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.