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.

It Takes a Village

I had a wonderful Mother's Day yesterday, spending time with family, playing with my kiddos and taking a long nap.  This Mother's Day was extra special not only because I appreciate being a Mommy to my the super awesome munchkins so much more than I ever thought possible, but also because I am even more aware of all the beautiful, strong women that surround me and my family.  I've always thought Mother's Day wasn't just about moms, but about all nurturing women.  Never has this been more apparent than this last year.  My kids and I are so completely blessed to have some very fantastic, nurturing women in our life who have not hesitated to step in and care for my children when I could not be there.  I strongly believe, that while this year has been super hard, my kids will come out strong, happy, well rounded individuals thanks in no small part to the love and care they have received from all these women.  Each one has different strengths and my kids have been lucky enough to benefit from all of them.  I try to be everything for my kids but, of course, I can't be.  How lucky are we that out of this trial, Wes, Nate and Ellie get to spend time with all of these amazing women!  The most amazing, in my opinion of course, is my mom.  Who's strength and love I continue to draw from every day.  So, thank you to all the amazing "moms" who have dropped everything to care for me and my children, you know who you are.  We love you!



Nate began the antibody treatment today.  It was rough.  We checked in to the hospital at 7am.  We got up to the room and Nate was hooked up to fluids.  Soon, he got his daily shot to boost his immune system.  He was given Tylenol and hydroxyzine, which hope to protect against some of the side effects of the antibody.  Next, he was given a bolus of morphine and hooked up to a pain pump.  The CH 14.18 (the antibody) started at about 11:15am.  I tried to get Nate to rest because I thought the hydroxyzine and morphine should make him want to sleep.  It certainly made him "drunk", but he had no interest in sleeping, he was jumping all over the bed.  So, we took Softie for a walk all around the 7th floor.  Halfway through our walk, Nate started to look sleepy and asked to go back to his room.  By the time I laid him back in his bed, he began moaning in pain...this was about 2:30pm.  We were told that it might take as long as 6 hours on the first day to see the side effects of the antibody...Nate only made it 3.  I snuggled up in bed with him (normally he doesn't want anyone in his bed) and watched the clock for the next time I could push his pain pump button.  He would get relief here and there but did a lot of moaning.  After about 2 or 3 hours it was apparent that he wasn't getting any relief from the morphine because he was crying out in pain.  I asked the nurse for more medicine and they gave him another bolus and upped his pump dosage.  The nurse told us to try and rest and she would come in every 10 minutes to push Nate's pain button.  It apparently worked because I woke up about an hour later, at 7pm, and Nate was drugged, but not uncomfortable.  The antibody stopped at 9pm.  The pain pump will be turned off soon.  Nate is currently snoring away.  I'm hoping he might wake up and eat a little, then go back to sleep for the night.  I'm hoping he won't wake up in the middle of the night, fully rested, because he slept in a drug induced stupor all day...we'll see.  Nate is also retaining some fluid, but doesn't really look that puffy.  They are giving him a diuretic to try and get the fluid off.  I promise to write that post explaining this therapy soon, but this is all expected...it just stinks seeing my baby in pain.  Round 1...1 day down 3 to go.  We can do this!

N to the E to the D!!

First things first.  Praise the Lord!  Nate is still NED (no evidence of disease)!  Cancer doesn't stand a chance against our super boy!

Nate had a busy week of tests and scans last week.  Monday was an audiology appointment to check for more hearing loss, followed by a cardiology appointment for an ECHO and EKG to check the health of his heart.  Tuesday, Nate had a 6 hour kidney function test intermixed with a clinic visit, chest xray, and MIBG injection.  Then Wednesday, Nate was put under anesthesia for a CT of his chest, abdomen and pelvis, a full body MIBG scan (which looks specifically for neuroblastoma), a full body PET scan (which looks for all types of cancer), and a bone marrow aspiration.  Monday and Tuesday were long and busy, but went smoothly.  Wednesday, my mom came with me to the hospital to keep me company and keep my mind off the scans.  Jen also came down to the hospital for awhile to help distract me.  My mom and Jen were very successful.  I really didn't get too anxious until Nate had been under anesthesia and gone for over 3 hours, when they said it would probably take 1.5 to 2 hours.  Finally, they brought us back to Nate.  He woke up slowly from anesthesia, but was pretty pleasant.  He was super hungry, because he had not eaten all day, and he has never had a problem eating right after anesthesia.  So, I let him drink almost a whole container of chocolate milk and eat some snacks.  Then, he barfed it all up all over my car on the way home.  Poor kid!  Poor car!  It still smells a little...time for a car detail.

Thursday, I got a call from Nate's oncologist.  Just so you know...my heart literally stops from the time I see the doctors name on my caller ID until he spits out the results.  He had the results from the kidney function test, the CT and the MIBG scan.  The MIBG showed no uptake...CLEAR!  The CT showed no tumors, only a fluid filled hole where the tumor had been...CLEAR!  The kidney function test also came back very good.  Greater than 70 is normal kidney function, Nate's number was 137.  This is great because the radiation is still working and could still damage the one kidney that was radiated.  Therefore, his kidney function will most likely decrease.  It's great to know that he has some "wiggle room".  Friday, I missed the doctors call, but he left a message saying that the ECHO, EKG, PET and bone marrow aspirations all came back with GREAT NEWS!  We will get more specifics at Nate's clinic visit tomorrow, but "great news" sounds pretty good to me!  The only "bad news" we received was about Nate's hearing.  It has gotten worse (which is pretty much expected) and is now considered poor in the high frequency range.  He will definitely benefit from hearing aides and we are starting to work on getting these for him.  While I am saddened by this and it's not something I would have ever chosen for my son...it is a very small price to pay for his life.  I will always try to see those hearing aides as a well earned badge of courage.

Tomorrow, Nate will have a blood check and check up to make sure he is ready to start the next phase of treatment...antibody.  All of his tests and scans were sent off to the COG (the nationwide Children's Ongology Group that runs the antibody study) to make sure that he qualifies for the study.  We are praying that all his blood counts will say that he qualifies and is ready to go.  We are scared, but we are ready to get this started.  We have also planned our summer San Diego trip around him starting antibody this week...this is very important to all of us.  Assuming everything checks out tomorrow, we will return to clinic on Friday and Nate will receive the first of many injections to stimulate his immune system.  We will continue to give him these shots daily at home.  The first one just needs to be given in the clinic to make sure he doesn't have a reaction.  Then, we will check in to the hospital on Monday to start the antibody therapy.  I will write a post soon explaining this treatment.

Going through the week of testing with Nate last week brought many mixed emotions.  You see, the last time Nate went though this same set of testing was in January.  Nate was beyond sick in January.  When we went to the cardiology clinic on Monday, the nurse confirmed, "he still weighs 12 kg?"..."um...no...no he doesn't.  He weighs 16.6 kg!".  I remember being so concerned about him being under anesthesia and not able to eat for several hours.  We spent every waking minute of every day trying to get Nate to eat and keep down food...he was literally starving.  The last time he had these tests done, he was too weak to walk...at all.  I still remember that I brought him home from having scans and I carried him to a chair in the backyard thinking we could sit outside and enjoy some fresh air.  I walked back in the house to get something and when I went outside again, Nate had gotten up and walked to the pool fence to get a closer look at a ball.  I bawled...at that time, he hadn't walked unassisted in weeks.  He was so sick.  I look back and don't know how we physically, mentally and emotionally made it through December and January...all of us.  Look at him now!  He was literally running  ALL over the hospital.  We don't even have to think about food...we just feed him and he eats.  His weight is normal and his hair is growing back.  Thank you God for getting us all through that nightmare.  Thank you to everyone for your prayers, thoughts, love and support.

Here Baby, There Mama, Everywhere Daddy Daddy...HAIR!

Nate has been working hard every day to grow his hair...actually scrunching up his face to push it out...and it's working!  It's really starting to come in!  He even keeps trying to brush it...so cute!  It's super soft and fun to feel.  I watched a man waiting for his suitcase in baggage claim, reach down and rub his head...he just couldn't help himself.  It didn't faze Nate though, because I can't stop touching it either...he probably thought it was me.  When it first started coming in...and up close...it looks blond.  From far away, it looks brown...and in the sun, it has a red glow.  So...what do you think his new hair will look like?  You can vote in our poll on the right hand side of the blog.  We won't have the real answer for some time, but it sure will be fun to watch it grow in.