very well. He had 3 goals in 2 games and is very aggressive…unlike his brothers were at his age.

Brian is taking a college course to finish up his degree. He still loves his new job. He has been helping me cart the kids all over the place. He spent an afternoon in the ER with chest problems. He seems to be doing fine now.

I, too, was registered for one of two classes that I need for my college degree…but, I dropped it. It was Statistics II. I opened the book and laughed my ass off. Did I really think I could do that??? What was I thinking? Maybe I will be changing majors, because the class is REQUIRED for my degree. Isn’t there a way I could pay someone to give me a grade for the class??? Just kidding, unless of course you know someone who can help me.

Nicholas started kindergarten last week and he loves it. He was in trouble the very first day of school…does that surprise anyone who knows him??? He kept hiding form his teacher and eventually she just ignored him and he came out. After a long talking to…he has been good ever since.

Christopher missed the first 2 days of school (yes, he ruined his perfect attendance). He had a very high fever for 4 days…104.7 was the highest and I couldn’t get him below 102. At one point he had 800mg of Motrin in his body and 500mg of Tylenol and his fever was still rising. That was when it was 104.7. We showered him in cool water, we gave him freeze pops, we medicated him and then we were considering the ER when he finally came down to 102.5. We felt a little better.

Then there is Anthony…

Anthony has been at ALL of the boy’s games. Nicholas even chased him down at Chris’ soccer game. These days, Anthony comes to us in the form of a dragonfly. He always is with us and loves to play with Nick. He walked with us from our car up to Nick’s soccer field last weekend and Nick was so excited.

That’s all for now.

High…Anthony is with us

Low…I miss his touch sooooooo much

Tuesday, August 3, 2004 6:37 AM CDT

Life without Anthony…

Lots of things have happened since last I wrote…

As you can see the headstone has been placed and we changed the whole look to the grave by adding yellow flowers and removing other things. I haven’t seen the priest or landscaper remove anyone else’s stuff lately. That’s good for all of us.

The boys went away on vacation for a whole week from the 16-23 of July. Brian also took off of work. We stayed at home making some much-needed improvements. We pained our living room and foyer…in stripes (caramel and cream). We tiled the backsplash in the kitchen, replaced the whole side door and molding, pained 5 of the 9 doors in the upstairs hallway, the deck was partially sanded, but due to all the rain it did NOT get stained yet. We painted the family room right before Anthony passed away and 1 wall had gotten one less coat of paint then the other, so I painted one more coat on it and some of the vents were painted. Let’s not forget the 50 trips a day to Home Depot or the 10 trips to Lowe’s made every other day.

We tried to go out to dinner…by the time we had time it was the night before the kids came home and it wasn’t until after 9PM. It was a crazy week, but we really felt things needed to get done…and they did get done.

Christopher was an alter server for the first time at mass last week. He did great! We are so proud of him. Last week was the last week of summer playground held at our local elementary school.

The boys finished their summer reading and the assignments given to them by the school. That was a big load of off my mind. I bought all of their school stuff…school bags, book socks, pens, pencils, compasses, protractors, markers, crayons, glue, tissues, paper towels, etc… It was a lot to buy and I had to do it for 3 kids this year. Nicholas is moving into Kindergarten this year, Michael is heading into 4th and Chris has become a 6th grader. Oh no, they are getting older which means only one thing…SO AM I!!! Speaking of getting older…Kelsey (babysitter) turned 17 on July 15th, Ashley (babysitter) turned 21 on August 2, Ali (neighbor) is turning 21 on August 4th, my Nicholas is turning 5 on August 5th and yes, I am turning 36 on August 22…don’t forget to wish me a happy birthday.

So vacations are finished and school stuff is all ready, so all that is left to do is enjoy the rest of the summer.

On a sad note…Alex Scott (you know her…Alex’s Lemonade stand) passed away on the 1st around 4PM. She was recently on The TODAY Show trying to raise 1 million dollars for childhood cancer. I believe she was at $700,000.00 before she passed away. Last I heard she was at $800,000.00 since she passed away. This little girl was so amazing. I hate to say was…She is and always will be amazing. Right now she is playing with beautiful Cierra Lugo up in heaven’s garden. I’m sure Anthony and his NOW strong legs are chasing after both of them for a quick kiss.

Anthony and Cierra, Please help show Alex the ropes up there and help her to show her mommy and daddy that she is ok. Anthony, you have given daddy and me so much in the last year. Your presence is felt, please show these girls how to let there parents feel them. It is so important for them to know their babies are doing ok without them.

Please remember to give your children an extra hug today. I promise it will feel good. As you hug them…breathe them in. It’s so amazing how good it can make you feel, especially if you are down.

All my love, Dina

High…school work finished

Low…thinking about how many years I may live and not see Anthony

Tuesday, July 6, 2004 12:54 AM CDT

FINALLY...July 16th (one year from the date we purchase it) Anthony's headstone is here...CHECK OUT THE PHOTO PAGE FOR THE LONGGG AWAITED HEADSTONE.



Life without Anthony…

Dina here...with a vengeance!!! Can you believe that we have NOT received Anthony’s headstone yet. We gave them $3000.00 for a headstone on July 16th, 2003 and we still owe the other half to them. They promised us it would take 3-4 months. Well here we are 11 months later and NO headstone. By the way, the memorial place is PHOENIXVILLE MEMORIAL WORKS…don’t use them. I will give them the worst name in the world.

We contacted an attorney and after the Memorial place received the letter they have begun completion of the headstone. It SHOULD be placed this Friday or next Monday.

The cemetery priest is still on his high horse about removing everything from the gravesites. We have written letters to the paper and the archdiocese. I have called the priest and he puts the blame on other people. It is a mess.

I can’t believe Anthony is gone and I am still fighting for things for him.

Now for some good news…

The Relay for Life raised over $500.000 again this year. It didn’t just rain…IT POURED on us again this year. The track was totally flooded and we just kept on trudging. It was a moving experience. There was so much love and hope that filled the area. Brian’s speech was absolutely beautiful. Nicholas was dressed as a jester and danced away on the dance floor. The boys walked backwards on the track and sold Mardi Gras beads and glow in the dark necklaces and bracelets. It was great!!!

Since then Christopher has turned 11, school has finished, Nicholas graduated, Chris attended Sixers camp for a week, Michael attended football camp for a week, Michael is now down at OC, MD for a week with his friend, the boys finished up with baseball and are now playing basketball 2 times a week at Ursinus College. We keep very busy around here and try to stay out of trouble.

We have had picnics a lot and swimming has been so much fun this year.

On July 4th me, Brian, Gary (our neighbor) and Christopher went to a Phillies game. We sat 4 rows behind home plate and it was so AWESOME!!! I even convinced Brian to snap a picture of Mike Lieberthal’s butt when he was warming up a pitcher. (Mike didn’t play that day…I was upset). We could have reached out and grabbed the players. We had Diamond Club seats and could get food and merchandise for free. An air-conditioned clubhouse was right behind us and it was great. It will be very hard to go back to a game and not be treated like a queen. Oh, did I mention that we had people waiting on us for our food???

Oh, I almost forgot to mention that while we were sitting there waiting for the game to start a beautiful dragonfly flew by us and lingered for several innings. I think Anthony wanted us to know he was there with us…and had better seats then us.

High…keeping busy…always on the go

Low…I have spent many mornings crying and Nick catches me all too often

Wednesday, May 12, 2004 9:33 AM CDT

Life without Anthony...

****I just started selling AVON, if you want a book, call or email me****


Anthony just never seems to disappoint us…EVER!!!

The evening of his birthday…we heard thunder and tried to run to the cemetery to send off the balloons (sent by my sister, Maria, from Delaware) before it could start raining again. We live 4 minutes from the cemetery and it started down pouring about 3 minutes into the ride. As we reached his grave I begged him to make it stop raining and though it didn’t stop, it did slow down to a spit. We released his balloons and watched as they all flew up to him.

After my Relay for Life meeting, I went back to Anthony’s grave (that made 4 trips for the day) and found Brian’s sister there with her kids. I invited them all back for some ice cream cake for Anthony’s birthday. While we were there Brian was wearing an Anthony’s angels shirt that he had just put a decal of Anthony’s face on and down from the ceiling came a balloon and it was kissing Anthony’s face. It was incredible…AMAZING!!!

The reason I went to the cemetery 4 times that day was because I was promised that the headstone would be placed BY his birthday. It has been 10 months since it was ordered. Every time I call they say it’s almost done

I am asking for a special prayer request for my aunt who was recently diagnosed with Leiomyosarcoma. It is a rare cancer. She is waiting for surgery on June 4, 2004. Please, folks…say some prayers for her and her family…THANKS!!!

The RELAY FOR LIFE WALK is just around the corner…June 5-6 at our local high school. Brian is speaking at the Luminary ceremony. This will be our 1st walk without Anthony. It will be a very hard 2 days I’m sure.

The Relay’s theme this year is MARDI GRAS. Any suggestions for us on how to decorate our tent site???

Nothing else is really new. The older boys are still playing baseball. Michael has turned out to be a pretty good pitcher. Nicholas is playing soccer. Everyone is enjoying the last few weeks of school. I am driving myself crazy thinking about this summer.

It has been about 4 years since we have done ANYTHING outside of our home. SO lots of things are getting done around the house. We bought new lights for outside. Brian built a retaining wall...it’s beautiful. I made a heart around Anthony’s tree in our yard with white brick. We (meaning Brian) pulled 2 trees out of the yard. They were U G L Y !!! We are painting our deck furniture because it has some rust on it. I could go on forever. Just know that we are working hard when we aren’t working.

Anthony’s preschool put in a tree in memory of Anthony. It’s stems turn yellow (Anthony’s favorite color) in the winter. How cool is that???

High…Relay is coming along

Low…no H E A D S T O N E yet

Thursday, April 29, 2004 6:57 AM CDT

May 5th, 2004........ANTHONY'S 6TH BIRTHDAY !!!

I hope the angels are giving him a big birthday bash...just like he had every year with us.


Life without Anthony…

By the way, Christopher raised over $2600.00 for the American Cancer Society. Thanks you all who donated.

It has been over 10 months since Anthony has left us here. The days and nights seem to come and go. I can’t decide if the days are better when I let out a good cry or when I make it through the day without any tears at all. HE IS MISSED SO MUCH. Nicholas loves to hear stories about Anthony, especially if they involve him in it.

His favorite story is when Anthony was in for his 1st transplant back in October of 1999. Anthony was 17-months old and Nicholas was 2-months old. We had a huge room. We had Nicholas’ bassinet, a Johnny jump up, a baby swing, Anthony’s crib, my bed, a high chair, and bathroom with a shower and a tub and there was still enough room to add 2 or 3 more beds in the room. I was having a VERY hard time with them each waking in the middle of the night. I was getting something like “0” sleep. Brian’s mom came and took Nicholas for the night for me and all hell broke loose in the morning. When Anthony woke up in the morning and looked over the side of the crib…Nicholas was NOT there. He freaked out !!! He wouldn’t eat, drink, talk to anyone, let the nurses touch him or allow the Dr’s to examine him until Nicholas came back. He lay in Nicholas’ bassinet the whole time Nick was gone. I called Brian’s mom and she brought Nicholas back to the hospital right away. Anthony was so excited to see him.

Nicholas’ comment after the story was, “he really did love me”. I said of course he did. But Nicholas remembers how much Anthony pushed him away and didn’t want to play much with him in the end. I think Anthony was very jealous that Nick could do all the things that he couldn’t.

As for the here and now…

The other day I spent 20 minutes looking for Nicholas…he was no where to be found…then I double checked everywhere again and I found him sleeping on the floor of his closet…with doors closed. What a goofball!!!

Brian’s shingles seem to be better, my headaches have gone away…I recently had to have a tooth pulled because it was cracked way up inside…now I am getting braces. But the whole tooth thing was terrible…they couldn’t get it out. The dentist pulled at it for an entire hour before it finally came out.

Sports…the older 2 boys are playing baseball and doing very well. Michael pitched for the 1st time ever the other night and he had 2 innings of 3 up 3 down. The 3rd inning we were hit with a bad storm and the game was called. Nicholas is playing soccer. He does much better this year. Thank God!!!

Anthony’s birthday is coming up…May 5th. He would have been 6, in kindergarten, and playing with friends. Instead he is in the ground at a cemetery.

Listen to this one…the pastor of the cemetery sent a letter to all of us telling us to remove everything but the tombstone from the grave. This is the letter I sent to the paper…

In June 2003 my 5-year-old son passed away. I search all over for a cemetery that I thought would be suitable for his final resting place. I found that place at St. Aloysius Cemetery in Lower Pottsgrove. When you drive through you see how families truly love their loved ones. You see flowers, trees, mementos left by the grave. It felt warm…kind of like family.

After we buried my son we decorated his site with a beautiful fence (ever so small) and special things that remind us of him. This helps us to be able to bring our other 3 sons with us to the grave. They couldn’t bear to have to come and visit their brother by looking at the ground. With their help we made it a special place that they can go to remember their brother.

I was devastated tonight when my husband returned from the grave with a note from the Pastor telling us that we MUST remove the items from his grave because we don’t own the parishes land…even though we do have a deed for 3 plots. He actually said and I quote, “ I will tell you what you can and can not do in the cemetery…No, you can’t do whatever you want.”

What would Jesus say to that?

I want my son with me forever, but that can’t happen. I thought if we cremated him we could bring him home with us in an urn, but the Catholic Church says they must bury the ashes…we can’t keep them. So, I have done as we were asked and we buried him. Now we are being told that the plot of land we purchased for his final resting place is really not ours to do with what we please. We can’t have mementos or flowers or his tiny Buzz Lightyear glasses, a cemetery candle, the beautiful angel with a dragonfly on it, or the yellow rose that means so much to us.

I can’t believe that I actually have to go remove everything from his grave and visit a grave totally covered in grass.

Does anyone else feel this way or is it just my family???

Dina Makoid
A heart broken mommy!!!!!!!!

High…our health around here seems to be on the rise

Low…having to remove everything from Anthony’s grave

Wednesday, March 24, 2004 7:22 AM CST

Life without Anthony…

I wrote most of this last night...then I got caught up in homework...lucky me!!!

As you can see in the photo album Chris’ head is officially bald. The Mercury (local paper) came to the house Friday evening and questioned him. He spoke very well. We are so proud of him and what he has done. So far his total is over $ 2100.00. He may hit $ 2500.00 yet.

Saturday evening Brian and I headed to York to go to Cierra’s viewing. It was so good to have closure. I remember when a little boy named Anthony Jones passed away. It snowed real hard that day and I don’t do well in snow. I missed his viewing and funeral and I never had the closure that I desperately needed. Shannen did very well on Saturday evening. I was so proud of her. She hobbled around on 1 foot because her sciatic nerve was killing her. By Sunday morning she had to use crutches to get around.

The funeral was very nice. Shannen wrote a short letter and she read it all by herself and did a wonderful job. She made all of us cry. That wasn’t hard to do on Sunday. I cried so much I wanted to get away from myself. When the casket was closed I wanted so much to open it back up because I think it was the same casket that we used for Anthony and I guess I was hoping to open it and see him in it. It was a cold windy day and I was freezing. Shannen cried a lot on Sunday and seemed a bit foggy…all to be expected. All in all she did very well…we love you Shannen!!!

We stayed at a hotel (Holiday Inn) in York on Saturday night. When we were checking in Brian picked up a newspaper from Friday and there on the front page was Cierra’s picture. It was just so weird because it was Saturday and Friday’s paper was still there…almost like it was waiting for us. After the viewing I was really tired so we grabbed a bite to eat and headed back to the hotel to go to sleep. Sleep…we didn’t get much that night. The people in the room next to us would NOT shut up. It sounded like they were chatting on the bottom of our bed. By 3:30 am I called the front desk and complained (what me complain). They sent security down to tell them to be quiet. They kept it down but once in awhile I would hear a giggle or a loud laugh.

Chris went to the KIXX game on Saturday evening and he said he had a great time. He has lots of tests this week, so he will be studying his butt off when he gets home from baseball practice.

Michael spent Saturday night with my mom and he enjoyed himself as always. He is also at practice for baseball right now.

Nicholas, my little ham, is watching TV…what else is new??? He went to his cousin’s birthday party on Saturday then he slept at my mom’s house too.

Kelsey, our 16-year-old neighbor & babysitter, came home from Italy on Monday evening…we missed ya Kelsey. She’s like my daughter that I’ll NEVER have.

My headaches are still gone and medically speaking I am in good health. Brian is still having a problem with his shingles. The pain continues to give him problems. His shingles are in his head. Talk about painful! His blood pressure is doing great these days. Thank you, God!!!

Anthony, we miss you so very much that words just can’t explain. I hope you are playing and enjoying your friends that are with you. May you all be happy and pain free. I’m sorry we (those left behind) cry so much, but it’s just because we want to hug and kiss your sweet body and laugh with your awesome personality.

We are throwing around the idea of getting a bird or two…any advice for us. We have no experience at all with pets…just kids!!! We want a pet we can interact with but who needs little caring for. For instance, I don’t want to have to take a dog out in the middle of the night, or pick up poop in the yard, I don’t want gerbils running around my house…their like mini rats. I should probably just have more kids…just kidding Brian!!!

High…Christopher is raising lots of money for cancer research

Low…Shannen’s pain

Thursday, March 18, 2004 1:54 PM CST

Check out the pics...they are there...
CHRIS IS BALD !!!


Life without Anthony...

I must start my entry with such sadness…sweet Cierra has passed away. Anthony, I hope the 2 of you are running and jumping from cloud to cloud. This is the entry that Cierra’s mommy left in her journal…

March 17,2004
It is with unimaginable devastation that I must leave this post to you all! Cierra Angelica Lugo passed away in my arms in our home at 7:51am Wednesday March 17, 2004. She went peacefully, as if she just fell asleep. I held her and told her how much I love her and I don't want her to go but I know it's time and she can let go..it'll be o.k. and we'll see each other again in heaven...and I reminded her of the books we read about heaven and how she will be free of pain and ouchies. I told her, I love you so much Ican't even say, I love you more and more each day and I love you infinity (which we say every night to each other) and then told her it's o.k. and she stopped breathing. I held her in my arms for 4 hours before I carried her out to the funeral directors car. It was snowing slight snow flurries and the sun was shining~ It was beautiful. We meet with the funeral director tomorrow and we will find out when the viewing will be. It is open to public and I am planning a balloon release. I will post the info as soon as I can. Thank you all for your continued support through this journey we call life. I'm not sure whats next and I can't even imagine next without my Cierra but I am trying to take it one breath at a time for now. With Love, Shannen


Sadness filled my heart when Shannen called me yesterday morning. I want to say I was strong for her, but I cried right along with her. I wanted so much for Cierra to get the miracle that her and her mommy so deserved. Cierra, you will forever be in my heart right next to the place where I keep Anthony. I love you, baby!! Anthony, show her the ropes and guide her to blissful eternity…we’ll see you two soon.

On a happier note…Chris’ head is getting shaved tonight. He is shaving his head as a fundraiser for the American Cancer Society. So far it looks as if he’ll have about $2,000.00 by his head shaving tonight. We are so proud of him. The local newspaper is covering the event. We SHOULD charge money to feel his head when he is done. That could bring in lots more money.

Michael went to see the Phantoms play last week with his uncle and cousins. This Saturday Chris is going to a KIXX game with kids and parents from his school soccer team.

This Saturday Chris and Mike start their baseball practice, which runs into Michael’s basketball game. Thank God that soccer is on Sunday’s. As I understand it we are expecting upwards of 6 inches of snow tonight. So, maybe baseball will be cancelled. Speaking of the snow, Chris is going to be disappointed if there is no school tomorrow because he wanted to show everyone his head. Also that means that the newspaper won’t be going to his school to take pictures. Well, we’ll just have to wait and see.

My headaches have gone away…though I feel one coming on every now and again when I cry over the loss of Cierra. Maybe this next storm is the works of Cierra and ANTHONY…God has his hands full now because I don’t know who is bossier…Cierra or Anthony.

I have 10 minutes of peace before the kids get home from school…so I’m off.

Our love to all of you…remember Shannen in your prayers as she will be needing them for awhile.

High…SNOW

Low…Losing a beautiful little girl that meant so very much to me

Monday, March 8, 2004 9:20 AM CST

Life without Anthony…

Christopher’s fundraiser has begun. He is getting donations for The American Cancer Society for our Relay for Life team. The week of March 17th Chris is going bald…my own personal cue ball kid. He set a goal of $2500.00. We hope to surpass it. As of Sunday we have collected $775.00. He is well on his way since he just started on Wednesday. I hope you will help Chris make his goal.


So, I went to see Mel Gibson’s The Passion. People have come out of this movie thinking about the pain Jesus endured for us and priests think it will bring people back to the church…well,


I left the movie theater angry. After seeing all of that pain that Jesus endured I was angry with God. How can you allow your child to go through all of that? He could have taken him before he suffered too much. OF COURSE…THIS IS MY OPINION!!! Don’t go screaming at me in the guestbook.


Christopher and Michael started indoor soccer on Sunday. They played 5 on 5 and they were so worn out. I took them shopping after we left the place and I was afraid someone would think I just beat the crap out of their faces...they were beet red!!!


The boys will finish up their township basketball the 1st weekend of April. Chris won his 1st playoff game with school, but lost his second. So, that is finished.


Nicholas is just a ham. He is great!!! I love this kid so much…he can do NO wrong, until he does!!!!!!


Brian’s blood pressure is still wacky at times. He had shingles recently and he is also having bad headaches. Come to think of it Chris has had some bad headaches. Maybe it is something in the air around here.


Christopher and Michael went to see the Sixers practice at Villanova University on Sunday morning. They both liked it, but Brian said he didn’t. Iverson was on the bench for practice. We have met Eric Snow at CHOP when Anthony was in. We actually were on TV that evening that he came to CHOP.


I haven’t been very motivated lately…lack of energy and massive headaches for about 3 weeks now, maybe longer.


Did anyone see The Sopranos last night??? It was good, but it wasn’t as good as it SHOULD have been after a 15-month hiatus. I really missed the show. The music alone can get me feeling…ready to off someone. Just kiddin’

Remember to love, hug and kiss those you care for.


High…the boys are moving on…Chris’ fundraiser

Low…missing my baby…it’s been 9 months

Sunday, February 22, 2004 9:18 PM CST

Life without Anthony…

Anthony why is it that you can’t make God heal your friends that are still sick?????? Nicholas and I pray ALL the time to make Cierra better, but she gets worse all the time. Please Anthony, go to God and beg for us. You know how much I love her.

This past weekend was so crazy. We watched our niece and 3 nephews for the weekend. Friday night we went to B I N G O at Chris and Mike’s school. I forgot the dessert and Brian had to run to the store to pick one up for us.

Then on Saturday night my daycare kids slept here also. Brian and I went to The Night at the Races (back at Chris and Mike’s school) and hired a babysitter to watch the 9 kids back at our house. It was good to get out. We don’t get out by ourselves much. Back to the races…I called my horse ANGEL ANTHONY. He ran in the 1st race and was in last place and as they came around the last corner…#3 horse (ANGEL ANTHONY) started making his way to the front. In a split second he came out in front and won. I cried…I can’t believe that I was such a baby. It was a great way to start off the evening. I finished my Pina Colada (32oz) by the end of the 1st race. I haven’t had a drink in soooooooo long. It was just soooo hot in there. I had to run to the corner to buy a bottle of water. They were only serving soda and beer. I don’t like either one of them.

Chris has been doing so much better. I took him off of his medicine he was on and he perked up right away. He is so much happier.

The boys are still involved in basketball and will start indoor soccer soon. Schoolwork continues to be hectic around here…lots of studying for a 5th grader.

Please keep Cierra in your prayers…her site address is: http://mysite.verizon.net/res17xv3/

The reason for the Mardi Gras graphics you wonder...our RELAY FOR LIFE'S theme this year is MARDI GRAS. We'll be begging for money soon.

As a matter of fact Chris is getting his head shaved (bald) for the cause. In March Chris will collect donations (sponsor)and send the money to The American Cancer Society for our Relay team...Anthony's Angels. He'll be sporting a cue ball head for a while. So, if you see him congratulate him for his effort and don't tease him.

Tell your children you love them and kiss them often.

High…Anthony’s horse winning

Low…lack of sleep these days

Thursday, January 29, 2004 6:12 AM CST

I wrote this several days ago.

Life without Anthony…

Life seems to go on. As the days go on I start to forget little details about Anthony that I never thought I would forget. I wish there was a doctor who could make me remember every minute that I had with Anthony. There are some days that all I do is think about Anthony and then there are some days that I am so busy that I feel guilty that I didn’t think about him more.

The boys seem to be doing well. Chris is still involved with 2 different basketball teams and Michael also plays. Nicholas just amazes me daily. He has a new word or phrase every day. Some words and phrases are much nicer than others. Chris seems to be very angry lately. He can’t seem to channel it the right way. He just loses his temper at the drop of a dime. I have been spending a good part of each week working on different solutions to help him get through this…for lack of a better word…phase.

I wish I had the answer to every problem I seem to encounter, but I just don’t. I don’t even know where to turn for some of my answers. People call me all the time with questions or problems and I am ALWAYS able to help them and yet, I can’t solve my own family’s problems. I think it’s about time my family gets the break that we so desperately need and have the path cleared for us…smooth sailing from here on out.

There really isn’t anything new to report on the home front. Games, homework, school, activities and life in general keep us busy.

Until next time take good care of yourselves and hug someone that you love.

High…It’s gonna snow on Sunday

Low…Anthony will never come back home with me

Sunday, December 28, 2003 12:44 AM CST

Life without Anthony…

Our first Christmas without Anthony… We made it!!!

This entire holiday season we have felt Anthony all around us. We have thanked him for every front row parking spot when we’ve gone shopping in the rain and snow. We have felt him in every snowflake. We see things that remind us of him daily when he wasn’t even on our minds.

Christmas Eve visiting began at my mom’s house with lots of family and it ended at Brian’s mom’s house surrounded by all of his family. After all the gifts were opened, Christopher read a beautiful poem that you can find at the bottom of this entry. While Chris read the other boys handed out presents to their Aunts that were for their families. It was a gift from Anthony…a beautiful Pewter Christmas Tree Ornament. The ornament read:

Merry Christmas from Heaven
I love you all dearly,
Now don’t shed a tear,
I’m spending my Christmas,
With Jesus this year.

A dry eye was hard to find when Chris was finished reading. He did so well. We are very proud of him.

Christmas day we all opened presents and everyone loved what they received from Santa and us. Before heading to my Daddy’s house for dinner, we went to visit Anthony at the cemetery. As we jumped into the van it began to flurry. That was a good sign from Anthony that he was happy we were coming to visit him. Then, as we drove to my dad’s house, I was wondering if Anthony has feelings. Does he mind that we celebrated Christmas without him? Can he feel how much we love, miss and mourn him? As these thoughts and others ran through my mind…it began to flurry. We were NOT expecting snow on Christmas…Anthony just had to let us know he was with us. Thanks, Anthony!!!

Brian purchased a Hershey Chocolate Card for us from Anthony.
It read: 4ever here Love, Anthony. It was a great present. I gave Brian a cell phone for Christmas. As he opened the box I called the number and it rang and rang. It was so cool.

Monday, December 15, 2003 8:57 AM CST

Life without Anthony...

I haven’t felt much like writing these days. We are all doing ok. Now that the holidays are in full swing, I find I think of Anthony more and more.

Last night we went to CHOP in Philly for a candle lighting ceremony in memory of all the children who have left this world. At 7:00PM around the world people light candles in honor of their children and those that they knew. It was a nice evening. We didn’t stay long because the weather was really bad. We did see lots of people that we knew. I thought how good it was to see them and then it hit me…we have something in common and that is the only reason that we saw each other that night. We have ALL lost a child of ours. IT SUCKS!!!!!!

Thanksgiving was very nice and my brother-in-law, Joe, said the prayer and it was very touching…it made me cry right into my soup. That’s probably why it was a little salty…just kidding! The boys seem untouched by Anthony’s passing and are dealing with the holiday season just fine. Brian and I are doing as well as can be expected.

The older boys are playing basketball all the time now. Michael plays for the township and Chris plays for school and the township. Nicholas has nothing to do these days. Basketball won’t start for him until he is 6 (I think). He can’t do the swimming thing because he gets swimmers ear EVERYTIME he takes lessons. Maybe gymnastics are in order for him.

Last Friday Brian, my sister-in-law (Diane) and I went to CHOP’s KOP clinic to go see Cierra. You can visit Cierra's page by clicking here... Cierra's page Cierra was diagnosed with stage IV Neuroblastoma in 1999. In December of 2002 Cierra relapsed. This is a little girl that reminds Brian and me of Anthony. She is very frail like him; she has the same nasty attitude like him, and the same expressions. It is great to be in her company because it makes us feel like we are spending time with our Anthony. Cierra stole my heart years ago, but only since Anthony has gone have I needed to see her. So, on Friday we all went to see Cierra and bring her lots of presents from Brian’s family and our friends. We topped off Cierra’s presents with a box full of money for her Mommy. We wrapped up all the money and let Shannen (Cierra’s mommy) open it. We also gave Cierra 2 gifts to give her mommy on Christmas morning. I think she liked that idea a lot.

I have felt the need to help the world this Christmas. I have given until I can’t give anymore. We adopted a family for Christmas this year. I wrapped 11 boxes full of lots of things in each box for the little boy, and supplied all the food for a Christmas dinner…minus the turkey that the church provides. No, I didn’t come into money this year…on the contrary actually. But I do realize that money isn’t everything and to be happy with what and who I have in my life. I have a wonderful family and friends that surround me and fill my life. I feel sorry for those that can’t share in our lives. And yes, for those of you that read this page…you do share in a part of my life…a big part…you have given us support and strength to get through each and every day.

See what happens when I don’t update for a while. I get diarrhea of the mouth.

I’d like to wish you all a HAPPY, HEALTHY, SAFE holiday season. We love you all and thank you all for EVERYTHING you have done for us.

This holiday season…give, give and give some more.

High…I feel Anthony with me all the time…

Low…Just wish I could see him now

Thursday, November 20, 2003 6:56 AM CST

Life Without Anthony…

Some days I feel like Anthony was just here next to me
And other days I feel like he has been gone for an eternity.
I miss so much about him; his face, small frame, and humor,
I miss his smile, laughter, and crazy antics.
I miss the way he touched my hand, kissed my lips and hugged me tight.
I miss playing PLAYSTATION with my buddy, our long talks, and our rides.
I miss our trips to CHOP, both KOP clinic and Philly.
I miss his eyes, mouth, ears and nose,
belly, fingers and especially his toes.
I miss his badass attitude, funny faces, and his moods.
I miss his energy that he exuded.
I miss just watching him play with Nicholas.
I miss watching him sleep at night…when he did.
I miss counting to 100 to get him through a spell of pain.
To have that last night back with him all over again…I would give anything.
I swear I wouldn’t fall asleep. I’d count and count his pain away.
Please God give him back to me.
Some days I do just fine and days like today I fall apart.

I wrote that yesterday, Wednesday, and then had a small meltdown. I couldn’t write anymore. But here I am back again today, Thursday.

This morning I remembered something about Anthony that made me smile. When Anthony was little AND potty trained he would PEE all over Chris and Michael’s carpets every time he would get mad at them. Then they would have to walk through it to get into their bedrooms. They would scream at the top of their lungs and I knew exactly what had happened. I’d look towards Anthony and he’d be standing there with a grin from ear to ear. I’d spank him and he would swear to never do it again…until the next time they would piss him off. Sounds like something new to try the next time someone pisses me off. So, the moral of the story…don’t piss off a MAKOID…because you might just step in something wet!!!

The boys are great. Report cards should be coming out soon. Their conferences went well. Basketball is in full swing for Chris. Michael starts the 1st week of December. Soccer was officially over last weekend. My niece turned 16 last Sunday. I’m starting to feel really old.

My brother-in-law is being inducted into Villanova’s Football Hall of Fame this weekend…EXCITING!!! My brother is getting married on Saturday and I can’t wait. I have 2 sister’s-in-law that are pregnant. Yeah, I love babies!

Someone left flowers at Anthony’s grave, I’d like to know who they are from. Any hints???

Brian and I are hanging in there. NBC and KYW have both contacted me to do an interview. I had one set up for yesterday and it was cancelled at the last minute. It took too much for me to have to find sitters and get approval from their parents (day care kids) for me to set it up again…SORRY NBC. I may still give KYW an interview…we’ll see.

I went to CHOP last Wednesday and had the chance to see Dr Bunin (Anthony’s doctor), Chrissie (primary nurse), and lots of other staffers that we love and miss. I hope to get the opportunity to see the staff at KOP sometime soon. Kathy, if you are reading this…we need to have a stiff drink and chat!!!!!
That’s it for now. More later.
REMEMBER, the Reebok coupon that is in the last entry is good for this weekend. Feel free to pass it on to anyone you want. It is sooo worth it.

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

High...seeing old friends

Low...Missing my baby more every day instead of less

Monday, November 11, 2003 1:45 PM CST

Please feel free to go to the link below and print out a copy of this coupon to use at a Reebok outlet store near you.
Thursday, November 20th - Sunday, November 23rd


Reebok Coupon

Please forward on to ALL your friends, co-workers and family!

Monday, November 5, 2003

Here is a poem I wrote for Anthony a while ago...I just found it in my documents on my computer...

I'm not a poet, so brace yourselves...

A nother day has come and gone
N ow I must learn to carry on
T ouching you is in the past
H olding your memory must last and last
O ne little boy with so much fight
N ever was gone or out of my sight
Y esterday, was so long ago…tomorrow, seems so far away

F inding memories of you, has been my joy
A t each place in my house I find you, my boy
L ove and kindness surround me here
C omforting me to feel you near
O ver and over I sing to you, waiting in the wind to hear from you

M aking laughter is hard to do
A lways thinking about us two
K indred spirits I think we are
O nly…I see your light is so very far
I miss you more with each passing day
D ay turns to night…then back into day

Love, Mommy



November 3, 2003

Life Without Anthony…

Life has been up and down lately. One day when I was at Anthony’s grave I noticed a hole had been dug for the foundation for Anthony’s tombstone. I FREAKED OUT!!! The hole was partially on Anthony’s grave and the rest was on my plot and the plot next to where I’ll be placed. It should have been placed all on Anthony’s grave and 1 foot hanging over on my grave and 1 foot on Brian’s (Anthony is buried between where we will be buried).

Then I thought…maybe Anthony is buried in Brian’s plot. I had made a millions calls to find out where the problem was. All I kept thinking was that I was going to have to have Anthony dug up and moved one plot over. In the end…the hole was dug in the wrong place. It has since been remedied.

I had my first DREAM of Anthony where he was ALIVE. He was away at some school and I was determined to go there and get him. When I got there he was able to dress himself and tie his shoes. These are things that he couldn’t do because his knees were bad. In my dream I left him at school and came back home knowing he was dying of leukemia. I woke up and was so angry with myself for leaving him there. I cried a lot that morning. Later I interpreted my dream as he is happy where he is now and can do all the things he never could do before…and maybe I am more accepting then I want to admit because I was able to leave him where he is happiest.

My mom and her husband, Phil, had their marriage blessed in the Catholic Church a few weeks ago. During the ceremony Maria, my sister, took lots of pictures. While we were at the brunch Maria took the pictures to a 1-hour photo place. When we got the pictures back from CVS there were 2 pictures that had an orb in them. This orb had Anthony tiny face in it and it was on the move. It was WILD!!!

I had a medium come to our house a week ago. She said lots of things, but the thing that validated her was when she told me that I have a girl that can see Anthony and that Anthony plays with her. Well, I don’t have a girl, but I watch a little girl, Hanna. Hanna has told us 4 or 5 times in the last 2 months, when she wakes up from her nap, that she just played with Anthony and that she misses him. Cool, huh!?!?!?!?

Yesterday was Anthony’s 5 month anniversary with God. We miss you, buddy!!!

The boys are doing well. They all had wonderful progress reports. Report cards don’t come out for a while, but I do have conferences for them on Thursday. One morning when the boys were waiting for the bus, Chris came running in the house saying he has to go to the bathroom. The bus came when he was in there and Michael got on and we told Chris we would drive him into school that day. The next thing I knew the bus was back and waiting for Chris in front of my house. When Michael got on the bus the driver asked why Chris ran into the house and when the driver heard why…he laughed and went around the block to come and get Chris…he’s the greatest!!!!!!!

Soccer is over for Nick. He was so excited to get his trophy. By the way, Nicholas had a goal this year…for the other team but a goal all the same.

Christopher’s soccer season is also finished. He really enjoyed playing this year. His tournament weekend was crazy but we all had fun. I even worked the snack bar for 2 ½ hours. Chris started playing basketball…unofficially!!!

Michael’s season is still going on. He finishes up in 2 more weeks.

This week is going to be crazy for us. Yesterday was Brian’s 37th birthday. Tonight the tutor comes for 1-½ hours and I work MARKET DAY at school for an hour or so. Tomorrow Chris has a dental appointment in the am. Wednesday I am taking my Goddaughter down to CHOP for some testing and attending the kickoff for THE RELAY FOR LIFE at a local country club in the evening. Thursday I have conferences for the older boys. Friday is Michael’s birthday…he’ll be 9.

Last year’s relay raised over $560,000. Our team raised $6766.00. Thank you so much for all of your support. I hope we can count on you again next year.


“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

High…keeping busy

Low…5 months gone and I’m not any closer to being with my baby

Monday, November 3, 2003 11:30 AM CST

It's coming...I PROMISE!!!!!!!!!!!!!!!!!!!

Friday, October 10, 2003 9:42 PM CDT

Life without Anthony…it stinks!!!

Christopher’s stitches were removed on Wednesday. His skin is still apart at the tip of his cut. Thursday night (while getting soccer pictures done) a boy from school kicked Chris in the cut and he saw stars…LITERALLY!!!

Michael was sent home from school on Wednesday because his ear was BLEEDING. He has a really bad INFECTION. Michael was also diagnosed with PLANTER FASHITIS. He is unable to put weight on the heel of his foot when he wakes up, sits too long or at the end of the day when he has been on it too long. He now wears heel cups that should take some of the pressure off of his heel.

Needless to say Chris and Michael are both out of swimming for the rest of the session.

Nicholas is healthy…thank you, God!!! Nick did have his tooth filled and he was soooo good. He didn’t need gas or Novocain (spelling???). He just let the dentist drill away.

I have been getting a headache some time between 3-5 everyday. I started new pain medicine for them. I also just diagnosed myself with a UTI. I am self medicating in hopes of not having to go back to the doctors.

Light the Night was last weekend. Our team raised over $2500.00. Thank you to everyone that participated and/or donated. What a great cause!!!

Speaking of great causes…next years RELAY FOR LIFE, we were asked to speak at the luminary ceremony. I am crowd shy, so Brian will speak. Who would have thought I can’t speak in front of people. I know it sounds funny if you know me.

Soccer continues, the tutor still comes weekly, basketball has begun and homework is KILLING me.

Our phone rang at 3:51 am. I wonder if it was Anthony trying to tell me something. I wish he wouldn’t have hung up before I answered. Anthony, if you are reading this… call me again, I’m waiting.

It has been over 4 months since Anthony left us for a party in the sky…he is so missed!!!

Nothing else is new……..until next time……..

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

High…raising money for a good cause

Low…I can’t find Anthony

Monday, September 29, 2003 10:03 AM CDT

Life without Anthony…

Last night Brian and I spend a few hours in the ER with Christopher. He seems to think that he is some kind of superhero that can jump from the floor to the top of his desk. He said he usually can make it. Well, last night he didn’t and the desk went through his shin. It looked like a huge chunk was missing from his leg. He has 8 stitches and a hurt ego. I do believe that he said he would NOT be attempting that again.

Brian had a MRI a couple of weeks ago and things are fine. Brian had a migraine several weeks ago. It is just not something that you start to get at his age (36). Most people that get migraines have them all their lives or get them by the time they hit 25. We were a little concerned for a while. If anything, it scared him enough to take his medicines daily for his blood pressure.

Our schedules continue to be hectic. The boys now had their practices for soccer moved and they both have to be at 2 different fields at the same time. If Chris is late he has to run laps. Well, that shouldn’t be a problem for the next 2 weeks. He is NOT ALLOWED to play sports or participate in gym class.

Swimming is going well. Nick THINKS he can swim without a bubble…NOT!!! Michael is swim team material. I, however, am not swim team mom material. So that won’t be happening for Michael. Saturday we went to my sister’s house in Delaware and I almost made it home without an IBS episode. I just can’t leave my house.

This Saturday is the Light the Night walk. I hope I can make it. Just thinking about it makes me want to run to the bathroom.

Chris’ soccer game was cancelled yesterday, but Nick still had his. I worked the snack bar for a short time in the afternoon. Everything at the field was muddy.

Wednesday Nicholas has his tooth filled. I feel so bad for him. Maybe they will give me some gas too!!!

More at a later date!

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

High…BUSY,BUSY,BUSY

Low…missing my baby, stitches

Thursday, September 25, 2003 8:35 PM CDT

Ok...so I lied...........

***********the UPDATE will be here soon***********

Studying with the boys every night is killing me.........

Calgon take me away!!!!!!!!!!!!

Monday, September 15, 2003 2:13 AM CDT

Life without Anthony…

**********I PROMISE YOU ALL AN UPDATE BY THURSDAY**********


Monday was a tough day for me, but Tuesday was even harder. Nicholas asked me if Anthony could PLEASEEEEE come back home because he doesn’t have anyone to play with since the boys went back to school. I don’t know why but I just fell apart on Tuesday. Chris kept asking why I was crying and I couldn’t pinpoint one particular reason. My health and Brian’s health seem to be competing to see who can be sicker. Once I get some results this week I’ll go into more detail. Hopefully, everything is fine and the stress and worrying will be the cause of all our problems….SAY A PRAYER!!!

Nick had started sleeping in Anthony’s bed a few days ago. He told us he thinks Anthony is sleeping with him because he can feel Anthony when he’s in bed. I wish I could feel him.

Monday I pulled Chris out of school early for his dental appointment. Hopefully, by Christmas he will be done with his pallet expander. The tutor started Monday night. I really liked him. Then I went to back-to-school night and met the boys’ teachers. It was all fine and good until Tuesday came. Chris’ teacher seems to have a problem throwing with throwing school bags in her classroom. If they aren’t on a hook, she throws them. She doesn’t care what’s in them…she just tosses them. It 1st happened on Friday then again on Tuesday. I wrote a letter that night & asked her to please stop throwing his bag. It doesn’t hang up because it has wheels. I also told her that his $ 900.00 pallet expander is in there along with his calculator. So, what did she do??? She got pissed that I wrote a note and made the kids with wheels go to the coat closet and she told Chris to throw his bag the way he thinks she threw it. He told her my mom wouldn’t like it. She told him to do it because she was telling him to do it and she was the one who was there.

First, let me mention that this is a Catholic school. Now let me tell you she just told my son to disobey the 4th commandment…Honor thy father & mother.

She did realize that the bags can’t fit on the hook & is allowing them to place them neatly on the floor. BUT if one falls down & is not picked up right away…she’s gonna throw it. I had it with that. I called the principal the next morning and we had a talk. Now if she does it again. I am going into her class and taking my arm and swiping her desk so that EVERYTHING falls to the floor. Don’t these people realize that I don’t take any S--- from people?

Tuesday & Thursday the older boys had soccer. Wednesday they all had swimming. Nicholas had his first dental appointment this week. He has a cavity. The dentist said he is an orthodontist kid if he ever saw one. Nicholas’ teeth are so crowed that they are going crooked. His cavity is between 2 molars that are practically inside each other…they’re soooo close.

Friday Nicholas had a play date with Nicole (little girl in his class). At school on Friday she kissed him...but they said NO SAW. Nick has loved this little girl for a while, but she's moving. So, he'll learn heartbreak at a young age. When they were playing in the basement Nick came up and said that she was trying to kiss him but he told her that his mommy said no kissing in the basement. Do you think he'll still say that when he's 16??? She enjoyed playing with him because he played dress-up with her right down to the blue high heel shoes. He is just in touch with his feminine side. More men should try it.

Saturday’s soccer games were sooooo MUDDY!!!!!! Michael played at 9:00. He was goalie and he kept falling. The kids on the field were falling over each other. It poured and they kept on playing. Then Chris played at 10:30. It rained for that game too. Today at noon I took Nicholas up to the field for his game and there was not a car in sight. They cancelled the game and never even called us. JERKS!!!!!!! Chris plays again today around 2:30.

Nothing else is really new.

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

High…I’m finally starting to take one day at a time

Low…medical problems, cavity, teachers

Sunday, September 7, 2003 6:36 PM CDT

Life without Anthony…

Tomorrow is going to be a VERY difficult day for me. Nicholas will begin his last year of preschool and it WOULD HAVE BEEN Anthony’s first day of kindergarten. For all of you mothers out there…you know how emotional the 1st day of school can be for us…now imagine not being able to experience that day with your child. It is heart wrenching. I’m sure the tears will flow a lot and I’ll think of Anthony ALL DAY LONG, but Nicholas will help me get through it. As a matter of fact I think Nick and I will have a picnic lunch with Anthony tomorrow. We’ll bring our blanket and have Anthony’s favorite…CHICKEN NUGGETS FROM WENDY’S!!!

Anyone interested in purchasing an Entertainment (called KIDSTUFF) book let me know. The cost is $25.00 and the school gets 50 % of the sales. I’m trying to sell as many as possible. It serves the BUCKS, BERKS & MONTGOMERY areas of Pennsylvania.

I’d like to say thank you to Jeanette for my dragonfly pendant and to Ali for making me a necklace to put it on…thank you to Tina (from Brian’s work) for the Dragonfly lights. I love them.

Yesterday started our weekend madness. Chris had a soccer game at 9am and had to be there by 8:30 and Michael had a soccer game in a different town at 10:15 and had to be there by 10am. We saw most of both. They both played very well. Today Nicholas had his 1st ever soccer game at noon and he did GREAT!!! He was so enthusiastic about the game. Then we rushed over to Chris’ game at 1:00.

I did have my follow up appointment with my surgeon and everything looks good. I told I feel great and that I was upset at how hard the tissue is below my incision and he said it was a good thing…it’s healing. I told him 90% of the pain is gone and he said still no picking up kids, vacuuming, moving furniture or PAINTING…at least not for another 2 to 4 weeks.

Friday I went to CHOP’s KOP clinic and spent 2 hours with Cierra and Shannen. I enjoyed being there and spending time with them. Cierra even talked to me a bit. Megan actually showed up with her new baby. I held her for a while. It was good to see all of the staff. I really miss them. Kathy O or anyone else that may read this from CHOP…tell Trudi that I rented Dragonfly (the Movie) as soon as I got home and we watched it the other night…WEIRD!!!!!! Crazy and a little feel good feeling!!!!!!

Wednesday night the boys all had swimming and they did OK. They like swimming in the winter so I hope all the schedules pan out for them.

I’d like to say that I think of Anthony less each day or that I am handling things better, but the reality is I can’t be left alone. All I do is think about Anthony and wish him to visit me in HUMAN form. Weird, huh?!?! I need so much to feel his touch, his tight squeeze around my neck or his lips pressed up against mine. I don’t want much, I just want him with me for 1 minute a day…a lousy 60 seconds.

Tears are coming and so I’m going.

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

High…boys like school, I still love my bedroom & we are busy, busy, busy

Low…just one minute a day…and I can’t have it

Wednesday, September 3, 2003 5:13 AM CDT

*****Dragonfly and rainbow pics have been added*****

Life without Anthony…

Here it is, the first day of school. Everyone is sleeping but me. You would think I am the one going to school…with a bundle of nerves. The boys (Chris and Michael) are ready and very excited to be heading back to school. I think we have everything for them. If not…I’m sure they will hear about it at school today.

Nicholas starts school on the 8th. I keep telling him I want him to stay home with me, but he said he’s going! Three mornings a week I’ll be a total wreck. Feel free to call or stop by to say HELLO! I will need the distraction.

Yesterday was 3 months since Anthony has been gone. We miss him so much. I see him everywhere I look. His pictures are hung up all over the place. I find loose pics here and there. I see his drawing on the wall with permanent marker and think…I’ll NEVER paint over them. I see him in all my boys. Nick and I watch videotapes of him all the time.

Every night before bed Nick says his prayers and then stares at the ceiling and talks to Anthony as if he is there. He tells him everything about his day. He doesn’t forget one detail. He even reminds him that we were at the grave to water the grass or to visit him.

I am recovering well from surgery. I can do almost anything, but vacuuming hurt me the other day, so I’ll be waiting a little longer before trying that again. The bruising feeling has gone away, but the burn is still there on occasion. I can deal with that. I finally made my follow-up appointment for this Friday. The stitch I popped healed very well.

Brian has been very busy with work and the boys’ schedules are going to make us even busier. Monday's we have a tutor come here, Tuesday’s and Thursday’s the older boys have soccer (one at the township bldg. and one at a public school in the next town), Wednesday’s all 3 boys will have swimming from 6:30 to 7:45, Saturday’s Chris and Michael will have their soccer games and Sunday’s Nick will have his soccer game. So, no one had better ask me to do anything on Friday's because I will have to decline. Friday is catch up day. You know…take a breath day, do nothing. Do nothing that would be nice.

I start babysitting full time (5days a week until 5PM each day) starting on the 15th. So if you need me, I will be home ALL DAY LONG…except when I drive Hanna and Nick to preschool three mornings a week.

I realized the other day that I know more children that have passed away from cancer than I know of who survived. That is so sad! Statistics say that these children should be surviving, NOT DYING! Why do so many children get cancer? What is our lesson to be learned there? I still try to make sense of it all. These are questions I tried NOT to ask while Anthony was going through treatment because I wanted to believe that he would make it. I didn’t want to question God for fear he might take him and look, he is gone anyway.

The last year of Anthony’s life I played out in my head exactly how I wanted his funeral to be and whom I needed to do certain things for me. It all happened as I had planned. Everything was perfect and everyone helped me. NOW, I find I try not to think about the future or what it may hold for fear that I may think something bad may happen and then it will. You should spend a day in my head and then you would wonder how the hell I hold it together. I think my mind has totally fallen apart.

On that note I will close before someone comes to put me away for good.

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

High…Feeling better in the belly

Low…I miss Anthony’s kisses and the way he hugged

Wednesday, August 27, 2003 10:31 AM CDT

Life without Anthony…

All right Chris…here it is………………AN UPDATE!!!!!!!!!!!!!!

Surgery…

It went well and I am recovering SLOWLY. I feel like Brian beats me in the middle of the night EVERY NIGHT. I feel so bruised inside. No, Brian does NOT beat me, well, not on a regular basis anyway. Just kiddin’.

The needle was NOT placed in my hand. It was put in my forearm and I NEVER felt it go in. They called the IV team for me because the nurse said she knew I was going to be trouble when I brought my own numbing agent with me. I was scared shitless (oh how true) to have the surgery. Things went well until I was given a room. I had the roommate from HELL!!!

My roommate was 92 years old. She snored, moaned and shit up a storm. She was having surgery on her intestines and they had to clean her out before she went under the knife. I was a post-op patient that was not permitted to get out of bed without help from the staff. I would ring for the nurse when I smelled her and they didn’t come. I would get out of bed (holding my breath) and walk the hallway looking for a nurse (in a lot of pain I might add). There was 1 aide for 22 patients. It took over an hour each time she shit for them to clean her up. By 5:45 am I called Brian crying and begging for him to come get me…NOW!!! I found my nurse and demanded my discharge papers because Brian was on his way. She made me place a complaint with the head nurse and gathered all of my things and I waited in the hall until Brian arrived at 6:30 to take me home. I kept thinking in my head,” there’s no place like home, there’s no place like home”…clicking my heels together.

I don’t remember any dreams from surgery so I don’t know if Anthony came to play with me. I do know I said I was not going to use my stomach muscles for a long time and yet I had to use them over and over again in the hospital and then again when I came home. I popped the second to last stitch down and the scar area is as hard as a rock…I’m thinking maybe scar tissue is starting to build up. I still haven’t made my post-op appointment yet. I’m afraid he might push on the incision and make me scream. I have learned to LOVE Oxycodone…my drug of choice with this surgery. It was morphine in the hospital.

I can almost sleep on my belly again. I can sleep on my side now with pillows totally surrounding me. So, I am getting some sleep.

I know Brian posted some pics on the site, but I am NOT happy with the gravesite pics. I will take them myself (when I can drive) and he will repost them. He did do a great job on the tree and dedication stone. Slowly we will get all the pics up.

We miss ANTHONY A LOT. We do feel him here with us. I watched some video of him while I have been cooped up in here. I miss his laugh and his silly faces.

Anthony, we love and miss you very much. You are my hero and the love of my life-feeling empty these days without you. Love, Mommy

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

High…Surgery is over, school is starting, I start full time childcare in a couple of weeks
Low…Living without Anthony

Wednesday, August 27, 2003 10:31 AM CDT

Life without Anthony…

All right Chris…here it is………………AN UPDATE!!!!!!!!!!!!!!

Surgery…

It went well and I am recovering SLOWLY. I feel like Brian beats me in the middle of the night EVERY NIGHT. I feel so bruised inside. No, Brian does NOT beat me, well, not on a regular basis anyway. Just kiddin’.

The needle was NOT placed in my hand. It was put in my forearm and I NEVER felt it go in. They called the IV team for me because the nurse said she knew I was going to be trouble when I brought my own numbing agent with me. I was scared shitless (oh how true) to have the surgery. Things went well until I was given a room. I had the roommate from HELL!!!

My roommate was 92 years old. She snored, moaned and shit up a storm. She was having surgery on her intestines and they had to clean her out before she went under the knife. I was a post-op patient that was not permitted to get out of bed without help from the staff. I would ring for the nurse when I smelled her and they didn’t come. I would get out of bed (holding my breath) and walk the hallway looking for a nurse (in a lot of pain I might add). There was 1 aide for 22 patients. It took over an hour each time she shit for them to clean her up. By 5:45 am I called Brian crying and begging for him to come get me…NOW!!! I found my nurse and demanded my discharge papers because Brian was on his way. She made me place a complaint with the head nurse and gathered all of my things and I waited in the hall until Brian arrived at 6:30 to take me home. I kept thinking in my head,” there’s no place like home, there’s no place like home”…clicking my heels together.

I don’t remember any dreams from surgery so I don’t know if Anthony came to play with me. I do know I said I was not going to use my stomach muscles for a long time and yet I had to use them over and over again in the hospital and then again when I came home. I popped the second to last stitch down and the scar area is as hard as a rock…I’m thinking maybe scar tissue is starting to build up. I still haven’t made my post-op appointment yet. I’m afraid he might push on the incision and make me scream. I have learned to LOVE Oxycodone…my drug of choice with this surgery. It was morphine in the hospital.

I can almost sleep on my belly again. I can sleep on my side now with pillows totally surrounding me. So, I am getting some sleep.

I know Brian posted some pics on the site, but I am NOT happy with the gravesite pics. I will take them myself (when I can drive) and he will repost them. He did do a great job on the tree and dedication stone. Slowly we will get all the pics up.

We miss ANTHONY A LOT. We do feel him here with us. I watched some video of him while I have been cooped up in here. I miss his laugh and his silly faces.

Anthony, we love and miss you very much. You are my hero and the love of my life-feeling empty these days without you. Love, Mommy

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

High…Surgery is over, school is starting, I start full time childcare in a couple of weeks
Low…Living without Anthony

Thursday, August 7, 2003 9:25 PM CDT

Life without Anthony…

I wrote this at different times over the last 2 days, so there is no order to it at all…but it is here.

Sunday evening we took Chris and Michael to Camp Neumann for the week. Chris had gone back in June, but had to come home early because he got sick. Friday I received a call from the camp inviting Chris to come back with Michael for the week. Yippee!!!

Tuesday was Nicholas’ birthday. He turned 4. We celebrated with some family and friends…cake, ice cream, sticky buns and BIG BROTHER 4. Yes, I am addicted again this year. Thank God Dana was kicked off this week. I can’t stand her.

I had an appointment with a surgeon on Wednesday and am scheduled for surgery on August 18th to rid my body of a LARGE hernia in my abdomen. I’ve had it since Nick was born. I never allowed my body to heal after Nick was born. I think the week after I had Nick I was back at the hospital with Anthony and I continued to lift him constantly. By the way, all four of my children were born via c-section. My muscles never had a chance. I’m nervous as all hell. So, I am trying to get my life in order.

I painted my bedroom this week while the boys were gone and it looks AWESOME. I did plum and lavender stripes about every 14” each on one of my walls. We’ll have to post pictures. You know like the one of the tree we haven’t posted yet or the one of Ant’s gravesite. Some day we will be organized again.

Anthony’s caseworker from Aetna called the other day to see how things were going for Anthony. I had to tell her that he passed away on June 2nd and she burst into tears. She totally could not control herself. She felt so bad that she had called and didn’t know. I explained how could she know if I never called her. I had to tell enough people that I couldn’t make any additional calls then I already made.

I’m not sure which call was the worst to make: to Kathy (lab tech) because I knew how much she loved him, to Dr Bunin because it just proved that she and the other doctors were right, he was going to die (putting me in the wrong…which I NEVER am), to my sister who I knew would be so upset that she couldn’t be with me immediately, to our parents because that meant having to bury their Grandchild, to the funeral director because he would be coming to take away my baby forever, I could go on forever and forever.

The other morning Nick asked me if he could be my angel. I told him he was my angel here on earth. He told me he’d like to be an angel in heaven so that he could play with Anthony. I told him I would never see or be able to hug him again, but he keeps insisting that he go to heaven to be an angel. He scares me sometimes. He also wanted to know if Anthony sang Happy birthday to him in heaven. I said of course he did.

I took Nicholas and Kelsey on a shopping spree. Nick shopped at Toys R Us and Kelsey shopped at DELIA’S in the plaza. Both of them made out like BANDITS!!!!!! Trust me on that one!!! We were gone for 7 hours and Nick was actually good for us.

On August 2nd we let balloons go again…this time with messages on them to Anthony. We still say “To Infinity and Beyond” as we let them go.

Anthony, we love and miss you so much. It just isn’t the same without you. Maybe tonight you will join me in my dreams and we can play together. Forever missing you, Love, MOMMY :)

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.


High…Nick’s birthday, shopping, my bedroom

Low… missing Anthony (his hugs, kisses and especially his smile)

Thursday, August 7, 2003 2:50 PM CDT

REALLY, I SWEAR I AM GOING TO UPDATE THIS SITE T O N I G H T !!!

Dina

Friday, July 25, 2003 8:04 AM CDT

Life without Anthony…


Anthony, wherefore art thou Anthony… Could he be at the shore, on the boardwalk or in the sky maybe he’s everywhere we look…read on to find out.

Sunday afternoon Chris, Michael, Nicholas, Kelsey, Ashley and I all headed down to Ocean City, NJ. We made it there with no problems. Oh and we brought my mom down with us also. We dropped her off with a friend and they headed to another shore point.

Monday we went to the boardwalk in the evening and the boys wanted to ride some of the amusement rides. While we were there Ashley asked if I knew whom that boy looked like. Well, his back was to me and she said he looked like Anthony. Just as she said it he turned around towards his parents and there he was…my ANGEL in heaven appeared on Earth. It was so freaky. This boy was about 8 or 9. The day’s proceeding Anthony’s death he looked VERY mature. He was losing weight by the second and his facial features were coming out more. There was NO baby fat to hide behind. We were all amazed…this little boy had Anthony’s face. I talked to the parents and I probably freaked them out a little. We didn’t see them anymore in the park, so they probably grabbed their son and ran like hell.

Tuesday evening it rained cats and dogs. As we sat on the wrap around porch on the second floor we could see a beautiful rainbow. I mean the whole rainbow…from end to end. I (out loud) said, “Thank you, Anthony, for the beautiful picture”. Nicholas chimed in to say, “Mommy, maybe God left the crayons on the kitchen table and Anthony got them. I think he was writing everyone’s name in a different color and it made up the rainbow.” Then he said that God probably was mad and wouldn’t let Anthony have any ice cream after dinner. Before bed Nick said he thought God probably gave him some before bed because he forgave him. To think like a child again would be incredible.

I think Nick has an incredible imagination. I hope he uses it for something useful in the future, and I don’t mean when he’s a teenager lying to me.

We had a very nice time at the shore, but it wasn’t the same as having Brian with us. We all missed him a lot. The vacation next month will be better I’m sure. As for the things I wanted to do this week…I did relax, I didn’t play cards, I did watch the boys run and play on the beach, I did not have time to stop and smell the roses (maybe I got to see a rainbow instead), Peace and Quiet…I think that only comes when the children are all in bed for the night.

I’m doing lunch with some girlfriends today. We used to do dinner years ago and last year we missed it all together. We all have birthdays within one week in August. Can you believe my birthday is coming up at the end of August? I’m getting old. My GYN told me she’s giving me the best present for my birthday…a MAMMOGRAM! I said like hell you are. When I was 21 I had a lump removed from my breast and they had to do a mammogram 1st and…to see my breast flat and pulled out about 3 ft in front of me was NOT pleasant. After all that they saw NOTHING. When the surgery was over we found out it was the size of a golf ball. The mammogram didn’t help then and it isn’t going to help these dense breasts now. Maybe when I turn 40 I’ll let them flatten me…NOT!!!

Your continued words of encouragement and wisdom have helped me more than you know. Nicholas and the boys are what help me to get out of bed each day. And you all keep me going all day long. Thank you!!!

“To Infinity and Beyond”

Until next week…love your children, hug them, kiss them and tell them that you love them.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.


High…we are all under the same roof again, & visiting Anthony’s grave

Low…I wish that boy really was Anthony.

Saturday, July 19, 2003 11:40 AM CDT

Life without Anthony…

This last week has been a hectic one for us. I have run around all week long. Kelsey (our babysitter) turned SWEET “16”. I went to see Legally Blonde 2. I attended a demonstration at my girlfriend’s house. The boys had their end of season baseball party and got trophies. The boys had dentist appointments and so did I. I had a tooth filled and it took 3 shots to numb my mouth. I took Nick and Michael to the doctors…Nick has another ear infection (he already has tubes), Michael has an infection and then there is me. The doctor went over the report from the hospital visit I had a few weeks back. I have a contracted gallbladder, a large hernia, an enlarged liver, massive anxiety and on top of it all I have IBS (irritable bowel syndrome).

The boys and I leave for the shore tomorrow and Brian will not be joining us because he couldn’t get off of work. This, of course, brings on the anxiety and sets off the IBS. I think I am falling apart at the seams. Maybe this is God’s way of saying, I let you stay healthy for the most part over the last 4 years…it’s time to do some catch up on you.

Enough medical and dental talk…last week I ordered the headstone for Anthony’s grave. It will be 5 feet long, 30 inches high and have a foundation that is 6 feet long. We also bought him one of those candles for the cemetery where you change out the candle weekly. And, yes, we still go at least daily to visit Anthony.

Did I mention that my front windshield has a crack in it? I had to quick make some calls to get it replaced on Friday so I don’t have to drive to the shore with a spidered (is that a word?) windshield. They actually came right out to our house and did it in the driveway. I was impressed how quickly it was done.

Next week I plan on stopping to smell the roses, soaking up the rays of the sun, watching my children run on the beach (this will be Nick’s 1st time to the beach), enjoying the peace and quiet you only find away from your own home and playing lots of cards. Keep your fingers crossed that I can at least accomplish one of those goals.

“To Infinity and Beyond”

Until next week…love your children, hug them and kiss them even if they don’t want you to. Do it in their sleep if that’s what it takes.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.


High…I’m getting away

Low…Brian can’t join us and I miss Anthony so much!!

Monday, July 14, 2003 9:36 AM CDT

Life without Anthony…It has been 6 weeks today.

We find ourselves visiting Anthony's grave a lot. I have been getting so much anxiety when I know that I am headed there, that I have to go home because I feel so sick. One day at a time and things will be fine...I keep telling myself that.

The kids (Chris & Michael) started day camp. They go from 9-12 Monday through Friday. They do all kinds of fun things. They play outdoor games like I used to play when I was a kid (which was just a few short years ago), they do arts and crafts & they go on field trips. They go golfing, skating, bowling, swimming and to a water park. Some days I wish I were a kid again.

I had a good week last week. Thursday I met up with Kathy (lab Tech at the KOP clinic). We went out to lunch and it was so good to spend time with her. Anthony and Kathy were good buddies. I also had the chance to see Megan, Vince, Anna and Rodger. It felt a little weird walking into a place that Anthony spent so much time in, but at the same time it felt GOOD.

Friday I ventured down town to Philly’s CHOP. I met up with Mickey and Madelynn Smith. Madelynn is a patient at CHOP. Anthony and Madelynn went through a lot together. They recently moved to Florida. Since they were coming up we decided that we would get together and have lunch. Madelynn looks GREAT! Her YOUNGER brother is bigger than her. They are both adorable.

I also had the chance to see some of the nurses and nurse practitioners… Nicole, Margie, Kelly, Connie, Carolyn, Chrissie, Jackie and some others also. I have ALWAYS loved seeing Nicole and Kelly…they make me laugh. Chrissie is so full of energy; I admire her a lot being an onco nurse. I got a tour of the new Oncology wing. It is beautiful. It has 24 BIG rooms with full bathrooms. It’s very colorful and if I ever have to go to the hospital for something with my kids (God forbid), I am requesting a room on the onco floor. Dr Bunin was off for the day and I didn’t get the chance to see her. I was bummed out about that. Maybe there will be a next time. I handled the visits well. A few tears that were sad and a few that were happy…all the same there were some tears.

Saturday was another good day for me. I met up with Sharon Donato for dinner. Sharon and I share something in common. We both have wonderful sons by the name of Anthony, they were both diagnosed with cancer, we spent a lot of time together in the hospital and both of our sons watch over us from the heavens above to make sure we stay on the right path. When dinner was done Sharon handed me a bag and in it was a box. Inside the box was a chain and on it was a picture of Anthony etched into it. It is so beautiful. Everyone that sees it…WANTS it!!! It’s mine all mine!!!!!!!!!!

Until next week…love your children, hug them and kiss them even if they don’t want you to. Do it in their sleep if that’s what it takes.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

“To Infinity and Beyond”

High…seeing so many people from CHOP

Low…Missing Anthony is getting worse each day instead of easier.

Wednesday, July 9, 2003 8:15 AM CDT

Life without Anthony…

It has been a full week since last I wrote. The older boys were at their Aunt and Uncle’s house all last week. They had lots of fun. They shopped, went to the movies, swam at the pool and had fun with their cousins. Nick and I ran and did lots of errands. I enjoyed my time with Nick. We went to the grave a couple times a day.

Speaking of Anthony’s grave…Brian and I went up on Sunday to fix it up. We fenced in an area of 3’x 4 ½’ with an aluminum beautiful fence. We laid black paper inside the fence and loaded the area up with white stone. We hung 2 solar lanterns from shepherd hooks and placed 2 more solar lights at the base of the fence. It really lights up at night. We found a butterfly and other decorations that are in the ground by a copper stick. And we also have a dragonfly wind chime hanging by another shepherd’s hook. Our other 3 boys will be allowed to add 1 thing each to the area. We have friends that we are going to ask to make (out of wood) a Spongebob and Buzz Lightyear. When we are finished I promise we’ll add a picture of it.

We hope everyone had lots of fun on the 4th of July. We went to Brian’s mom’s house and celebrated CJ’s 1 year birthday. We took pictures of all the niece’s and nephews (like we try to do at all occasions) and that was hard on Brian and me…the first picture without Anthony in it.

Friday night Brian had to take me to the emergency room. I was having unbearable pain in my right side. I thought it was my kidneys or my gallbladder. The family doctor thought maybe an ovarian cyst that had ruptured. When I got there they did a urinalysis, a CBC, x-rays and a CT scan. The CT scan showed that my gallbladder was contracted. Now, I had been on the Atkins diet (high fat, no carbs) for almost 2 weeks and lost 9-10 pounds. I was doing great and had spent a lot of money on the food that I needed to eat. Then the doctor tells me I have to stop the diet right away. My gallbladder can’t handle the fats. Now I have to have very little fat. My body has no idea if I am coming or going. By Monday I was feeling better…I had only 10 grams of fat in 3 days. So, I guess I’ll do a low calorie, no fat diet. I guess I’ll be making another trip to the store to buy the right foods.

Until next week…love your children, hug them and kiss them even if they don’t want you to. Do it in their sleep if that’s what it takes.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

“To Infinity and Beyond”

High…The grave site looks great!!!

Low…Missing Anthony is getting worse each day instead of easier.

Thursday, July 3, 2003 2:16 AM CDT

Life without Anthony…

We have been keeping very busy…the pool is open and we have been enjoying it every minute that we get. Nick likes the pool this year…he just prefers that I DON’T hold him in the pool. He must remember that I threw him in last year.

I took the boys to go see The Wild Thornberry’s at the Regal cinema last Tuesday. On Tuesday and Wednesday mornings the Regal has free movies for kids. Check your local Regal they all do the same thing. It was lots of fun and Nick just loves the movie theater now.

I decided on a head stone for Anthony’s grave and I will be ordering it next week. We’ll take a picture of it when it comes in. It is going to be beautiful. It will have a snowflake, a yellow rose and his face all color etched into the stone. So, when I say, “Nick, let’s go see Anthony”, we will really be able to see Anthony.

We took Chris to camp on Sunday and he was to come home on Friday evening. That would all be fine and good to a normal family, but not ours. We got a call on Thursday saying Chris had a fever of 102.5. We had to go get him Thursday evening and bring him back home. He was bummed out that he missed the ending ceremony where awards are given out. While he was there he was in the infirmary several times…a tick was on him, he fell down and cut his leg because he was walking backwards and tripped over a tree stump and for his fevers. Michael will go in August…Halloween Week!

Had party…water balloons, slip and slide, pool, bar-b-q…Oh my God, I will never do a party like this again. We had 26 kids here and it felt like 126 kids. Boys were slamming water balloons at girls, boys were pulling down each other’s pants…it was crazy. Some of the boys did listen, but some paid no mind to Brian or me at all. That is something Brian and I DO NOT TOLERATE. Did you ever hear the expression BOYS WILL BE BOYS? Well this went beyond that. They blatantly did not listen. Next year will be a party with a COUPLE of kids that I approve of. The girls were good. The kids did get a chance to see the tree that was planted in our yard from them in memory of Anthony. There is a beautiful stone with their dedication on it. We’ll put up a picture soon. They had chips, pretzels, Doritos, grapes with dip, tomato pie, burgers, dogs, ice cream, cake (spider-man) and they ate and ate and ate some more. If anyone reads this and is in touch with Mrs., Fuscaldo (Chris’ teacher) tell her I have no idea how she did it all year long.

Christopher and Michael went to their Aunt and Uncle’s house for the week. We’ll get them back on Friday. It has been just Nick and me this week and it is so quiet around here. That’s an oxymoron…Nick around and it is quiet. Nick has not been feeling well since Monday. This is the 1st time he has been sick and I didn’t whisk him off to my mom’s house.

Several nights ago Nick was crying in his sleep. We could not wake him or console him. He just cried and cried and cried. Eventually Brian went and slept on Nick’s floor in hopes of being able to console him if he woke up. In the morning he told us he was dreaming about Anthony.

Yesterday was Anthony’s 1-month anniversary with God. I can’t believe it has been one month. Brian and I took Nick and Ashley (babysitter) up to the grave to let 4 yellow smiley face balloons go up to heaven so Anthony would have something to play with. We’ll do that every monthly anniversary.

Until next week…love your children, hug them and kiss them even if they don’t want you to. Do it in their sleep if that’s what it takes.

Thank you for four years of love, prayers, support and holding us up. It has meant the world to us.

“To Infinity and Beyond”

High…Special time with Nick

Low…Nick is sick, missing Anthony is worse today then any other day so far. Can't sleep...just check the time of this entry.

Thursday, June 26, 2003 6:55 AM CDT

Life without Anthony…

I have decided to continue Anthony’s page for a couple of reasons. I would like to continue a journal in writing on life without Anthony. I would like to share with you how we manage to get through our days without Anthony. I would like to be able to continue to help the many people who are still going through cancer with themselves or their children. I have been able to help many of you out there through Anthony’s site. You have emailed me questions and I have given my best answers and most of them have been something that has helped your children. Please continue to ask and I will do my best to help. Sometimes knowing I was able to help someone makes me feel that Anthony’s death was not for NOTHING!

I’d like to share a couple of stories with you…mainly because I want them in the journal, but also for your enjoyment. You’ll notice that the adventures of Anthony continue in the after life.

STORY #1…

When Anthony graduated from pre-school on May 20, 2003 he was given a balloon that was yellow and had a happy face on it. On Thursday, June 12, the balloon that was 22 days old and had been lying on the floor for days…came alive. It was floating about 2 ½ feet off of the floor from my Family room into the kitchen where I was. I watched it glide across the room to the cabinets and eye them up and down. Then it moved over to the refrigerator and moved up it to the top where I keep the ring pops for the boys. Now this is really weird…it moved to the side of the fridge, where I keep Anthony’s Rice Krispies Treats, and faced them. I was freaking out and called all 3 boys to come and watch. We watched the balloon travel from the family room to the kitchen to the dining room, Nick and Anthony’s playroom, back and forth from the dining room to the kitchen to the family room. Now, this went on for 25 minutes. It was amazing! THEN NICK HUGS THE BALLOON and hands it to me and says,” MOMMY, HUG IT”. I did and Nick screams, “NOT TO TIGHT YOUR SQUEEZING ANTHONY TOO TIGHT”. I was a bit freaked out. I let go and it continued its pattern. The phone rang and I went to answer it in the living room. When I hung up the phone and came back in…IT WAS NOT MOVING ANY MORE.

STORY #2…

Last week on Thursday or Friday Nick woke up screaming. I ran to the steps and asked what was wrong. He came down and said someone kissed his cheek and when he opened his eyes to see who it was…no one was there. I said that maybe daddy did it because he had just left for work. I called Brian and it wasn’t him. He hadn’t been in Nicholas’ room all morning. While on the phone with Brian, he said,” Maybe it was Anthony and he flew back up to heaven when I opened my eyes.” I said I would go with that theory any day.

Maybe Nicholas does see what we adults can’t. Maybe the reason Nick is so talkative and has a wonderful vocabulary is so that he can tell us things in a grown up way that we grown ups would probably never say because we would fear being institutionalized.

Kelsey gave Nick a pair of underwear to put on and he said they were Anthony’s. Then Nick came to me and asked if Anthony wears underwear in heaven. I thought it was so cute. I explained he wears no clothes because only his heart (better than having to explain a soul) is there…his body is still in the grave. Nicholas continues to talk about Anthony and I now encourage it by reminding him of all the things they used to do together…ride their bikes, jump in the moon bounce, play in the snow, Playstation, Track and Field, etc…

Christopher went to sleep away camp on Sunday. We pick him up on Friday. Nicholas is very concerned that Chris is not home yet. He wants to know if Chris is ever coming back home. Michael will go to the same camp in August. I also scheduled a vacation for us. I won’t mention that week for fear someone would break into our house…you know the scary people out there that read this page. HEY, you may be one of them.

This Saturday is Christopher’s 10th birthday. On Sunday, we are having about 25-30 kids here at the house to swim and bar-B-Q. I bought 490 water balloons so that they can have a fight. I think they’ll have a blast (I still HATE to use that word). I’m going to have to expand my own vocab to get rid of that word.

I finished most of the thank you notes, but there are a few that I have no idea who they are and therefore have no address. I swear that I will NEVER give another gift without writing NO ACKNOWLEDGEMENT NECESSARY. I have written hundreds of thank you notes and I’m still not totally done yet. Checks to the American Cancer Society keep rolling in. We have gotten over $ 5000.00 in donations. I think it is wonderful.

My advice to all of you parents out there…GET LIFE INSURANCE FOR YOUR CHILDREN. It is not cheap to have to bury your child. In the midst of all your grief you find debt. Nothing is cheap and people don’t do things for free. Well, maybe some people do. You don’t have to think you’ll ever use it. Think of it as if something ever happened to make them disabled or have a disease that is usually curable some insurance companies don’t like to give out policies on those people and this is a policy your children could have until they are 30.

“To Infinity and Beyond”

High…wonderful reminders of Anthony

Low…Anthony is gone and I’m feeling the pain more this week then the day I buried him.

Tuesday, June 17, 2003 8:01 PM CDT

Life without Anthony…

I still can’t believe that Anthony is gone. I can’t seem to get the look on his face (the second he passed away) out of my head. I was holding him in my arms and he was gone. I never totally understood that our bodies are just a shell…until that moment. He was here and then his body was limp. He was looking right in my eyes and yet he wasn’t there. He was actually looking through my eyes. His “spirit” or soul was taken away and I was left with his body…a body that I will never hold or hug, one that I can never kiss or touch EVER again. Can you imagine for one minute that you could NEVER touch your child ever again? I’m sure it could bring a tear to your eye. Well, it is breaking my heart. I have 3 other beautiful children and yet I yearn for Anthony.

Don’t get me wrong…we have NOT fallen apart over here. We are managing pretty well for having lost our 5-year-old only 2 weeks ago. It’s the alone time I have. When I am in the car or laying in bed and everyone is asleep…I think about Anthony and dream of him coming and playing with me. I still can’t play Track and Field yet…one of Anthony’s favorite games.

Nicholas is scaring me a little. Lately, when I say don’t do this or don’t touch that because you could die from it…he says,” it’s ok mommy, then I could go to heaven and play with Anthony again”. What do I say to that? He fears NOTHING now. He longs for the day when he and Anthony can play again in heaven. Thank GOD he is only 3 and not 13. I would have to have him on a suicide watch.

When Nick would ask a million and 1 questions about Anthony I would go crazy, and now I realized it is his only way of keeping Anthony’s memory alive. So, we talk about Anthony all day long. We visit the grave EVERY day…because I did promise that we could go whenever Nicholas wants to go.

I won’t let us forget about Anthony. He is etched in our minds forever.

I do find myself missing the CHOP staff…Dr Bunin and the nurses on 3East and let’s not forget our home away from home…CHOP’s KOP clinic and their staff. Kathy, I miss your calls 3 times a week to give me Anthony’s counts. Thank you for always making our lives easier.

“To Infinity and Beyond”

High… Most of the Thank you notes are in the mail

Low…Missing my BABY

Friday, June 13, 2003 3:30 PM CDT

Life without Anthony…

We miss him with our whole heart and soul. The boys go on with their lives and Nicholas still has an enormous amount of questions for us about where Anthony is and when he’ll be home and let’s not forget…”Why mommy, why did he have to go live in heaven with Jesus?” The questions are hard to deal with because he starts first thing in the morning. I did promise Nick that I would take him to the gravesite as often as he wants to go (it is only about 2 minutes from our home). He has taken me up on that offer every day since Anthony was buried.

We wrote letters to Anthony that were read in church before the mass. Nicholas’ letter to Anthony was done totally by Nick himself. It went like this:


Dear Anthony,


I love you and I miss you. I want you to come back home. It was so good to see you flying over Mom-Mom Mary Rose’s house with your Buzz wings on Wednesday night. Mommy said that I would never see you again, but I did.

Love Your Best Friend,
Nicholas




My letter to Anthony went like this:


Dear Anthony,

Your time with us here was oh, so brief. In 5 years time you made the world love you. People from all over have prayed for and with you. You have made us all laugh and cry, sometimes all in the same breath. You have shown us what strength and courage really are all about. You have taught us to fight with everything inside of us. You have made me be the best person I can be. I used to be timid and shy, but through your battle I have learned how to fight for what is best for ALL of my family. I have learned to stand up for you and those I love. I have learned to be outspoken and demanding. I have learned how to get what I want and NOW! You have taught me more in the last 5 years then I could have ever learned in my lifetime.

I will miss the Dunkin Doughnut and Wendy’s chicken nugget cravings, the kisses you would wipe away, the way you would squeeze me when we hugged, our alone time when everyone was at school, how we cuddled close in bed at CHOP, our nice talks on the way to clinic, and the way you sang the songs on the radio.

And I will miss watching you ride your bike down the street, or try to dribble a basketball.

I will miss playing baseball in the house, trying to beat you at Track and Field, our games of Crash Bash that would last for hours, and your new card game, UNO.

I will miss seeing you do things like; watching you go on the bus for the 1st time, your first day of Kindergarten, your sweet 16th birthday, watching you drive, your 1st girlfriend, H.S. graduation, leaving for college and getting married. These things I may never see, but what we had was so much more.

When kindergarteners enter Sacred Heart school parents are asked to write something about their child that is special. When I registered you for Kindergarten I wrote down what I would have said and I’d like to share it with you so that you know what it is that I found so special about you.

Anthony is special from his head to his toes. You see he’s a soldier fighting a battle everyday of his life. He began his fight at 13 months of age. He was winning for 7 months and then he relapsed. But I told him to be brave, just move forward and he could win. So, he forged ahead some more and was in the lead for the next 2 years…but again a set back, another relapse. Once again I told him to be strong because he is the best fighter and I said he could win this uphill battle. He fought for 4 years with the battle of leukemia. He does his best and wakes each day with a smile on his face and listening to me say we have won today. Let’s pray we will have tomorrow.

I always thought tomorrow would never come and yet, it is here.

Since you have been sick, we have spent more time together than some parents will EVER spend with their children in their lifetimes. We lived and breathed each other from morning till night and many times through the night.

You are my HERO! I have held you up over the last 5 years and I hope that now you can hold me up for the next few until we meet again. I love you with my whole heart and soul. Be at my side now and forever.

Love,

Mommy…you’re greatest love of all





More later…



High…Nicholas is really helping me & Brian through all of this

Low…we miss Anthony so much

Sunday, June 8, 2003 7:04 AM CDT

Anthony’s viewing was soooo BEAUTIFUL. There were so many flowers. We had a beautiful slide show as a tribute to his life, balloons galore, flowers coming out of everywhere, we didn’t let our families wear suits or dark colors, and we had tablets of Anthony that people could write their favorite memory or memories on and place in an angel box. Nicholas was our entertainment for the evening. He constantly kissed Anthony and would say his nighttime prayer to him all night long. He even held up the line several times. We are so glad that we had 2 viewings on Thursday. I can’t even begin to tell you how many people were there at each. The funeral was just as beautiful letters (written by each of us…Brian, me, nick, Chris, & mike) were read before the service. We let go of balloons at the cemetery as we said, “TO INFINITY AND BEYOND”). It was beautiful! The time flew by quickly and we did great throughout the day and night. We held it together, but I would lose it whenever I saw a CHOP family. I think seeing Erin Delahanty and Sharon Donato made me cry the most. Other then the CHOP families we REALLY held it together. Let me tell you why…

It was Monday morning and I was packing for the hospital and Brian was sitting with Anthony. When I finished packing I went to relieve Brian so he could pack up the car. When I took Anthony into my arms Brian told me to listen to what he had to say. He told me, “Mommy, they’re coming”. I said who is coming? We are going to CHOP to see Dr Bunin. He repeated, “They’re coming”. I told him that his dr’s don’t come out to the house we are going to CHOP. He only repeated that they’re coming and requested that I hold him in the car instead of him sitting in his car seat. Because Anthony was so frail I made him sit in his car seat. He said all of this at 10:00am. We jumped in the car and headed down to CHOP. Within 2 minutes Brian started screaming that his heart rate (that he could see on the pulse ox machine) was dropping. I pulled over and jumped out of the car and grabbed him out of the back seat. When I finally realized he was going, I began CPR and a special someone came into my head and told me he had had enough, let him go…and I did. We want so much to believe that the ANGELS were COMING and that he knew it. Brian was Anthony’s whole world and he wanted me to hold him in the car. I may not have held him on the way to CHOP, but sure did hold him the whole way back to our house. Anthony died around 10:15am.

We kept Anthony at the house with us until around 3:00. This way family and friends were able to see him before he had to go. Friends, family and neighbors (they are our family also) came immediately…it was so nice. Anthony laid in the Living room and every time Nicholas ran through the Living room he would stop and kiss and hug Anthony all over. He constantly told Anthony how much he loved him and would miss him. I thought, hey maybe he understands. But he has been so full of questions lately.

A MUST READ STORY…Nicholas told me this on Thursday morning and it made my entire day, actually, it probably will help me get through every day for the rest of my life. Wednesday night Nick slept at my mom’s house. When he got to her house he slammed his fingers in the door of her car. He was crying and my mom was consoling him when he asked her if she saw that. Mommy asked, “saw what”. Nicholas said that Anthony just flew over her house with Buzz Lightyear wings. Nicholas didn’t know this, but we buried Anthony in Buzz Lightyear Pajama’s. It warms my heart to know that Anthony chose Nicholas to go to because they were best buddies and Anthony knew that Nick would tell me he was seen. Nick is only 3 and could never have made this story up. He still thinks Heaven is like CHOP, when he gets better he’ll be home.

High…I have my own personal ANGEL now

Low…I miss Anthony so much

Tuesday, June 3, 2003 4:42 AM CDT

Wednesday evening...As you all know I can never wait for anything and I miss Anthony so much, so, I went to see him today. He looks SOOOOOOOO GOOD! I always share the negative with you and I wanted to share some positive with you for a change. When I looked at him, I had this feeling of calm go through my veins and I feel so much better than I have the last 2 days.

Monday, June 2, 2003 at 10:13AM.
It is with a heavy heart that I tell you Anthony Falco Makoid passed away this morning with Brian and me with him. Wings are sprouting from Anthony as he journeys up to heaven leaving the rest of us behind. We will mourn, scream, holler, rant, rave, cry and finally realize that Anthony is no longer in pain and where GOD seems to want him. I tried my best to keep him with us, but God's pull is stronger than mine. In the end HE always gets his way...GREEDY!

Viewing and funeral arrangements are at the bottom.

The feeling of emptiness fills my stomach and makes me want to throw up. Though it has been less than 24 hours and already I can’t wait to see and touch him again. I wanted to keep him. The funeral director let us keep him for a long time...but it’s never enough. I want him here with me forever. I can’t believe that I will NEVER hold his body or kiss his beautiful face ever again. I can’t imagine living a full day without him, let alone a lifetime without him. Anthony was robbed of a lifetime with his family and we were stripped of a son forever. There will never be any justice to try to take. No one can take revenge on God and will. We must learn to accept the fact that he’s NEVER coming back to us.

I hope we have a forgiving God…I have called him every name in the book, I have even made up a few of my own. He cheated us…He gave us Anthony and took him back way too soon. It was wrong and He knows it. He’ll never be able to make up for it…NEVER! God may have taken his cancer away in heaven, but who gave it to him here on earth.

Anthony, MY soldier, was the best everything; son, brother, grandson, cousin, friend, playmate…he was kind and giving, playful, loving, a superhero, a fighter, the best warrior, the sweetest kisser, a great hugger and Nicholas’ best friend. He fought a battle that I hope no one else I know ever has to fight. He was not afraid to stand on the front line and take anything coming his way. He was accepting of every new drug or treatment. He never questioned why we made him do this and that. We put poison in him to try to make him better…it sounds awful, but we do what we can to keep our children with us. In the end, we were given extra time with him and that was it. We MUST learn to be thankful for the last 4 years. We had our ups and downs, but with Anthony’s attitude we could face each day smiling. Now, I can’t sleep and I never want to smile again. Tears are all that I can seems to muster up right now.

Viewing and funeral arrangements…

Thursday, June 5th from 3:00 to 5:00 and again from 7:00 to 9:00 there will be a viewing held at:
Catagnus Funeral Home
711 N. Franklin Street
Pottstown, PA 19464

Friday, June 6th from 9:00-10:00 a viewing will be held at:

Sacred Heart Church
Lewis Road & Walnut Street
Royersford, PA 19468
Followed by a 10 AM mass.

I feel empty, lost, as if in a fog…we are forever changed. Nothing will ever be the same for us.

High...his cancer is gone forever

Low...I miss my baby (MY soldier)

Monday, June 2, 2003 8:42 AM CDT

It is with a heavy heart that I tell you Anthony Falco Makoid passed away this morning with me and Brian with him. Wings are sprouting from Anthony as he journey's up to heaven leaving the rest of us behind. We will mourn, scream, hollar, rant, rave, cry and finally realize that Anthony is no longer in pain and where GOD seems to want him. I tried my best to keep him with us, but God's pull is stronger than mine. In the end HE always gets his way...GREEDY!



The weekend went from bad to worse with Anthony. The Relay was a complete mess with all the rain and thunder/lightning storms. The kids had a blast, but Anthony needed to go home around 6:00PM on Saturday because he needed some hydration.

Anthony has not really eaten in 4 days…maybe it’s 5 days. He is literally starving to death. He looks bad! He now has a fever. We are headed to CHOP to get some antibiotics.

Need lots of prayers. Please, please pray for him.

More when we get a chance.

High…he’s still with us.

Low…cancer

Wednesday, May 28, 2003 10:36 PM CDT

MINI UPDATE in RED on Friday eaaaaarly morning...5am...

Bad news...Anthony needs his oxygen 24/7
Good news...Anthony's counts are moving in the right direction...

WBC...10.0
HGB...12.2
PLT...56
ANC...1000
BLASTS...45 percent


I can't believe that his counts are doing great and his lungs are filling with fluid. Tomorrow (I guess TODAY) we are taking Anthony down to CHOP to see a Doctor, get platelets, and get a chest x-ray. You know Anthony's, doctors are on vacation, well, the doctor that was to handle Anthony's case this week has not been in and we have been dealing with another dr, well, she's out tomorrow also. Anthony will see a 5th doctor. The other 4 are women, so this time we'll get a man...just in case it's a women thing. Anthony ate NOTHING on Thursday. He did drink about 15 oz of chocolate whole milk.

Saturday is the Relay For Life. Thank you to all of you that have been generous enough to donate to Anthony's team.

Be sure to read to the end to find out what happened today.

To take Nyquil or not to take Nyquil…That was the question that I asked myself last night.

Anthony’s breathing has been fast and his heart rate is about 150 (a little elevated for him). No one in clinic seemed to be as concerned as I was. The crackling in his right lung is so noticeable that I (an untrained ear) can hear it. I’m scared he’ll drown in his own fluid if it doesn’t clear up soon.

Anthony went to see his cardiologist yesterday. He weighs 11.3 (24lbs)...that another drop in weight. He was thorough, but after talking to a doc from Philly he kind of backed off. He said do whatever his onco. docs say to do. What did that mean? I started to ask if his meds should be increased and he said the onco. docs could tell me more. Then I asked if I should limit his activity or should I have him exercise his body more and he said just let him do whatever the heck he wants. That sounds great…but where is the medical advice that I paid for?

Kelsey, our neighbor, took the day off of high school to go with us to clinic. Thanks Kelsey for keeping us company and playing a zillion games of UNO.

Dr Leahey saw Anthony yesterday in the Philly clinic. She went over his new roadmap for his new chemo that he started yesterday. While we were there he received his chemo, platelets and packed red blood cells. We didn’t get home until 7:45. Just so you all realize how much medicine Anthony takes a day…here’s the list…

Synthroid…1 pill a day
Voriconazole…1 pill…2 times a day
Amoxil…1/2 caplet…2 times a day
MGN-3…3 capsules…2 times a day
Hydrea…1 capsule…2 times a day
Acyclovir…1/2 tsp…2 times a day
Bactrim…1 tsp…2 times a day on Saturday and Sunday
Digoxin…1 ml…2 times a day
Lasix…1 ml…2 times a day
Cipro…1.5 ml…2 times a day
Dexamethazone…4 pills…1 time a day
Methotrexate…2 pills…1 time a day
6MP…5.5 ml…1 time a day
Zantac…1 pill…2 times a day
VP16…50 ml…1 time a day

If it is a transfusion day, he also takes…

Tylenol…1 tsp…2 times a day
Atarax…1 pill…1 time a day

Anthony can take his medicine in 5 minutes or 30 minutes…it depends on his mood. I’d be a great drug dealer…you should see me get his meds ready…cut this, crush that, mix this and taste that!!!

Anthony has been moaning in his sleep. His eyes are red, his breathing sucks and he looks overworked and underpaid. I’m getting more scared as the minutes roll by. Sometimes I wish Ant had a permanent bed at CHOP. This way I could bring him there when I’m scared and we could stay at home when I am ok with things.

KOP clinic had better NEVER…EVER close down again. I miss our convenience. I miss being able to ask Dr Rock anything at any time.

I wrote all of this early this morning…today’s update is nasty and scary, read on…

Since then…

I was still worried about Anthony’s breathing early this morning so I called our family practice nurse on her cell phone and ask to borrow their pulse ox machine. She said sure, go pick it up. He was down to 73 when I hooked him up to it. I immediately called CHOP to speak to Dr Leahey and guess what??? She is off today. Do you believe my luck? Dr Ann Reily called me back, she was great I asked to have oxygen delivered to the house and she worked it all out for us. The delivery did NOT get here until 2:00. I hooked him up and after a while I checked his breathing…it was 78 per minute…I doubled and triple checked him. He seemed somewhat comfortable and his oxygen was reading 98-100 with the forced air. When we removed the nosepiece (this was a chore to get him to keep it up his nose) he drops back down to 70 something. Dr Reily was kind enough to call here 3 times today to see how he was doing. She even asked if it was ok to call again tomorrow to see how he’s doing.

We pray tonight for good rest and slower breathing…………Come on folks, won’t you pray with us?

High…we are home

Low…too many to mention

Thursday, May 22, 2003 7:00 PM CDT

Mini Update...
Monday 3/27/03
WBC...36.9
Plt...6
HBG...8.5

Anthony and mommy are in Philly getting Blood, Platelets and Chemo today. I don't expect them home before 9:00p.m.

More to follow... Updated by Brian


Hey everyone, I found Jill, or shall I say she found me. We spoke this evening and she was a breath of fresh air that I so desperately needed. I have contacted another doctor at a different hospital and hope to hear something from there soon. I'll keep you all updated as plans could change at any moment. Love ya all...Dina...



Just a quick update on Friday afternoon to let you know his counts from today…

WBC…22.0
HGB…11.2
PLT…15
BLASTS…92 percent

Unfortunately, Anthony’s 2 doctors (one from Philly and one from KOP) will BOTH be on vacation next week. That alone scares the hell out of me. Anthony’s case will be left to a doctor that I am not very fond of. We are at the end of the line with chemo for Anthony. PLEASE say some extra prayers that what he gets on Tuesday does something for him. We will be DOUBLING HIS HYDREA for a while. Hopefully this will keep a lid on his white cells until Tuesday.

Anthony ALWAYS causes us heartache on holidays and weekends. It’s either a fever, heart problems, bleeding, looking pale, white cells through the roof or PAIN. The last thing would be the absolute worst thing that could happen to him this weekend…ok, the 2nd to last thing. More on Tuesday…



I found the prayer it is at the bottom...


The Relay for Life is just around the corner...May 31st-June 1st. It is a 24-hour walk that benefits the American Cancer Society. We have a team called Anthony's Angels. What we need are donations! I have not been doing my job this year due to Anthony's Heart failure and his HUGE birthday bash, so I need to get my butt in gear and start begging for some donations. Your tax-deductible donations can be made out to the American Cancer Society. You can send it to:

Anthony's Angels
2281 Donna Lane
Pottstown, PA 19464

Won't you please help out our team...




Anthony was released from CHOP @ 3:15 on Wednesday, just in time to get ready for his graduation. We’ll get back to that in a minute.

Wednesday early afternoon Anthony had an ECHO and an X-ray. The ECHO showed a SF (shortening factor) of 20ust about the same as before. The x-ray showed a dramatic improvement from Tuesday to Wednesday. The docs didn’t do much more than give him blood and pull some fluid off of him. His fast recovery is due mostly in part to him, his will and his spirit. Don’t get me wrong the doctor (Dr Maris) made all the calls. I was very impressed with Dr Maris this visit. In the past we have butted heads. This time he actually listened to what I had to say. A lot of doctors don’t do that. We have been blessed with Dr Rock and Dr Bunin who listen and hear what we have to say.

Anthony, MY soldier, truly is a fighter (determined) in every sense of the word. No matter what comes his way, he comes out on top (a winner).

Anthony is doing fine now…his heart stopping beating at a rapid pace & his breathing has also slowed down.

Back to graduation…MY soldier GRADUATED!!! He didn’t perform with the other children, but he joined them up front. Jaylee, the director, gave a nice speech, and then the pastor read a BEAUTIFUL prayer. I have loved it for years and I’m hoping to find it and post on Ant’s page. Next the children came in. Anthony didn’t want to walk, so his teacher carried him…YES, they spoil him. The children sang songs and Anthony made faces at me. Every child was called up to get their diplomas and Anthony wouldn’t go up, so his teacher carried him up. After she handed him his diploma the whole congregation clapped for him…even though all applause was to be done at the very end. It was VERY touching and yes…I CRIED!

When all was said and done we went to Friendly’s. While we were there Anthony screamed out that he wanted Wendy’s chicken nuggets. He’s never satisfied…he’s like his mother. We didn’t get home until 10:00 or so.

A big thanks to those that came with us (Mommy, Mom and dad, Ashley, Kelsey and Nicholas), those that wanted to come and to those at CHOP that made it possible for us to be there…and ON TIME!!!

Anthony came home to a 6-foot wooden frog accompanied by a dozen little ones on the front lawn. The sign says…Look who took a BIG LEAP…Anthony graduated! Check out the photo page for new pics. He was very happy to see the display. I ordered it last week and I couldn’t wait to see his face…it was worth the wait! You can order lawn sign by calling 1-866-200-sign. I sure hope that is the correct number.

Friday Anthony will go to clinic for platelets and blood. Anthony used to get transfused at 8.0, then he was diagnosed with Congestive Heart Failure and it was changed to 9.0. After this last episode he’ll be transfused at 10.0 from now on. However, since it is a long weekend he will be transfused if he is under 11.0.



We Pray for Children

~~ by Ina J. Hughs

We pray for children who put chocolate fingers everywhere, who like to be tickled, who stomp in puddles and ruin their new pants, who sneak Popsicles before supper, who erase holes in math workbooks, who can never find their shoes.

An we pray for those who stare at photographers from behind barbed wire, who can't bound down the street in a new pair of sneakers, who never "counted potatoes," who are born in places in which we wouldn't be caught dead, who never go to the circus, who live in an x-rated world.

We pray for children who bring us sticky kisses and fistfuls of dandelions, who sleep with the dog and bury goldfish, who hug us in a hurry and forget their lunch money, who cover themselves with Band-aids and sing off key, who squeeze toothpaste all over the sink, who slurp their soup.

And we pray for those who never get dessert, who have no safe blanket to drag behind them, who watch their parents watch them die, who can't find any bread to steal, who don't have any rooms to clean up, whose pictures aren't on anybody's dresser, whose monsters are real.

We pray for children who spend all their allowance before Tuesday, who throw tantrums in the grocery store and pick their food, who like ghost stories, who shove dirty clothes under the bed and never rinse out the tub, who love visits from the tooth fairy, who don't like to be kissed in front of the school bus, who squirm in church or temple and scream in the phone.

And we pray for those whose nightmares come in the daytime, who will eat anything, who have never seen a dentist, who aren't spoiled by anybody, who go to bed hungry and cry themselves to sleep, who live and move and have no being.

We pray for children who want to be carried and for those who must, for those we never give up on and for those who will grab the hand of anyone kind enough to offer it.



High…GRADUATION

Low…we don’t have one.

Monday, May 19, 2003 1:34 PM CDT

Tuesday evening at 8:15...Anthony has been admitted to CHOP. He is in room 3419. His heart is working overtime. He is scheduled to have an ECHO sometime tonight or early tomorrow. Then we'll know how well his heart muscle is working. We are looking for a pass for tomorrow night to attend his graduation. I'll update you all as I get more info.

On a good note Anthony's white blood count came down to 18.4.

Anthony is on his way down to the KOP clinic. He is breathing fast...50 a minute and his heart rate is 150 beat per minute. I'm assuming he'll get an X-ray and it will be pneumonia. We're asking for some prayers.

On a good note. He has NO pain in his hips and knees. Maybe, just maybe, the chemo from yesterday is doing a little something. Or it could be that we doubled his white cell depleter. Either one we'll take it.


The Relay for Life is just around the corner...May 31st-June 1st. It is a 24-hour walk that benefits the American Cancer Society. We have a team called Anthony's Angels. What we need are donations! I have not been doing my job this year due to Anthony's Heart failure and his HUGE birthday bash, so I need to get my butt in gear and start begging for some donations. Your tax-deductible donations can be made out to the American Cancer Society. You can send it to:

Anthony's Angels
2281 Donna Lane
Pottstown, PA 19464

Won't you please help out our team...


Anthony’s counts are terrible…

WBC…31.8
HGB…9.4
PLT…6
ANC…0
BLASTS…93
Potassium…3.8

After my TOTAL meltdown this morning after hearing the counts, Brian came home from work and we took Anthony to Toys R Us to go on a shopping spree. He spent every dollar of his Geoffrey dollars (money from his birthday) and some of my money too. He bought his MOONBOUNCE, basketball net and ball, Spongebob lunch bag, M&M’s, the newest Scooby-Doo movie, Spongebob ball and a Spiderman ball. His shopping spree was well over $300.00. It was great to constantly say yes to him. Every time he saw something he wanted he would look at me and say, “this too…can I get this too?”

We took the Spongebob ball to clinic with us. He had chemo (Carboplatin) and platelets today. Another CBC will be done on Wednesday.

WEDNESDAY is ANTHONY’S GRADUATION!!! He’s graduating from preschool. I hope and pray that he feels well enough to participate in the evening event. NO party this time around, but maybe a special lunch with mommy and daddy.

Dear God,

MY soldier has fought so hard and for so long. I truly believe that he was meant to stay with us. No one is cruel enough to make someone (a child at that) suffer to be with his family and then still take them away. Anthony continues to fight but needs some intervention. Won’t you please help and heal his body. Please God, we beg of you from down on our knees. Heal him…Save him…Love him. Amen.

High…he’s jumping in his moonbounce as I type.

Low…WHITE BLOOD COUNT

Friday, May 16, 2003 4:25 PM CDT

The Relay for Life is just around the corner...May 31st-June 1st. It is a 24-hour walk that benefits the American Cancer Society. We have a team called Anthony's Angels. What we need are donations! I have not been doing my job this year due to Anthony's Heart failure and his Huge birthday bash, so I need to get my butt in gear and start begging for some donations. Your tax deductible donations can be made out to the American Cancer Society. You can send it to:

Anthony's Angels
2281 Donna Lane
Pottstown,PA 19464

Won't you please help out our team...


Life continues to move at a fast pace for us. Last night the boys had a baseball game and Brian worked late. Thank God the older boys (Chris & Michael) had very little homework. I needed that break.

Today Anthony’s new speech therapist came and he did well with her. Anthony’s CBC results:

WBC…14.5
HGB…10.7
PLT…5 (I thought it would have been down to 3)
ANC…145
BLASTS…90%
Potassium...4.2

I called Dr Bunin and we talked about his current chemo (VP16). I think his leukemia is much faster than his chemo. I’m worried that by Monday it will be too far-gone to do much more for him. So, tonight we will start his white cell depleter, Hydrea. This should keep a lid on the leukemia until he can get something new on Monday. He’ll get Carboplatin. I think this is a Neuroblastoma drug. Don’t quote me on that one. I’m willing to try anything for right now. Dr Bunin doesn’t sound hopeful as far as any drug goes right now. Trust me I know we have tried a LOT of things for him. I just want to keep trying until nothing in the whole damn world works for him anymore.

Anthony went to clinic today and received platelets. He is doing great. I know I say that a lot, but he is. For a child with a heart problem…he sure does have a lot of energy.

We have a big weekend planned. Baseball pictures, a baseball game, a college graduation party, a baby shower, and that is all on Saturday.

TTFN

High…MY soldier is still fighting

Low…My soldiers white cells need to give him a break…and NOW!

Wednesday, May 14, 2003 3:34 PM CDT

Our daily lives are busy, busy, busy!!! On Monday Anthony had a CBC…results are:

WBC…3.2
HGB…7.7
PLT…15
ANC…160
BLASTS…64%
Lymphs…21%
Potassium…4.5


We aren’t sure why his potassium went up, but we’ll take it. The only thing I could get down him that had potassium in it was 1/3 of a banana. I doubt that made him go from 3.7 to 4.5.

After the results were in we headed down to the clinic in KOP. Anthony received packed red blood cells (PRB) and platelets. But NOT before he went to Dunkin’ Donuts.

I was supposed to go to the May Procession at Chris & Mike’s school so that I could help Michael get out of his suit and into his gym clothes. Unfortunately, I was unable to be there and in KOP at the same time. Melissa (Zach’s mom) helped Michael & brought home his suit. Thanks Melissa!

Tuesday, Anthony had an ECHO done down at the KOP clinic. The results were given the same day. The norm, for say you and me, should be between 30-40 (36 is what most people are). When Anthony was dx with CHF we were told his SF (shortening factor) was 15. I come to find out is was not 15, it was 10-12. Worse than I thought. Yesterday it was 21-23. An improvement, but I expected more. I always EXPECT MORE! Ask anyone that knows me. I was praying for 28-30. He looks so good and as I type Nicholas and Anthony are killing each other. Which is a really bad thing b/c Anthony’s platelets are 37.

Tonight Brian is working late, the boys have baseball at 6PM, Anthony has therapy at 7PM, I have to run to the doctors office, the boys have massive homework and then the boys need to be picked up by 7:30-8:00. Hello, I am but one person. I sure do wish cloning were an option for me.

Today’s counts:

WBC…6.9
HGB…11.4
PLT…37
ANC…138
BLASTS…78%

High…Anthony looks wonderful and is full of energy.

Low… Way too busy for me.

Sunday, May 11, 2003 10:43 AM CDT

HAPPY MOTHER'S DAY!!!!!!!!!!!!

I know it has been almost a week since last I updated. Sorry about that. I know that you all get concerned when I don’t update because you aren’t sure if we are enjoying life or in the hospital. We definitely were NOT in the hospital. I have been busy with Anthony’s therapy, filling out a dozen or so papers for Kindergarten for Anthony, clean up from the party, opening presents and cards, going to clinic for platelets, etc…

Friday Anthony went to clinic and here are the CBC results:

WBC…1.4
HGB…8.7
PLT…7
ANC…I forget
BLASTS…50%
Potassium…3.7 (this is a little low, they want it to stay at least at 4.0)

He received platelets on Friday and we had a consult with Dr Rock. Anthony started his new chemo on Friday even though his WBC is still low. The doctor feels that it was the right time since the chemo takes a while to work. He will take his chemo (VP16) orally for 21 days and will possibly get a week break before it starts up again. I am happy to report that he had no reactions or side effects to it so far. He does HATE to take it because it has to be put in some kind of juice (orange, apple, tomato or lemonade). Of course, he only likes milk or chocolate milk. Getting the apple juice down him takes 15 to 30 minutes. All he has to drink is 30ml (1 ounce).

In case I don’t say it enough…THANK YOU to Debbie for watching my kids and my babysitting kids for me EVERY time Anthony has to go to clinic or the hospital. Without Debbie I would have to quit my job and bring Nicholas the terror with me.

I also want to THANK…KELSEY AND ASHLEY for all of their help with the party. Without their help the party would have been cancelled. It was hard to be in the hospital for days leading up to the party.

More, hopefully, on Monday…

High…Week filled with fun and bikes

Low…Just too busy to enjoy it with the kids

Monday, May 5, 2003 9:11 AM CDT

BRIAN ADDED THE PICTURES!!!

Monday's CBC...

WBC...0.8
HGB...10.3
PLT...10 (this after getting a volume of 275 on Thursday)
ANC...80
BLASTS...40 percent
LYMPHS...24 percent
Cell Count...50

Anthony had a lot of fun in clinic. We played baseball while he got his platelets. Something we could NEVER do in Philly's clinic. First we recruited Trudi, then Anthony recruited Dr Rock. She had to run all over in heels. She sure did get her exercise for the day. Right before we left I threw the ball up and smacked it with the bat trying to hit it PAST Trudi...instead I smacked it right into her. Sorry Trudi! It was another good day in clinic. For all of you not willing to give the KOP clinic a try...you just don't know what you are missing. EVERYTHING is done in half the time as Philly. More after Wednesday's counts.

Thank you, God for giving us a wonderful day that was full of sun and fun, friends and family, smiles and laughter, food and desserts, hugs and kisses. Thank you for allowing us to share another birthday with our beautiful boy, Anthony. Thank you for each and every day more that you allow us to share with Anthony. Thank you from the bottom of my heart for giving Anthony the strength and courage to face each day as it is handed to him. Amen.


The final count of who came to the party totaled 151 people. Anthony had a blast (I sure do HATE to use that word). It was a really good time. The kids jumped in the moon bounce, played kickball, woofed down popcorn, had a visit from SPIDERMAN, BATMAN AND SPONGEBOB, were entertained by the clown and had the chance to listen to Woody sing, oh and then there was the HUMMER ride. Let’s not forget to mention they ate, ate, and ate some more. Most of them started with dessert and moved on back to the dessert.

Anthony had such a WONDERFUL time with WOODY. Usually, Anthony likes to listen, but not too close. This year he was practically on Woody’s lap…laughing away. You’ll see what I mean when Brian gets the pictures up on the page.

I was so glad that you all were able to come. For those of you that were sick…we hope you feel better and know that you were missed. Those of you that wanted to come and just live too far…thank you for all of your well wishes.

Thank you’s…

To: Daddy & Jo, Mommy & Phil for doing…oh, so much for us.
To: Diane for doing the cake and getting the clown.
To: Jeff for videotaping the event.
To: Cathy & Joe for helping out with some of the expenses of entertainment.
To: Gerry & Joy for the Popcorn maker.
To: All of you that made something for the party. I had so many people tell me how good EVERYTHING was. I also heard a lot of people say…”this is definitely an Italian party…more food then you could eat for a week”.
Special thanks to SPIDERMAN, BATMAN, AND SPONGEBOB.

Each and every one of you made it a special day for Anthony. It is so great to know that you all care enough about him to give up a day to be with him. I asked Anthony what was his favorite thing and he said…The Moonbounce, Woody, the clown, the characters, his friends, etc… I said, “just tell me your favorite”…he said he liked it all.

Thank you Thank you Thank you to everyone. You are all great friends and family. God Bless all of you.

High…the BIG BASH was a HUGE success.

Low…You must be kidding me, there is NONE.

Thursday, May 1, 2003 8:38 PM CDT

Saturday afternoon...MINI UPDATE...We came home Friday morning. Anthony is doing GREAT! Up and running around. Party is slowly coming together. We can't wait to see all of you.

Michael made his 1st Holy Communion this morning. The boys changed in the car and off to their baseball game we went. More after tomorrow's BIG BASH!!!

Thursday's update from here...So much has happened that I'm not sure where to start.

Let's start with the Party will go on.

Backing up a bit Monday and Tuesday Anthony had chemo. Monday he had platelets and Tuesday he had packed red blood cells. Monday he started a chemo fever in the evening and had coughed a couple of times. Wednesday his breathing was very fast and he coughed only a couple of times. Wednesday Anthony fell asleep on the couch and as I watched… his breathing was faster and faster. I called Dr. Rock and she said to come on down. She examined him and found his liver to be enlarged and an extra tick to his heartbeat. She made some really good decisions for us. The first being to get an x-ray of his chest, the second was sending us down to Philly. Unfortunately, we had to go to the Emergency Room.

Talk about BAD EXPERIENCES… Anthony was triaged at 12.8Kg (with shoes on), but the nurse wrote 20Kg. This started a chain of events that went south. He was given double the dose of Tylenol and Benedryl. When I arrived (about an hour after Brian) I questioned what the nurse had done and she told me that she gave the exact dose for his 20Kg body. I said, “that’s great but he’s only 11.8.” She didn’t believe me. She got a scale and he weighed 11.9Kg. Damn, I’m good! No apology came from her lips. They had to adjust his doses of antibiotics they gave him. This delayed the start of drugs. Then there was a shift change. We got a nurse with attitude. If I wanted attitude I would have brought all of my kids with me.

And the doctors wonder why we choose to wait for a night to go to clinic instead of the ER.

As of last night we were told Anthony had Pneumonia. When I saw Dr. Adamson this morning he was leaning towards bacterial infection in his lungs.

This afternoon Anthony had an Echocardiogram. As I watched the screen the right side (which is his left) looked to not be closing (pumping I guess) tightly. That’s my unprofessional opinion.

Shortly after that Dr. Adamson came in the room and SAT DOWN! I thought, “oh sh_t… he sat down, it must be bad”. I said “It’s bad isn’t it”. He said yes and no. He said he doesn’t have Pneumonia, but he does have the signs of HEART FAILURE! I felt something squeeze my heart and I lost my breath for a minute. Anthony’s ECHO results are bad. A normal heart like yours or mine should be between 35percent-40percent, even 30 is okay. Anthony’s is 15!

So we are not coming home today. We are going home tomorrow. The Doctors will watch him through the night while he starts 2 new drugs. A low dose of diuretic and Digoxin (for his heart).

You are up to date with what we know.

Monday’s count...... Wednesday’s counts
WBC...15.5....................1.6
HGB... 8.1....................11.2
PLT... between 14-19......52
Blasts...80 something percent.....46

Thursday’s counts
WBC...0.9
HGB...10.2
PLT...14
Blasts...30percent

Sunday, April 27, 2003 9:18 AM CDT

Wednesday April 30, 2003

Dina has asked me to update you until she can. They need prayers, lots of them please. Anthony has had a fever since Monday but Dina thought it was just chemo fever. Today it was 39.6 (103.4) and he was breathing really quickly so they went to KOP. The doctor there ordered a chest x-ray and saw something but Dina will not know what until they get to the ER. The doctor also said that his liver feels enlarged. Please say extra prayers and know that the ER is slow so it may take a while for Dina to have answers. Meanwhile Dina said "THE PARTY IS STILL ON!!!" More later. Please pray Lynne



Sorry I had the wrong address for Tyler. I fixed it so now everyone can visit it.

NEW PHOTOS ADDED!!!





I’m sorry to have kept you all waiting for Friday’s results. Thursday night Tyler Robbins passed away and it was hard for me to handle. Please stop by his site www.caringbridge.org/pa/tylerrobbins and offer his family your condolences. Then on Friday when I got Anthony’s counts I was scared for him because his white count wasn’t high enough to get chemo on Friday but would have been high enough on Saturday.

WBC…7.0 (rising slowly)
HGB…8.6 (he’ll need blood this week)
PLT…36 (he got these on Friday b/c he wouldn’t have made it through the weekend)
ANC…140
BLASTS…66 percent
Lymphocytes…22 percent

I called Dr Bunin on Friday to ask if we could use Hydrea for the weekend to keep his white cells lower and I never had the chance to talk to her. I did, however, speak with Dr Rock, doc at KOP clinic, and she gave me a script for the drug. He had his first dose on Friday and will take it until he gets his chemo on Monday.

Monday we will head to clinic around 11:00 and Tuesday Brian will take him down to clinic and I will relieve him when I get a chance. This week he’ll need platelets twice, packed red blood cells, chemo twice and possibly a visit with Dr Rock or Dr Bunin. We haven’t had his liver or spleen checked in a lonnnggggg time. We’d like to go to Philly to see Dr Bunin, but something comes up every Thursday. Thursday is the only day Dr Bunin is in clinic. No biggie though…he can just see Dr Rock. Whenever he sees her, Dr Rock, coming at him in clinic he immediately gets whatever is in his mouth out and opens wide for her. She has been keeping an eye on his “blister” that is on his tongue.

We had a great Thursday. I picked up my niece and nephew for the day. We went to Wendy’s to buy lunch and then off to the park. We had a nice picnic on the ground and we played at the playground for almost 2 hours. The four kids just ran from toy to toy there. Then a bully came along and I told the kids to get ready to go while I gave the other mom a dirty look.

Friday the kids played outside and Anthony got platelets. Saturday we cleaned, cleaned and cleaned some more. We dropped 3 out of 4 kids to my mom’s house and took Kelsey, babysitter, and Anthony out to dinner. Yesterday was 17 years that Brian and I have been together (since dating…only 12 ½ of them married). To think no one thought we’d make it a year. HA! Today I guess I have to clean by myself since the older boys aren’t home. We’ll pick them up later.

Have a good Monday morning.

High…Anthony has NOT been in pain all weekend.

Low…Tyler Passing away.

Saturday, April 26, 2003 8:11 PM CDT

I promise to update on Sunday. I'm still pretty upset about losing Tyler Robbins. Please visit his page and offer your condolences.

www.caringbridge.org/pa/tylerrobbins

High...Anthony is holding his own

Low.. Tyler's passing

Tuesday, April 22, 2003 9:26 PM CDT

Anthony, finally, was able to ride his bike this past weekend. He loved every minute of it. He has no pain to speak of. Last night he asked for some morphine. I asked if he was in pain. He said just a little and that if I didn’t want to give him the morphine I could just give him the Oxycodone. Poor baby…he’s a junky at the age of 4. I gave him NOTHING. I told him he could have Tylenol if he really wants it…but that’s it.

Saturday night we went to the Easter Vigil mass where we each sponsored a child. The mass was 3 hours long. I think I’m good for at least a year now. Mom Makoid, I know if you are reading this you are rolling your eyes and cursing me out. That’s ok…God and I have a different kind of relationship. He’s understanding and I’m demanding. It works wonders for both of us. I ask and whether or not he gives me what I want he’s happy that I’m still talking to him.

Easter was VERY nice. We had brunch with mommy’s family. We had dinner at Brian’s brother, Gerry’s house. The kids loved the egg hunt and playing kick ball. Anthony thought that it was so neat that NO ONE could get him out. Dinner was great, thanks to everyone who cooked this year. I wasn’t one of them. My butt was dragging from the mass the night before and getting up early on Easter to do anything.

Sleep and I don’t seem to be getting along lately…AGAIN! Where are those downers when I need them? YA! YA! YA! I thought making a list of the things on my mind would help me get back to sleep, but that didn’t help. I have counted sheep, birds, animals, children, and husbands…oh; I didn’t mean to put that on paper. It just seems like I’ll never sleep again. It’s not even like I am very productive in the middle of the night. Mental note…call doctor…need something to help sleep.

Monday’s counts:

WBC…2.5
HGB…10.2 (?)
PLT…35
BLASTS…56%

Tuesday’s counts:

WBC…2.8
HGB…9.6
PLT…11 (he got these in KOP today)
BLASTS…53%

We’ll do counts again on Friday. Getting platelets on Tuesday’s mess us up for the weekend. We’ll see how it all plays out. Until then have a good week…

High…riding his bike again

Low…none for Anthony…no sleep for me

Saturday, April 19, 2003 12:02 AM CDT

NEW PIC AS OF EASTER!!!

Let’s start with Anthony’s pain. The pain was really bad on Wednesday and Thursday. He was NOT able to ride his bike in the 86-degree weather we had on Thursday. He wanted to, but would back out every time I said let’s go ride the bike. Friday he didn’t need any pain medicine and he was able to bend his knee when he would run.

I don’t understand why he experiences so much pain every time he gets the chemo. I do understand how pain medicine works now. So, hopefully next time he gets chemo I can get his pain under control faster.

Friday’s counts:

WBC…3.3
HGB…11.2
PLT…25
ANC…I forget
BLASTS…56%

I’m a little bothered by the WBC. I think it should be lower by now. I don’t know if it is still dropping or if it is back on the rise. But I am going to put all those thoughts out of my head until we see Monday’s counts. I think we need to all enjoy the weekend.

We had a surprise on Friday. One of Anthony’s FAVORITE nurses, Kelly, was working in the KOP clinic. She usually works in Philly. We wish she would come and work in KOP. Then we would have someone to busty on ALL the time. Trudi can only take so much of us. Kelly used to chase Anthony around the halls of CHOP. He loved the chase, but hated when she caught him. Kelly…girl, you know we love you.

This weekend the boys have their 1st baseball game…kid pitch. Michael had better keep his eye on the ball. Then tonight Brian and I are sponsoring 2 of my mom’s grandchildren since they are converting to Catholicism. Some catholic I am …I had to look up the spelling of that word. Mass is not until 8:30 tonight…I hope I don’t fall asleep. Sunday we are heading to brunch with my mom’s family and dinner at Brian’s brother’s house.

I sure hope the Easter Bunny remembers to come to the house. He’s been known to forget until the last minute. This year shall be a big challenge because Anthony doesn’t go to bed until all hours of the night.

We would like to wish you all a very HAPPY EASTER. We hope the Bunny comes to visit all of you.

High…KELLY….PAIN IS GONE (for the most part)

Low…unsure of counts

Tuesday, April 15, 2003 9:08 PM CDT

I’m so sorry that I have not kept you all updated. The results below are from memory, but I can tell you that the WBC, BLASTS and PLT counts are right.

Monday’s CBC results:

WBC…17.3
HGB…12.3
PLT…50
ANC…0
BLASTS…90%

Tuesday’s results:

WBC…7.7
HGB…11.7
PLT…22
ANC…0
BLASTS…79%

Monday I took Anthony down to the KOP clinic to get chemo. He did well through the whole infusion. Anthony was hoping to see Kathy, but she wasn’t due back to work until Tuesday. Believe it or not Anthony did NOT need platelets on Monday. Thank God maybe he is going to hold on to them a little longer now…ok, Dina, wake up…I know I must be in dreamland to think he would do better with platelets. At this stage of the game things tend to get worse not better.

Last night I was on my way to bed (on the phone as usual) and to check in on the boys when…Anthony was nowhere to be found. He wasn’t in his room, Chris & Mike’s room, Nick’s room, my room, the bathrooms, the closets, under clothes or beds. I screamed down to Brian to see if he knew where Anthony was and he said…IN BED! I told him he was NOWHERE to be found upstairs. Brian checked downstairs and he was in my living room under our new outdoor cushions…sound asleep. Good thing I check on my kids before I go to bed.

At 2am Anthony called out in pain. Brian brought him to our bed and he was in MAJOR AGONY. His knees were killing him and we weren’t allowed to touch him, but he could hug us. He wanted the pain medicine. We know he is in a lot of pain when he wants the yucky medicine. We gave him a dose and it didn’t do much. At 4:30 Brian gave him more and he fell asleep awhile later. Still not feeling better though. At 8:30 we gave him more pain medicine and by 9:15 he was begging to go to clinic to get real medicine. I called Dr Bunin and she said I could give him some morphine (I was giving him Oxycodone). She heard him ask to go to clinic to get some IV Morphine. He says it works better for him.

After all that medicine he still wasn’t feeling much relief. I think he is so used to pain that until it gets unbearable he deals with it. BUT, when it gets too far along…it takes forever to get a handle on the pain…to actually find a comfort zone. Trudi pushed in some Morphine when we got there and again about an hour later. He was still hurting when we left clinic today. He did take his usual nap in the car on the way home. I wanted to drive for hours just so he could get some relief but I had to get home. We gave him more pain medicine around 4PM and we laid down with him in our bed. Anthony and I fell asleep sometime around 4:30. He slept for a long time. But again we woke up in pain. Too much sleep at once is bad because then he can’t take the medicine, but it seems awful to wake him when he is sleeping soundly. DOUBLE EDGE SWORD!!! I wish I had IV medicine to give him. I could leave him hooked up all the time at home.

So, as you can figure out on your own we went to clinic again today. He received chemo, morphine, platelets, morphine and a good dose of KATHY!!!

Let’s end on a good note…he asked me if it was going to be nice again tomorrow so he could ride his bike. Believe it or not sometimes he needs to do something to get his legs moving. I hope he can ride his bike tomorrow.

More on Friday…

High…Kathy’s back…wants to ride his bike

Low…PAIN, PAIN, PAIN, & more PAIN

Friday, April 11, 2003 9:45 PM CDT

On July 1, 1999 Anthony was diagnosed with leukemia. We were terrified for him. The next day we found out that it was AML. We thought the doctors had handed him a death sentence. On February 17, 2000, we found out that Anthony had his 1st relapse. We began to plan a funeral for fear we would need it. If all that wasn’t bad enough, on April 11, 2002, Anthony relapsed for a 2nd time. The doctors don’t have any hope to give us at all. But here it is 1 year from his last relapse and Anthony is still here with us enjoying life each and every day. I remembered when he relapsed last time thinking to myself…please make it to your 4th birthday, then, Halloween, Thanksgiving, Christmas, New Years, Valentine’s Day, and now we are approaching his 5th birthday.

Anthony has been battling the ugly demon, leukemia, since he was 13 months old. His whole life has been about; taking medicine, seeing doctors, blood transfusions, chemotherapy, radiation, hospital visits and stays, bone marrow aspirates, lumbar punctures, broviacs, flushes, dressing changes, cap changes, IV poles at home, IV hydration, physical therapy, occupational therapy, speech therapy, itinerant teachers, cancelled play dates, no digging in the dirt, not being able to attend school, not having pets and the biggest thing…being separated from his brothers when he has to be hospitalized…they are his life.

We’d like to take this time to thank everyone that has helped us along the way. You may have thought it was nothing but you have helped us when we needed it most. Whether you; listened to me bitch, were on the other end of my meltdowns, came up with more chemo options, watched our other children, sat with Anthony in the hospital, brought us food, gave us gas gift certificates, had fundraisers, attended fundraisers, joined us for the relay, brought Anthony a present, did my hair for free, bought us a car, lent us money, gave us money, cleaned our home, did our laundry, got us out of the house, just sat with me and had tea, did homework with the older boys, got them off to school, picked up and dropped off Nick to school, watched MY day care kids…thank you. I’m sure I forgot to thank you for something. So, thank you all for anything you have ever done for us.

Friday’s CBC:

WBC…3.0
HGB…12.7
PLT…12
ANC…180
BLASTS…78%
Lymphocytes…16%

Anthony had his hair buzzed last night…VERY SHORT. He kind of looks like a chemo patient…speaking of chemo…Hopefully, Anthony will hold out until Tuesday for chemo. That will be 2 weeks from his last chemo. Anthony did get platelets at the KOP clinic today. He was full of himself while he was there. He is itching for Kathy to get back from her vacation. He was playful with the staff today.

Anthony didn’t wake up today until 11:40 when I woke him up. It must be nice since the hours he slept last night were the total of my hours that I slept for the week. Sleep, that sounds good. I’m going to head off to bed…Goodnight everyone. I hope you all have a great weekend.

High…1 year and still counting

Low…Anthony misses Kathy…come home soon

Wednesday, April 9, 2003 10:15 PM CDT

Wednesday’s counts:

WBC…2.3
HGB…8.1 (he could have waited until Friday for these)
PLT…83
ANC…92
BLASTS…80% (These need to go away and stay away)


Nothing else is really new here. Anthony still refuses to go to school. Nick wishes he could go every day…I sometimes wish he could go every day. Anthony started OT (occupational therapy) tonight. He also has Physical Therapy and speech therapy. His ST just quit for her company and he doesn’t have anyone right now. I’m bummed because he needs that therapy the most.

Christopher has been complaining of a lot of belly pain. He has lost some weight and really doesn’t want to eat. The doctor and I think maybe it’s a juvenile stomach ulcer or acid reflux. I did have a talk with him about…him maybe needing more attention. I told him he doesn’t want to have needles sticking into him to get attention, so I hope that this is not all for attention. Trust me, if it is…I’ll make sure he gets lots of needles in his arms. I’ll have them poke and prod at him forever. He’d better come up with a better solution for attention then faking medical problems. I told him he didn’t want to ever go through what Anthony does. I explained that we all need love and affection and I’ll try harder to give him more…but he still insisted that his belly hurts.

Michael’s eye is getting better. It has gotten darker…but it is healing. I’ll be sure to thank the coach for causing so much FUN the 2nd practice of the season. Mental note…when he pitches again, tell Michael to run in the opposite direction.

I was going to go to Philly tomorrow for a check up for Anthony, but I need some down time for me. HEY EVERYBODY…I FINALLY DID MY TAXES TONIGHT!!! Alex, I bet you’re surprised I didn’t wait until 4/15. Well, I still have the local taxes to do…maybe next week. Hey Alex…when are we going to do tea?

Friday will mark Anthony’s 1-year anniversary since his 2nd relapse. Who said he wasn’t going to be here to see it? Certainly not Anthony! What an amazing fighter he is! I just love that little MAN.

By the way, I have sent out the directions to most of you that have asked, but the rest of you need to wait until I finish my local taxes...SORRY! They are coming. I promise.

High…Very HAPPY these last few days

Low…a couple of deaths in the family lately

Monday, April 7, 2003 10:02 AM CDT

Hi there friends...I am looking for some info and I hope someone out there can help me. I am looking for the web address or a phone # for the place to buy "KIDSTUFF" entertainment books. It is a school fundraiser that I want our school to start using and I can't find the number. If you can help me, please email or sign the guestbook with the info. Thanks...Love, Dina

CHECK OUT THE NEW PHOTOS

Anthony must still be praying for SNOW!!!!!!!!!

friday Anthony asked his daddy when it was going to snow again. Brian told him not until next year. I guess Anthony wanted to prove him wrong.

Monday's CBC:

Wbc...1.8
HGB...8.4
PLT...21


The differential (blasts)will be updated when I get back from clinic today.

Saturday was a lazy, rainy day. Sunday we went up to CAMP NEUMANN to see where Chris and Mike will each spend one week away from home this summer. It reminded me of all the camp movies I saw as a child. Christopher seemed to really like it. Michael was home with his Aunt and Uncle for the day.

Then we went to the Phillies game...they lost. It wasn't the most exciting game. Anthony slept for an hour during the game and so did Christopher. So much for baseball fans. A big thank you goes out to the Phillies catcher Mike Lieberthal for the tickets. Mike is a great guy. He is also always at the Halloween Party for the CHOP families. We also met him at CHOP while Anhtony was inpatient.

Michael went to baseball practice yesterday since he didn't go to the Phillies game with us. He was the 1st player up to bat and the coach threw the 1st pitch and nailed Michael right in the eye/nose. It looks pretty bad. Poor Michael...I bet he wishes he had gone to the Phillies game after all. I felt bad because we weren't there. His uncle Jeff was with him. Jeff is the assistant coach...NOT the one who nailed Michael.

Running to clinic.

Ok, I'm back from clinic. I had to run to clinic (for platelets)because the older boys were getting out of school early and the roads were getting pretty bad...snow and all...you know how it is.

Nothing else is new for now. Check back on Wednesday.

High...More snow for Anthony

Low...driving in snow

Friday, April 4, 2003 6:42 AM CST

CHECK OUT THE NEW PHOTOS

Saturday...9PM...I typed too soon...After the Saturday update I kissed Anthony and he felt warm. His temp was 39.1 (102.4). I wanted to scream. He was running around and I called CHOP to make sure Thursday's culture came back negative (which it did) and then I just gave him Tylenol. That was at 3:30. It is now 9PM and his temp is 36.9 (98.4). Where did the fever go...only God knows for sure.

Saturday’s (2PMish)mini update is in red…

Friday’s CBC:

WBC…2.0
HGB…9.2
PLT…21
ANC…280
BLASTS…35%
Lymphocytes…27%

Anthony had a fever until 11am on Friday and then it just went away. No medicine was given…it just went away. I can’t explain it. However, my ear pain is getting worse. I’m on Augmentin and I put myself on a painkiller…neither seems to be working. I just want to take something sharp and scrap, or scratch, the middle of my ear.

Anthony continues to do well…even when his fever was high he was running around like a nut…my little jellybean. We saw Hannah and Madeline at clinic yesterday and when they were leaving I told Anthony WHEN he gets older he could date the twins…one on each arm. He said, “Was that their daddy with them”. I wonder if he was preparing how he would ask him to date the girls. Just teasing!!! More on Monday…


After yesterday’s experience at clinic I remember why I hate going to Philly so much.

Let’s go back a little…

Wednesday’s CBC…

WBC…8.3
HGB…9.5
PLT…99
ANC…498
BLASTS…54%

Thursday’s counts…

WBC…2.0
HGB…9.5
PLT…30
BLASTS…40%
Lymphocytes…25%

Anthony has had a fever off and on since Monday. Since Wednesday I have not been able to get it below 37.7 (about 100.0). It has been as high as 39.8 (103.6). He had chemo Tuesday and Wednesday this week. The fever could have been from that. Since his chemo fevers usually don’t go this high I decided to call the clinic. The 1st time I called the night service was still on so I had to wait. After they turned the phones on I called a couple more times but was put on hold and told all nurses were working with other patients and one would be with me shortly…NOT! Finally I resorted to calling his doctor because I had to let someone know what was going on because I was going back to sleep. Tuesday night Anthony had me up from 4am on and Wednesday night he had me up at 2am and on. I was exhausted yesterday morning and had to go back to sleep. It was hard enough trying to stay awake for the phones to be turned on.

So, I woke up and called clinic. The nurse I spoke to didn’t give me any info. I wanted to know if they were going to keep him or not. If not I could have his cultures done in KOP and be home in an hour. Instead I had to go to Philly…but I had to pack as if I were staying. I got to the hospital at 3:15 and when I saw the Doctor, GRUPP, he pointed to the clock and said you should have been here earlier…I said your nurses should have answered the phone. He spoke to me like I hadn’t a clue what was going on. I wanted to scream that I had been doing this with Anthony for almost 4 years and I’m NOT an idiot…but I didn’t. I was too tired to scream. The nurses in clinic were GREAT! We love you guys…but it was a visit we could have had in KOP. Except they did give him a dose of Vancomycin…which I can’t imagine will do much because it should be administered every 6 hours. It’s been 16 hours and the cultures are still negative. That doesn’t mean it won’t turn positive, but it does mean something else may be going on in his little body. Of course, it makes me think of fungus. When I took his temperature an hour ago it was 39.5…now it is 39.8 and that’s with Tylenol.
Anthony will go to KOP this afternoon to get platelets. I imagine they are really low because I was told that fevers eat up your platelets.

Yesterday in clinic my ear started to hurt. When we got home at some unGodly hour last night I ran to the doctors and he started to poke at me. I have a middle ear infection. It hurts so bad. It makes me want to beat every parent out there who says that they have let their child work through an ear infection because they didn’t want to give them any antibiotics. Just ranting away because I’m in a lot of pain.

I’ll update today or tomorrow with today’s counts and clinic visit. Maybe I can get a CAT scan for Anthony next week. I could just start him on the anti fungal med myself…well; we’ll see what happens at clinic first.

Anthony was having pain the last few days, but it seems to have subsided. Thank you, God!

We are supposed to go to the Phillies game on Sunday…that is if all goes well.

We have over 100 people coming to the party so far. If you emailed your response, you should have received a copy of the invitation. If you want to come and I haven’t mailed or emailed you an invitation please call me or email me…you can even leave me a message in the guestbook.

High…he has been making us laugh a lot…even in the middle of the night.

Low…Dr Grupp being an ---hole.

Tuesday, April 1, 2003 9:03 PM CST

Monday’s counts:

WBC…8.3
HGB…10.7
PLT…25
ANC…0
Blasts…68%

Tuesday’s counts:

WBC…14.4
HGB…9.3
PLT…7
ANC…432
Blasts…63%

Anthony went to clinic today for platelets and chemo. He did well and hasn’t had a fever from the chemo. He did have a fever last night of 38.3 (almost 101.5). We gave him Tylenol and had him sleep between us. It was gone in the morning.

The new med (Amicar) seems to be doing great as far as his bleeding goes. His platelets were 7 and he didn’t bleed at all. The blood blister is no longer under his tongue…he swallowed it on Saturday. I was soooo grossed out and he was soooo proud that it was gone.

I’m sad to say that Anthony has been giving me a hard time taking his new med the last couple of days. The 2-½ pills he takes numerous times a day get cut up into 10 small pieces. Last weekend I gave him a piece that was a little big and he gagged (just like me). Since then he wants me to crush everything. It sucks for me!!!!!!!!!

Saturday afternoon Anthony wanted to ride his bike. Usually it’s no big deal but it was raining really hard. So we put on a raincoat, grabbed an umbrella and headed out to ride his bike. Brian took pictures as he rode his bike and I held the umbrella…in my pajamas.

The weekend went by too fast. Brian and I did escape for 2 hours to go to the movies. We saw BASIC with John Travolta. Every time you think you have it figured out …you don’t. It was good…I love John! I have ever since Grease came out.

Chris and Mike started baseball on Monday night in the freezing cold. My foyer carpet is now stained an ugly brownish red clay from the mud at the fields. You would think the boys would have taken off their shoes OUTSIDE…maybe next time.

We have over 100 people coming to the party so far. If you emailed your response, you should have received a copy of the invitation. If you want to come and I haven’t mailed or emailed you an invitation please call me or email me…you can even leave me a message in the guestbook.

High…Playing in the rain

Low…needed chemo after only 2 weeks

Friday, March 28, 2003 8:20 PM CST

Friday’s counts:

WBC…1.7
HGB…10.2
PLT…12 (he got these today)
ANC…34
BLASTS…46%
Lymphocytes…28% (I have been slacking on his med to boost these)

Anthony went to clinic in KOP today to get his platelets. We were in and out in 1 hour. That’s the way we like it. For all of you people out there who are unwilling to give the KOP clinic a shot…you have no idea what you are missing. Heck, it’s worth coming from Philly to KOP for simple transfusions. You can be in and out before you can even get registered in Philly. Ok enough downing the Philly clinic.

As usual Anthony is in high spirits….full of energy…and smiles. He loves all of us and plays well with everyone. He continues to take his millions of meds nice and enjoys riding his big wheel. I was not able to convince him to go to school today, but maybe next week.

BTW, the new med. is working wonders on Anthony. He needed a transfusion of platelets today and I didn’t even know it. He didn’t have one nose bleed. His gums didn’t even bleed when I scrubbed his teeth today.

I actually sat back and really watched Anthony play these last few days. I notice things about him that I never noticed before. I also see him as others probably do. I know I say he looks and acts GREAT and generally I think so…but, if I were to really take a close look and step outside my little box…I would see a little boy who is sick and does look it occasionally. I wonder if that is what all of you see and just don’t say it to me. He is a remarkable little boy; he’s 44 if you ask him.

Today he was screaming for his STAT LOCK (holds his broviac in place) to be put back on. I was trying to give his skin a break from the adhesive. By the time we were leaving clinic he was begging me to find Dave (from pharmacy). Dave is our supplier…take that any way you want.

Anthony asked the doctor to look in his mouth at his splinter on his tongue. It is actually a blister of some sort…not filled with blood. THANK GOD! It is funny how kids think things are different then what they are. Imagine…Anthony has NEVER had a splinter and he thought his blister was a splinter. He’s goofy just like his daddy.

Nicholas opened his 2nd story window yesterday and caused me to go into a tizzy. Michael used to do that stuff. He would stand on the windowsill and talk to the neighbor across the street. Nick was talking to the same neighbor. Luckily he didn’t climb up on the windowsill…YET!

Nothing else to share today…it is going to be a relaxing weekend. Next week starts baseball for the 2 older boys.

Party arrangements have finally been finished so start looking for your email giving you all the details in the coming days. Sparkles the clown will be there and I ordered the MOONBOUNCE. This was a MUST for Anthony. Lots of CHOP families will be joining us again this year…YEAH!!!

High…Enjoying each day with Anthony

Low…none today

Thursday, March 27, 2003 6:48 AM CST

Wednesday’s counts:

WBC…1.1 (this is rising…hopefully, slowly)
HGB…11.1 (this is a huge drop since Monday, 12.4)
PLT…61 (this was a nice surprise)
ANC…22
Blasts…46%
Lymphocytes…36%

Good news came yesterday when Reggie, from CHOP, called. He said Anthony’s new Rx was approved. Thank you, God. I had Anthony primary Dr call in tablets instead of the liquid he was ordered because I figured he could swallow pills with his pudding but 2 teaspoons of yuck wasn’t going to go over big with him. He does take 7 or 8 meds twice a day. It has been taking me 30 minutes to finish all of his meds now that we added the new one. The reason being is the tablets I had his Dr order are HUGE. I have to cut them in fours. He takes 2 ½ tabs (10 pieces) every 6 hours. So, that is 10 spoonfuls of pudding to get just that down. We are VERY lucky that Anthony likes medicine.

Anthony’s blood blister in his mouth is o longer full of blood, but it just sits under his tongue. I want so much to cut it out. Last night was the 1st time he said it bothered him. It looks like a shriveled up grape sitting under his tongue. God Bless Him!

I tried to get Anthony to go to school yesterday…but he wouldn’t. Maybe Friday he’ll be more willing.

Party arrangements have finally been finished so start looking for your email giving you all the details in the coming days. Sparkles the clown will be there and I ordered the MOONBOUNCE. This was a MUST for Anthony. Lots of CHOP families will be joining us again this year…YEAH!!!

Anthony has been VERY loving to all of us lately…even Nicholas. He HAS HAD LOTS OF ENERGY. His PT was here yesterday and she said she hasn’t seen this kind of energy in him…EVER. Scary. He has been riding his bike up a hill and into a cul-de-sac up our street. He loves to ride his Big Wheel (it’s little).

We work on his weight daily and I haven’t really seen a change. He does eat, but I don’t know where it goes…

Not much more news to share…I’ll update tomorrow with counts.

I have received a lot of emails and guest entries telling me you are coming to the party. I am sending you all the info on the whereabouts this week. We are up to about 100 people. Please remember if you are coming to the party to please call me, email me or sign the guestbook to let me know. THANKS!

High…Feeling great…Party arrangements complete
Low…Under the tongue THING

Tuesday, March 25, 2003 6:20 AM CST

Monday’s counts:

WBC…0.7
HGB…12.4
PLT…11
BLASTS…48%
Lymphocytes…38%

His weight...11.9kg (26lbs)

I have received a lot of emails and guest entries telling me you are coming to the party. I am sending you all the info on the whereabouts this week. We are up to about 100 people. Please remember if you are coming to the party to please call me, email me or sign the guestbook to let me know and I'll get back to you with the details. THANKS!

Anthony is doing well for now. He has a large blood blister under his tongue that does not seem to bother him right now. I think it bothers Brian and me more. Anthony is NOT holding onto his platelets very long any more and his body does not get total healing before he needs the platelets again. I am hoping and praying that his platelets hold better this week because he didn’t get any chemo. His mouth really needs to heal. I am afraid if his mouth continues to keep getting blisters in it that he will NOT want to eat. I’m not going to put him in the hospital just for IV nutrition and there is NO WAY he will want an NG tube. It would be a hard enough sell to me let alone him.

Dr Rock suggested a new RX for Anthony. It would be 10 ml to swallow every 6 hours. I thought that was a lot to ask of Anthony seeing that he is already taking 7 or 8 meds twice a day. Dr Bunin called in the tablets for him, but of course the drug is NOT on the formulary and it needs a pre-certification.

Let me just explain that the doctor writes out a script and we bring it to the pharmacy…the insurance company denies it and says it needs a pre-cert. This means the doctor needs to write or call the insurance company to request the drug be given to their patient. HELLO…isn’t that what a prescription is for. It is a piece of paper that tells them their patient needs that drug. The insurance company is making double the work for the doctors thinking they will not do the work…and some won’t because they don’t have the time to fight with them. However I do manage to find someone at CHOP who is always willing to scream at the insurance company for us. This time it is Reggie…thanks!

Hopefully, Anthony will be approved for his new drug because it is for his mouth blisters.

I have been pretty depressed reading about all of the children that have been dying lately. Between 1999-2000 we lost a lot of friends to cancer. It is happening all over again. Some hit harder than others. Some children suffer and some don’t. Some have lived a very short life and I can’t imagine how the parents move on. I read their pages and emails and tears just stream down my face. Some of these children I only know by reading their sites. Some people say maybe we should stop reading other peoples sites, but it is also what helps us to go on. Some children do make it. You just never know which ones will or won’t make it. We get such encouragement and support from people all over the world because we have something in common…a child with cancer. They give us what family and friends can’t… Understanding of our daily lives…just how physically and emotionally draining it really is. The only fight I have left in me is physical…so don’t piss me off….I might knock you out.

High…He is doing well

Low…so much bleeding this last 2 weeks

Friday, March 21, 2003 3:00 PM CST

Today’s counts are great:

WBC…0.8 (GREAAAATTTTTT)
HGB…12.6
PLT…4 (I ran him down as soon as I could today)
ANC…0
BLASTS…40% (still going down)
Lymphocytes…52% (those MGN-3 pills must be doing something)

I’m very pleased with his white blood count. Most parents would be freaking out with it being so low. WE are always happy to see it go low and stay there for a little while. Anthony’s lymphocytes have not been that high in like…forever. I don’t know if it’s the pills or not, but we will continue to give him the high doses for now.

Yesterday morning I woke up at 4am with massive cramps…two minutes later I was vomiting in the bathroom. This happened for hours. Finally around 10:30 I called the doctor and he said it wouldn’t help for him to give me oral meds to stop the vomiting because I would just throw it up. He made me come in for a shot in the butt. Now, for me to take a shot in the butt, you know I was a hurting pup. I don’t do needles very well. As I sit here I can still feel the burning in my butt…not to mention the lump it left behind. By 9am Brian was feeling as sick as me and Anthony and Nicholas had the run of the house. How incredibly scary is that?

I feel much better today…24-hour thing I guess. Brian still feels kind of shitty.

We don’t have any big plans this weekend. I think we will just take it easy all weekend and get lots of rest. We all need it.

This is a poem my neighbor, Kelsey, wrote. SHe is a sophomore at Pottsgrove High School.

A little boy, the age of 4,

With everyday, I love you more.

You are my baby & my brother,

Not by blood or by mother.

To see you in pain, makes me cry,

To know that one day, you could die.

Hopefully, they'll find a cure,

So you will be in pain no more.

You fill my heart with happiness,

I love you, Anthony I must confess.


High…counts

Low…viruses

Wednesday, March 19, 2003 5:49 PM CST

Today was a VERY LONG day…but, a GOOD DAY.

Anthony had his CAT SCAN in the KOP clinic today. We were in and out in no time at all. The scan showed, are you ready for this…NO FUNGUS!!!!!!!!

The question is: Was it ever fungus?

Dr Bunin has decided to keep him on the fungal medicine for another week. That’s fine with us because he doesn’t seem to have ANY side effects from it.

Today’s counts:

WBC…5.1 (YEAH!)
HGB…8.2 (he was transfused today)
PLT…47 (he’ll get these on Friday)
ANC…102 (I can’t believe he actually has one of these)
Blast…55% (It was nice to see these drop)
Lymphocytes…34%


All in all, the day was a success. Well, maybe not where his weight is concerned…he was 11.7kg (25lbs) today. Now, he didn’t eat or drink anything this morning because he was having contrast for the CAT scan. Why he can’t eat and drink I’ll never know. They don’t sedate him. He actually lies there very nicely.

Today he had chemo and packed red cells. We were there by 10am and left by 3:30 (I think). He fell asleep in the car and he is still sleeping at 6:30PM.

Anthony was having some hip pain today and with a little morphine pushed in him he was up and around in no time at all. What a sport he is!

Nothing else is new. More on Friday after clinic.

High…no fungus, WBC, Blasts

Low…weight, hip pain

Tuesday, March 18, 2003 1:17 AM EST

Yesterday we went to clinic in KOP for Anthony to get platelets. Trudi drew his CBC and a culture. Kathy (lab Tech) came out a short while later with the bad news. I feel bad for Kathy when she has to hand me shitty results. Here are the counts:

WBC…26.5
HGB…8.4
PLT…16
BLASTS…88%

Anthony just had chemo last Monday and it was working great until yesterday. I’m just so bummed out. It has been 11 months and 1 week since he relapsed. I feel like he doesn’t want to die. He is fighting soooo hard. At this point I feel we are letting him down by NOT finding some kind of miracle for him. Hey Colby…could you send some of your miracle this way?

I spoke to Dr Bunin a couple of times yesterday and we decided to go back to the Ara-C and Mitoxantrone which has been doing an OK job of keeping his counts low.

Regret…I don’t want to have any of this. I want to know that we have tried everything that we could. I feel like we aren’t doing enough, but what more could we do. We aren’t scientists that can come up with a cure. I know lots of people that work for drug companies. They don’t know of any new drugs coming out any time soon.

Let me just mention again…I LOVE HAVING THE KING OF PRUSSIA CLINIC so close to us. Anthony needs to go there Monday, Wednesday and Friday this week. Wednesday he gets his Cat Scan for the fungus. Pray for some good change.

Enough bitching and moaning…

On a good note the boys came home with their report cards yesterday. They did GREAT! Chris even brought up 2 of his grades that were C’s to A’s. Michael’s report card is ALWAYS wonderful.

The weather has been great and the boys have all been playing outside a lot. I love when the sun is out and warming all of our faces. I think that is why today is a better day for me.

Must run…Nick and Anthony killing each other today. Tomorrow they will be the best of friends.

High…KOP clinic

Low…pretty much everything up above

Monday, March 17, 2003 4:06 PM CST

It was a bad day. WBC...26.5

He had to have chemo today.

Just had it last Monday.

It was a long day.

Left home at 11:15...got home at 4:15.

Will update when I feel better...right now I'm pissed at the world.

Dina

Friday, March 14, 2003 7:03 PM CST

Mini update (Monday) Anthony's white cell count and blast are up. Dina contacted Dr. Bunin and they decided to give him Chemo TODAY. Keep on fighting Anthony we love you.

***Just a quick update(Sunday)...We are still home. Anthony's fever is coming and going. This morning it was finally all gone. Hopefully for good. Tomorrow I'll have them do a blood culture while we are in KOP for platelets. ***

Friday from here...

It was so nice yesterday not to have a low. Today I will start out with our low…FEVER!!!

Let’s start with how the morning began…

Nick woke up and told me he threw up in the toilet upstairs. Poor baby he didn’t even call Brian or me. That goes to show you he may not be my son. When I throw up I call someone and make him or her stay on the phone with me until I’m done. I’m always afraid that I am going to die while I’m throwing up. A fear that I have had since I was little. Anyway, Nick went to school because he said he felt good and wanted to go. I wasn’t sure if he really threw up or not…he likes to tell stories, ask anyone who has ever watched him. His teacher picked him up and called me by 9:05…Nick was trying to throw up in the bathroom and nothing was coming up.

Brian picked up Nick and my mom sent her husband, Phil to pick up Nick. Poor Pop Pop Phil…he always has to take care of Nick when he is sick. How many PopPop’s do you know that wipe little kids butts? Not many…I’m sure.

Then Anthony woke up at 11:15…must be nice. He came over to me and smiled at me and I saw blood all over the inside of his mouth. When I took a closer look into his mouth I noticed a HUGE blood blister covering the whole left inside cheek of his mouth. I wouldn’t let him eat a thing for fear he would pop it and he would just bleed out all over. I figured his platelet count was about 5. I packed up our stuff and headed down to the KOP clinic. THANK YOU GOD FOR HAVING THE CLINIC IN KOP.

Anthony got his platelets and we were only there MAYBE an hour. We came home and things were great until 6:30 when I kissed his forehead…FEVER of 102. I called CHOP to see if it could still be a reaction to the platelets but she said no. She (the fellow) wanted us to bring him in. I said,” Dr Bunin said he is on enough medicine to cover anything that would be fungus, gram positive, or gram negative”. She still wanted us to come in and get a culture done. I just can’t bring myself to sit in the ER all night for a FREAKIN’ culture. We gave him Tylenol and we are waiting it out.

HEY CHRISSIE O, I know I drive you crazy…you can call me and yell at me all you want.

Anthony’s counts:

WBC…7.1 (and still dropping)
HGB…9.6
PLT…5 (I was right)
BLASTS…44% (Big DROP)
Lymphocytes…31% (we give him a cell booster to up this)

I mentioned before that we were giving Anthony an over the counter cell booster, it’s called…MGN-3. We think it works wonders. It boosts T-cells, B-cells, and NK (natural killer) cells. NK cells kill cancer cells.

When Anthony was in the hospital last week his lymphocytes were like…NIL! That’s because we didn’t give him any while he was in-patient. Since Monday we have been giving them to him faithfully. See it does help.

High…drop in blasts

Low…FEVER

Thursday, March 13, 2003 11:39 AM CST

Wednesday’s CBC results:

WBC…12.2
HGB…9.5
PLT…64
BLASTS…96%

His white blood count is taking forever to drop. I did NOT have blood taken down to KOP today. I was happy knowing his counts dropped down to 12.2. He will have his counts done again tomorrow and he will get platelets.

I am HAPPY to report that Anthony’s LIMP is all GONE. He is walking and running just fine. However, Anthony’s idiot parents forgot to give him his Vancomycin on Tuesday and forgot to give him his fungal medication last night. Now, for all of you medical personnel out there…don’t give me shit. There have been plenty of times when you have made a mistake. Tuesday, Brian was having a lot of chest pain and stayed home from work. I was more focused on making him feel good than on my poor Anthony. Last night he fell asleep playing his Playstation and we couldn’t arouse him to take his meds.

Have I mentioned that Anthony is at school right now? Thank God for the break. Poor Mrs. G. she had to take him kicking and screaming that he didn’t want to go. As she took him out of my arms he started to scream, “NO, I DON’T WANT TO GO…I WANT TO LIVE”. I was a little freaked out…how about you? He repeated that several times. I try not to read into things…it drives me crazy.

I know I promised a result on the ECHO, but I still haven’t gotten a result yet myself. I called Dr Bunin today in hopes she can find a result faster than I can. Usually I’m pretty persistent about trying to find out results, but this time I’m going to let someone else do it. I need a break from making so many phone calls.

I forgot to mention in Tuesday’s update that Tuesday the 11th was 11 months since Anthony relapsed. Let me mention that he is doing great…except for that nasty fungal in his lungs which doesn’t seem to bother him.

I know most of you email or call me for advice or info about medical problems…because you all think I am a doctor…I’M NOT…but this time I need info on fungus. I was too afraid to ask the doctors when we were in the hospital and now I don’t want to bother them. The questions…how does fungus affect us? Will it stop him from being able to breathe? How fast does it spread if it spreads? Will his body be able to heal with medicine alone since his counts are low? How long will it take to go away? How will I know if it has spread to other organs? Why can’t we just suck it out of him?

I could go on and on with questions. If any of you know the answers please email me. I’d like info that I don’t have to look up for myself.

High…He went to school.

Low…none today…that’s nice

Tuesday, March 11, 2003 10:26 AM CST

Yesterday was a long day in clinic. We arrived at 10:20 and didn’t leave until 6:00. Anthony had his new chemo (Mylotarg) and platelets. The chemo runs for 2 hours and then the nurses need to watch him for 4 hours. I felt bad because Trudi (Anthony’s primary nurse in KOP) and Dr Rock had to stay with us.

Monday’s counts…

WBC…26.5
HGB…10.2
PLT…26
BLASTS…94%

Tuesday’s counts…

WBC…22.0
HGB…10.0
PLT…166
BLASTS…95%

Good news…

The $500.00+ bottle of Voriconazole (anti-fungal medicine) IS being covered by the insurance company. THANK GOD! I scheduled Anthony’s CAT scan for next Wednesday in KOP. Please pray for an improvement.

I sent his blood off to the lab this morning in hopes of a bigger improvement then what we got. I know I didn’t give it much time. I just get scared that it won’t work at all and his counts will continue to rise…much like the visit to CHOP in December. I look at it this way…if he were inpatient then they would be doing a blood draw daily. Why not while I’m home? Anthony only needs blood transfusions every three weeks. No big deal if he needs one at 2 weeks instead.

Anthony has been running around all over the place. He even raced me in clinic yesterday. The limp persists, but he manages to do just fine with it. He has NOT had any pain medicine since Thursday evening. He DID get a fever in clinic while they were watching him. It was 38.5 (101.3) and never went any higher. Today he is normal again. Normal, maybe that’s not the word to use with Anthony. He does NOTHING in a normal fashion. He can’t even have leukemia like a NORMAL child does. The doctors tell me this or that will happen and it NEVER does, or they say that never happens and it does with Anthony. He does nothing by the book. THAT’S MY BOY!!!!!!!!

High…he seems FINE

Low…long visit yesterday

Sunday, March 9, 2003 9:04 AM CST

If you have not read the page in about a week please read the last journal entry where I have recapped the whole week.

It has been a busy weekend. Friday Anthony did great with his Vancomycin (IV anti-biotic). He actually has NOT had a reaction to the med since we left CHOP. We have been running over the usual 1-hour since he seems to be doing better with it.

Saturday morning started off with a visit from CHOP Home Care. The nurse checked him out and he looks and SOUNDS great. He still walks with a limp. I wish we knew why. He has NOT had any pain medicine since Thursday at 10:30 PM…that’s a good thing.

By noon I had Chris and Mike at their baseball evaluations. Anthony had to be hooked up again at 2PM and the boys had to be at basketball by 4:00 for their game. Brian’s sister was picking up the boys and taking them to a sleep over party for their friend. Brian and I are standing for my niece and nephew for Baptism and Confirmation (they are converting to Cathalisizism) so we had to be at a special mass by 5:30. We went out to dinner after the service and never got home until after 9. Just in time to start Anthony’s pre-med for his Vancomycin. It was a long day.

Today, I plan on resting ALL DAY! Tomorrow will be another long day. Anthony needs a CBC (complete blood count), a blood culture, a trough (to check his level of VANCO), and most definitely chemo.

When I spoke to Dr Bunin on Friday, I asked if Anthony could get the MYLOTARG next week…Monday. She said yes! So, we now need to pray for the MYLOTARG to do something…anything…more than the other chemo has been doing the last 2 weeks.

I checked on Anthony this morning and he seems to still be fever free. The last official fever was Friday night. I’m hoping this means that the fungal medication is working.

I know I don’t say it enough, but…THANKS for all the love and support all of you have given to us over the years. We have been so blessed with a wonderful support system from doctors and nurses to friends and family. Thank you ALL!!!!!!!!

When you respond to the party…please make sure you tell me how many are coming. I know you will all be glad to hear that Woody Wolfe IS COMING to the party. Anthony was so excited to hear this.

High…NO FEVER, friends and family, new chemo

Low…limp, insurance a--holes

Friday, March 7, 2003 10:04 PM CST

Today's counts:

WBC...7.3
HGB...11.2
PLT...29
ANC...73
BLASTS...92%

Let’s recap for all of you that haven’t a clue what the heck is going on…

Thursday the 27th (?) of February Anthony started getting fevers. He seemed fine other than the fever. We kept him home, hydrated and gave him Tylenol.

Monday the fever was still persisting so we had him cultured at the KOP clinic. That evening he experienced severe back pain. We gave him some morphine and it worked right away.

Tuesday we received a call from CHOP saying the culture was growing a gram-positive bacterium with clusters. By 1:30 Brian had Anthony at the hospital. At 4:30 Anthony started to scream in pain. He was experiencing hip pain. From then he didn’t walk until Thursday late in the afternoon.

Wednesday he had an x-ray of his hip and pelvis. They came back clear. He was still producing positive cultures. His pain had moved from his hip to his knee, thigh and pelvis.

Thursday he finally had a CAT scan. It had been 7 days of a fever and I feared FUNGUS since Monday. Before dinnertime we had the results and he does have fungus in his lungs. He has 2 to 3 nodules at the base of each lung specs all over both lungs and 1 nodule in the middle of one of his lungs. He was started on a new anti-fungal med.

Friday Anthony was hard to arouse today. He finally woke up at 1:15 PM. I spoke with Dr Bunin this morning…I really do like her. Sometimes she upsets me when she speaks of DNR’s, but she usually makes me feel better. She can be a world of knowledge at times. Anthony had a reaction to his Vancomycin today…this after already being premedicated. They suggested running his meds at 1 ½ to 2 hours. I ran it tonight around 1+ hours…but not 2. Today Anthony was discharged from CHOP.

Anthony has not had any pain meds since 10:30PM Thursday evening. He said he isn’t in pain and he won’t take the medicine. He still walks with a limp.

The insurance company is giving me a hard time getting his new anti-fungal med. They don’t want to give it to him. They told me I wouldn’t get an answer until Monday afternoon as to whether or not he can have it. I feel like I’m always fighting someone for something. I just want a BREAK. Give me what I want and NOW…I sound like Anthony. So, I wonder where he learned it???

Anthony is on Vanco every 8 hours IV and a new anti fungal in addition to all of his other meds.

I sure do wish Kirsten, Chrissie and Dr Bunin lived next door so I could call and bother them to come and take a look at him whenever I feel like he isn’t doing well. By the way, his fever tonight was 102. I guess the meds aren’t working YET!

High…we are HOME…my own bed

Low…fungus, new meds, insurance companies, middle of the night meds

Friday, March 7, 2003 7:00 EST

This is Thursday's update...Caringbridge was down last night...

Anthony’s counts:

WBC…4.1
HGB…11.3
PLT…57
ANC…41
Blasts…93%

Let’s start with the bad news. Anthony has what the doctors think is FUNGUS. The CAT Scan shows 2 or 3 nodules at the base of each lung and in the middle of 1 lung and Specks all over both.

The good new… He doesn’t have a urinary tract infection the x-ray was clean. There is a medicine to help treat the fungus, which he’ll take orally at home.

The bad news… without any good cells the fungus medication probably doesn’t have a chance.

The good news… Anthony may have had this for a while and it doesn’t seem to be affecting his daily life. He will probably be able to continue on as usual.

The bad news… He still has a fever.

The good news… he is off of the morphine and taking Oxycodone instead. He has been walking since around 2:00 Thursday… with a limp, but he is doing it.



High… going home today.


Low… too much bad news.

Wednesday, March 5, 2003 11:04 PM CST

Today's counts:

WBC...2.8
HGB...12.0
PLT...87
ANC...280
BLASTS...50%

So far, Monday and Tuesday's cultures are positive. Wednesday's jury is still out. They cultured him at 4:30 in the am. He'll be cultured again tonight.

Anthony's fever continues. Today it has been 6 days of a fever. He did have periods of no fever...but not for long. The pain has NOT subsided yet. He started with back pain on Monday evening, hip pain Tuesday afternoon, and knee, pelvis & thigh pain today. All of his pain is located on the left side of his body.

Today they tested his urine for a UTI. He had an x-ray of his hip and pelvis. And tomorrow they will give him a CAT scan. I asked several times for this so they are probably just pacifying me...that's ok...it's getting done.

If you want to pray for something...PRAY FOR NO FUNGUS!!!

Before I forget..I want to thank Dena Sowa and Melissa Schauer for keeping Chris & Mike the last two nights. Thank you to my mom for keeping Nicholas at her house. I can't forget to thank Debbie and Ali for watching Hanna & Thomas for me.

Today Mom mom Mary and Nicholas came for a visit. Nicholas is a handful! Today he asked my mom for a cookie and she told him to get one off the table. He told her he wanted one from the container. She said, "What's the difference?" He in turn said, Yeah, What is the difference with you?" HE WON!

We also saw Erin and Bill Delahanty...Thanks for stopping by.

At 10:30 this evening, Anthony told me he loved me out of the clear blue. Then at 10:45 he told me he knows why he has pain...God gave it to him. I tried to explain to my ALMOST 5-year-old that God does NOT give us pain, but that we could pray to him to take it away.

More tomorrow and hopefully I'll have some results and answers for all of you.

High...He's still HAPPY

Low...fever, pain...take your pick

Wednesday, March 5, 2003 2:05 AM CST

Here we are at CHOP. I suppose it is a good thing we came in. The lowest his temp was yesterday or this morning (it's 2am) is 38.5 (101.3). He's experiencing some God awful pain in his hip. We have given him 5 doses of morphine but he still refuses to put weight on it. This makes for a sticking situation when he has to pee.

Tuesday's counts:

WBC...2.3 (on the rise quickly)
HGB...8.0 (this must have been wrong, but we transfused all the same)
PLT...144
ANC...184
BLASTS...43%

I'm hoping that the rise in White Blood Cells is from the infection. Yes, I finally agree he MUST have one. I'm actually thinking a bone infection with all the pain he is having. The blast count went up a little. I'm still happy with less than 50%.

We have our own room...thank you to whomever made that happen. Room number and phone number are at the bottom.

High...he still looks good.

Low...pain, infection, fever (right now it is 39.3...102.8)

Tuesday, March 4, 2003 9:42 AM CST

Yesterday, while we were at clinic, I asked the nurse to draw a culture since Anthony’s fever doesn’t want to go away. This morning I received a call from CHOP saying the culture came back positive for gram-positive bacteria. It took 21 hours…but they said we need to come in for 24 hours. THAT’S SUCKS!!!!!!!!!!

The nurse practitioner called and said he would get antibiotics in the clinic and be admitted for 24 hours then we could go home and do the IV antibiotic ourselves. It’s an inconvenience. Anthony is running around like a crazy person and there is no way that he has a life threatening bacterium in him. Now his fever is persistent. He has had it for 5 days. Brian and I discussed that it might be FUNGUS…the F word in our house. After he’s admitted I’ll request a CAT scan. I’d like to rule that out. Mental note…make sure to ask what the ECHO results are from yesterday.

Yesterday’s counts:

WBC…1.2
HGB…9.3
PLT…23
ANC…72
BLASTS…38%
Cell Count…50

Since Anthony’s fever continues he may need platelets by Thursday. Fevers tend to eat up the platelets. This will be a pain in the butt because he’ll be admitted today, go home tomorrow and if he needs platelets on Thursday I’ll have to bring him down to Philly again. They don’t transfuse blood products or administer chemo on Thursday’s in KOP.

Please pray the fever is from…………GOOD QUESTION…what would we want the fever to be from.

Let’s just pray for the fever to go away.

Thank you to all of you for almost 4 years of love, caring and support. We NEVER could have done it without you.

Anthony will be 5 in two months!!!!!!!!!! YEAH!!!!!!!!!!!

High…He looks GREAT!!!!!!!!

Low…HOSPITAL stay!!!!!!!!!!

Saturday, March 1, 2003 3:07 AM CST

Thursday, February 6, 2003 9:43 PM CST

Check out the bottom of the page for FRIDAY'S updated counts.

I am getting so bad at updating this page. I have heard from many of you and I make no promises for the future.

Wednesday's CBC:

WBC...3.1
HGB...9.6
PLT...33 (He'll get these on Friday)
ANC...I forget
BLASTS...52% (damn it)
Cell count...100

I hope his CBC is ok on Friday. I don't want him to have chemo until Monday. I'll speak to his doctor about that on Friday...I think.

Things have been great around here. Anthony is black and blue here, there and everywhere.

Last night I asked Nicholas what his name began with and he said B. I told him no, no, no...you spell your name like this...N...I and he said C...K! I said yes! Now what does your name start with and he said M! Goofball...I asked him to spell his name and he said...N...I...C...K! I told him how proud I was of him that he could spell his name and I asked one more time, Nick, what does your name start with and he replied...U! Where could he get it from? I wonder?

Both of Anthony's therapists were sick this week and he wasn't able to have therapy. He has this huge ball that he LOVES to jump on and we did PT on that this week. As for Speech therapy...he doesn't like when I correct him, he usually says,"what the F---, I said that". Now, how do you think I am going to send this good catholic boy to a catholic school next year. He'll be suspended on the 1st day of school. He could probably teach the class vocabulary. I could see it now...5 year olds running home to tell their parents they learned the A word, the S word, the D word and most importantly the F word. My phone would be ringing off the hook.

Enough story telling for today!

Anthony's counts for Friday:

WBC...6.8
HGB...9.7
PLT...6 (he got these today)
ANC...136
BLASTS...59%

I spoke with Anthony's doctor today and we are pretty sure that Anthony will get chemo on Monday and Tuesday.

High...Nick and Anthony played so nice today and I slept until 12:15.

Low...his platelets

Monday, February 3, 2003 9:12 PM CST

Today's cbc results:


WBC...1.1
HGB...10.0
PLT...90 something
ANC...there is a tiny one
BLASTS...34%
Cell Count...50


I'm still happy with Anthony's counts. I figure he'll need platelets by Friday and blood next Wednesday.

Thanks to Brian's friend, Brian, we purchased a new medicine for Anthony today. Brian's parents ran around town finding a drug store that carried it. I'm not going to give much detail because I can't keep track of who reads this page anymore. I don't want to be ridiculed for giving it to him, but if we find it helpful we'll inform all of our friends that are still going through all of this shit with their kids.

All that because I wanted to thank Brian for the info and thank mom for running around town.

Anthony is still so full of energy. I wish I could bottle some for me. Tonight he fell off of the chair in the kitchen and landed right smack on his face. Why don't people put their hands out to save their faces? We iced it for awhile and it looks better.

He hasn't gone back to school since there is so much sickness in our schools. One catholic school near us closed down for a day to be able to disinfect a little better and give the kids an extra day to get better.

Nicholas is back to school today after being sick last week. He missed it a lot. Anthony missed him when he woke up and saw Nick was gone. They have been playing like they are the best of friends lately. It's so nice to see.

High...Counts

Low...he keeps falling and getting black and blue marks

Wednesday, January 29, 2003 at 11:26 AM (CST)

Today’s counts:


WBC…0.7
HGB…11.3
PLT…82
BLASTS…47%
Cell Count…30
ANC…21


His counts continue to do well. He is doing great. NO PAIN! He is drinking even less than before, but I give IV hydration at night to compensate.

Anthony LOVES the movie…”Like Mike”. It’s a basketball movie with Lil Bow Wow in it, great music and lots of fun. I really like it too.

Anthony has NOT been to school lately. I think it’s time to call in an Occupational Therapist. Anthony does great with his controllers for Playstation, but he can’t seem to get the hang of using a pencil to write his name. Sacred Heart has started registration for Kindergarten and I have to register Anthony or he won’t be able to get a spot in Kindy. I was torn whether or not to sign him up. The doctors say one thing and then he just continues to amaze all of us each and EVERY day.

Must run and make something else for the monster (Anthony) to eat. All he does is EAT, EAT, EAT!

High…counts still low.

Low…I’m always in the kitchen and yet he doesn’t gain any weight!

Monday, January 27, 2003 at 12:24 PM (CST)

It’s been a hectic weekend running here and there.

Friday Anthony slept at his Mom Mom Mary and Pop Pop Phil’s house. He had a blast as usual and wants to know when he can go back again. Chris had basketball practice in the evening.

Saturday afternoon Brian and I had to buy a new DISHWASHER. After shopping we took Chris and Anthony out to eat at Friendly’s…yummy Ice Cream. After lunch my mom brought Michael and Anthony home so that Chris and Michael could go to their basketball practice at the YMCA. When mom dropped off the 2 boys she picked up Nicholas and took him home to sleep at her house. Saturday evening we all (except for Nick) went to see Chris play basketball for his school. They lost by 2 points.

Sunday I took Christopher and Michael to church…yes, I went to church! It was the kick-off to Catholic schools week. The children all wore their uniforms to church, had donuts after mass in the cafeteria, voted for the best decorated classroom door, and they each showed me their PowerPoint presentation. We came home and Brian had a list of errands for all of us to run…Lowe’s, Best But, Toys R US, his parents house, and yeah over to my mom’s house to pick up the missing piece to our family, NICHOLAS.

Sunday evening, or as I call it LAUNDRY SUNDAY, was full of cleaning, cleaning, and more cleaning. Brian refused to watch the SUPER BOWL. During the cleaning/messing around to piss off mommy time, Anthony fell and smacked his head against Michael’s wooden bed. It was a little red, until…

Monday morning the 2 older boys headed off to school, the kids I watch arrived, Nicholas went to preschool, Brian left for work, I put the babies to bed, and I headed back to bed for a short nap. By 10:15 Anthony was awake and we began to play a game that we call the DIZZY GAME. While we were playing he turned to his head and there was this big ugly purplish, blue lump… It was where he hit his head last night. I was about to call Brian when CHOP called and said his platelet count was 10.

We dressed Anthony and out the door he went for a platelet transfusion. His weight dropped down to 11.7.
His CBC today:

WBC…0.6
HGB…12.3
PLT…10
BLASTS…36
Cell Count…25

High…laundry is done!

Low…No REST for the weary

Thursday, January 23, 2003 at 09:06 PM (CST)

Friday's counts in red at bottom.

Anthony’s counts for Wednesday are:

WBC…16.6
HGB…12.2
PLT…9 (he got these yesterday)
BLASTS…92%
ANC…0

Anthony had chemo yesterday in the KOP clinic. He weighed in at 12.2kg and when we left he was 12.6kg. I was excited. So was he…he kept saying I have weight, I have weight!

Today Anthony started to complain about knee pain. He is in so much pain that he asked me to give him “the blue medicine”, Morphine. I gave it to him and now we wait and see. His temp is 37.95…that’s about 100.3. I hope he isn’t getting sick…infection sick.

Here it is several hours later…I had to stop earlier because he was crying in so much pain…and his fever is gone. Around 6PM his temp was 102.2, I gave him Tylenol and it continues to go up a little every half hour. Around 8:30 he asked to play Playstation. I said sure and within an hour his temp was NORMAL. He walked to the bathroom when he had to go. Earlier he wasn’t able to put any weight on his legs.

I took a few matters in my own hands and gave him Tylenol, Allopurinol & morphine 3 times. I did what I did for my own reasons.

It’s 10PM and all is well with Anthony. Thank you, God!

More tomorrow after we get home from clinic.

Anthony did NOT have to go to clinic today after all. His counts for FRIDAY are:

WBC...1.3 (YEAH!!!!!!)
HGB...12
PLT...60
ANC...0
BLASTS...76% (Yeah here, too...they dropped a bit)

High…feeling better

Low…It was a HARD day for Anthony

Tuesday, January 21, 2003 at 06:03 AM (CST)

Anthony's weight today when we arrived was a very disappointing 11.8. Take into consideration that I woke him up and put him in the car. He ate and drank NOTHING. Before we left clinic we put him on the scale again and he was 12.4 . Now, he did get a lot of fluid during the day from his blood transfusion and his chemo...but he ate enough for me, him and the nurses. He was NONE STOP.

Today's counts:

WBC...50
HGB...8.7
PLT...26
BLASTS...92% (No, Kathy I'm not mad at you)
Anthony is getting chemo today & tomorrow.

Anthony will head to clinic today for his packed red cell transfusion. He may or may not get chemo today. We won’t know until we get his counts back this morning.

Last night I picked up Anthony and as usual I squeezed his butt cheeks. But there was something different this time so I did it again and again and again. His butt has fat on it. I couldn’t believe that I wasn’t grabbing all bones…it was actually squishy. I ran over to Brian and told him to have a squeeze. Then I gave him a HUGE hug and told him how proud we are that he hasn’t stopped eating for days. When I did I realized I wasn’t hugging all the bones in his back…there is real meat on his rib cage…all the way around. I am expecting 12.4kg today for his weight. I’ll be very disappointed if he is any less.

If he is 12.4kg today…it will be a record for him. The most he has EVER weighed was 12.3kg. That was before relapse. I promise to stop all my bitching about being in the kitchen 24/7 if his weight is 12.4kg or more.

Yesterday morning I made him French toast. Maybe 15 minutes later he wanted a ham and mayo sandwich. About 30 minutes after that he wanted a PB & J sandwich. That was all before 11:00 and he got up at 9:30. When I came home from the mandatory school meeting last night he was eating chocolate chips straight from the bag.

Must run for now…I’ll update later.


High…Feeling the fat

Low…none for now

Friday, January 17, 2003 at 07:46 PM (CST)

Tom Roy…this one is for you!!!!!!!!!

Today’s counts:

WBC…6.0 (up from 2.2 on Wed)
HGB…9.1 (type & cross will be done on Monday so he can get these on Tues)
PLT…18 (Brian took Anthony to get these today)
BLASTS…87% (I HATE THESE!)


Yes, the word hate is a nasty word! I really am a bit annoyed at the blasts.

Not to mention the pain in my neck I have had for 2 days. I have been walking around with my neck to the side looking like a goofball. Let’s talk about the wall with marker all over it…most of it came off, but NOT all of it. The boys both came home with homework for the weekend and they were supposed to go to their mom-mom’s house for Sat & possibly Sun night. I am so sleep deprived that I want to scream, but it would only hurt my neck some more.

Enough bitching…

Anthony is doing great. His weight went back up to 12kg (26.4lbs). Yesterday I spent the day trying to get him to do anything but play Playstation. It worked for a while. He probably only played for a total of 2 or 3 hours. He usually plays for 12 hours a day. A big improvement as you can see.

I spoke with Anthony’s doctor for a moment today…and I do mean a moment. The phone timed out at less than 1 minute. I called to ask if there was a possibility that he could get chemo on Tuesday. She said if his WBC is over 10 he could get it. I don’t think it will be a problem. My guess is that the WBC will be 25. I hope that his platelets hold out until Tuesday because clinic is closed on Monday.

Let’s end on the note………
GO E A G L E S !!!!!!!!!!!!!!!!!!!!!!!!!!!!

High…weight up, feeling good

Low…too much to bitch about

Monday, January 13, 2003 at 11:59 AM (CST)

Wednesday's counts;

WBC...2.2
HGB...9.8
PLT...62 (BIG drop)
ANC...0
BLASTS...90% (they just won't go away)


Check out the new pictures - - - Anthony gets his hair cut - - - The bedroom wall!


Anthony’s counts from Monday:

WBC…2.2
HGB…10.6
PLT…120 (the boost was a good one on Friday)
ANC…0
BLASTS…90% (these just won’t leave him alone)

Anthony went to school today. He said he wanted to go, but he didn’t want to play, do the craft or eat the snack. He also wanted me to tell his teacher all of that. So, I walked in and told them that he is there to observe the class and decide whether or not to continue with his education. He did well and he stayed the whole time…9:00-11:30. He did have snack at school.

I have to say…my little boy is growing up soooo fast. He is 44 years old or at least that’s what he keeps telling us. It’s nice to be 10 years younger than my child. Maybe he can teach me a thing or two.

E A G L E S!!!!!!!!!!!!!!!!!!!!!!!

They won!!!!!!!!!!!!

Let’s talk about the Eagles for a minute. I missed the first half of the game because I was at Chris’ basketball game. Brian, however, was at home with Anthony and Nicholas. When I walked in the door Brian told me to go see Anthony’s bedroom. I walked up and wanted to scream, holler, rant and rave. Nicholas colored the walls with markers…red, green, orange, blue and purple. I did take a picture. Hopefully, Brian will get it up on the web site soon. Here’s the question…who do I beat? Brian for not watching them well enough…but it was an important game and all. Maybe Anthony because if he didn’t play Playstation 16 hours a day he could have looked behind him and seen what mess Nick was making. Maybe I should beat Chris for leaving the markers out after finishing his project for school. The answer is probably NICK…the culprit.

NEEDLESS TO SAY I WILL BE THE ONE CLEANING IT UP!!!!!!!!!

Brian and I enjoyed our dinner Friday evening and don’t fall off of your seat…we went to the movies after dinner to see Two Weeks Notice. A whole night out on the town for us. Saturday was a crazy day and Sunday was a nice relaxing day…for the most part. It is hard to relax with 6 people in the house.

I spoke with Dr Bunin today about more chemo or not and she said NOT! We’ll see what the end of the week is like and maybe I’ll talk to her again.

High…PLATELETS

Low…marker to be cleaned up

Friday, January 10, 2003 at 04:36 PM (CST)

Anthony went to clinic today to get platelets and chemo (Ara-C & Mitoxantrone). Results of his CBC:

WBC…12.7
HGB…10.5
PLT…49
ANC…0
BLASTS…94%


Anthony did NOT have a reaction today from the platelets. Thank God…because Trudi would have removed herself from being Anthony’s nurse from now on. She thinks that she jinxes him. Anthony didn’t mind being at clinic at all. He was VERY happy that Trudi played him in the fight game (TEKKEN 3) on Playstation. He whipped her butt! Sorry Trudi, I had to tell everyone. But don’t be embarrassed…he beats everyone, and we truly try to beat him.

The weekend is crazy:

Tonight Chris has Basketball practice and Brian and I are going out to dinner again…2 weeks in a row. This is a definite record for us. We usually go out 2 times a year. Tomorrow the boys have dental appointments, a 3PM basketball game at the Y, Michael is sleeping at a friends house, Chris has a sleepover party at 7PM…only to be picked back up at 8PM for his 2nd basketball game with school at 8:30...then back to the party at 9:30. I wouldn’t be surprised if the evening game is cancelled since the EAGLES will be playing.

E A G L E S…………………..EAGLES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

GO Eagles, Go Eagles, Go Eagles!!!!!!!!!!!!!!!!!!

I guess you figured we are from the Philly area.

Sunday…a day of rest…just like God intended!!!!!!!!!!!!

High…No reaction, great spirits, going out AGAIN!

Low…NONE

Wednesday, January 08, 2003 at 10:23 AM (CST)

MINI UPDATE:

I did take Anthony's temp when he woke up yesterday morning (almost afternoon) and it was elevated but still low enough to stay home. By mid afternoon he was back to normal...i actually was able to use the word normal when it came to Anthony. That was nice!

Wednesday’s counts:

WBC…4.8
HGB…10.0
PLT…100
ANC…48
BLASTS…88% (go away already)

As you can see, Anthony’s counts are in an upward swing. I spoke with his doctor this morning and she said we could go ahead and give him more chemo on Friday and possibly again next week (as we did 2 doses last time also). I hope and pray that this works well again. Friday will be 3 ½ weeks since his last round of chemo. Saturday will mark 9 months since he relapsed for the 2nd time.

Anthony wants to celebrate his birthday. He wants to be 5 years old. I told him that we would love for that to happen also. He wants it to happen now. I explained that his birthday is once a year. He said he knows that it is May 5th but he wants to be 5 NOW! I stopped arguing with him because I’d like to be 16 all over again…ok maybe 21.

Anthony continues to do VERY well. He is sleeping now…11:20 am. Must be nice. I think he is getting his sleep and mine! Nicholas has been crawling into my bed at night and he reaches over every 15 minutes or so to make sure I am still there. This wakes me EVERY time because I am such a light sleeper. You would think being so tired, I wouldn’t hear or feel a thing when I sleep…NOPE!

11:22…Sleeping beauty arises!!!!!!!!!!! He feels warm…gotta go take his temp…more later!!!!!!!!!!


High…Feeling GOOD!!!!!!!!!!!!


LOW…Sleep deprivation…feeling warm

Tuesday, January 07, 2003 at 07:15 PM (CST)

I am getting so bad at updating…

Monday’s counts:

WBC…2.6 (almost double of Friday’s)
HGB…10.5
PLT…41
ANC…52
BLASTS…72%
Cell Count…100

Anthony’s white blood count is still low and he shouldn’t need chemo before Friday or even Monday. That’s great because it has been 3 weeks since his last dose. He really is such a fighter. Maybe he’ll prove all the docs wrong and pull through this when a new drug comes out.

Today (Tuesday) I took Anthony down to get platelets. Once again he reacted to them. This is three times in a couple of months. The 1st and 2nd time he broke out in a rash all over his body. This was with Tylenol and Benadryl in him. This time he had a fever. All this after we changed his pre-meds to Atarax instead of the Benadryl. He was 36.6 (97.9) before he started and he was 38.0 (100.4) when he finished. We hung out for a little while longer and it came down to 37.7 (99.9) on it’s own. Trudi, his nurse at KOP, thinks it is her fought because it only happens when she does his platelets. Trust me when I say…IT’S US…THE MAKOID’S…WE HAVE BEEN JINXED FOR A WHILE NOW.

Anthony is doing great. We actually got him IN the bathtub last night. I have been sponge bathing him for 2 months now. I told him it was time to get back in the habit of bathing in the bathroom, in a tub. He gets all freaked out about his lumens getting wet and then he gets a fever and he has to go in the hospital. Brian and I promised him that we would keep his lumens dry. Guess what??? They got wet! I guess he is going to give me a hard time getting in the tub again.

Nicholas went to school yesterday. He was so excited to go and I was so excited to say bye…have fun…see you in 3 hours. I think the house was actually peaceful for those 3 hours. Anthony and I enjoyed playing together…PLAYSTATION…what else?

I have been fighting with a MIGRAINE headache for a couple of days. Let me just say…IT’S WINNING!!!!!!!!! I went to bed at 8:30 last night and fell asleep at 2:30 in the morning, only to wake back up at 6am. Tonight I napped from 6 to 8PM. Now I probably won’t be able to fall asleep.

High…Looking, feeling and finally smelling good!

Low…Today’s reaction!

Sunday, January 05, 2003 at 09:25 PM (CST)

I know it has taken me a while to update, but…I guess there really is no GOOD excuse.

Friday Anthony went to KOP’s clinic for platelets and a CBC.

Results of his CBC:

WBC…1.4
HGB…11.2
PLT…16 (that’s why he got them)
ANC…28
BLASTS…56 (a better number than Wednesday’s)
Cell Count…50

The older boys went back to school on Thursday and it will take a week or so to get back in the routine of things. Chris and Mike are playing basketball at the YMCA and Chris is also on a team for CYO. I went to their game at the YMCA and they did GREAT! Chris was so aggressive and then I went to his CYO game an hour later and he just seemed to back down. I don’t know if he was really tired from playing the earlier game or if the boys from school really do intimidate him. We’ll see next Saturday.

Nicholas goes back to preschool tomorrow…THANK YOU, GOD! To spend a day with him is like spending an eternity…he talks and talks and talks. I know he gets it from me…but he’s only 3.

Anthony has been sharing EVERYTHING with Nicholas. He has been hugging and kissing Christopher and he even will tell me he loves me again. For the longest time it was only DADDY! It still is for most of the time…the other times it’s me.

We still have to give Anthony his IV antibiotics for a little longer. He doesn’t seem to be bothered by it. He just goes with the flow. He is looking and feeling great! Tomorrow will be 3 weeks since he has had any chemo!!!!!!!!!!!!!!! I’ll update with the results of his CBC when I get them tomorrow.

Wednesday, January 1, 2003 at 06:35 PM (CST)