I believe, but help my unbelief-

For Max

Exodus 14:14

The Lord your God will fight for you; you need only to be still

The pendulum swings down just before it begins to pivot up. I am exhilarated to report that our movement this week has been a long and beautiful upswing. To recap in short....Max's last bone marrow biopsy left us feeling less optimistic about his response to chemo than we were initially hoping for. He still had 40% leukoblasts. In one short week of chemo his physician was expecting him to be 5% or less. We were quite surprised to hear that one week should knock out so much of such an aggressive disease. This basically let us know that Max was classified as what is referred to as a "slow responder". This assignment was undoubtedly going to send us in the direction of a much more barbaric chemo treatment plan. He is having these bone marrow aspirations done in the O.R. once a week. Cut to: Last Friday....We arrived for the 2nd of many of these biopsies with much anticipation of this week's result. Our entire course was resting on the outcome of this tissue sample. We knew going in that we would have to hold our collective breath for the duration of the weekend. Friday evening an unexpected (however welcomed) call came in from Dr. Neff. Max's biopsy showed NO leukemia. Huh? No leukemia in the bone marrow sample. NONE. A good day....a VERY good day! He is not considered in "remission" just yet due to the fact that Max is not making healthy cells on his own. Our hope is that on day 29 remission will be ours. This amazing report sadly, does not change the course. We still have 3 1/2 long years ahead of us.....but Max is responding to treatment....and we will absolutely hold faith that he is slated for a FULL recovery. The missing piece of the puzzle lies in my "unbelief". I cannot reconcile an overwhelming depression that set in the following day. For me...the celebration of this victory was short lived. What we see everyday vs. What is....well....I struggle. Max is thin as a rail. Max is in pain. Max is weak. Max is frustrated. Max is somewhat depressed. Max is looking less and less like Max and more and more like a kid with cancer. I have taken an a la carte approach with my emotions. I'll take a large portion of optimism with a side of caution. The fear of the falling pendulum has me doubting my faith....and that doubt makes me feel uncomfortable. The leukemia is dissipating....and so is Max's ability to fight any sort of infection or disease. His ANC was below 200 on friday...and his White Blood Cell count was .73. So now...we go to war with the flu....or a cold....or an infection in his port. We aren't in combat with these enemies....but we stand vigilant for an attack. We are still so far from being "out of the woods". Again...Lord, I believe, but help my unbelief. My conflict this week has been internalised emotion.

As for Max? His tussle has been with the forces of boredom, pain, and a drooping spirit. Kids are so accustomed to getting sick....and bouncing back almost immediately. He is grieving the loss of an active childhood. He can't go outside. He is unable to see friends. He has decided that he does not want to play games or read books because "those things aren't any fun when you don't feel good, mommy". He has handled everything in such an admirable manner. We are so incredibly proud of him, but he is beginning to toil with the fact that he is months and years away from being able to just be a kid. Nothing I can say to him allows him to feel okay with this long and drawn out prognosis. "I don't understand why people are "proud" of me....I did not CHOOSE to do this". Max is still 9 years old, but he's *kinda* not anymore. Its tough to find that middle road of language to use with him. Max is learning things about himself and his character that we all ventured to find in college. This is a huge right of passage for him...and its a path he did not choose. It's tough.

Max's Aunt Leslie ordered some reminder wrist bands. They are blue and say "FOR MAX Exodus 14:14 The Lord your God will fight for you; you need only to be still." We are all going to wear these wrist bands until the day they say he is cured. He is really excited about the idea of people wearing these and thinking of him while they are away. Thanks for doing this, Leslie. I never would have thought to do it....and it already means so much to Max. I cannot think a more appropriate passage for him.

So now...we go back in for more freakin chemo tomorrow. Just when he starts to feel better from the last round...we shovel more into his body. Bless the day he completes this therapy. It's been so great to hear from everyone. I apologize if I have not responded to some of your emails and phone calls. We are moving a million miles per second right now. Soon enough we will all be able to come up for air. Thanks a billion times over for spreading the word about Max and for praying relentlessly, tirelessly, resolutely for his recovery. You prayed. God answered.

Much Love

-Christian