Addison Update

Addison

The following is an update written by Addison's mom. Several of you have asked about him in e-mails and this is such a good narrative of what they have dealt with and what they are facing I wanted to share it.

Its been a hellacious road, one I would never wish on my worst enemy but one we have no choice but to travel. Addison is doing GREAT in this session of chemo. His treatment will be in 5 sections, the first one being the most awful and personality changing. The first section, called Induction, is where they blast his body full of chemo to get rid of the cancer which was 98% of his bone marrow at diagnosis. The next 2 sections are a little easier as he is off the steroid (this made him eat all the time and be very sad - when it got into his system, he hardly ever smiled and would close his eyes if he tried to speak with you as if he wanted to shut out the world). The chemo made him tired and he was only awake to eat and then would sleep most of the day. He got so puffy and gained 10 pounds, it was like living with a stranger. 

Now, he is in phase 2 and back to himself. Its magical. The "visible" leukemia is gone (this happens in 95 %of the cases of this type) but now it will take 35 more months of chemo to make sure it stays in remission. He has no hair but he is so funny and full of energy. His immune system is temporarily up enough for him to have healthy visitors. Phase 3 will be very similar so that will be nice as well. I do use the term "nice" lightly though. Every week in phase 2 & 3 (each a month), we have to go in to the Children's Hospital  (about 45 mins away ) where they put Addison under to administer chemo in his spine and do a spinal tap. He also gets a blood count (scary for me to wait for these results each week as they tell what his immune system is doing as well as his need for transfusion or platlets) and chemo in his permanent IV port in his chest. He has an oral chemo nightly.
They have prepped me that phase 4 is similar to phase 1 in its intensity. It is the final huge push to keep the leukemia from relapsing. Its 8 weeks long - the first half being nausea filled days and the second half with his counts dangerously low. All throughout, fever is our worst enemy. If he reaches 101 he must go to the hospital immediately. If his immune system is low, he will be admitted. He has had a few days where he reached 100.9, its terrifying to say the least. But, so far, aside from the first week, we have avoided the ER and hospital stays, YEAH! In phase 4 he will have steroids again for 7 days at a time and then off for 7, etc so the effects won't be so severe. Chemo in IV 7 days at a time, chemo in shots in the legs, chemo in his spine as well as orally (the oral will remain part of his life for the next 35 months). 
BUT, then, if all goes well, he goes into phase 5: 2.5 years of oral chemo nightly and a spinal/iv chemo only 1 day a month! Barring any fever or strange occurrences, it should be much better. His immune system will drop periodically but it hopefully won't be as tough as the first 6 months.
Now that I am seeing Addison return, I have hope. I no longer feel like this is a death sentence, but rather a gift of life. We are feeling so much love and support, its incredible. Humbling. Addison told me the other day not to worry because he had really worked hard to kill the dragons in his body. I believe him. He told me he is magic and I am starting to believe it. ;) I have to.

Keep reminding us to live, laugh, and breathe!!!

 Addison with his mom, Sarah and his sister, Madelene
with a dragon cake made by a friend to help Addison fight his "dragons"

 Thanks Sarah for this update and thank you to all of you who have asked about and prayed for Addison and a special thank you to Jenny Matlock who is generously contributing a quilt to the fundraising efforts for Addison and his family