Saving the World

Chemo, done; surgery, done; bone marrow transplant, done; radiation, done.  So, why the heck isn't Nate done with these stinkin' treatments?  Neuroblastoma sucks!  It has a high risk of relapse...and there is no known cure for relapsed neuroblastoma.  We have to make sure that Nate stays NED forever and we want neuroblastoma to know that it's not welcome.  That's what the last 6 months of Nate's treatment is all about...showing cancer who's boss.

Nate is enrolled in a Phase III clinical trial involving a monoclonal antibody (MOAB) called CH14.18.  This antibody is a protein made in the lab and designed to attach to neuroblastoma cells and other cancer cells that have GD-2 on their surface.  The body's immune system is then stimulated to attack the neuroblastoma cells.  Originally, there was a randomized placebo controlled trial that showed such promising results (a 20% increased survival rate), that the trial was stopped and now all enrolled patients receive the antibody.  This trial consists of 5 rounds of antibody and 6 rounds of Accutane (Accutane causes neuroblastoma cells to mature and stop them from growing out of control).  The plan is for the antibody and Accutane to find any hiding neuroblastoma cells (that can't be picked up by current scanning technology) that were left behind, and kill them DEAD (because one cell is too many cells)...though, truly we BELIEVE there are no remaining cells and this is a better safe than sorry treatment.

Rounds 1, 3 and 5 will be the same and the antibody will be coupled with 14 days of an immune system stimulating shot called GM-CSF, that we can give at home.  He will need to spend 5 days in the hospital for these rounds, 4 days of antibody infusion and going home on the 5th day.  Rounds 2 and 4 will be the same and the antibody will be coupled with a different immune system stimulating infusion called IL-2.  This can only be given in the hosptial, therefore Nate will have to spend 10 days in the hospital for rounds 2 and 4.  Four days of IL-2 infusion, going home on the 5th day to spend the weekend at home, then four days of IL-2 and antibody and going home on the 5th day.  The Accutane treatment is a total of 6 rounds, intermixed through the antibody treatment but we will give that to him at home by mouth.  He will get 2 weeks at home after rounds 1 and 3 and 3 weeks at home after rounds 2 and 4.  After round 5, he will be done with his hospital stays...last scheduled day in the hospital should be September 7th (not that we're counting) and he is scheduled to complete treatment all together October 21st.  Wow, won't this year's holiday season be so completely different than last year's!  We are so excited!

This treatment can be pretty tough while the kids are going through it, but the nice thing is that we don't have to worry about him tanking like we did with chemo.  When the infusion is turned off...the side effects go away.  Mentally, this works for me.  We all know that I'm a planner, even though I've learned this last year that I have control over nothing.  I like to know that I can plan for Nate to be out of pain and feeling better when the infusion stops...it helps me stay positive and get him through the rough moments.

Nate did really awesome!  Some of the common side effects that he experienced were pain (bone pain, nerve pain, stomach pain and massive headaches), fever, cough, tiredness, flu like symtoms, fluid retention and 3rd spacing (where your body leaks fluid out your veins into the surrounding tissue).  The doctor's and nurses are VERY on top of everything and do what they can to counteract each side effect.  The pain the first day was the worst while we tried to figure out the best dose of morphine for him.  Each day after, got progressively better.  Tuesday, he had very little pain but slept all day.  Wednesday he was much more alert and today he was basically up and playing all day long.  Except for a temporary freak out in the afternoon over the pain in his head, that we took care of with morphine, ibuprofen and mommy snuggles, he didn't even want to be in his bed today...too busy playing to rest.  He is just so awesome!  One round down...4 to go.

This week, there was literally a war going on inside Nate's body.  A battle of good (Nate's immune system) versus evil (neuroblastoma cells).  When Wes was like 2 or 3, every time he saw a picture of a super hero or villian, he would ask me, "Mommy, does he stroy (destroy) the world or save the world?".  Super Nate is once again using his super cells to save the world...or at least my world, because my little boy and my family ARE my world.