Sunday, October 4, 2009

Happy Birthday, My Beautiful Max!

On December 31st you may recall a tumor had been discovered to the right of Max's spine and I was marooned in Mexico. The only thing I wanted was the one thing I could not have...a conversation with Max. I closed myself off in a bedroom, sat down on the bed, and wrote the first of many letters to my little Maxamillion. The following day after endless hours of travel along the highways of Central Mexico...I wrote yet another letter to Max. That afternoon we learned that the source of his tumor was infact leukemia. I had so many things I wanted to say to Max that simply could not be said. That post-diagnosis letter was by far the most difficult one to write. I'm not sure why I continued to write these letters. Would I let him read them someday? I didn't know then and I'm unsure now. All I know is that I have written over 200 letters to Max and it has been a really theraputic and healthy way for me to purge really honest, raw thought and emotion from my system. These letters have always been very private. I have said some things to Max in these letters that I have never said aloud to another human...ever. Today is Max's Birthday. He's 10 years old today! Nine months ago there was a small part of me that was unsure if this day would be one that we would celebrate. Today my heart is overwhelmed with gratitude. I'm a lucky lucky woman. I've just finished writing Max's letter for October 4th. It feels inappropriate to say nothing here on such a significant day, but I'm drained of words so I'm going to let his letter stand in for today's blog entry. Happy Birthday, Max...You amaze me everyday!

My Darling Boy
You are 10 years old today. An entire decade has graced us with it's presence and disappeared like a plume of smoke in the amount of time you have been living and breathing on this planet we call home. Ten years ago I woke up at 5a.m. with great anticipation of this day and headed off to the hospital to usher a tiny little version of you into our world. I was (this will be no surprise to you) a complete train wreck. You would have cracked up at my absolute panic. I was so excited to meet you. You and I shared this private little relationship for 9 whole months. It was tough to tell where I ended and you began. You were with me every minute of every day and although I had never seen your face...I knew you. I knew when you had your "do not disturb" sign up. I knew when you were ready to greet the day. I knew when you were restless. I knew when you were at ease. I knew when you were feeling cramped up. And I knew on October 4th that it was time for you and I to start a new chapter and meet face to face. I was so nervous. My fear and anxiety of child birth paled in comparison to my fear and anxiety of who I would be as a YOUR your "Mommy". I was really only a kid, myself. What did I know? I was surprisingly brave and somewhat calm during your c-section...that is, until you emerged. You see, Max, you came into this world fighting and struggling to remain a part of it. The silence in that operating room was the most terrifying thing I had ever heard. "Come on, baby, cry" I thought. "You can do it, us what you've got..Breathe, baby boy". I looked across the room and saw your little breathless body and knew in that one horrifying moment that I had been hit in the soul with a whole new and different kind of love. You were strong, Max. Goliath strong. The NICU became your home for a while. You had been alive for nearly 9 hours before I FINALLY got to meet you. My precious Max, you were so beautiful. I lost my breath when I turned the corner and saw you hooked to that respirator. Your lungs could not figure out how to breathe on their own, but my goodness your will was strong. Your tiny little legs were kicking around in frustration. fearlessly, resolutely, stubbornly. You were GOING to make this happen. I thought to myself "My son has not been alive for a full day and already determination has befriended him, this boy is going to do big things in his life". Here we are ten years later. Max, you are the most incredible person I have ever met...and likely ever will. I have been proud of you and who you are since the day you were born. My spirit is absolutely paralyzed by your fortitude. I hope that one day I posses just a fraction of your strength and resilience. Your sense of humor is so smart, and absurd, and electric. Something fascinating stirs inside of me everytime I hear that guttural laugh of yours. Your heart is bigger than the tiny body that it resides within. It bleeds with care and concern for those around you. You must have been about 6 when you first cried over the small misfortune of another person. You have always been aware of what someone else needs or yearns for without them having to say a word to you and if you can do...always. It still gives me chills and blows me away to know that you tried to give your make-a-wish away to someone you thought needed it more than you. It takes a special heart to be so selfless and that selflessness is fundamental to who you are. You have no idea how rare that is in this world, Max. You are so delightfully easy to be around. Even as a baby, crying was not really your thing. Go with the flow...that's you. What a blessing it is just to be near you. I was uneasy ten years ago when I welcomed you into to existence. Of course, I knew that you would experience joy and love and excitement and so many other wonderful things that this world has to offer with it's sturdy right hand. My greatest reluctance in releasing you to the world was the disturbance of knowing that you would have to endure much of the yuckiness that this world offers with it's other hand. I knew that you would hit pitfalls along the path of your life. One day, someone would hurt your tender feelings. One day, someone would break your loving heart. One day, you would be seduced by the rat race and you would be introduced to stress and disappointment. One day someone you love would die. One day....I never imagined in all of the One day scenarios that you would come face to face with such immense challenge in such a short span of time. You are so brave, pumpkin. I know you don't understand why I say that...or why other people say it. That's part of being brave though isn't it? It comes without coercion. You are not brave because you have decided to be so. You are brave because you are brave. That simple and that complicated. It is difficult for me to look back at the last year of your life without tearing open a healing scar in the fiber of my heart. Those months of horrendous back pain. I still feel angry when I think of all the doctors that missed it. You were so weak and pale and my heart aches all over again when I think about how long you must have been feeling that pain before we figured out what was really going on. I'm your mother, Max. I'm suppose to protect you and shield you from as much of the yuckiness as I possibly can. It is agonizing for me to revisit the fact that no one was able to give you relief and help you feel better more immediately . I want you to know that I am so profoundly sorry, baby. This was my JOB and I missed it somehow. It is unsettling beyond measure...even now. It broke me and shattered me into a million pieces when I found out just how sick your little body was. My goodness, Max, to know that you would suffer. To know that you would endure such exponential pain. To know that childhood as you knew it would be washed away. To know that I would be able to do nothing to stop it. There is nothing in the world that I wouldnt do for you. And yet nothing was what I had to offer. You had to go into this battle alone and so you put that iron will of yours back into full force. Courage does not come easy to just anyone, but you're not just anyone now are you, Maximo? Your attitude is beautiful. Watching you slay this disease has been the most powerful and inspiring thing I will witness in my lifetime. You are unbreakable, Max. No Fear. No Complaints. Just seek and destroy. I have no doubt that you will be able to do ANYTHING you put your mind to in this life. You are a testament to the human YOUR human spirit. You are 10 years old today. You are 10 years old and you, my love, are the celebration. I celebrate you everyday. How blessed I am to know you! When I think back and try to remember what life was like without you...all I can imagine is that it must have been terribly gray. You are my puzzle piece. My heartfit. Thank you, pumpkin for making me laugh. Thank you for being such a warm and kind soul. Thank you for encouraging me when you know I need a pep talk. Thank you for giving the best hugs in the whole world. Thank you for teaching me a new perspective on a regular basis. You are wise beyond your ten years. Thank you for reminding me what it means to be grateful. Thank you for awakening me to see and consider other people when I can't see past myself. Thank you for putting up with and cracking up about my absurd and undying neuroses. Thank you for never being too old to hold my hand or snuggle up in my lap. Thank you indeed for loving The Beatles :). Thank you for being exactly who you are. You have such a pure, honest and gentle heart beating inside of you. Thank you for sharing it with me for the last ten years. I cannot wait to watch you grow into the strong and charismatic man that you are bound to become. I am so thankful today and always that somehow...someway...the miracle of your love found me. Happy Birthday, My Sweet Max!...And Many Many More!
I love you to the moon and back...Eight days a week.

Monday, June 1, 2009

Hair today...gone tomorrow

"It's a long way to the middle" someone said to me earlier this week. Word. I've spent the last several days in reflection of just how far I have come in my pursuit of the proverbial middle ground nestled somewhere between the depths of my fears and the peaks of my faith. It's a challenging climb out and a long way to fall. In large part, the mental tug of war for balance in the middle has finally exhausted itself.
I heard from three of my faithful readers today asking about the silence found on my blog the past few months. I'm not entirely clear why I've shrouded this quiet space on the web in utter neglect. I can only conclude that I have spent an unhealthy amount of time in my head and felt a nagging sense of nausea in revisiting some of the events of the past several weeks. I have spent hours (somewhat) immersed in the sardonic, bittersweet vocabulary of many "self help books" that have mysteriously been arriving on my door step since January. 'CANCER: 50 essential things to do'. 'Cancer: Step outside the box'. And my personal favorite 'Crazy Sexy Cancer Tips' ( a wag of the finger to the mystery person who sent that one my way...I can not yet bring myself to remove the cellophane). This (air quotes) "literature" is packed to the gills with all of the sentimental nonsense that you yearn for with half of your heart and mock bitterly with the other half. What curious catechisms the all knowing keepers of the "good life" chant at you through the crisp white unrecycled pages of a pocket guide to cancer, but I digress. I am really going to try to stay on top of this blog. I have been removed from this space for so long that I feel overwhelmed in where I should begin.
Max has been on an interesting journey the last few months. I continue to be blown smooth away at his resilience and his attitude towards this terrible space in time that has become his world. I'm not sure if it is the lack of a relationship he has with his mortality or if it is the complete lack of choice that a child is born with...but Max's world spins on an axis of complete acceptance. His world is no acquaintance of fear or uncertainty and so he whistles right along on this oh so unpleasant path with the knowledge that a greener pasture is sure to be in sight soon. I cannot say it enough...MAX IS AN AMAZING LITTLE HUMAN. About a month ago he experienced a very severe allergic reaction to a very basic drug. It was hands down the scariest moment of my life to date. He turned Blue. He stopped Breathing. He hit the floor. The fear and panic I felt in that moment is beyond I won't even try. He spent the night in the hospital and they have temporarily pulled that drug from his regimen. It is an essential drug for him in order to remain in remission. I'm not looking forward negotiating another dose, but that day is right around the corner. Max begins intensified chemo therapy tomorrow morning. This phase of treatment will last 2 weeks. He will be receiving chemo 4 days in a row. 3 days off. 4 more days in a row. The first dose tomorrow will be prefaced with a quick trip to the O.R. for the usual spinal fluid injection of chemo, a spinal tap, and a bone marrow biopsy. He is likely to feel his worst during these next two weeks. The hair that has been creeping it's way back onto Max's smooth little dome will begin to let go and fall away once again. Conversely, he will begin the first phase of maintenance after this short run of intensity. Life gets a whole lot easier for everyone about the middle of June. An energy packed Max will be in full swing maintenance by august and will grow back a wild and unruly mop of hair by the time we celebrate his 10th birthday on October4th. He is very excited about returning to the classroom this fall. I dream of the day he can return to being a normal kid again and after the next two weeks he will begin that journey to normalcy.
I suppose the biggest movement over the past few months has been towards the beauty of letting go. Letting go of control. Letting go of relationships gone sour. Letting go of a phantom place in time that is known as "yesterday". Letting go of fear. Letting go of anxiety. Letting go of pride. Letting go of erroneous impressions of life and invincibility. "Morning to wake you...that's all we've got". I stood witness to a pedestrian steamrollered by a moving car yesterday. It rocked my soul. She was just trolling along the sidewalk just minding her own business and it is as though she saw it coming and surrendered to the certainty of the situation. It serves as a reminder to me that life is fleeting...always. It serves as a reminder to me that tragedy exists even in the most cautious and controlled environments. Most of all it serves as a reminder to me that the only real choice we have in life is the choice of decision when one can be made. How powerful. We are nothing but a collection of the choices that we make and in the end we all have to pay the bill for them.
A special thanks to everyone who came out and supported Max's benefit on Mother's Day.
Ben Londa, Jessica Jarrett, Susan Antone, The Jolly Garogers, Stefannie Fix, John Pointer, Johnny Goudie, The Calm Blue Sea, Chatterton, Christopher Anton, Uncle Bruno, Topaz, Jennifer Habeck, Mike Judge, Sunny Haralson, Ashleigh Daniel, C3, Deb Henry, Nancy Cusick, and everyone else who donated their time and their money to Max's cause. We are eternally grateful.

Tuesday, February 10, 2009

~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 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 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!

Wednesday, January 21, 2009

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


Thursday, January 15, 2009

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… 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-

Tuesday, January 6, 2009

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 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 " 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 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.