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