Max Medical Update

Max started an additional chemo drug this past week to see if we can't knock that spot on his spine down. He had IV topotecan M-F and did great. We'll continue with the topotecan two weeks from now in an oral form that we can give to him from home along with the oral cytoxin he's been on since last summer. Hopefully he'll bear this combo better than the VP16 (etoposide) we tried on him a few months ago.

As for side effects, nothing yet. No overwhelming nausea... in fact his appetite increase a little(?). Isn't that strange? He ate a few things over the weekend and had mashed potatoes and 1/2 a chicken leg tonight. We're waiting to see what happens with his hair. :-( He's got a nice head o' hair right now and I'd hate to see him lose all of it again. He doesn't mind being bald anywhere except school. Too many kids stare at him and I know they don't mean to - but he looks very different bald.

He's going to the hospital tomorrow morning for a blood transfusion. He hasn't had any transfusions in quite a while. The IV topo definitely caused a drop in all his numbers.

As for Max, he looks and feels great right now. He's a regular ol' first grader to the general public. I hope everyone remembers that his outward appearance does not always reflect the battle that rages on inside his body.

It's a guessing game trying to figure out what to do to save our son. What treatments he can weather, how to tweek them to work best for Max. There is simply no plan in place for kids with recurred neuroblastoma - because the cure hasn't been found yet. This is in our minds every minute of every day.


Anonymous said...

Just wanted to tell you that all of you are on my mind and heart everyday!

I will keep Max in prayer that he won't experience any nasty side effects from the new chemo and that he doesn't lose that beautiful head of hair.


Anonymous said...

We can never experience the feelings you and Andy have as Max's parents. We are aware of the trials you go through and the agony you must feel as you fight this disease. We pray for you.. for strength for you and Andy, for health and a cure for Max and for one day soon a normal life for all of you.
It will happen because we will "never,never,never give up"!

Love, Mom

Randee said...

Hey--what a cute pic!!! You all are on my mind everyday!!! I just wish in some way I could ease the burden you must feel every day. I see the wonderful smiles on the faces of your sweet babies and know in the middle of this burden life has presented you, you have the treasure of a lifetime. Smiles like those are rare and to be held close in your heart. Thank you for sharing. God's warmest blessings--Randee

PS Mike just found out he works with a lady whose son had NB when he was 2--now he's 16!!!!!

Anonymous said...

Andy and Melis,

There are no words to express how tremendously strong you two are. Your children are beautiful and I wish I knew them personally! I have 3 step children and unfortunately don’t get the opportunity to see them everyday, but I do have an appreciation of how proud you must be of your 3 children, especially Max for being such a fighter.

Your entire family is amazing, the bond and strong will you guys have to pull through this terrible disease is awesome. It serves as a reminder to everyone who hears your
story to live life every day and appreciate all the small things. Miracles do happen and I pray everyday for your Max and the rest of your family.

Take Care and Stay Strong!
Michele Vaughn

Anonymous said...

Can Max try the COG antibody therapy?

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