Good news on the docket today. The pretrial of Max's condition has lasted five long weeks. We've heard from the prosecution....and Max shot back with an incredible and unlikely defense. It's been grueling and exhausting at times. Friday: February 6th the jury came back with a pardon of sorts. Three tissue samples. Three independent tests. One conclusion. The leukemia is officially in remission. We desperately needed this reprieve. We abide in the fire and we burn and we burn for these moments when beauty is made from the ashes.
Its been a pretty amazing week all the way around. On January 30th (the friday before remission) Max was able to emancipate himself from all of his drugs. After 29 days of treatment he was granted one week of amnesty from his regimen. No meds. No dietary restrictions. No pain. No malaise. Nothing but Max being Max. It's been wonderful to have him back...even if only for a counted number of days. Man oh man have we missed him! We returned to clinic the following friday and learned of Max's triumph over this disreputable opponent we call leukemia. He was scheduled to begin phase two of treatment that day. We were to engage once again with vincristine...and also to introduce a couple of new drugs to his treatment. I'm always very nervous when we usher in new meds. So far Max has experienced somewhat manageable side effects. His body seems to be metabolizing these drugs pretty well. I can only (cautiously) surmise that he will continue to respond in kind to the arsenal of drugs we have yet to introduce to his body. I dare to dream that Max will not suffer anymore discomfort than what he is already accustomed to. The more important expectancy is that his body will continue to live in remission during the next 40 months of treatment....and for the rest of his life. I'm hanging on a line of hope that he will respond to every single drug the way he is intended to. That said...we were unable to begin phase two that friday. No chemo. No anesthesia. No spinal tap. No Spinal Infusion. No bone marrow aspiration. No nothing. Max's blood work did not indicate that he is strong enough for this treatment yet. His blood counts aren't any lower than they have been throughout the induction phase of therapy. I suppose they have a more stringent set of guidelines for his counts during this second phase. Dr. Neff suspected that Max's marrow would "explode" with new healthy cells over the course of this week.
Day after tomorrow (thursday) we will return to the clinic. We really do expect Max to be making healthy cells and for all of his counts to be high enough to support phase two. I've got to be honest here....it was more than a delight to have 6 more days with Max. Instead of 7 days off treatment....we were accidentally given 11 days. Its become too easy to begin to feel like everything is over and fine. Meanwhile...back on the reality ranch...Max has merely completed 1 of 41 months of therapy. Its time to get back to the grind. This short season of normalcy has caused me to feel lonesome and homesick for a time and a place and a life that no longer exists. I want to be able to remember what life felt like before all of this. I want to go back there for just one day and live in that day with a grateful heart for every single moment. I want to celebrate the simple pleasures of an uneventful day. I know that this treatment does have an expiration date...this too SHALL pass. I know this but something impatient is stirring inside of me. There is a need for instant gratification...a greed that longs for 2012. So today...we learn to wait. Today we learn how to coexist with anxiety. Today we learn how to silence the noise in our heads. And hopefully tomorrow we learn to find peace...and we learn to rest.
Max's Dell Children's Ad has been running in the Austin Chronicle and The Austin American Statesman. He will appear in the next issue of Texas monthly. Here are some photos of the shoot. Max and I get a kick out of visiting their website and seeing his cute little face on the homepage
(Side Note)
A sincere thank you to the Scardello clan...my Uncle Ben, Aunt Jackie, and two cousins Stef and Liz for making the jaunt into austin on saturday. Your visit here meant more to me than I think you realize. Liz...I have revisited our conversations and your wisdom a number of times since you left. I just love you guys so so much!
i love how Maxes face changes with each picture yet the doctor stays the same!
ReplyDeleteits great to hear this news. i believe thought that you were given those 11 days because you needed them. not as an accident.
Christian, I am so gloriously happy for you and your precious son...my mom "put Max's name in the temple", which basically means that everyone who has been visiting the mormon temple in Salt Lake City has been praying for him everyday. In case you haven't noticed, that's a lot of freakin mormons! I hope you guys can go do somethung fun together, and just relax...I love you and your family so much, and i would really like to meet Max someday...
ReplyDeleteI miss you. Max's photos are so sweet.
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