12/29/2004

Thank you everyone!

Dear Friends and Family,

It's been two months since we first admitted Max to Children's Hospital and found out what was ailing him. We've had friends and family, and friends we didn't know at all, deliver dinners, pick-up Hannah from school, pray for Max, donate blood... the list goes on and on.

We are reminded everyday of all the help we've received - and still receive - and we are so thankful. Thankful to know that we have a network of caring people surrounding us and supporting us. Everyday. Everyday I receive emails asking what we need done. Everyday we get a phone call asking how we need help. Everyday we receive cards telling us that prayers are bring said for Max. Everyday our life is made easier by caring people like you.

Everyday.

And everyday we are thankful for the outpouring of love and support that has encircled our family.

So, thank you. Thank you all. Thank you for thinking of us, thank you for praying for Max and his full recovery. Thank you.

The Mikulak Family

Andy, Melissa, Hannah & Max

12/19/2004

Chemo Round #3

Max just finished up his third chemo session. He was in the hospital 12/14 - 12/18. His protocol called for different (chemo) drugs this time around and he was much more nauseated. Had no appetite. Was tired. We spent most of the time in his room.

We did find a cool tricycle with an IV stand built onto it. Max's nurse moved his IV stuff to the "bike stand" and he pedaled all over the hospital on it. His favorite thing to do was to go to the cafeteria and carry the food on the bike back to his room.

Max is getting much more friendly with the nurses and doctors, too. He used to tell everyone who came into his room, "Don't talk to me." Now he puts up with just about everything along as the intruder is not blocking the TV, "You're in the way!" It's quite funny.

Max had a follow-up MRI while he was inpatient. The MRI showed that his tumor has actually shrunk by half! Great news! His doctor told us that if the tumor can be killed by the chemo he may not have to undergo surgery to have it removed. We'll know after the 5th cycle which way it'll go.

The previous week Max went in for his stemcell harvest. They were able to get twice as many stemcells as needed on the first day! The doctor and nurses could hardly believe it. They said that never happens! (How do you harvest stemcells? Well, in a nutshell: Max's blood was pumped out of him and into a machine that spun it around really fast separating all the different pieces based on weight, size, configuration, etc. The stemcells were then removed and his blood pumped back into him. Note: at no time was he bloodless. The process took about four hours, or two movies and ten story books.)

Andy and I were able to sit down with Max's doctor for almost an hour while he was in the hospital. We had a lot of questions and she had a lot of answers.

Most importantly, we learned that when Max receives his 7th chemo treatment (March) the doses will be very high to kill, once and for all, most remaining traces of cancer in his body, including all the good things that are in his blood and all his bone marrow. He'll be on blood products (thank you for your donations!) daily for 1-2-3 weeks depending on his blood counts. Three days after the chemo ends Max will have his stemcells reintroduced and they will (magically) rebuild his marrow, which will rebuild his blood. Max will be in an isolation period in the hospital for 14-21 days - again, pending his blood counts.

At his point Max will remain in a state of "isolation" for 60-100 days at home. No birthday parties, school, movie theaters, stuff like that. Max's doctor explained that following this big chemo and the stemcell introduction, Max's body will basically be like a newborn baby. Any immunities he may have had - including all the immunizations he received and all the dirt we let him suck off his pacifier for three years - are gone. He starts over.

Also following the last chemo and stemcell treatment Max will undergo several radiation treatments pinpointing any place in his body that shows traces of cancer (through bonescans, MRI, CTscans, etc.). The radiation will be like a very direct laser shot at each of these points.

So... I think you're up-to-date! Max and I will be in the hem/onc Clinic tomorrow. (hem/onc = hematology/oncology). As I've said before, Max goes to clinic twice a week to have his blood counts checked. It's been seven days since the start of his last chemo and he's probably going to need a blood transfusion (we've found our first pattern). He's been really tired and cranky today and getting pale, which means his red cells are low. Clinic days can be long, but we've got it pretty wired now. Bring lots of snacks and lots of activities, because even Maxi-boy gets tired of watching TV!

Merry Christmas & Happy New Year, too!
The Mikulak's