~Remission Accomplished~

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

http://www.dellchildrens.net/

(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 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

Lights, Camera, Fraction

Lights, Camera, Fraction

The last few days have left me with some very mixed emotions. ½ of the week has been the best we have seen from Max so far…..and ½ was the most heartbreaking we have seen from Max so far. On Tuesday some folks from the Dell Children’s Marketing Department came by for a visit. This hospital had been voted “greenest” hospital in the country. They have gone on to win the platinum award for greenest hospital in the world. Because of this they are launching a new campaign and were in search of a child to be the new face of the hospital. Max’s nurses have been so impressed with his attitude and have been infinitely entertained by his sassy and outgoing personality. They told the Marketing team about Max. After searching and meeting many kids here….they chose Max to be the poster child! The ad will consist of Max hugging a Dell doctor with a saying that reads something along the lines of “we don’t just hug trees…we hug our patients, too.“ On Wednesday they had a photo shoot with Max and a Dell Physician. We had no idea (nor did they for that matter) that the doctor they chose for the photo shoot was the E.R. doctor that ran these tests and essentially saved Max’s life. The whole experience really lifted Max’s bruised little spirit. He was hysterical in hair and makeup and on set as well. What a little character! He was in such a wonderful mood…..and then…..
Wednesday Max was scheduled to receive his first injection of PEG asparaginase. One only needs to google this drug to understand the reservations I have about it. Obviously it was not an option…but the side effects are more than unpleasant. “Convulsions“. “Coma“. These are words that are extremely difficult for a parent to read. We are in effect poisoning Max….and it’s both rough and necessary. Max received a double injection into both thighs that afternoon….Max’s mommy(clearly) had to leave the room for this. He seemed to initially receive and respond to the drug quite well. We were told that he might not be able to walk for a bit after this….and right away Max wanted to have lunch out of the room….and he wanted to WALK to the cafeteria. We were all (as usual) so impressed with him. What a trooper! Around 11pm Max and I were winding down a very heated session of little big planet on the PS3 when Max went into #10 pain mode. It just sort of came out of nowhere. I had just been mentally celebrating a victorious day when max started to scream. His bones were all in a tremendous amount of pain. Between the Vincristine and the PEG…..Max’s bones had been taken to the brink. He was put on a morphine pump. If you can believe this….my 48 lb 9 year old can have morphine every10 minutes. Whoa! The pain was persistent throughout the night. We woke up every 20 minutes or so and pushed the morphine button and went to the bathroom. Somewhere around 3a.m. Max’s bones were in so much pain that during the 10 step walk to the bathroom he collapsed. It was awful. He kept calling his body a piece of junk . Not fun….at all. By 6a.m. his entire body was in tremors from the pain. He was so desperate for relief. He started to literally cry out for “mercy”…I held him and rocked him and he looked into my eyes with the most helpless and anxiety laced look and just started to say over and over again “Help me. …Please help me…..mommy help me….I don’t want leukemia…..I don’t want leukemia….help me mommy….make it go away….it hurts….I cant do this….help me….” It was by far the most difficult moment I have shared with Max his entire life. There was literally nothing I could do or say to give him peace and relief. The helplessness is just so overwhelming at times.
He slept most of the morning the next day and by that afternoon, Max was bursting with energy and personality. “Well, Mommy….I made it. It‘s a new day.” He experienced the most painful night of his entire life and still…he was just completely able to let go and leave the past in the past. Wow! Yet another blackboard moment with Max. He is sincerely teaching me something everyday. His lessons have always been there….I just wasn’t paying attention, I guess. Oh those moments we take for granted.
The Child life specialists set up a room the following day for Max’s head shaving party. He was super into it….until it came time to buzz him down a bit. In the end we left about an inch of hair. We will buzz it down a little more in a few days. His hair is due to start falling out any day now….and we just don’t want it to feel scary or dramatic for him.
We were able to enjoy 3 consecutive good days last week. We went outside for his first breath of fresh air in 10 days. He lifted his head and shut his eyes and just said “Mmmmmm Air”. He sat there and bathed in that breeze nearly 5 minutes. Quiet and thoughtful….Max just took it all in. He looked up and asked “ Do people die from leukemia, mommy?……Do you think I’m gonna die?”
That entire conversation is one that even now….I’m not sure I can share. Again….how does one prepare for this?
Saturday morning Max returned to his home away from his temporary home…the O.R. He had another chemo spine injection and a bone marrow biopsy. Again….Max is not even phased by all of the things he is living through right now. He has become particularly attached to this little Peruvian hat that Bobby brought back from Mexico. He sleeps in it….and even wore it into the O.R. He is such a funny little man. He was able to go home around 6 that evening. Max enjoyed a peaceful 1st night with Jeff and Brandi. The next day Max and I had an uneventful day laying around in bed and cracking each other up. His color was beginning to wash away and he has certainly lost a great deal of physical strength….but no pain. He saw a commercial for outback steakhouse and had his first (of many we are told) chemo induced craving. I thought max was going to tunnel through the walls in search of a steak. It was hysterical. He actually asked if he could just look at a picture of a cow. Even Christian the vegetarian was terribly amused by this.
On Tuesday morning we arrived at our clinic appointment to hear the results of the bone marrow biopsy and for Max to be assessed by Dr. Neff. He was in really poor condition that day. I have never seen such a shade of grey on another human before. Max had an intense nose bleed that lasted about 20 minutes and lacked strength to move or even talk. His blood counts were extremely low. So…..we infused….again. He seemed to get better before the blood transfusion was even complete…..but still….Max’s little body is being pushed to the absolute limit right now. We spent 8 hours at clinic that day. I had to excuse myself a number of times to just let go and cry….and on occasion …..I even found myself sick. Oh boy….what a day! We were less than impressed by max’s biopsy result. When he arrived at dell on the 31st his leukocyte count was nearly 100%. Dr. Neff was hoping to see Max somewhere around 5% after the first week of chemo. Unfortunately he is still sitting around 40%. Apparently, the last 5% is the toughest to annihilate. Dis-Ap-pointed…..I felt really depressed for the rest of the day/evening. I am trying to teach myself to not believe in what I see. Just because Max has a bad day and looks to be hanging on by a thread….does not mean that this is indicative of his overall outcome. Don’t put your faith in what you see, Christian…..it has become my new mantra.
So today….Max’s counts are ridiculously low. He is so susceptible to anything and everything. Wouldn’t you know that yesterday I woke up with a bit of a cold and by yesterday afternoon my throat was sore and swollen. I was unable to see Max yesterday…..and I just hate that! I will do whatever it takes to keep him from further illness….even if it means keeping myself at an uncomfortable distance…..but it is difficult be away. In the end all any one of us has is right now. Message….Received.
Thank you so much for all of the phone calls and emails and sweet offers. For the food. And for the toys. And for the support of exponential proportions. This is simply not something that we could do alone. In many ways we are having to rely on the prayers of others to carry us through when we can’t find the strength to do it ourselves. So from the bottom of my heart….thank you. Here are some photos from our year long week. Max wants to post some things on here himself soon. I am really going to try to update this every 2 or 3 days….to save you the trouble of reading a novel every time. Talk Soon-
Much Love-
-Christian

Max and The Leukemia Inquisition

Dec 31. 2008
It's a beautiful day in San Miguel De Allende Mexico. The sun is shining. Hyper people are milling about the amazing house. Coffee is brewing....and then....through the windows of technology...an email arrives.
"Everyone is OK, but you need to call home right away"
Call it Mother's intuition but, something inside of me knew before I ever even called home that life was about to change in a very big way.
Little Max has been experiencing back pain for 6 or 7 weeks now. For whatever reason every doctor that has seen him has had an aversion to giving him an M.R.I. Thank God for his father's insistence. On this night in the E.R......Jeff just would not take no for an answer. The M.R.I. revealed a mass to the right of his spine. I have no words to describe what it feels like to be so estranged and alienated from your child in an emergency. After hours of impossible travel options....I found a ride home and arrived in austin at 4 something in the morning.
I rushed up to the hospital in time to climb into Max's bed and hold him for a bit before he went to the O.R. for a Bone and Bone Marrow Biopsy. He handled the anesthesia with flying colors. Later that afternoon Dr. Shaefer pulled us into a tiny room that seemed to grow smaller by the second. "Max has Leukemia". You could have blown me over with a feather. Nothing I have experienced in my life compares to the emotional railing of that moment. Hands are numb. Heart is pounding. Body is shaking. Breath is short. Tears are filling the entire room. I find the words "So....do we start treating this now? Or-" The Doctor simply says " We treat this now....or Max will die within 2 months". I may have actually fallen out of my chair. Looking across the table into the only other eyes in the world who can truly understand the gravity of this... I searched for some kind of reassurance, but in that moment, I only saw what it physically looks like when a heart breaks. Jeff, too, had been crushed. We are still educating ourselves and Max on Acute Lymphoblastic Leukemia. There is alot of information to take in. Max has been handling all of the news with such a brave heart. In a matter of seconds his entire childhood got rewritten....and the only thing upsetting him is the boredom and and homesick feeling of being marooned in the hospital. Bless his sweet little heart.
Max spiked a fever about an hour later and was put on I.V. antibiotics. He was given platelets and then morphine for pain . Max had his first blood transfusion the next morning and was promptly whisked away to the O.R. They placed a central line in his chest and gave him his first Intrathecal injection of chemo therapy. He received his second transfusion later that afternoon. Through all of this Max did not scream, or cry, or even get scared. He had a bloody nose later that day and when the nurse came in to help him....he pointed his tiny little finger at her and simply said "YOU gave me too much blood today". It was hysterical. He has got the brightest sense of humor in the darkest of places. It's just beautiful and amazing to me. Something tells me that I will be taking notes and learning life lessons from Max a little bit everyday. At this point Max has started 4 of the 5 chemo drugs for the induction phase of therapy. (Day 1-29) Our day one was on Saturday January 3rd. Max will have his PEG injection on wednesday (day5) and will undergo another bone marrow aspiration and chemo spine injection on sunday (day 8). We have been told that his treatment will last 3 1/2 years. I don't really know what to say. It is heart crushing to watch your child live through something like this. You never dream as a parent that you will one day explain cancer or its unruly side effects....so there is really no preparation for something like this. Everything is just moving so fast and I feel like I could just use a couple of minutes with the pause button to wrap my mind around this. All of the calls and emails have been just wonderful. What a blessing to have such amazing family and friends. These are the times that call for that kind of love and I feel so grateful.
We have had a couple good days and a couple of bad days and I know that this up and down motion will be perpetual. Today I am sad. My heart hurts. And Max hurts. And nothing but time will fix what has been broken. I'm slowly learning to lay it down and place Max into much bigger and safer hands. I will update soon. This first entry is *kind of* an incoherent mess. Finding time and healthy emotional space to document has been difficult. Thanks for the prayers....please keep them coming.