Max's pain seems to be under control. He can walk(!), stand up to pee - was having to sit, muscles too tight from the pain :( Saturday afternoon was one of my worst experiences as a parent. Max was in pain, and totally emotionally melting down. Crying, weeping, angry. Trying to maintain some sense of control, his nurse and I had to do exactly as he said or he'd go even further into hysterical screaming attacks. Finally we increased his morphine once again while also giving him 4mg of decadron (he's had before and it works - though not without side effects of the emotional kind... he gets extremely volatile on decadron). By evening he was lucid and even chatty. Sunday at 4am he practically sprung out of bed to pee standing up which was fantastic!

Later on Sunday the decadron began to show its ugly side and he was a p*sser for the rest of the day.

Lots of Lego Star Wars on the PS2 the past 3 days.

Friday morning

Friday afternoon


I wished I had filmed some of the moments of courage that Max displayed over the past few days. Some things that are easy, he quite honestly can be a baby about. Other times, he displays such courage and strength that I am awed and in awe of him. We will be doing a better job of chronicling his activities, for our sake in the future, and for those that are following him.

As it is, there are two things Melissa and I would like to share that hopefully allow you to get to know Max beyond the neuroblastoma stuff you read in this blog. The first is Max's progress report from the last trimester at school. The other we will share in a subsequent post.

Keep in mind that Max has missed either full or partial days a third of the time in this 2nd trimester of 72 days. I know parents like to brag about their kids' progress reports from school, but consider this not bragging but insight into how Max operates, and his strengths and weaknesses (with apologies to Lisa Sturt if I shouldn't be disclosing her student evaluations!).

Max continues to be Room 23's ray of sunshine; we all enjoy him so much! I am pleased with the progress Max has made. He has very strong comprehension skills and inferential skills for what he reads. He also remembers an amazing amount of information from the text! Writing is still not a preferred activity, but with encouragement he can write a solid paragraph with a topic sentence, detail sentences, and a concluding sentence. Of course, he continues to add his own flourishes like writing the word "big" in all capital letters to make sure the point gets across! He is always finding ways to express his creativity. When asked to self-edit, he does a good job finding his missing capitals and periods. The illustrations that accompany his writing all seem to have their own story (in Max's preferred modality--verbal!). It seems Max has an easier time writing if he can verbally express his ideas first and get approval and some cheerleading. Max's spelling continues to improve. He will use our sound letter cards to find a spelling strategy for a particular phonetic sound. Smart thinking! He also has good strategies for math. "If 10 - 2 = 8, then 11 - 2 = 9 because 11 is one more than 10." This demonstrates that he really understands numbers. However, he doesn't have his facts memorized and this slows him down. With what are often difficult concepts for a first grader, like money and time, Max mastered these easily. Recently, Max has been really striving to complete his work more quickly with successful results. He can easily become unfocused at the task at hand, but does not need much redirection to get back on track. It's difficult to know how much of his distractability is due to his medical challenges. Max is always eager and enthusiastic about learning. His positive and energetic attitude is contagious. He is a friend to everyone he meets and is so kind-hearted and thoughtful. I truly never have seen a more compassionate and sincere child than Max. He has stolen my heart!


Will's Dad said...

I can say, without a doubt, Lisa is among the thousands of us who have had our hearts stolen by your handsome, brave, strong, inspiring, and determined boy Max. I love you guys and hope Max is home soon, right where he belongs.

Anonymous said...

I agree! Max has stolen my heart as well by his courage and sensitivity. It has always been very heartwarming to me to watch how gentle and loving Max is toward other kids, especially the younger ones!! A sweet boy no doubt and from what I read quite the scholar as well. Way to go Max...you must have some sharp parents and great teachers :).

Anonymous said...

Max has touched more lives than most of us ever could-even if we lived to be 105!

He is such a brave and noble little spirit, always reminding those who follow his story to take nothing for granted-like walking and pee standing up!

He is the wonderful human being that he is because of the guidance of the parents he has. He-like you-make the world a better place.

I think of him and you both throughout my day-every day-praying
for peace, comfort, and miracles.


Anonymous said...

I also wanted to add that I am a teacher, and it is AMAZING the progress Max has made, especially given the number of days he has missed and due to the fact that he carries around the burden of cancer with him on a day to day basis. I am in such awe of him...he has left an indelible mark on my heart.


Anonymous said...

The only trouble I've gotten in from posting Max's report card remarks is at home! Daniel wasn't too keen on the statement about Max "stealing my heart." Daniel thought he himself had done that 20+ years ago! :) Truth be told (although Daniel probably wouldn't admit it) Max has stolen Daniel's heart, too, or at least a pretty big chunk. I am pleased to hear the pain is under control but sorry to hear about the emotional toll. I can't even begin to imagine how hard that is for you. Lots of prayers that his warm, loving, sunny personality will soon break thru. xolisa

Anonymous said...

What heart hasn't Max stolen! Other than my son, Max is the only other male that has stolen my heart..every bit of it! I feel when he is a 'baby' about certain things it's because they are easy..no reason to be brave and have a stiff upper lip..BUT when things are hard, and there have been plenty of times ,that is when Max steps up to the plate and shines with courage and being brave and strong!He is an angel..looking into his eyes melts my heart..he has me wrapped around his finger without even trying. What an honor to know him...you as parents have done a marvelous job of raising this incredible little guy. I pray his pain stays under control and that his friends will soon see his smiling face back in class. I also think he has an exceptional teacher that has challenged him and understood his needs..BUT then I am biased..Sending prayers...hugs..and tail wags from Libby. xo Linny

Anonymous said...

Dear Max,
I miss you. I hope you feel better soon. I hope you come back to school soon. I miss you so much that I want to see you right now. I hope that you have fun there.
Your friend,

Randee said...

Hey Max---we always we knew you were smart and we are so proud of you for doing such a good job in school especially when you have to go to clinic and the hospital so often. How was your ambulance ride today? Is it as fun as the fire engine you got to drive last year? When I got home from work today our cousin Char and her husband Al sent you a package all the way from Florida!! I will drop it off for you tomorrow.
Will you tell your Dad, Mom, Hannah and Nicky we are proud of them for all the special things they do for you!!
Always in my prayers!! Annee Ranee

San Diego Mom said...

When I used to read with Max, he would look at me when he has some words he is not sure and says it in a small voice. When I tell him that is correct, he puts on this big smile and repeats reading the sentence with a big, assertive voice. When I see that smile, I always felt like jumping up from my seat and kiss him. I guess I have to raise my hand as another one who had her heart stolen. But it is ok, Max, to let your demons out during the treatment and stop being the cheerful Max we know for a while. You got the strongest parents who can hold you along with that demon, who understands what you have to endure......Shiho

Ben Froman said...

Dear Andy and Melissa,

I hope today's filled with may victorious Lego Star Wars games.

Here's to hope and strength in the face of the unknown.


Nancy Goodman (a MB mom)

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