History

Sunday, January 29, 2006 1:45 PM CST

We did it! We ran (and finished!) our marathon.

I posted a few pictures from the marathon. I carried a camera with me during the run so I was taking pictures along the way!

It was an awesome experience! I am glad we chose Disney for our first marathon. I don’t know what other marathons are like but Disney was just plain fun - running through all 4 of the Disney parks and seeing all the Disney characters along the way. Many of the runners had on something Disney – Mickey ears, Tinkerbell wings, etc. I felt like I had a smile on my face the whole way through.

I tried to send a postcard from Florida to all our contributors but I know I missed a few that I didn’t have addresses for. I want to thank you all for your contribution to the Leukemia & Lymphoma Society (LLS). The money raised for the LLS just from the Disney marathon alone was $6.6 million dollars from over 2,200 Team-in-Training participants. The Mid-America chapter, which Bill & I are in, had 38 runners at Disney and raised over $185,000. Bill and I raised a total $8,446. That money goes toward research which is so important in finding better treatments and ultimately a cure for blood-related cancers and to help patients and their families. Team-In-Training trains for lots of different events throughout the year. If anyone is interested or knows of someone that might be interested see the website link below for more information about Team-in-Training. It is a great organization and raises money for such a worthwhile cause.

Just a couple of fun facts about the Disney marathon:

There were a total of 10,131 runners in the full marathon (26.2 miles) and 11,761 runners in the half marathon (13.1 miles). About 3,000 people did what was called the “Goofy Challenge”. They ran the ½ marathon on Saturday and the full marathon on Sunday.

The full marathon had 5,024 female runners and 5,107 male runners. First place male finished in 2:19 hours and first place female finished in 2:51 hours. (That’s fast!) Oldest female runner was age 77 and finished in 6:36 hours. Oldest male runner was age 78 and finished in 6:21 hours. I was so amazed at the diversity in age of all the runners.

Bill’s official time was 4:33 hours (average pace of 10:25 minutes per mile). He came in 3,209 out of the 10,131 total runners. He came in 2,252 out of the 5,107 total male runners. He came in 190 out of 509 in his division (age 50-54).

My official time was 5:57 hours (average pace of 13:37 minutes per mile). I came in 8,044 out of the 10,131 total runners. I came in 3,569 out of the 5,024 total female runners. I came in 346 out of 587 in my division (age 45-49). The accountant in me is coming out with all these numbers! It was funny because when we trained I was always one of the last runners but at Disney there were over 2,000 people that came in behind me!

What next? That is a good question. I think I had a suspension but didn’t realize what a let down it would be after the marathon. The marathon was a purpose and a goal and it kept us focused. Bill is all ready to run his next marathon but I told him we have a few things to take care of around here before he starts the time-consuming process of training for another marathon. Truthfully I haven’t run any since the marathon. Bill has been better about his running. He did get up this Saturday to run 8 miles with the TNT training group (there is always a group in training for one marathon or another). He also got up this morning to run the GroundHog Run. He ran 6 miles through the underground storage caves in Kansas City – entry fees were a fundraiser for the Easter Seals. They are all for good causes!

Hannah Update – Hannah finally got to home from the hospital a few weeks ago. She has been in and out of the hospital a couple of times since going home and is in right now. I know they are waiting for the day they get to go home and stay there for good!!!! They are so close and she is doing really well. It seems like the main issue right now is getting her off of some pain meds that she has been on for so long. It is a long process to wean her off them completely and a lot of fine tuning the right amounts to help with the nausea that comes along with getting off of it them. She is amazing though and so is her family. I thought of both Zach and Hannah many times along my run and their strength and courage and determination! They both are incredible!

I am sorry I can’t make these any shorter! I also know I can’t continue to write in this but I still want to. It is a good release for me even if no one reads it.

We made it through the holidays ok – I think the marathon helped to keep us focused on something else. I need to do more but am still a bit of a hermit preferring to stay home most nights. I am working on it. I still have a lot to do in our house. Some things are still “frozen” in time since the day we came home from the hospital. I just never seem to have the energy or motivation to go through them.

I’d better close but want to say thank you one more time to everyone who contributed to our fundraising efforts!!!

Saturday, December 17, 2005 9:39 AM CST

I posted pictures from several past Christmas Cards - We used to do a photo of the family but at some point just started putting a picture of the kids.

I tend to write my journal entries when I am in the mood (that is why they are so sporadic). I can’t say I am in the mood right now but I feel I need to write something on this first anniversary. I will say I have found updating the website to be healing in itself. I know I can't continue it forever but am glad I have this outlet for know.

It was a year ago yesterday that Zach died. It is hard to believe a whole year has gone by. I barely remember the first six months after his death. I know I was functioning but I must have been on auto-pilot. It feels like when you are talking on your cell phone in the car and you have gotten from point A to point B but don’t remember getting there and wonder if you even stopped at the stop signs or paid attention to the traffic lights.

I took the day off from work on Friday. I spent a quiet morning in reflection and spent some time reading in my journal that I started to keep after Zach died. Many of the entries I don’t even remember writing. One talked about how joyless my life felt as though Zach were the color in our lives and everything was black and white right now. I didn’t know how to switch the color back on. I think the color is slowing coming back. Many of my journal entries are about God and my faith which I still struggle with. I went out to lunch with my parents and my sister and had a nice time. Nathan, Bill and I went to a movie in the evening. It turned out to be a peaceful day without too many tears being shed.

There were many dear friends who remembered us with a card, or a phone-call, or an e-mail, or stopped by with flowers, or left a message on the website or thought of us in someway and included us in their prayers. It has made a huge difference to know that people still remember and care. Thank you for your care and concern, not only during this last week but throughout the last year.

I still miss Zach so terribly. I wish with every fiber of my being that I could make him come back but I know that I can’t. I know he will always be with me. He was such a terrific kid (a little bit shy, funny, creative, mischievous, thoughtful, sensitive, a peacemaker, always wanting to please people). I always like the fact that he was still a kid at eleven. Some kids at that age were trying to grow-up so fast. I think that Zach would have always been a kid at heart. He loved to laugh and have fun. I feel so blessed to have had him with me for eleven years and thank God everyday for him.

I decided to make a list of the things Zach liked (and didn’t like) – the list is in no particular order:

Likes:

• The Claw Machine – You know those machines you see at restaurants and bowling alleys with all the stuffed animals and the claw. Zach was a sucker for those! Sometimes he would get lucky and actually win something. We were at the bowling alley with Ryan in between one of Zach’s rounds of chemo and they got lucky 4 times – it was a record!
• Miniature golf – Zach couldn’t get enough of!
• Going out to the movies
• Spending time with his friends – having friends spend the night
• TV -watching Disney channel, Nickelodeon, cartoons, America’s Funniest Home Videos, Whose Line Is It, Wife Swap, Desperate Housewives
• Drawing-This was probably his first love-he loved to draw funny characters, crazy contraptions, making cards for people
• Being read to-I used to read out loud to the kids even as they got older. I read all the Harry Potter novels out loud to the kids. Only problem was they didn’t develop good reading habits of their own.
• Setting off fireworks! – This always scared me to death!
• Coffee Ice Cream – This is my favorite and it became Zach’s too
• Playing in the creek (and sometimes swimming in it!)
• Looking for golf balls in the creek – They would find them and then try and sell them to the golfers – sometimes it worked!
• The movie “Pat”
• Nuggle with Mama (Jenny the care assistant will get this one!)
• Macaroni and Cheese – Zach was a picky eater!
• Smiley faces-Since Zach was little he liked smiley faces and it sort of became his trademark.
• Camping / Campfires – He loved camping with the scouts and our annual Bennett Springs canoe/camping trip with our friends
• School-Zach actually liked school-it was where all his friends were. He wanted to do well in school. He loved art, played the baritone, and liked singing in the choir.
• Stuffed animals – Even at age eleven Zach still loved stuffed animals.
• Loved his back scratched-He would always tell me harder!
• Playing in the snow- I was driving to work the day after it snowed last week. My first thought was how much Zach liked the snow and that he would be in heaven with all the snow we had. Of course then I thought he was already in heaven and it made me wonder what heaven is really like. We must be completely satisfied in heaven and not be wanting for anything.
• Skiing-We had gone on the Boy Scout ski trip for the last two years as a family and Zach loved it.
• Steak with A1 Sauce- Zach had this craving for steak and A1 Sauce after he went home from his first round of chemo. He ate steak for breakfast, lunch and dinner some days.
• The Tickle game-I used to play this game with the kids where I would tickle their back really softly and they tried their hardest not to move. Not easy to do since I would always find the right spot.
• Action figures-He still liked action figures even at his age.

And more……

Dislikes:

• The dark- Zach never got over the fear of the dark
• Scary movies (even scary music-you know the music that leads up to something scaring happening)-Lots of Zach’s friend got into some of the scary movies. Zach wouldn’t even want to be in the same room if there was a scary movie playing (didn’t want to be able to hear the music).
• Being tickled under the chin-I never saw anyone so ticklish in a certain spot. He would start laughing if you even pretended like you were going to tickle him under the chin.
• The screech of a knife running across a plate (like the fingernails on a chalkboard) –You wouldn’t think this would be a huge issue but Zach’s ears were so sensitive to it. We had many arguments over dinner whether Nathan was doing it on purpose which he always claimed he wasn’t and Zach would insist he was. Zach would wrench in pain every time one of us would accidentally make this noise.
• Nathan cracking his neck-Nathan has this habit of turning his head to each side and cracking his neck. I didn’t particularly like the noise but to Zach it was like the knife on the plate. As you can imagine as brothers like to annoy each other, Nathan would delight in making Zach mad.
• If I would laugh at him when something happened – I still have this slapstick mentality & tend to laugh (assuming they are seriously hurt) if some falls down, trips, etc. Zach used to get really mad at me but I couldn’t help myself. Zach could be so serious at times and his feeling could get hurt easily. I guess to him it just thought he was being laughed at him.
• Anything green in his food!-I love green peppers and put them in most things I make. Zach also said he didn’t like onions but if I chopped them up small enough and he couldn’t see them he was fine. They were easier to disguise.
• When he thought his friends were ignoring him-Most parents find this true when there is an odd number of kids that one will feel left out. I don’t know how many times Zach would have more than one friend over and then feel left out. Sometimes even with one friend if Nathan started to monopolize his friend.
• Shots-What kid likes shots! The first thing Zach would ask the doctors is if they were going to give him a shot. It didn’t matter what else they were going to do as long as it didn’t involve a shot.

I am sure I could go on but better stop.

Hannah update – Hannah is incredible! Here stem cell transplant has not been without a lot of nausea and pain, but everything is working like it should be and she is recovering at a quicker pace than I think the doctors expected. Her counts are on the rise. There is still a lot that has to happen before she gets to go home but there have been no set backs or infections. Pray for continued strength and comfort for Hannah and her family. Pray also that Hannah’s counts will continue to come back quickly on their own once the GCSF shots are discontinued and that Hannah will remain infection free. Please see the link below to Hannah’s website which is updated daily! Love you Hannah!

For those of you who don’t know – Bill and I have are training for the Orlando Disney Marathon on January 8, 2006. We have joined the Leukemia & Lymphoma Society’s Team in Training and have committed to raising at least $7,000. We are running in memory of Zach and in honor of Hannah Miller. See links below if you would like to make a donation or check on our progress.

Training update – Well I am writing this on Saturday morning instead of running my 22 miles which is what Bill is doing right now. I am determined to get my run in sometime this weekend though. This is our last long run and then we taper off until the race.

Fundraising Update – I am not even sure where we are for our fundraising right now. I have several checks that I haven’t entered in yet. I know we are over our new $7,500 goal and may be closer to $8,000 for raising funds for the Leukemia & Lymphoma Society (LLS). I can not believe how generous everyone has been. Thanks to everyone who has donated. Please know it is going to a very important cause. I know much of the research will also benefit other cancers.

Sunday, November 27, 2005 8:28 PM CST

These journal updates have never been easy…..I am trying to remain upbeat as we approach the first anniversary of Zach’s death. It is hard since the holidays are such a special time that we would normally look forward to. One of the website messages said to think about what I have learned from Zach. I do try and see the world from Zach’s eyes sometimes as a way to feel him with me. It especially makes me smile if it is something funny and I imagine Zach laughing over it.

Hannah update - Pray, Pray, Pray – Hannah Miller undergoes her stem cell transplant on Tuesday, November 30, 2005. She has been on high dose chemo since last week to destroy any lingering cancer cells. They will then transplant her own stem cells that were harvested previously. Because the transplant involves her own stem cells there is no real danger of rejection, but Hannah will be susceptible to infections while her counts are down so pray for no infections and for the stem cells to start producing normal cells as soon as possible so her counts come back quickly. Pray for strength and comfort for Hannah and her family during this most difficult and stressful waiting period. Please see the link below to Hannah’s website which is updated daily! Love you Hannah!

After reading some of Ryan’s recent messages on the website, I thought I would dedicate this journal entry to him. I posted some pictures of Zach and Ryan over the years. Ryan was Zach’s best friend all through elementary school, starting in kindergarten. Zach had some really good friends and I hate to single out one, but Ryan remained one of Zach’s best friends from the start of school until the very end. It was Ryan that Zach invited to go to the movies “The Incredibles” just a few short weeks before he died. Zach actually had a hard time deciding who to invite and he could have invited as many friends as he wanted. He worried about whose feelings he would hurt by inviting one and not the other, but in the end he decided he only wanted one friend and he chose Ryan. I know it was actually a hard day for Ryan and at times awkward, but I couldn’t think of a better friend to sit by Zach’s side as they watched the movie. Ryan, thanks for being such a good friend to Zach. I love you buddy!

Some of my memories of Zach and Ryan include: Countless nights over the years where Ryan would spend the night and the boys were always bound and determined they were going to stay up all night long! Some nights they just about made it too! Some fun times at a few Royal’s games. Memories of having Ryan over for dinner and sitting around the table listening to Nathan, Zach and Ryan tell different stories about Katherine Carpenter – it never failed that something would strike them really funny and they would get to laughing where they couldn’t stop. It’s always music to a mother’s ear to hear their kids laugh! They went through this phase where they liked to rent the movie “Pat” – in case you don’t remember (or know) – Pat was a character from Saturday Night Live who you could never tell if “it” was a man or woman – that was the whole premise. Well, they actually made a full length movie with the character “Pat” and the boys thought it was so funny! It was an old movie so I don’t even know how they discovered it. It wasn’t really very appropriate for them but they insisted on renting it on several occasions. One thing I remember about Ryan when I first met him is he used to wear this “Hot Wheels” baseball cap – he wore it for a couple of years and it got so worn out and frayed but he loved that hat. I always worried he would lose the hat while over at our house. I can’t believe I don’t have a picture of him in that hat – I wish I did! I could go on but I’ll just have to have Ryan over and we can reminisce……

Here is an excerpt from a writing assignment Zach had to do in the fifth grade entitled “People I Admire”. Four people made it on the list - Mom and Dad, Mr. Coleman (Zach’s fourth grade teacher that spoke at Zach’s funeral), and Ryan. This is what Zach wrote about Ryan - “One of my friends that I admire most is Ryan Knight. He is also a fifth grader at Katherine Carpenter and has been my friend since kindergarten. He is a good friend and has always stuck up for me. He is always cheerful and nice. Even though we have different interests now that we are a little older we are still the best friends we can be.”

Ryan spoke at Zach’s funeral. It was not an easy thing to ask Zach’s friends to get up and speak but they all did a wonderful job which I think is both a credit to them and to Zach that he had such great friends. Zach loved to laugh and loved being around his friends.

There was a lovely “poem” that was read at Zach’s funeral. It came from Ryan’s mother and his sister and Ryan. I thought in honor of Zach and Ryan’s friendship, I would close this journal entry with the letter….

A Forever Friend –

Sometime in life, you’ll find a special friend,
Someone who changes your life just by being a part of it.
Someone who makes you laugh until you can’t stop,
Someone who makes you believe that there really is good in the world.
Someone who convinces you that there really is an unlocked door just waiting for you to open it.
This is Forever Friendship.
When you’re down, and the world seems dark and empty, your forever friend lifts you up in spirit and makes that dark and empty world suddenly seem bright and full.
Your forever friend gets you through the hard times, the sad times, and the confused times.
If you turn and walk away, your forever friend follows.
If you lose your way, your forever friend guides you and cheers you on.
Your forever friend holds your hand and tells you that everything is going to be okay.
And if you find such a friend, you feel happy and complete, because you need not worry.
You have a forever friend for life, and forever has no end.

Ryan – Thanks again for being such a good friend to Zach – Love you!

For those of you who don’t know – Bill and I have are training for the Orlando Disney Marathon on January 8, 2006. We have joined the Leukemia & Lymphoma Society’s Team in Training and have committed to raising at least $7,000. We are running in memory of Zach and in honor of Hannah Miller. See links below if you would like to make a donation or check on our progress.

Training update – This entry is way to long but here is a brief update. We ran our 20 miles this last Saturday – good way to run off all that Thanksgiving turkey! I was absolutely dreading it but managed to get up at 5:30 on Saturday morning to run at 6:00 am. It was a beautiful feeling when I was done! I am sore but really not too bad. Bill is still plagued with leg injuries – he had to quit at 10 miles when he pulled a muscle running up a hill. The coach told him to take it easy and not run for the week, but to concentrate on cross training. Bill ran a ½ marathon (13 miles) in the Overland Park Gobbler’s Grind the weekend before.

Fundraising Update - We are over our $7,000 goal for raising funds for the Leukemia & Lymphoma Society (LLS). Thanks to everyone who has donated. Every donation counts no matter the amount. Bill wants to raise the goal to still encourage donations.

Thursday, November 3, 2005 8:44 AM CST

OK – So I guess my updates will be more like every two weeks!

Thanks for the messages Megan and Jenna. I love to hear stories of Zach that I haven’t heard before – they are like undiscovered treasures. My memories of Zach are finite now that new memories are not being made so it is like a new memory to cherish.

For those of you who don’t know – Bill and I have are training for the Orlando Disney Marathon on January 8, 2006. We have joined the Leukemia & Lymphoma Society’s Team in Training and have committed to raising at least $7,000. We are running in memory of Zach and in honor of Hannah Miller. See links below if you would like to make a donation or check on our progress.

FRIDAY, NOVEMBER 4, 2005 - Texas Hold’em Tournament - Our team in training group is having a Texas Hold’em Tournament to help raise funds for our group. It will be on Friday, November 4, 2005, 7:30 pm at Side Pockets, 1229 E. Santa Fe, Olathe (just west of I-35 on Santa Fe). There is a $20 donation if you buy a ticket in advance, or $25 donation at the door. Top five winners will receive a prize. We have tickets to sell if anyone is interested. It should be a lot of fun. There will also be a silent auction. You can always just come out for some beer, shoot some pool and throw some darts!

I had the most wonderful dream with Zach a few weeks ago. As much as I think about Zach throughout the day I very rarely dream about him. Even the few dreams I have had were ordinary dreams where nothing special is going on. This dream I felt like Zach was truly present in the dream. I spoke to him, he told me he loved me, I held him. I could feel a warmth spread throughout my entire body as I held him. I woke up smiling.

Last week was the one year anniversary since T.J. White died. T.J. passed away from leukemia on October 28, 2004. He was a friend of Zach's who we met last year at CMH. He was a wonderful kid and a big sports fan. It was a time of reflection for us as we approach December 16. My heart goes out to Mike and Michelle and Sarah.

I put a few new pictures out there. They are pictures from around this time last year. I probably have not expressed enough how wonderful the staff at Children’s Mercy Hospital were to us. They become such an important part of your life when you “live” at the hospital for long stretches of time. They provide a huge amount of support and laughter and friendship! I put a few pictures of Zach goofing around with some of the nurses and care assistants. I also put a picture of Zach at the Renaissance Festival from last September. He wanted to dress up and he is eating a big turkey drumstick.

Hannah Update - Hannah is at home for a while! I know what a glorious feeling that is after being in the hospital for as long as they were. Home presents a whole other set of worries and a very different routine from the hospital but we all know “there is no place like home!” Hannah goes back to the hospital on November 15 to start her high dose chemo and she will get her stem cell transplant on November 22. Some people call the transplant date their second birthday. Pray for Hannah to stay healthy, for her and her family to enjoy their time at home together, and most of all for the transplant to be successful and for no infections.

Training update – Uggggghhhhhh! We run 18 miles this Saturday! Not sure if I can get up at 5:30 am on a Saturday to run 18 miles. It took me 4 hours to run 16 miles two Saturday’s ago. I ended up walking a lot at the end because my legs hurt so bad. I originally wanted to finish the marathon in 6 hours but now I am thinking more like 6 ½ hours. Bill has been fighting some knee/calf injuries but manages to run through the pain. He has been hobbling around quite a bit these last two weeks. We still have to do a 20 mile and a 22 mile run for our training before the marathon in January.

Fundraising Update - We are at 95% of our $7,000 goal for raising funds for the Leukemia & Lymphoma Society (LLS). Thanks to everyone who has donated. Every donation counts no matter the amount. We will still continue to try and raise money once we hit our goal.

Wednesday, October 19, 2005 7:57 AM CDT

This is harder to update than I thought it would be. Right now I am feeling numb inside and don’t seem to have much to say.

I got a message from Caringbridge asking if they could archive our past guest book messages. They are still available to read through a link, but do not come up automatically.

For those of you who don’t know – Bill and I have are training for the Orlando Disney Marathon on January 8, 2006. We have joined the Leukemia & Lymphoma Society’s Team in Training and have committed to raising at least $7,000. We are running in memory of Zach and in honor of Hannah Miller. See links below if you would like to make a donation or check on our progress.

I posted a few new pictures of Zach from earlier Halloweens. Halloween was definitely one of Zach’s favorite times. I love Halloween too so maybe he got it from me.
This time last year we had checked in for round 4 the first part of October and were just waiting for count recovery. Zach was desperate for his counts to go so he could be home for Halloween. Round 4 was a harder round of chemo since his leukemia had come back. They had started the search for a bone marrow donor. We had all kinds of decorations in the room for Halloween including the famous crawling hand – very creepy – but Zach had a lot of fun with it. The pictures I posted are Zach at age 4, 5 & 6 (I think!). The ones I love are where we darkened all his features – because he was so blond he looked so totally different. Zach loved to dress up even when it wasn’t Halloween. He was such a great kid always figuring out a way to have fun!

Hannah Update - Hannah is done with the first harvesting of her stem cells which they did last week. All went well although she may have to have it done again to make sure they have enough stem cells for the transplant. I visited Hannah last week – her spirits were up and she looks great! Lots of Halloween decorations! She has been at Children’s Mercy for two months now but I think they may be going home today for a short break from the hospital. See the link below to visit her website and send her a message. She is incredible and so is her family! The Overland Park Fraternal Order of Police (FOP) is having a fund raiser for Hannah this weekend:

Sat. October 22
F.O.P. Lodge
7325 W. 162 Terrace
Starting at 4:00 PM
Live music/ food/ raffle items

Training update – Two Saturdays ago we did our 14 mile run, last Saturday was 8 miles (seemed like a piece of cake after the week before). This Saturday we run 16 miles! I wish I could say I feel invigorated with all this exercise but exhaustion is more like it. Bill is much more diligent about getting up and running the 3 miles (Tues & Thurs) during the week whereas I always find an excuse to put it off.

Fundraising Update - We are at about 75% of our $7,000 goal for raising funds for the Leukemia & Lymphoma Society (LLS). I feel like we cheated since we had a big corporate donation from our neighbor. Her company donates to the LLS every year anyway and she gave us the check to apply to our fund raising account. We kept a good chunk of it and split the rest between our training team members. I sent out one batch of letters but need to send more. Nonetheless, the friends we sent to have been very generous and we thank them.

Texas Hold’em Tournament - Our team in training group is having a Texas Hold’em Tournament to help raise funds for our group. It will be on Friday, November 4, 2005, 7:30 pm at Side Pockets, 1229 E. Santa Fe, Olathe (just west of I-35 on Santa Fe). There is a $20 donation if you buy a ticket in advance, or $25 donation at the door. Top five winners will receive a prize. We have tickets to sell if anyone is interested. It should be a lot of fun. There will also be a silent auction.

Wednesday, October 5, 2005 8:39 AM CDT

I’m a few days behind in updating – I thought I would update every Monday.

I posted a few new pictures. I put two pictures of Nathan and Zach from Christmas long ago – They each got a Christmas bulb and waited and watched for it to grow. Nathan’s took off faster and bloomed first but it had fewer blooms and not as spectacular. Zach of course thought his would never bloom. When Zach’s finally did bloom it had four of the most breathtaking blooms on it. When I look at it now I think of it like Zach’s life – He bloomed for a shorter time while here on earth but what a spectacular bloom he was – so full of life and laughter and love. I miss him everyday and long to “feel” him with me. I think of him so often but don’t always feel his presence. It happens at the oddest times and always leaves me happy. I was running the other day and had just finished a hill and was at the top going down – a really nice breeze cooled me off and I thought of Zach – I could feel him in the breeze and it felt so good. We got pictures back from the poker run and there was one of my Mom – this isn’t nice to say but she was holding her raffle ticket in such a way that it looked like she was giving the finger to someone – I was by myself and started laughing out loud – I knew if Zach were here we would be laughing our heads off at how funny grandma looked in the picture – I could feel him laughing with me. As much as I think of Zach I don’t always “feel” him but when I do it feels so good. I also posted a picture of Bill at the KC marathon a couple of weeks ago.

First - news on the Poker Run from October 1 that Bill organized. We had 48 riders – not as many as Bill was hoping for but I would say a good turnout for the first time. Bill raised about $1,300 from the riders and the raffle/auction. The total including all the corporate sponsor donations was over $6,000! This money goes to CureSearch which is the National Childhood Cancer Foundation. I know Bill is already thinking of ways to make it bigger and better for next year (so watch out!). He was flying by the seat of his pants this first go around and I really admire him for all the work he put into it. I am ashamed to say I did not help him at all but he had the help of some great volunteers! Two of Zach’s favorite nurses came out for the morning of the ride and it was great to see them! There was a band that played after the ride was over – not a lot of dancing going on but Bill got me out there at least once. My birthday was the next day so Bill had a cake ready and had the band play Happy Birthday for me. I had a few friends show up that I hadn’t expected to see so we had a nice time Saturday night.

Training update – ughhhhh! What were we thinking!!!??? We had a light week only running 8 miles – We do 14 this Saturday. We fell a little behind this weekend for our Sat run because of the Poker Run – Bill ran his Sunday afternoon and I ran mine Monday night which then throws is off the rest of the week. We are up to 3 miles on Tues/Thurs and the long distance on Saturday keeps creeping up! I really do think of Zach and Hannah and how hard Hannah is fighting now and knowing they are not about to give up so I can’t either. We are supposed to cross train on Mon/Wed/Fri which hasn’t happened yet. I need to get a little more serious about it. I would like to say I have a lot more energy but it seems like I am exhausted all the time. Improving my eating and sleeping habits would probably help some too!

Thanks to everyone so far for their generous donations to the Leukemia & Lymphoma Society by sponsoring us. I think we are at 13% of our goal – I need to get more letters out.

I started back to work fulltime this week. I had been ¾ time although it felt like fulltime since I went in 5 days a week. I’m not happy.

Please pray for Hannah and her family. Hannah is getting ready for her stem cell harvest. See the link below to visit her website and send an encouraging message. DeeJo does a great job of updating it everyday.

Saturday, September 24, 2005 8:32 AM CDT

It feels strange to be updating this and I am not sure anyone will even read it but I suppose it may be good for me anyway.

I thought I would try and update this journal once a week on our progress and anything that we know of that is coming up.

I don’t have any pictures yet to update with but there is a marathon here in Kansas City this weekend and Bill is going to run the ½ marathon (13 miles) since our training for Saturday is to run 12 miles anyway. I am not going to run in it but I did volunteer to be at one of the water stations along the way. The Kansas City Marathon proceeds (mainly register fees from the participants who run in it) go to Children’s Mercy Hospital and the Leukemia and Lymphoma Society, both worthy causes. My friend Karna who ran her first marathon in June in memory of Zach and who inspired us to do the same is also running in the KC marathon. I will try and get a picture of Bill running and I want to get a picture of our group to post as well. I thought I might just post different pictures of Zach as well.

Bill is doing better with his training than I am. I felt so confident that I would do just fine since my motivation is my memory of Zach and all the others we have met along the way including Hannah who is enduring so much right now. It has been hard to make myself run though on several occasions. I like my Saturday run which is our long one for the week. It gets us up early and I like it when it is done since I feel like I accomplished something. It leaves me with a high for the rest of the day but it doesn’t last through the rest of the week! We run 3 days a week (Tues, Thurs and Sat) and are suppose to cross train with a non-impact program on Mon., Wed and Friday (biking, yoga, weights, etc.). Sunday we rest!!!! It is amazing though the progress we have made just in the one month we have been training. Bill of course runs the entire way – I do a combination of running and walking although I did manage to run all six miles last Saturday. I call it running but it is not very fast at all – It not the speed that matters though – it is finishing that counts.

Bill has been busy organizing the 1st Annual Zachzoo Poker Run which is on Saturday, October 1, 2005. It is a benefit ride and all the proceeds will go to CureSearch, which is the National Childhood Cancer Foundation. It sounds really fun – It is mainly for motorcycles but really anyone can participate – You pay $10 to register and you go to five different stops and get a playing card as each stop. At the final stop the best poker hand wins. The finish is at a restaurant/bar called Frankie D’s. They will have a band playing through the evening and there will be drawings for prizes and other fun things. Bill has gotten many donations from area restaurants and businesses. I am going to try and attach the flyer but not sure I will be successful. If you know anyone that rides a motorcycle or you think might be interested in a flyer you can always e-mail us and we will forward to you.

I have been dragging my feet in getting our letters out for the Team-in-Training Marathon to benefit the Leukemia and Lymphoma Society. They were supposed to be mailed a few weeks ago. We need to get busy with our fundraising if we intend to hit $7,000. Most of the fundraising will be on our own but our group is planning a few fun fundraising events which I will post when I know more details. One is a Texas Holdem Tournament to be held at an area restaurant sometime mid-October. We are also going to be car hops at one of the Sonics but that is on October 1 so not sure Bill and I will be able to make that one. I will post more next week when I know more details.

A personal note – Bill and I attended the Children’s Mercy Hospital’s Annual Memorial Service on Sunday, September 11. It was an emotional time but I was glad we went. At the end of the service we all released butterflies and now every time I see a butterfly I wonder if it is Zach checking in on me. I don’t know if this is butterfly season but I have seen so many since we did the release. I am still very emotional and seem on the verge of tears most of the time which any amount of stress can seem to set off. I know there is more I need to do for myself but I can’t seem to move forward. Nathan starts his Confirmation Class at Knox Presbyterian this Sunday and they are beginning their 40 Days of Purpose so I feel like it is time for me to go back to Church. I don’t know why it has been so hard for me to go back but it has.

As always – Thanks to everyone for their continued support and for holding us up in their thoughts and prayers.

Dear Zach,

Dad and I love you so very much. God blessed us for eleven years with the best son any parent could wish for. We had so much fun together. You continually amazed me with your humor, your creativity, your sensitivity and your thoughtfulness. You had so much love to give. I love you the very, very, very, very, very, very….. mostest, forever and always! I can’t wait to see you again! Until then…

Love, Mom

Sunday, January 30, 2005 7:04 PM CST

Saturday, December 18, 2004 1:24 AM CST

“The Lord is near to those who have a broken heart”. Psalm 34:18

Bill, Nathan and I are truly broken hearted. I know that Zachary is in a better place and he is in God’s loving arms, but we are still so broken hearted that we can not wrap our arms around him and enjoy his sweet smile. I fear my heart will not recover and I pray that over time I will reach a point that I can remember Zach without the bittersweet tears that currently overtake me.

I wanted to let everyone know that we have planned a Visitation for Monday, December 20 from 6:00 pm to 8:00 pm and a Memorial Service on Tuesday, December 21 at 11:00 am. Both will be held at Knox Presbyterian Church, 9595 Knox, Overland Park, KS. We welcome everyone that would like to attend both the Visitation and/or the Memorial Service. We want to celebrate Zach’s life in the best way we know how and part of that is to share it with everyone that knew him. Memorial contributions may given in memory of Zachary to Children’s Mercy Hospital: Attn: Resource Development, 2401 Gillham Road Kansas City, MO 64108 or to the Leukemia and Lymphoma Society, Mid America Chapter, 6811 W. 63rd Street Suite 202 , Shawnee Mission, KS 66202.

I can not let this opportunity pass and not express our love and gratitude to everyone that had a part in Zach’s care at Children’s Mercy Hospital. It was Zach’s home for such a long time and they became a part of our family. It was truly amazing the amount of love that was shown to Zach and our family as we passed through this journey. I will never forget how kind and loving they were to Zach. I know they each had a job to do but the love was something they gave from the heart. Words can not express how much it meant to all of us.

I also want everyone to know and not to not underestimate what all of you have done for us with your unfailing support and encouragement - be it prayers, messages, phonecalls, kind deeds and thoughtful words. I must admit I had not read the website messages for a while and I was so comforted by all messages. Some funny, some touching, all encouraging, some with Bible verses, some with poems, all of them special.
We are so blessed to have so many friends and well wishers.

Everyone at Zach’s school, Katherine Carpenter, already knows what an awesome gift they made, but for those of you who do not know I must tell you. We have the smallest school in the Shawnee Mission School District (barely 200 kids) and the families and staff raised $2,400 to buy at least three rolling entertainment centers for the kids on the oncology unit at Children’s Mercy. They will each have a plague on it with Zachary’s name. They presented Children’s Mercy with a check on Thursday at a very emotional student assembly. AWESOME! Thank you to all the families and staff at Carpenter!!!

A special note of thanks to Mr. Coleman’s and his 4th grade class who were authors and illustrators of a special book written for Zach. It was entitled “Carl the Dragon” and it was an inspiring story of Carl, a dragon, who enters Zach’s body to help him fight and win his battle with leukemia. We loved the book and it will be a special keepsake.

Another special thanks to the Knox kids who had their children’s Christmas musical last Sunday. They dedicated the musical to Zachary. What an AWESOME job they did! We loved it.

I am not quite ready to give up our website yet so I will probably post at least a few more journal entries before I am done.

Thursday, December 16, 2004 8:12 AM CST

Zachary Stewart Marion passed away peacefully on December 16, 2004 at 2:00 AM.

Thank you for all your support.

Funeral arrangements pending.

Monday, December 13, 2004 3:58 PM CST

Now this is the confidence that we have in Him, that if we ask anything according to his will, he hears us. 1 John 5:14

I know that the last journal entry was as hard for many of you to read as it was for me to write. So many people are following Zach's journey and the news was such an unexpected change to many of you.

We are still at Children’s Mercy Hospital and truthfully I don’t know if we will make it home or not. I have been so reluctant to leave the hospital in Zach’s current condition. We met with the hospice folks and also with Zach’s doctor last Tuesday. Zach’s respriratory condition continued to decline everyday last week and frankly I was scared to take him home. As wonderful as the hospice program is here in Kansas City, I am not sure if Bill and I are up to taking care of Zach at home with all his current needs. In the last day or two Zach’s condition has seemed to stabilize somewhat so if that were to continue or improve we may reconsider going home.

The doctors did make a change to Zach’s pain medicine which seems to have done a much better job of controlling his pain. All the pain medicines can cause confusion and sleepiness and Zach moves back and forth from a dream state much of the time. Although each day is different, for the most part Zach sleeps through much of the day waking often for brief periods. Zach did perk up on Thursday and Friday though and was awake for much of the day. It was such a welcomed change! He even got out of bed for a brief period on Friday and sat in a chair. Bill brought some old home videos and picture albums and Zach seemed to really enjoy looking at them. Saturday and Sunday were back to mostly sleep. There is some medicine that can help counteract the sleepy effects which can help Zach be more awake for part of the day. We are still trying to figuring out what dose is best. Zach uses an oxygen mask all the time and his speech is a little slurred so it is hard to understand him when he talks and he gets frustrated because as hard as we try we do not always figure out what he is saying. Zach remains true to his character though and is still so thoughtful and sensitive.

We ended up with many visitors and phonecalls over the weekend. Bill’s sister Deb and brother-in-law Jeff drove down from Cedar Rapids, Iowa. My sister Shelley and her boyfriend Tyson drove all the way from Atlanta, Georgia. Bill’s son Nick drove in from Chicago Sunday night and it was so good to see him – he is going to work out of the Overland Park office this week so we get to enjoy his company all week! We are not turning away visitors so please know that brief visits are always welcomed by anyone who would like to come. Zach may or may not be awake at any given time. We know you all are thinking of us.

I finally updated the website with the most recent pictures I have. They are around Halloween which seems like an eternity ago. I should have some from the “incredible” day at the movies by the next time I update this.

Prayer concerns:

*That Zach’s pain can continue to be controlled at a comfortable level, that Zach is at peace, that his lungs begin to clear up and heal, that he heals from any other infections going on, and for complete remission from the leukemia.
* Comfort for our family as well as guidance for me and Bill as we continue to face some difficult and painful decisions regarding Zach’s care.
* That we all enjoy and reflect on this special time of year as we prepare to celebrate the birth of Jesus Christ, our saviour.

We know we are held up in prayer by so many of you and that helps sustain us. Thank you to everyone for your steadfast thoughts and prayers.

Joke of the day:
A guy says, "Doctor, Doctor! Help me, I keep thinking I'm getting smaller!"

Doctor replies, "Well, you'll just have to be a little patient."

Monday, December 6, 2004 10:34 PM CST

“Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings.” (Thank you Lawsons for that wonderful Bible verse and as always your care & concern)

I struggle as I write this journal entry. I want to keep everyone informed but don’t always know how much to include. So much has happened in just the last few weeks regarding Zach’s condition. I want to be both optimistic but also realistic with what is going on. Bill and I have been so hopeful in our hearts but we do not want to be so blinded by our hope that we are not able to accept the reality of what is going on so we can prepare and do what is best for Zach. With that in mind, we are considering bringing Zach home and using a hospice team to help us care for him. We are going to meet with them in the next day or two. I think we will most likely continue his current treatment but would just rather have him home and as comfortable as possible at this point.

Just in the last week Zach has spent more and more of the day sleeping. He is asleep most of the day with brief periods of alertness. I know some of it has to do with the pain medicine he is on but I also think his body is working so hard to maintain his oxygen requirements that it just wears him out. He only gets out of bed to sit in a chair once or twice a day for brief periods and even that is a huge effort. It is painful for me to have him asleep so much of the time because I miss his company. The days are quiet and long (although by the end of the day I wonder where all the time went). I miss his smile and his laugh and his sense of humor. I really don’t remember the last time he laughed and even the smiles are becoming rare but oh so cherished.

Zach has been having fevers on a regular basis for almost two weeks now. Nothing is growing back from the blood cultures so they don’t know exactly what is causing the fever. With each fever his body has to work a little harder until his temperature comes down.

Zach was doing better with his lungs before Thanksgiving and then took a turn for the worse. His oxygen requirements were steadily increasing and x-rays showed some fluid in the lung area in the lower right lobe. They drained a small amount but were not able to get what they would have liked. He is still requiring quite a bit of oxygen. Respriratory had been doing forced air treatments which they had stopped for a period of time but are back to doing again. It helps to open up “pockets” of air in the lungs. We still do not know exactly what is going on in his lungs regarding the aspergillis.

On the bright side – Zach insisted we get a Christmas tree up so the Saturday after Thanksgiving my Mom and Dad brought up a little tree (actually not so little - 4 ½ ft) and we decorated it that night. I had to bring all the ornaments from home so he could pick and choose what ornaments to decorate with. We also put up some Christmas lights - against Children’s Mercy Hospital rules I have since found out - but they said not to worry about it. So if it turns out we are still here on Christmas we are all set. I do know that where ever Zach is, Santa will find him! Zach woke up on December 1 and asked for the advent calendar first thing so we are counting the days until Christmas.

Early Christmas present - Many of you may have read the article in the KC Star about Zach’s big surprise last Friday. Zach has been wanting to see the movie “The Incredibles” even before it came out a couple of weeks ago. We were hoping to be out of the hospital by then and of course that did not happen. A lot of the people up here at Children’s Mercy knew about it and one of the nurses (Thank You Sherry!!!!) started the ball rolling. An organization called Elves of Christmas Present took over from there and coordinated the effort between AMC theaters, MAST ambulance service and Children’s Mercy. We had the theatre to ourselves and got to enjoy a special viewing of the movie with some friends and family. When we got back to the hospital Zach’s room had been decorated with all kinds of “Incredible” stuff. It was really a huge undertaking to get him there and we have to say thanks to all the people that helped pull it off! Zach rallied for the occasion and really enjoyed it all.

Prayer concerns:
1.) Comfort and peace of mind for Zach.
2.) Comfort and strenght for me and Bill as we are faced with some difficult and painful decisions regarding Zach’s care.
3.) Comfort and strenght and understanding for Nathan as he goes through this difficult time.
4.) We have not abandoned our hope for recovery and still pray for healing for Zach, for his counts to rebound, for complete remission from the leukemia.

We still thank the LORD for our many blessings and remain faithful.

We know we are held up in prayer by so many of you and that helps sustain us. Thank you to everyone for your steadfast thoughts and prayers.

Sunday, November 21, 2004 1:29 PM CST

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Philippians 4:6

I have been trying to post some new pictures but have had trouble doing so. Will keep trying.

Dear McMahons (Kim, Paul, Morgan & Taylor) – Zach got Dr. Cuddles and he loves him! You guys did a great job! I know that with Dr. Cuddles help Zach can make it over Mt. Everest!

It was sooooo great to see you Grandpa Leo and Maryjane! I wish Zach’s spirits had been a little better and he could have visited with you a little more but he knows how much you love him! Zach wanted Grandpa Leo to put on the afro wig and we got a picture of that – it made Zach smile!

Jeff – Thanks for all your phonecalls. Hopefully Zach will be up for visitors soon.

Jessica – They brought in your basket filled with goodies as I was writing this. Thank you to you and Rick and your families for your thoughtfulness. I’m sorry we did not get to thank you in person. The joke book will come in handy right now.

It has only been one week since my last journal entry but it seems much longer than that. Zach had another rough week but I think he is finally beginning to turn around. We have had a couple of serious discussions with the doctors which have been very hard on Bill and me but we continue to remain hopeful for a complete recovery.

Zach had is lung biopsy Friday night (Nov 12) and was able to go back to his room that night instead of the Intensive Care Unit. Zach slept much of the weekend and is still on a continuous pain drip. It is a challenge to give him enough to make him comfortable but not enough to zonk him out completely. The doctors recommended a second surgery to clean out what they thought was a large area of infection surrounding his right hip. This was done on Tuesday (Nov 16). As it turned out they did not find any infection to clean out or drain so they stitched him back up. The doctors were baffled as to what was going on. So far the initial results of the lung biopsy have indicated it is the same fungal infection that has plagued Zach although I don’t think anything has actually grown back yet so they don’t know if it is a new, more resistant strain or not. Late in the week the biospy from the hip surgery grew out some kind of microorganism which has not yet been positvely identified although they added two new antibiotics to help fight it.

Everyday has been an uphill battle but we also see a little progress made each day. Zach is still in bed all day and half the battle is getting comfortable when there are only one or two positions that feel good. I was worried about bed sores earlier in the week but Zach is able to position himself in bed a little better so I hope we are past that worry. He usually gets out of bed at least one a day to get weighed and in the beginning of the week it was a monumental effort and took several people to accomplish. It gets a little easier everyday and yesterday we had Zach in the recliner chair for a brief period. He actually spent a few minutes in the activity room on Thursday. He is still so sore in so many spots that it just is not comfortable to sit for long anywhere. On top of everything Zach is now suffering some kind of bladder irritation after his cathater was pulled out on Wednesday. It has been as miserable and painful as the leg pain was but in a different way.

As sick as Zach was and still is there are many blessings to be counted. He has been fever free for about six days now so that is a very positive sign. Zach’s leg pain is so much better and he is able to move a little more each day. On Saturday we had little rise in Zach’s counts although we are back to zero today – but it is a good sign that we may start to see a rise anyday. Zach’s spirit needed healing as well as his body – that much pain for so many days just knocked it out of him – and each day I see a little more sparkle come back to his eyes that makes my day! If any of the nurses and care assistants are reading this I have to thank them for all their love and patience with Zach. It has been trying for all of us!

Prayer concerns: Please pray that Zach’s counts come up as soon as possible to help Zach fight off all this infection. Pray that as his counts come up that his bone marrow is producing healthy productive blood cells and that the leukemia and monosomy 7 do not return so that he is back in remission. Please also pray for healing and strenght and comfort for Zach both physically and mentally.

I feel I must say thank you to everyone at Terracon where I work. I had been trying to go in a little bit every week but over the last couple of weeks I realized that it was not going to be possible to continue that for now. They have been so supportive and have helped in so many ways! It is actually a huge relief off my mind at this point and I can focus not only on Zachary but on Bill and Nathan as well. Zach was always bummed out when I would leave even when he was feeling good so this in itself is comforting to him.

This Thanksgiving we will be counting our many blessing which includes all of you! We will probably be here in the hospital since Zach is still on oxegyn and so many antibiotics but they do serve a Thanksgiving dinner here and I know my Mom will be providing for us too!!!!!

We had not gotten on the website to read messages for the last few weeks so we enjoyed catching up on all the messages. It really makes a difference when we read everyones messages and know how many people care! As always – Thank you so much for your prayers and cards and care packages and meals provided and messages.

Zach’s joke/thought for the day:

An apple a day keeps the doctor away – if aimed right!

Some days Zach just wants sleep and I know that half the time Zach would just like it if they would go away - especially if they come in early enough!

Friday, November 12, 2004 5:14 PM CST

but those who hope in the LORD will renew their strength. They will soar on wings like eagles:…
Isaiah 40:31

Today is Friday and it is the end of probably the hardest weeks we have gone through since this whole thing began.

The leg pain that Zach complained of late last week continued to get worse and by last weekend Zach was in constant and severe leg pain. Over the weekend they put Zach on a continuos pain drip which helped him stay comfortable if he was not moving, but any movement was still very painful. Originally the doctors thought it might be some kind of nerve pain so neurology got involved. Monday they did a MRI and a leg x-ray but nothing showed up. They decided it might be some kind of bone problem so Orthopedics ordered some tests. The first test was a sonogram of his leg/hip and they found fluid in the hip socket which they drained (done on Tuesday). Wednesday they did a bone scan of the leg/hip. The bone scan did not reveal anything. On Thursday they did a CT scan of Zach’s lungs, abdomen and pelvic area.

Late yesterday (Thursday) afternoon the doctors came back with bad news regarding the results of the CT scan done earlier in the day. The scan showed a large area of concern on Zach’s lung (as well as smaller areas throughout) and an area surrounding his right hip and something on one of his kidneys. At this point they do not know what kind of infections they are and if they are all being caused by the same thing or not. It is possible it is the aspergillus (fungal infection in his lung) that he has been being treated for since his lung infection after round 2. It has never gone away and they have been trying to control it during the subsequent rounds. It may be a new kind of infection – bacterial or fungal – they don’t know yet.

Zach had a CT scan of his head today (/Friday) to see if the infection might be anywhere else - the news was good that it was clean. They also tried to drain some fluids from the infection surrounding his hip to determine what the cause is although they were not very successful at getting much fluid so the test results may not show much. Zach is scheduled for a lung biopsy sometime today to get a piece of the lung tissue to determine what it is. Any surgery on Zach at this point is of course risky since his counts are still zero.

We probably won’t know too much before Monday so it will be a long weekend. They have changed some of his antibiotics so he is on the strongest coverage antibiotics for both bacteria and fungal infections. We will also have to see if he responses to any of them.

Prayer concerns: Please pray that Zach is comfortable with his leg pain and that he does well recovering from the lung biopsy and does not have any complications. Please pray that the infection is identified and that it can be treated successfully by antibiotics. One of the best defenses for Zach would be his own body so please pray that Zach’s counts come up very soon to help in the fight. Please also pray for Zach’s mind to be at ease with everything that is going on and for strenght and comfort for the rest of the family during this difficult time.

Dad’s thoughts; I truly believe that Zach will get through this last episode of tough times because he is such a fighter. His wings will open and he will fly over the rough road he travels. Your prayers will get us through this. I believe that Zach’s life will touch millions.

As always – Thank you so much for your prayers and cards and care packages and messages. They mean so much to us.

Friday, November 5, 2004 10:27 AM CST

but those who hope in the LORD will renew their strength. They will soar on wings like eagles:…
Isaiah 40:31

Prayer concerns: Please pray that Zach is in remission after this 4th round (that both his leukemia and the monosomy 7 are gone). Please also pray that Zach’s lungs are clear and that he will be able to move to the bone marrow transplant unit. Please pray that Zach does not get any more infections that might delay things.

New pictures – Check them out!

Thank you Alex for the Army sweats and the visit from Aunt Deb, Uncle Jeff and Devon! We LOVED seeing you.

The movie The Incredibles comes out today and Zach wants to see it sooooooooo bad!

Sponge Bob (AKA Scott Collins) - Thanks for the pictures of the 6th grade party. It looked like so much fun! Mr. Falk makes a pretty GROOVY hippie! Nice diapers Dylan!

Here it is November 5 and we are still in the hospital. November 7 will be a month. Zach has been done with round four for almost three weeks and we are just waiting for count recovery. So far we don’t have any signs of it going up yet but we hope it is any day! He has been feeling mostly good but he has had the same type of psuedomonas twice now so they removed his central line Monday night in case it was in the line. He was completely under when they removed it and they put in a temporary IV line in his arm. The line was causing him some pain so on Wednesday they removed it and moved it to a different spot. He will get another central line put in as soon as his counts go back up. For the last day or two he has been complaining of leg pains so they are watching what is going on there.

Once Zach’s counts are back up they will do another bone marrow extraction (to see if he is in remission) and a CT scan (to see what is going on with his lungs). Please pray that he is in remission and that his lungs are clear. Both of these things have to happen before he can proceed to the bone marrow transplant center.

We have good news regarding the bone marrow match search. They have found several really good matches (narrowed it down to five) and are waiting for final test results to select the best match. All five contacted were willing donors and went in for further testing. Thank you for all your prayers!!!

We meet with the bone marrow transplant team next Tuesday to learn more about the bone marrow transplant process. I hear wonderful things about the doctor we will have for the bone marrow transplant. We will not know exactly when we move to bone marrow transplant until we have the results of round 4. The best news would be that Zach is in remission and his lungs are clear. We will know more after we meet with the transplant team and after the round 4 results are back.

Halloween came and went – Zach had a fever on Friday, the day of the Halloween party here in the hospital. He was really bummed since he could not leave his room so he missed the party. By Friday evening he was feeling much better due to the visit of his Aunt Deb, Uncle Jeff and cousins Alex and Devon! Even though he was stuck in his room we had a lot of fun. He dressed up as a girl for Halloween and we got some pictures that night. By Saturday he was able to leave his room and on Sunday Dad Nathan and Zach had fun dressing up as different things. They treat or treated the halls of 4H and got buckets of candy!

We need to thank Mrs. Raynes for delivering all the halloween decorations made by the kids at Carpenter. We decorated the outside of Zach’s room and it looked so great! We loved reading all the cards, messages and jokes they sent! It came at such a good time and really perked him up. He misses seeing all his friends so much and getting to go to school!

As always – Thank you so much for your prayers and cards and care packages and messages. They mean so much to us.

Zach’s comment and jokes of the day: My leg hurts!

If a plane crashed on the border of England and Scotland, where would they bury the survivors?
you don't bury survivors

Twelve pears hanging high, twelve men passing by. Each took a pear and left eleven hanging there. How can this be? How can eleven pears be left?
'Each' is a mans name!

What has a mouth but doesn't eat, a bank with no money, a bed but doesn't sleep, and waves but has no hands?
A river

If the red house is on the right side and if the blue house is on the left side where's the white house?
Washington DC

A cowboy rode to an inn on Friday. He stayed two nights and left on Friday. How could that be?
His horse was called Friday

Sunday, October 24, 2004 12:46 AM CDT

Philippians 4
5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

I’m am overdue for an update as usual!

Thanks for all the messages – We love to read them!

Zach finished round 4 of his chemo treatment Tuesday, Oct 13. It was a little bit harder on Zach and getting the nausea under control seemed to be the challenge. He got a fever on Thursday (two days after chemo ended) and it turned out to be psudomonas. They start them on antibiotics the moment they get a fever so he has a few more days to finish out the antibiotics. Last weekend Zach had the bloody nose to end all bloody noses! It started at 9:00 am and didn’t end until 2:30 the next morning. All day and what seemed like half the night Zach had this continual drip that just wouldn’t stop. They gave him two units of platelets and one unit of plasma to help the clotting but it still wouldn’t stop. The Ear Nose Throat people finally came up and put in some special packing to help end it. He still had some problems with bleeding on Sunday and Monday but it seems to be under control now.

We are so hopeful that this last round will put Zach back into remission (please continue to pray for that). We do not know if an actual match has been found yet, but we are getting positive information so far on the search. I know they are doing further testing on at least one person (so please also pray that they find a perfect match for Zach for the bone marrow transplant). We should know a little more next week regarding the search for a match. It is not a quick or easy process and I hear it can take months so we need to put our faith in God and be patient. We have not actually met with the tranplant team here yet so we will know more what to expect once that happens.

By the middle of this last week Zach was definitely starting to feel better. We actually got back to doing some school work after taking the last two weeks off! Although it is still really a struggle to get him to do it!

We are really hoping to out by the Halloween weekend but right now his counts are zero so no telling what they will do this coming week. Zach is still undecided on a Halloween costume!!!!! Nothing like waiting until the last minute. He is looking forward to the Halloween party here on Friday since we have heard they go all out!

We can’t wait to see you over Halloween weekend Aunt Deb, Uncle Jeff and cousin Alex and Devon!!!!!!!!!!!!!!!

As always – Thank you to everyone for your continued support, prayers, cards, messages and so much more! Please continue to pray that Zach gets back into remission and stays in remission and that a perfect bone marrow match is found for Zach.

Zach’s Joke of the day:

Did you hear about the cannibal who was expelled from school?
He was buttering up his teacher.

Did you hear about the guy that lost his left arm and leg in a car crash?
He's all right now.

Have you seen Quasimodo?
I have a hunch he's back!

Zach’s comment of the day: “Hi everyone – I’m feeling good and ready to get out of this joint!”

Saturday, October 9, 2004 12:28 AM CDT

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

I am so sorry that I have not keep Zach’s website updated these last few weeks. We do so appreciate everyone’s concern and messages!

Zach finished his 3rd round and did very well with it. He had one infection that a round of antibiotics seemed to take care of. We checked out of the hospital Sept 28 and spent a little over a week at home. We went to clinic on Monday, Oct 4 for a bone marrow aspiration. They said Zach could go back to school for a couple days – Tuesday his back was still very sore but he did go back on Wed Oct 6 for the whole day. We were scheduled to check back in for round four on Thursday, Oct 7.

We checked back in on Thursday but received some bad news that Zach had relasped. He had been in remission after the 1st and 2nd round of chemo but after the 3rd round some of the leukemia blasts (7%) were present and the monosomy 7 was at 40% (from 3%). The monosomy 7 is a damaged chromosone which is causing the leukemia. They have changed Zach’s “protocol” and he is on a different regiment of chemo drugs to try and get him back in remission. It should hit him pretty hard and have some unpleasant side effects so pray that they do the job and that Zach is as comfortable as possible during this round. Zach is now scheduled for a bone marrow transplant due to his relaspe. They are in the process of finding a match which we do not know the results of yet. Although, they must first put him back into remission before they can do a transplant. Zach will have to go through this round of chemo and recovery and possible another before the transplant.

We have called this a huge bump in the road to recovery (Zach calls it Mt. Everest) but I know it is one he can get over. The first hurdle is to get back into remission. The next hurdle is to make it through the bone marrow transplant.

Please continue to keep Zach in your prayers – Please pray that this round of chemo puts Zach back into remission and that the doctors find a suitable match for Zach so he can have a bone marrow transplant. Please also pray for comfort for Zach and no infections.

A quick word about Zach – His spirits are really good. He is so excited about Halloween. Of course he is hoping he is out for a break by Halloween (hard to say at this point) but we hear the 4th floor here goes all out on Halloween so he is planning on coming back here for a visit even if he is out. No idea on a costume yet, but he did buy a big afro wig that he has been wearing around the hospital this last go around. We spent a day at the Renaissance Festival during this last break and Zach enjoyed that. We tried to go to one of the corn mazes but never made it. He has such a wonderful attitude and everyone here at Children’s Mercy make Zach feel so special. They really make it like a second home so coming back is not so hard. Thanks to Christy for the coolest hat she brought all the way back from England! – Christy is now in the lead for favorite nurse!!! The hardest part will be thanking everyone when we leave this place!

Zach’s comment of the day: “Thank you Christy for my hat and thanks everyone else for all your prayers.”

Joke of the day: (Not really Zach’s joke of the day – I just liked it)

Three vampires walk into a bar.
The waitress comes up to them and asks them what they'll have.
The first vampire says, "I'll have a glass of O Positive."
The second vampire says, "I'll have a glass of AB Negative."
The third vampire says, "I'm the designated driver.
I'll just have a glass of plasma."
The waitress turns toward the bartender and yells,

"Gimme two bloods and one blood lite!" :)

Thursday, September 16, 2004 12:58 AM CDT

I posted new pictures on the website last week - check them out!

Light the Night is Friday, September 17th, 6:00 pm at Corporate Woods. It is a sponsored by the Leukemia and Lymphoma Society to raise money for blood related cancer research. See more info at the bottom of this journal entry - Thank you to Leslie Prayson (Terracon) for organizing the Zach Attach walking team!!!!!

Zach has already finished his 3rd round of chemo - finished up last Sunday (Sept 11). So far he has been feeling good throughout his stay. He has been fever free and has kept his appetite. They started him back on his antifungal antibiotic for his lung infection this week and he will continue on that. We pray the infection does not take hold of his lungs again although he has been complaining of some pain in his right lower lung. We are still in the hospital waiting for Zach's counts to "bottom out" and then we will wait for them to start the upward trend. Zach's hair is starting to grow back in a little bit, but he may lose it again with the lastest round of chemo. Please pray that round 3 wipes out the "Monosomy 7" chromosone and that the leukemia does not return - Doctors will do another bone marrow test in a few weeks to see the results. We are still not sure what route Zach will take depending on those results (either two more rounds of chemo or a bone marrow transplant).

Zach has a teacher that comes 30 - 45 minutes at day here at Children's Mercy. I am struggling to get him to do school work on his own - apparently I am not as exciting as Mr. Falk. We have not meet our homebound teacher yet, but when we go home the Shawnee Mission district will provide a teacher for 5 hours a week. It is going to be a challenge until he is able to be back in the classroom. I know there are lots of parents that teach their kids at home but I am not one of them!

Zach's comment of the day: Hi! (a man of few words)

Zach's joke of the day: (apologies in advance to any blondes reading this) A dumb blonde was bragging about her knowledge of the state capitals of the United States. She proudly announced, "go ahead, ask me any of the capitals, I know all of them."

A red head said, "O.K., what's the capital of Wyoming?" The blonde replied, "Oh, that's easy, 'W'."

Please continue to prayer for Zach's complete recovery. Thank you to everyone for their continued support.

But Lord, you are my shield, my wonderful God who gives me courage. Psalm 3:3

Light The Night Walk

Location:
Corporate Woods
Building 40
Overland Park, KS Date: September 17, 2004 - Friday

Beginning Time: 6:00 pm Central
End Time: 9:00 pm
Suggested Donation: $100 per Walker

Event Description:

The Light The Night® Walk is The Leukemia & Lymphoma Society's annual nationwide evening walk that celebrates and commemorates lives touched by cancer. Families, friends, company teams and civic groups raise funds and walk along a two- to three-mile route in their communities, carrying lighted balloons - white for survivors, red for supporters.

More than a walk, Light The Night is a community celebration and coming-together, with food, music and family activities, providing help and hope for thousands of cancer patients and their families.

Plan to be there if you can!

Thursday, September 9, 2004 10:54 AM CDT

Sorry I haven't been better about updating things. I hope everyone had a great Labor Day weekend!

September is childhood cancer awareness month.

Friday, September 17 is Lite the Nite! I think it is around 6:30 pm, at Corporate Woods. This is 2-mile walk sponsered by the Leukemia and Lymophoma Society to raise money for blood related cancer research. Terracon (my work) is sponsoring a team for the walk. They are hoping to raise at least $1,000. If anyone is interested in making a donation or joining the walk, let me know! See the link to the webpage. Thanks, Sara

Zach had a great week and a half at school! He made it through the entire day, ate school lunches, played kickball and other games at recess and best of all got to be with his friends! While at home he got to go to a movie, bowling, miniature golf, have a friend spend the night, and some other fun things.

Zach's CT scan (chest x-ray) looked good enough to go ahead and start his third round of chemo. We got to be at home over the Labor Day weekend and Zach was admitted back to the hospital on Tuesday (9/7/04). They started his chemo right away - One of the chemo drugs is given in a high dose for this third round so they also give Zach eyedrops every two hours around the clock for the duration of the chemo. So far everything is going good and Zach is even getting use to the eyedrops (he was very worried about them before coming in). This round of chemo is for five days. We will stay in the hospital for some time afterwards as well waiting for count recovery, but it is hard to say how long. Please prayer that round three goes well, that Zach's monosomy 7 count is zero after round three, and that Zach is infection free.

We are working with a teacher here at Children's Mercy to keep up with Zach's studies, although she only comes in for 30 - 45 minutes a day (today is only the second day). Alot of the work will be independent with the help of Mom and Dad. When we are at home, a Shawnee Mission district teacher will come to the house 4 - 5 hours a week.

Zach's comment of the day: hey every body i'm back in the hospital and have started the 3rd round and i HATE THE EYEDROPS!!!!!!!!!!!!!!!

Zach's joke of the day: What building has the most stories? The library of course! Hee Hee

As always, thank you for your continued prayers and support.

I have the strength to face all conditions by the power that Christ gave me. Philippians 4:13

Saturday, August 28, 2004 8:31 AM CDT

Where do we begin to thank everyone for their support at the bone marrow drive! I don't know what the record is but they had over 160 donors and that is fantastic! They ran out of supplies! Thanks to everyone that supported it in some way and a special thank you to Karen Haffey, Beverly Godwin (& Margret!) and Nancy Richey for the many hours they spent organizing the event!

Karen -I hope you are having a wild time in New York City this weekend! You and Terri and Marla - what a hoot! I'm going next year!

Hi Grandma Haffey! Love hearing from you!

Hi Fennell's - xxxxXXXXxxxxXXXX - We used one of your jokes today!

Deb - We picked up the quilt on Monday - It is Beautiful!!!! A work of ART!!!!! I have pictures I'll put in the website as soon as I get developed! We got a letter from Alex - he is sending an address later.

Most importantly - Update on Zach. We went to clinic on Tues (Aug 24). The results of the bone marrow extraction show 100emission of the leukemia blasts. Thank you for your answered prayers Lord. Zach also has something called Monosomy 7 (a chromosonal defect) which caused the leukemia. There is still 3f the monosomy 7 showing up which is still not good. For now they are still planning on continuing with the 3rd round of chemo and doing another bone marrow extraction after to monitor the monosomy 7 (normally they would not do after the 3rd round). Doctors are discussing the possible risks/benefits of a bone marrow transplant if the monosomy 7 is still present after the third round. Please pray that the monosomy 7 is 0fter the next round of chemo and that neither return. We are also finishing up on the anti-fungal drug for Zach's lung infection so please pray that the next CT scan shows clean lungs so that Zach can continue on with his chemo treatments. One of the unintended benefits (?) of Zach being on this one month anti-fungal drug is his counts are much higher than they would normally be in between rounds of chemo - We had quite the surprise when the doctor said Zach could return to school for a couple of weeks! I wish I had my camera for the look on both Zach's face and mine - pure delight on Zach's - pure worry on mine! Zach went to school Wed. and Thurs. and made it through the whole day - even went out for recess in the miserable heat! He was so excited to have homework! He skipped school on Friday - some days are just harder emotionally than others. He will probably go to school all next week and if things go according to plan - the following week he should start round 3.

Please know that your prayers are being heard and please continue to pray for Zach's complete recovery!

Zach's joke of the day: Why do soccer players have so much trouble eating? They think they can't use their hands. =)

Let the peace of Christ rule in your hearts.......And be thankful. Colossians 3:15

Friday, August 20, 2004 8:38 AM CDT

The bone marrow drive is tomorrow!!!!! Saturday, August 21, 2004, at Valley View United Methodist Church, 8412 W. 95th St. Overland Park, 10:00 am to 3:00 pm. I know there have been so many busy people getting ready for this drive! I can just feel it is going to be a huge success in adding new donors to the National Registry. We are so blessed and honored to have such caring and dedicated friends! There is a little boy at Children's Mercy who is in need of a bone marrow transplant at this time but does not have any matches. I pray that someone tomorrow might be that needed match! We thank everyone for their commitment to this event! (Special thanks to Karen, Nancy and Beverly!)

Aunt Deb - We can't wait to see the quilt. I hope is comes today so we can have people sign tomorrow at the bone marrow drive! Love you guys so much - you need to send us Alex's address so we can write him. Good luck at school next week Devon!

Ryan - I hear you are a proud new big brother! I can just see that smile on your face! We can't wait to see Grace!!!! You are going to be the best brother ever!!!! Congratulations!

We are home! - left the hospital Wed afternoon (Aug 18). If all goes well we should be home for a couple of weeks finishing up the anti-fungal medicine for his lung infection and go back to the hospital for the third round of chemo in the first part of September. Zach had his bone marrow extraction done on Wednesday - the day we left. We should know some results by our next lab appointment on Tues, Aug 24. Please pray that everything is 100% in remission (leukemia blasts and the monosomy 7 chromosone). Zach seems to be recovering well from his pneumonia - it is just a long process. His right lung looked really good on the last chest x-ray, but his left lung still needs to do quite a bit of healing. Please pray for that as well. School started this week and I think it has been a little hard on Zach emotionally. We are working on the homebound schooling but it will take a week or two to really get it going. I know that will help him once he starts that. I want to keep him as involved in his regular 6th grade class as much as possible so he feels like his is a part of it - just haven't figured out how yet! He has such a great teacher - Mr. Falk - so I can't wait for him to get back to school. I may have been optimistic thinking he would be ready to go back by Dec/Jan, but I am still praying that he gets to finish the 2nd half of his 6th grade year in school!

Zach's comment of the day: I am glad to be home!

Zach's joke of the day: What did the two big chimneys say to the little chimney? You're too young to smoke!

Thanks so much to everyone for their continued prayers and support, messages, cards, meals, and more!

My soul shall be joyful in the Lord. Psalm 35:9

Thursday, August 12, 2004 10:50 PM CDT

Check out the new pictures of Zach with the Backporch Pickers, getting ready for surgery and celebrating birthday with Dad & Nathan.

The article about Zach and the bone marrow drive came out in Wednesday's KC Star neighborhood section for Shawnee Mission. I have received several e-mails from people who read the article and have shared their own experiences with leukemia and given their encouragement to Zach and our family. We hope the article reaches out to many who may not have known about the bone marrow drive otherwise.

Bone Marrow Drive - August 21, 2004, Valley View Church, 10:00 AM - 3:00 PM

Zach is doing well recuperating from his surgery last Wednesday. His breathing is getting better every day and he was able to be off oxygen during the day on Tuesday and a little bit this evening. He is weaning off his pain medicine as well. He has been fever free for a few days and has been able to leave the room and roam the halls. The doctors talked about doing his next bone marrow extraction tomorrow, but they may delay it until early next when his breathing is a little bit better. Please pray that the bone marrow results show 100% remission! Zach's counts are going up nicely and he would have already started the 3rd round of chemo based on his counts if it weren't for getting over this infection. He probably won't start the next round for another couple of weeks waiting for this lung infection to get better. Please pray that the lung infection clears up quickly. Zach is hoping that he will get some time at home before starting the next round. Right now I'm not sure when we might be able to go home.

Zach's knock knock joke of the day:
Knock, Knock.
Who's there?
Cow go.
Cow go who?
No, Cow go moo.

(You would think with all the joke books we have received we could come up with something better!)

Janet, Randy and Sam Stephens - Thank you so much for the smiley blanket! It is so bright and cheery and lights up the room! Sam, thanks for lending Zach all the Nintendo games! Thanks for all the messages!

As always, a heartfelt thank you to everyone for your continued support and prayers.

Casting all your care upon Him, for He cares for you. 1 Peter 5:7

Monday, August 9, 2004 11:17 AM CDT

Zach's comment of the day: "A report is coming to see me today from the Kansas City Star. I am really excited!"

Thank you to everyone for all your prayers!!! Zach is doing so much better. He has worked really hard on using his breathing exercise machine over the weekend and I think it has helped him alot (he started out barely able to get it to 250 and is now at 1,000!). We celebrated Bill's birthday at the hospital on Saturday and got a little putting machine - Zach likes to sit and practice on it. He is still very weak but he does get out of bed and sits over on my bed area and plays on the computer or watches some TV for a part of the day. The chest x-ray this morning looked much better as far as his lungs getting filled back up. The infection will take some time to go away, but we pray the medicine is able to clear it up completely. The doctors will wait until Zach is a little better and off oxygen before doing the next bone marrow extraction. We pray that the second round of chemo put Zach 100n remission so he can continue the rest of the chemo treatments. Zach is still having occassional fevers but they seem to be getting better as well - fewer and further apart. The surgeon looked at his incision today and thought everything looks good - it was the first they had looked at it since they removed the drain tube last Thursday. Thank you again to everyone for their continued prayers - We know the Lord is watching over us.

Zach's joke of the day:
Teacher - "Be sure to go straight home after school."
Student - "I can't. I live around the corner!."

I know everyone will be busy this week getting ready for school to start! I am curious how the homebound schooling is going to work, but I think it will be good for Zach and he will enjoy it - he loves to learn!

As always - thank you to everyone for your messages and continued support and prayers!

Don't worry about anything; instead pray about everything. Philippians 4:6

Thursday, August 5, 2004 3:28 PM CDT

I wanted to let everyone know that Zach made it through the surgery just fine. They finally sent us down at 7:00 pm on
Wednesday (yesterday) after a long day of waiting and worrying. We were back in our room by 10:00 pm. We thought it was kinda funny because they wheeled Zach down in his bed. I guess it makes sense because they are pretty well zonked out when they come back up.

We had a long night without a whole lot of sleep. Today has been OK and Zach has been up for most of it, but is pretty sleepy although he doesn't really want to sleep. He is sore where they did the procedure. They already came and took the drainage tube out late this morning - one less thing that Zach has to worry about. The doctors are concerned that his lungs are not inflating as well as they should be. There are breathing exercizes that Zach needs to do to make sure he get lots of air deep in those lungs. Getting up and around is really important also, but he is so sleepy it is hard to make that happen.

Some initial results of the biopsy show a type of fungal infection which is already being treated. It is still early to know all the results though - it still may be a couple of days. Unfortunately, the fungal infections take longer to treat, so pray he bounces back quickly so it does not delay the next scheduled round of chemo.

Zach is also scheduled for the next bone marrow extraction (probably tomorrow or Monday) to see the results of the last round of chemo. Pray that Zach is 100n remission in all areas!

Thank you for all your prayers for Zach and please continue to prayer for his complete recovery.

The testing of your faith produces patience. James 1:3

Tuesday, August 3, 2004 10:39 PM CDT

Arrrrrgh!!!!! I just lost my whole journel entry!!!!

I will be brief since I don't feel like retyping it all!!!!

Zach is back in the hospital as of last Thursday. After a chest xray (last Friday) and a CT scan yesterday, the doctors have discovered several spots of infection on both lungs. Zach is scheduled for a biopsy tomorrow to see if they can determine the cause of the infection so they will know better how to treat it. They will take a small piece of the lung to analyse. Zach is very worried about tomorrow. We just pray that all goes well during the procedure and that they are able to identify what is causing the infection. There are always risks in these types of procedures and especially since Zach's counts are so low for any infection fighting ability. We pray all goes well and that Zach heals quickly so he can move onto the third round of chemo.

I will try and let everyone know how things go tomorrow as soon as possible. Please pray for Zach.

Jeff Smith - Thanks for your visit and your cool drawing of Jimmy Nuetron! You always manage to put a smile on Zach's face.

Julie and Greg - Thanks for your visit tonight. You helped ease Zach's worries about tomorrow. To both the Conways and the Rays - Have a great vacation!

As always - Thank you to everyone for your continued support and prayers. It means so much to us and we feel blessed.

Jesus said, "Don't let your hearts be troubled. Trust in God, and trust in Me." John 14:1

Thursday, July 29, 2004 10:53 AM CDT

HAPPY 40TH BIRTHDAY Aunt Shelley!!!!!! - Will you ever forgive me for missing it!!!!! I will find a way to make it up to you! It is pretty sad when your "little" sister turns forty - doesn't say much for me, does it!

Bone Marrow Drive -Saturday, August 21 - Anyone wanting to help in anyway can e-mail Nancy Richey (nerichey@terracon.com). She is helping coordinate the volunteer staff for the drive.

I am late as usual in updating this! I need to at least update as soon as we leave the hospital so someone doesn't decide to make a visit and not find us there!

We checked out of the hospital this last Sunday (July 25). Zach had finally been fever free for two days and they let him go home. He is still feeling up and down as far as feeling well. The darn tooth is still bothering him but not as much although he isn't eating very well because of it - only wants soft foods - lots of mashed potatoes! Last time he was out he was eating nothing but steak - now it's mashed potatoes - go figure! He has been running a little bit of a fever this morning but we have been able to keep it down. I have tried to go into work some every day this week - I'm not sure if I will make it today with Zach running a bit of a fever - but I was going to try and get 30 hours this week which would be a record for me!

Right now we are waiting for counts to go back up before round 3- I figure if we are fever free that we will have a couple of weeks at home before that happens. We go to clinic a couple times of week to have lab work done. Zach actually likes to go and visit Annie and Stacey (two of the child life specialists at Childrens Mercy) and see what activities they have planned.

Nathan is home from boyscout camp - he had a good time although he said it was hot! most of the time. We are going to try and work on his room before school starts. Stripping wallpaper and painting - not moving very fast though1

Zach's comment of the day: He keeps saying "I don't know". He says Hi! and thanks for everything!

Zach's joke of the day:
Diner: What are your breakfast specials?
Waitress: Today we are offering hippopotamus eggs and elephant eggs.
Diner: Give me the hippo eggs. I'm tired of elephant yokes.

As always - Thank you to everyone for all you have done for us and continue to do for us!

Please continue to pray for Zach - We pray that the second round of chemo put Zach 100% into remission. We pray for complete healing after the final round of chemo is done!

Your light shall break forth like the morning, your healing shall spring forth speedily, and your righteousness shall go before you: the glory of the Lord shall be your rear guard. Isaiah 58:8

Thursday, July 22, 2004 6:39 PM CDT

See Bone Marrow Drive information at bottom of journal.

Just a quick update - We had a brief stay at home from Thursday to the following Tuesday (July 20) and got admitted again. Zach was having low grade fevers most of Tuesday and several bloody noses, so they finally said to come in. We have been in the hospital for the last two nights - not feeling terrible, but not feeling great either. Zach keeps having fevers which also keeps him confined to his room for the next 24 hours afterwards. We are not sure what is causing the fevers - he has a tooth that is bothering him and it may be the culprit. I don't know how long Zach will be in the hospital since a lot of it depends on how soon his fevers go away. We are also just waiting for his count to go back up from his second round of chemo so we can move on to round three.

We had the best time last night though (Wednesday July 21). Some friends of our at Knox Church(Kurt Kellemeyer and Ted Huff) are in a bluegrass group that get together every Wednesday night to pick some bluegrass music on the banjo, a couple of guitars, a mandalin, a bass guitar and a harmonica. Zach was going to go to their practice but wound up in the hospital - but that didn't stop the Backporch Players - so they brought the music to him. We had our own bluegrass festival right in the hospital. Everyone on the floor enjoyed listening to the group - they are the nicest group of guys you could ever meet!!!!!!!! I got some pictures so I will post them as soon as I get them.

Nathan gets home from boyscout summer camp tomorrow! Yeah!

It is hard to believe that summer is winding down and that school is around the corner!

I don't have a joke to add since I am at work and can never remember any jokes on my own. I don't even have a bible verse to add. Please continue to remember Zach in your prayers and pray that his fevers go away and that the second round of chemo worked 100%! Thanks go out to all of you for thinking about us and praying for us. We are so appreciative!

I don't know of any other way to get this flyer attached to this website so I am just going to copy it here -

The Kansas City Community Can Help!
Bone Marrow Donor Recruitment Drive Scheduled
In Honor of Zach Marion

We will hold a volunteer bone marrow donor recruitment drive in honor of Zach Marion on August 21. We will hold it from 10:00 am to 3:00 pm at Valley View United Methodist Church in Overland Park, 8412 W. 95th Street. Please plan to attend and become a potentially lifesaving donor!

Zach is one of the more than 30,000 children and adults in the United States who are diagnosed each year with life threatening blood diseases such as leukemia. He is an active, bright 11 year old, young man, with an aggressive form of leukemia called acute myelogenous leukemia (AML). You can visit Zach’s web page at www.caringbridge.org/ks/zachzoo to learn more about him. We are sure you will fall in love with Zach as so many of us already have.

For many of these patients, a marrow or stem cell transplant is the only chance for a cure and even with a national registry of more than 5 million donors, it is still difficult for many people in need to find a viable tissue type match. Such a transplant is possible only when the patient and the donor have matching tissue types. Nearly 30 percent of the patients in need will find a matched donor within their immediate family.

Zach does not have a match in the immediate family, so he is in the remaining 70 percent of the patients who must search for an unrelated donor, when or if they need one. These patients will turn to the National Marrow Donor Program’s (NMDP) Registry of volunteer marrow and stem cell donors in the hope of finding a match. At any given time, the registry is being searched on behalf of more than 3,000 patients. The chances of finding an unrelated donor vary widely, depending on the rarity of the patient’s tissue type. The chances are generally lower for African American, Asian and Pacific Islander, Hispanic and American Indian/Alaska Native patients. Because we inherit tissue types in the same way as skin, eye, and hair color, the best chance of finding a donor is within the patient’s racial or ethnic background. Minorities are currently underrepresented on the NMDP Registry, so the need for minority volunteer donors is particularly great.

The current cost of marrow typing is $65. There is currently a wonderful grant to cover $40 of that cost. To cover the rest of the costs, we are asking volunteers to donate the $25 balance. Minorities will be tested at no charge due to a federal grant. If you cannot afford the cost, there are some donations available to cover these costs.

Anyone between the ages of 18 and 60, and in good general health can potentially become a volunteer marrow donor. After being educated on the donation process and signing a consent form, volunteers give a small blood sample that will be tested for their marrow type and listed on the national Registry.

If a volunteer donor matches any of the patients searching the NMDP registry, he or she will participate in additional testing, a physical exam, and counseling about the donation procedures. The patient’s physician will then request either a marrow or stem cell donation.

If you would like more information about the donation process or how to become a volunteer marrow donor, call the Heart of America Donor Center at 913-901-3100 (www.marrow.org).

We sincerely thank you for your support.

Beverly Godwin, Nancy Richey, and Karen Haffey

Saturday, July 17, 2004 11:23 AM CDT

I tried to add a new picture and sort of messed things up. Then I tried to fix it but couldn't seem to get the old picture back.

I am going to try and put in some new pictures in the photo album area and will cross my figures that it works - so check them out!

We are home again!!!!

Sorry it has been so long since I updated this. We went back into the hospital on Monday, July 5 and Zach started his second round of chemo that day. It was an eight day treatment and he finished up the following Monday, July 12. Our second stay seemed sooooo much easier than the first. Zach was feeling good throughout the treatment. He did not run any fevers, he kept his appetite through most of it and maintained most of his weight. He was feeling good enough to bother the nurses and care assistants daily!!! He found out the syringes make great water guns and had great fun trying to get all the nurses! There were a few managed to get him back though!

We were really figuring we would stay in the hospital for at least another week to 10 days after the second round when the Doctor asked us if we wanted to go home. Apparently they were running short on rooms and since Zach had been doing well and not running fevers they said we could go home for his recovery. So we left the hospital late Thursday afternoon, July 15. It is hard to believe we are home already. Although we ended up going back to the clinic due to a bloody nose the very next day on Friday and spent all day there - Zach got a transfusion of platelets and blood. I'm not sure why they didn't give him the transfusions on Thursday before we left since I knew his counts were going down on both.

If this recovery is anything like the last, it will be a couple of weeks at home before we go back for round three. They will do another bone marrow extraction to make sure the chemo is still taking care of the leukemia cells. Pray that round two took care of 100f the leukemia. The third round of chemo is only for 5 days but is more intense. They will start Zach on eyedrops right away and he will get them every three hours since the dose on the chemo is so much higher and can cause eye infections. Zach is worried about getting the eyedrops but I know he will do fine.

There is also round 4 and 5 on the chemo and then he will be done!!!! We are figuring anywhere between a month and two months for each round so Zach's new "plan" is to be finished before the end of the year. Zach's spirits are good and he knows as much as I do (if not more!) about his scheduled treatments and all the drugs he is taking. Pray that he continues to feel well and that his spirits remain high and he is completely cured by the end of all this!

Nathan is at the Bartle Boy Scout camp at Ocseola, Mo. for 10 days. I hope it is not too hot and that he has lots of fun!

Zach's joke of the day: A dog with a bandaged foot limped into town one dyay. The sheriff approached the stranger and said: "What brings you to Dodge City?". The dog replied: "I'm looking for the man who shot my paw."

Thanks to everyone for their continued prayers and thoughts and cards and gifts and visits!!

Rebecca - I absolutely love the "picture" quilt.

I don't have a lot more info on the bone marrow drive but will post as soon as I do. Still schedule for August 21, 2004 at Valley View Church

Without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who diligently seek Him. Hebrews 11:6

Tuesday, July 6, 2004 9:02 PM CDT

Happy Birthday Shasta!!!!

Thanks for all your messages Ryan! Tell your mom it could have been worst - it could have been a skunk in the garage!

Mark your calendar - August 21 - Tenative date for a Bone Marrow Drive in Zach Marion's name. Zach is not currently scheduled to need a bone marrow transplant but it is such a worthwhile event and may benefit others with Leukemia or even Zach if it is ever needed. Thanks to Beverly Godwin and Mike Roberts, Nancy Richey and Karen Haffey for coordinating the event. More details to follow!!!!

WE ARE BACK! - ROOM 4417

I never thought we would be so excited to say that Zach is back in the hospital, but we are. Zach went in for lab work on Monday July 5 and his counts were finally up enough to be admitted back in to start round two. We had a wonderful break at home, and much longer than we ever expected, but we are anxious to continue Zach's treatment but this all behind us!! We went straight from the clinic to our hospital room (room 4417 this time). We checked in around noon and they started his second round of chemo around 2:00 pm. The second round of chemno is for eight days and then a recovery period. If it goes anything like the first we should be here for 3 - 4 weeks. So far so good! I PRAY THAT THE SECOND ROUND TAKES CARE OF 100F THE LEUKEMIA AND THAT ZACH IS AS COMFORTABLE AS POSSIBLE DURING THE TREATMENT AND THE RECOVERY!

I hope everyone had a great 4th of July weekend! We sure did. We got to go to the fireworks and then let a few off as well. I was a nervous wreck watching Zach light fireworks, but Dad was in charge!!! Thank goodness no injuries!

We got to go to a couple of Royal's baseball games while we were home. We went last Thursday for the fireworks and got to sit in crown seating - right behind homeplate and next to the dugout. Someone from the Royal's staff came over and gave Zach a ball signed by Curt Shilling (Red Sox pitcher). I guess it was a big deal but Zach would have been happy with all the Royals players signatures. THANKS KENNY (LAFARGE) FOR THE TICKETS!!!

Zach's Joke(s) of the day:
What do you call a hippie's wife. Mississippi.
What's the difference between roast beef and pea soup. Anyone can roast beef.
Did you hear about the new pirate movie. It rated Arghhhhhhh.

Time to sign off. Thanks as always to all our friends and family for their support and prayers!

The LORD is near to all who call upon Him, to all who call upon Him in truth. Psalm 145:18

Monday, June 28, 2004 9:11 PM CDT

Tyson - Happy belated 30th Birthday!!!!! Ahhhhh....to be 30 again! Enjoy - I loved my 30's!!!!!!

Thank you Leesa for your basket packed full of goodies and your wonderful letter. I am so behind on thank you letters!

Thanks to the Knox families for meals provided this last week!

Thanks to the Nancy Butler (Jack's grandma!) for the homemade applesauce!

We are still home!

I lied! I thought we were going back in the hospital last Thursday (June 24), but they sent us home again. Zach's counts had actually dropped. We were scheduled to go in today if Zach's counts were up but they hadn't really changed since last Thursday. Now they tell us to plan on coming back next Tuesday, July 6. I guess I won't tell anyone we are going back to the hospital on any certain day, I will just let everyone know when we actually get admitted. The doctors say it is not unusual for the counts to take a long time to go back up - we just didn't think it would take this long. They won't start the second round of chemo until his counts are at a certain level. The good news is that Zach is feeling really good and eating good and is excited since he will be home for the 4th of July! Zach is costing me a fortune - he has requested steak every night for the last five nights! He even has it for lunch!

I have mixed emotions - first we were in the hospital waiting to go home and now we are home waiting to go back into the hospital. We need to enjoy this time at home, but at the same time I am anxious to get back in and continue with the chemo treatments to take care of the leukemia entirely.

This is a credit to the staff at Children's Mercy - When we go to clinic to have lab work done, I have a hard time getting Zach to leave. Everyone there is so nice and they always have some kind of activity going on and they really cater to the kids. I practically have drag him away. He always asks me why I am in such a hurry to leave, can't we just stay for a little while longer.

Zach's joke of the day: Why did the stoplight turn red?
Wouldn't you if you had to change in the middle of the street!

Zach's comment of the day: Yippeee!!!! I get to be home for the 4th of July!!!!

Thank you all for your continued support and prayers!

Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them. Mark 11:24

Wednesday, June 23, 2004 12:08 AM CDT

Sorry Aunt Sue - Can't believe I talked to you this morning and completely forgot it was your birthday!!! Happy Birthday - To make of for things I will not say what birthday you are celebrating!!!!

Zach's comment of the day: Bummer! I have to go back to the hospital tomorrow! Thanks to all the kids and Mom's at Knox Church who had a hand in making the great quilt! I love it!!!! Lisa and Kelsey Campbell surprised us with it yesterday. What a cool idea who ever thought of it and what a great job you did making it!!!

Zach's joke of the day: I loved your joke Camille Larson - look for it in the guest comments! Today is more of a riddle - A man is locked in a room with no way to get out. In the room there is a piano, a saw, a table, and a baseball bat. How could he get out?

He could take a key from he piano and unlock the door.

He could take the bat and get three strikes. Then he'd be out.

He could take the saw and cut the table in two. Then by putting the two halves together, he would have a "hole" and he could get out.

Mom & Dad's comments: We have really loved being home with Zach! They extended our stay a few days waiting for Zach's count to go up a little more. We got the results of the bone marrow test back on Monday and things look positive as far as the chemo treatment. The tests still show a small percent of leukemia cells but less than 5%. We are planning on going back to the hospital tomorrow to begin the second round of chemo (Thursday, June 24).

Pray that the second round takes care of the rest of the leukemia cells and that the next test results come back with 0% leukemia cells.

We have stayed close to home since Zach's count were still down last week. We had a neighborhood BBQ on Sunday (Father's day) and it was great to see everyone in our cul-de-sac! Bill, Zach, Nathan and my Dad went golfing later in the evening - Zach got to drive the cart!

We still weren't able to go to a movie theater so Bill had a brilliant idea to go to a drive-in over the weekend. The kids thought it was great since they had never been to a drive-in and Zach was happy because he finally got to see Shrek 2! We also got to see Harry Potter 3 since it was a double feature!

We ventured out in public last night and went bowling - Zach brought his good friend, Ryan. Zach can never pass up the "claw" machine so they had to dropp a few dollars in and they ended up winning 4 times - two different spiderman dolls, a spiderman frisbee and football set and a baby doll. Guess we will have to find someone to give the baby doll to!

Well - this has taken me longer to update that I thought - I have had a few interuptions. I need to get in a go to work a little bit this afternoon.

As always - Thank you to everyone who continues to support us with your thoughts and prayers and cards and gifts and many different forms of help!!!!! We love you all.

Jesus said, "Don't let your hearts be troubled. Trust in God, and Trust in Me." John 14:1

Thursday, June 17, 2004 8:07 AM CDT

Update from home! We got home last Friday night and here it is already Thursday! The time has flown by! We had a bit of a scare the first night home since Zach's temperature started going up - if it got too high we would have had to go back to the hospital. Zach's counts are still low so we have stayed close to home. We ventured out for mini-golf a few times since it is outdoors. Zach got two holes in one and also won a free game at Smiley's. He was so excited!

Home is GREAT! I must have scared off visitors - it has been pretty quiet here!

It is amazing how fast the time has flown by! Bill's sister, Deb from Cedar Rapids Iowa, and her husband, Jeff and their son, Devon visited over the weekend. It was great to see them and we had a really nice visit. We went back to clinic on Monday to get labs and then again on Wednesday for Zach's bone marrow test. WE PRAY THAT THE TEST SHOWS THAT THE CHEMO IS WORKING AND THAT THERE ARE NO LEUKEMIA CELLS PRESENT! We go back to clinic on Friday for more labs and should know the results then. Right now we are scheduled to be admitted back to Children's Mercy next Monday (June 21) to start the next round of chemo. It also depends somewhat on Zach's counts so that date may change.

We are still hoping to get to get a few movies in over the weekend if Zach's counts are up by this Friday when we go back to clinic. We are planning a neighborhood BBQ this weekend before we go back. Mom has enjoyed spending more time with Nathan and putzing around the flower gardens and playing with Sadie. We have had rain the last day or two so have been mostly indoors for a few days. We got some super soakers and water ballons to goof around with earlier in the week. There was a huge bolt of lightnening yesterday that we felt like hit our house. We found out later that it did hit the neighbor's tree. Oh well....I'm rambling and Zach is calling......he wants company while watching his movie.

We love you all and thank you for your continued prayers, meals, offers of support, cards, gifts, phonecalls, and visits!

Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus. 1 Thessalonians 5:16

Thursday, June 10, 2004 9:36 PM CDT

Great news - our prayers have been answered! Zach is going to go home tomorrow - Friday! His counts are still basically zero but he has been temperature free and feeling good so since we live so close they are going to let us go home to continue his recovery. We think we might be home for most of next week and will still make visits back to Children's Mercy twice a week for blood counts.

We will be staying close to home and not venturing out in public quite yet until his counts really start going up. I also want to limit his visits to still avoid any possible infections since he is still so vunerable, but just the prospect of leaving the hospital is so exciting to Zach. He is bouncing off the walls waiting for tomorrow afternoon to roll around. Mom is extremely nervous with this first visit back to the "real world" but all the nurses say it is typical and I will get use to it!

I posted a new picture of Zach and a few of his teachers - check it out!

Zach's comment of the day: Yippeeeeeeeeeeeeeeeee!!!!!!!!!! I can't wait to go home!!!!

Zach's joke of the day: A women pays five dollars to see a fortune teller. She walks into the tent and the fortune teller says she will answer two questions. The women says "Don't you think $5 is alot for just two questions." The fortune teller replies "Yes, and what is your second question?"

Mom & Dad comments: What a blessing! I wasn't sure Zach could take much more of this waiting and he needed a break so bad so it has happened just in time! He is of course excited and we are of course nervous and excited. Most of all I am just looking forward to hanging around the house being a family again with basically nothing to do - it is summer after all!!! He really can't be out in public or large groups so we won't be going out to any movies or things like that quite yet, but hopefully before we have to go back in we can do a few things like that.

We had a great visit today from some of Zach's teachers at Katherine Carpenter Elementary - Mrs Halter, Bartelsmeyer, Stiglic and West. They brought so many neat things from school - a picture of all the kids and teachers at Carpenter holding a sign that says "We miss you". They also brought a huge "school house" poster signed by everyone at Carpenter, and a special "star" trophy, along with cards from the 1st graders and some really cool books and a game. The teachers even got to be here when Zach got the great news about coming home - they heard it before Mom did! Thanks ladies and everyone else from Katherine Carpenter!!!!

We also got a framed picture from Zach's Aunt Sue in Pensacola, Florida and signed by all the great people she works with in the T-34C Program. Thanks!!!! We love the picture!!!!!

Thanks to everyone for their continued support and prayers! God is answering them!!!

Ask, and you will receive, that your joy may be full. John 16:24

Monday, June 7, 2004 2:39 PM CDT

Greetings everyone -

I put a link to the Church of the Resurrection - They are having a Bone Marrow Drive from June 7 - June 9. The times are listed on the link. Thanks Lynn for passing along the infomation. The more bone marrow donors there are in the world, the better chances for a match for someone, somewhere around the world! It just requires a simple blood test to put you in the bone marrow donor registry - if you haven't done it, please consider doing it sometime. You might be able to save a life!

Nathan - I read your message and was so excited to hear from you. I knew today you guys were going to the beach so I know you are having fun! I have been thinking about you everyday and can't wait to hear about your trip when you get home. Love you!

Thanks for your visit Shelley and Tyson!!!!

Devin Magee - Don't leave us hanging - We need the answer to your riddle - unless it is really obvious - In which case I will feel really silly asking.

Zach's comment of the day: zzzzzzzzzzzzzzzzzzzzzzzzz (He is sleeping right now!)

Zach's joke of the day:
Boy: Mom, do you remember that vase you were always worried I would break?
Mom: Yes, what about it?
Boy: Your worries are over.

Mom & Dad's comments: We had a good weekend and Zach is just chomping at the bit to go home!!! Counts have still been at zero, but today they have gone up just slightly. They could still go back down or stay the same or continue to go up - pray they go up!!!! We are dreaming of all the things we can do when we go home!

Zach had a "Boys Night In" this Saturday night. Kerri Meyer and Adrienne Owings "kidsat" while Bill and I went out to dinner with my sister Shelley and Tyson (visiting from Atlanta). We had a nice time out and the hospital survived as well!

We are just so thankful that Zach is feeling good and ready to go home. As always we want to thank our many friends and family for their continued support. Keep us in your prayers that Zach's counts will go up and that he will be able to go home soon for a few days (we will take as many as they will give us!) Mostly, please also pray that this first round of chemo was successful in wiping out most, if not all, of the leukemia cells. We will not know how effective it was until they do another bone marrow test, which will be in the next couple of weeks.

Cast your burden on the LORD, and He shall sustain you. Psalm 55:22

Saturday, June 5, 2004 12:31 AM CDT

Thanks for all the messages and jokes. We read them all!

Zach is very popular person - He has received greetings from Kathleen Sebelius, Governor of Kansas and also received a Proclamation from Ed Eilert, Mayor of Overland Park. I am trying to find a way to put a copy of the Proclamation out on the website but I haven't figured out how to do it yet! It pays to have friends in high places - Thanks go out to Overland Park City Councilman Neil Sader and his family for instigating things!

Big Brother Nathan is headed for Texas on the Knox Church Jr & Sr Choir trip. I know they will have an awesome time and we will miss him. Can't wait to hear all about it when he gets back.

Zach's comment of the day: (This is for Aunt Deb) You asked Zach what he wanted you to bring from Iowa - he said Alex and Devon!!!! See you next weekend!

Zach's joke of the day: Jim had been given a lift home from school by his next door neighbor. "Did you thank Mr. Smith?" his Mom asked. Jim would not answer, and his Mother repeated the question. "Did you thank Mr. Smith." she said "Come on, answer me.". Very reluntantly, Jim spoke at last. "Yes, I did thank him, Mom, but he told me not to mention it."

Mom & Dad's comments of the day: Zach has had a really good week as far as feeling good and not have any temperatures and eating and drinking good. In fact he is getting cabin fever!!!! Jack and Ben Meyer were up yesterday and they were roaming the halls getting into whatever trouble they could find! They better send him home soon or it could get dangerous around here.

At this point we are waiting for Zach's "counts" to start going back up. Right now they are still basically at zero which means he doesn't have any infection fighting ability. We are hoping that within the next week we will start to see them go up. At that point he will get to go home for a few days.

Aunt Shelley (Sara's sister) and Tyson are up from Atlanta for the weekend so we are enjoying our visit with them. Bill's sister and husband, Deb and Jeff Sindelar and their sons Alex and Devon are planning a visit next weekend. We can't wait to see them also!

Thanks as always for the continued support, cards, visits, phonecalls and daily prayers from everyone!

God is our refuge and strength, an ever present help in trouble. Psalm 46:1

Tuesday, June 1, 2004 11:15 AM CDT

Zach's comment of the day: I wish I could have been there today for the last day of school! I can't wait to go home! Will somebody please get me a yearbook!!

(Actually I think one of our "Angel's of Mercy" - Kerri Meyer has his yearbook and will bring it up)

Zach's joke of the day:
Teacher: What is the formula for water?
Student: H-I-J-K-L-M-N-O
Teacher: Why would you give a silly answer like that?
Student: You said it was H to O!

Mom & Dad's comments: As much time as we spend in this room you would think we could update this more often! Hospital time is kind of strange - the day actually passes rather quickly between visitors and the nurses and various hospital staff and volunteers peeking in throughout the day. I alway plan on getting certain things done (writing thank-you letters, paying bills, etc.) and usually don't accomplish any of them.

Today is actually a really good day for Zach. I went and got biscuits and gravy from a nearby McDonalds for Zach this morning and he actually ate it all. He doesn't seem to like the hospital food although it is not really that bad. I know he is feeling better because he is getting a little orniary (sp?).

For Memorial Day Bill grilled steak and made baked potatoes and brought it up for our dinner. Zach was really looking forward to that and did a good job eating. He hadn't eaten anything all day so was not sure if he would feel up to eating steak & potatoes but he did! I am hoping the worst of the chemo effects are over for this round and he will just start feeling better and better. We don't know at this point when (or if) he will get to go home for a few days, but we pray it will be soon - he is really looking forward to it (I am a little scared, but looking forward to it also!).

We have had some chills and fever over the last few days, but we hope those are behind us. Zach has had high blood pressure on and off for the last couple of weeks so the doctors are looking into that. They are going to do some tests tommorrow looking at his kidney functions to make sure everything looks OK there.

Bill and I went to church this Sunday since it was Pastor Tim Waggoneer's last sermon before his 3 month sabbatical. Also, more than anything, I wanted to personally thank as many people as I could at Knox church for all they have done for us with with their prayers, cards and help! We are so blessed to have our family at Knox!

Troop 256 - Thank you for the poster! We have it hanging up and get to look at all your mug shots when we need a laugh! We also received the card and donations you collected and we don't know how to thank you for your generosity - What a tremendous family you have been!

Thanks Contreras's for the camp box, photo album, magic cards (Zach is getting a kick out of those!)and more. Sorry we didn't get to see you Chris! Dan and Marcia - the prayer ribbons are AWESOME! I decided I would mail some to Bill's family in Cedar Rapids so they could distribute also.

Katherine Carpenter - Thanks to all the students, teachers, parent and the most awesome lunch lady in the world for your cards, and messages, and meals, and visits. You all have a great summer!!!! We will see you in the fall for sure!!!!

Neighbors on 104th street - We love you! You guys are awesome! It was great to see you Saturday at Alex's graduation party.

Various friends - Thank you some much for all the different cards and messages you have sent! We are so lucky to have some many friends. The word keeps spreading and we hear from more and more people and we do appreciate your thoughts and prayers.

I feel really bad that I can't get back with each of you right now, but we will!

The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing. Zephaniah 3:17

Friday, May 28, 2004 5:43 PM CDT

I don't have an update - Just wanted to say that I put some pictures out there from Thursday night - Rebecca Corbin was on standby to cut Zach's hair when the time was right - and last night was the night. We had a lot of support from brother Nathan and Dad and even one of our visitors - Art Hicks - Take a look!

Zach is feeling pretty good today - still a little tired and sleeping some throughout the day - but mostly feeling good and working on getting back to drinking fluids and hopefully eating soon as well.

Keep those prayers coming - Love, the Marions

Thursday, May 27, 2004 3:34 PM CDT

Zach's message of the day - I had my Hickman put in today. I was very worried but when they gave me my sleeping medicine how ever long it took seemed like 2 minutes and it was all over. P.S. My Hickman is just like a PICC line but closer to the actual site so it is in my chest instead of my arm.

Zach's joke of the day - This is a long one - An elderly woman is riding in an elevator in a luxurious hotel when a young, beautiful woman gets in, smelling of expensive perfume. She turns to the old woman and says, snootily, "It's called Romance, and it cost $50 a bottle." Then another young and beautiful woman smelling of perfume gets in and says, also very snootily, "Eternal, $100 a bottle." Around three floors later the elderly woman has reached her destination and is about to leave the elevator. She turns around, looks right into the eyes of both young women, farts loudly, and says, "Broccoli - 49 cents a pound!".

Mom & Dad's comments - I haven't updated this since Monday I believe - We got the results back from Nathan's blood test and found out he is not a match for the bone marrow transplant (with only one sibling the odds were against it anyway). We at least know now what the scheduled treatment will be for Zach if all goes well with the chemo. He will have 5 rounds of chemo, each round will be approximately one month long including the actual chemo treatment and the recovery period afterwards. Most of the time will be spent in the hospital since the recovery time will also be done in the hospital. Hopefully, between each round, he will be able to come home for a few days to give him a break from the hospital before the next round. There are some things that could change the protocol if he doesn't respond to the chemo, but we are praying for the best and know that after the last chemo that he will be in remission and cured of the leukemia.

Zach is feeling better today and was soooooo relieved when the Hickman (check IV tube) was done. He was really worried in advance so it was a load off his mind when it was over. He was a kinda funny as the sedation wore off and of course he was very relaxed so the smiles came easier. Every day is different, but I think today was a milestone because he was really brave while he was getting ready for the Hickman and he was really proud of himself. He has been a little down and I know he has been feeling defeated so this was a nice boost. When the mail came today he had a great big smile on his face so the cards help! We are hoping the mouth and throat sores heal quickly and Zach recoveries quickly so he will be able to come home for a few days. Although the thought of him coming home is also a little scary, since we will have to do certain things while at home (flush his lines, change the dressing on his Hickman, watch for temperature spikes, etc.) But we will all be ready for a break from the hospital by then and Zach deserves to be a kid again for a while!!! Not only that - we want to see Shrek 2!

We noticed a lot of hair falling out yesterday, so we scheduled a haircut for Zach for Friday with Rebecca (our dear friend and neighbor who cuts hair). We are going to get rid of it all - Zach is ready for it! In support, Nathan (big brother - age 13) was going to get his head shaved as well. Instead, they decided to do it in stages so last night he went with a tomahawk. He came up to visit Zach and what a surprise and smile it brought. The nurses loved it more than anybody. Nathan wore the mohawk to school today (I expected a phonecall any minute to tell me to pick my son up!) We will try and post some pictures for proof! We seem to have a mohawk theme going - Chris and James Contreras (some dear friends also) have gone the mohawk route also! Thanks guys - we love you - We'll try and post your picture also!

As always - Thank you to EVERYONE for keeping us in your prayers and thoughts and helping us out daily with all kinds of things. Bill and Nathan have really appreciated the meals that have been brought over. Lori Unthank at Knox Presbyterian (888-7775) has been coordinating things for those who have offered help (along with the help of Kerri Meyer and Karen Haffey and Rebecca Corbin).

If GOD brings you to it, HE will bring you through it.

Monday, May 24, 2004 6:26 PM CDT

We love reading all the messages! They really brighten our day.

Zach's comment of the day: No comment (I guess he is being the strong silent type) Wait, he said he had a comment afterall - "I like reading all your messages. I don't know how I could thank each and everyone of you so I guess this will have to do."

Zach's joke of the day: (Apologies upfront to any blondes reading this!) Why did the blonde nurse bring a red magic marker with her to work. In case she needed to draw blood.
(Thanks for the Bond family for that joke)

Mom & Dad's comments: We are relieved that the 1st round of chemo is over and pray that the recovery period will be comfortable and speedy. We are probably looking at 2 - 3 weeks at least for the recovery period (waiting for the blood counts to return to an acceptable level).

Zach has not really been feeling that good for the last day or two. He has some mouth and throat sores that are making it hurt to eat and drink. He actually has his appetite back, but just not really able to eat yet. The nurses do have things they can give him to make him more comfortable and they seem to be working although he is still not eating (nurses say that is OK at this stage with the sores). We pray the sores heal quickly and he will be feeling better soon.

We will let everyone know when he is really feeling good and up for visitors - hopefully soon!

I don't think I will every be able to close this journal without saying thank you to everyone for your prayers, concern, support, kind words and good deeds. It means so much to us everyday!

Faith makes thing possible....not easy.

Love, The Marions

Saturday, May 22, 2004 1:19 PM CDT

WOW!!!!! We just read all the e-mails! What an incredible response we got! I read them all to Zach and he had the biggest smile on his face to know there are that many people out there thinking about him!! I thought we would be able to answer all of them but now I am not so sure. Unfortunately you cannot just click to send a reply - so just know how much we enjoyed reading all of them.

Also, another thank-you to everyone for all you have done and all your prayers - I haven't been able to thank most of you personally which is hard because that is what I want to do!

Zach's joke of the day - Question: If a head of cabbage, a tomato, and a faucet ran a race, who would win?
Answer: The cabbage would be a head, the tomato would ketchup, and the faucet would still be running. :-)

Zach's comments - No comment (the fans will just have to wait I guess!)

Mom & Dad's comments - Friday was a quiet day and Zach sleep most of it away. The good news was that his Picc line was looking better and they decided for now at least that it was OK and they would not have to switch it out. We thought we had a record for the longest bloody nose from last Sunday, but Friday night we broke the record - He had a bloody nose on and off for almost 4 hours. His platelet counts are way down (which is to be expected at this point in his chemo treatment) so they said this may happen. He got two units of platelets Friday evening and we finally got it under control. He was really worn out after that! Today Zach is feeling pretty good. We need to get up and walk around a bit and bother some of those nurses!!! Some friends gave Zach a "Horrible Practical Jokes" kit so when he is feeling better (and a little devilish) he may have to try some out on the nurses. We are hanging in there and are thankful that Sunday is the last day for the 1st round of chemo. We are praying that the drugs have taken care of most of the leukemia cells and that he has a good recovery period and can come home for a few days. No news yet on whether Nathan is a match for a bone marrow transplant yet, but we should know soon.

As always, keep us in your prayers -

I can do all things through Him who gives me strength.
Philippians 4:13

Thursday, May 20, 2004 12:11 AM CDT

I have tried this twice and lost my message so I am hoping that I do it right this time!! I'm getting really tired of typing!

Zach's joke of the day - A man takes his Rottweiler to the vet and says, "My dog's cross-eyed, is there anything you can do for him?" The vet picks up the dog and examines his eyes, then checks his teeth. Finally, the vet says "I'm going to have to put him down." "What? Because he's cross-eyed?". "No, because he's really heavy". (Ha Ha)

Message from Zach - I miss school and all my friends! Thanks for all the cards and letters!

Message from Mom - That's a switch! He misses school! It is hard to believe we have been here in the hospital for 8 days already. Zach is on day 7 of the first 10 day round of chemotherapy. He is getting daily chemo every 12 hours. He will stay in the hospital for another 10 - 15 days after the end of the 1st chemo treatment for a recovery period. He may get to go home for a few days after that before they start the second round of chemo, but we will not know for a while if that is the case. It will depend on how well Zach responds to the chemo and what his blood counts look like afterwards. Keep us in your prayers that he will get to go home for a few days!

Zach has had some good days and some not so good days, but for the most part is doing really well so far. He has been overrun by cards and gifts and visitors. I know there are many prayers being said daily and we have had overwhelming support and offers of help. We can not begin to thank everyone - I had planned on getting little notes of thank you out, but I don't think I have that much time since there are so many people to thank!!! Please know how much we appreciate everything you are doing for us.

Today the doctors are watching the Pic line that was put in his arm to give the medicines. It has been a little red and if it does not look better by tomorrow then they will take that one out and put in a new one in his other arm. Please pray that his arm heals and that they do not have to do this.

I hope to give you short daily updates on what is going on in Zach's treatment and how he is doing. We will try and include humorous things as well as that keeps us going!

Keep us in your daily prayers!

I sought the Lord, and he answered me; he delivered me from all my fears. Psalm 34

Wednesday, May 19, 2004 12:04 AM CDT

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