Plugging Along

We are ok...Nate is ok.  I wish we could say we are spectacular.  Nate is still skin and bones and still does not have enough energy to walk.  He had a clinic visit on Friday and Nate had gained another 0.3 kg (about 2/3 of a pound).  Yes, it is progress.  I just wish I could see it on his body.  The fact is that he is still 7 to 8 pounds under weight...and that is a lot.  He is eating...small amounts.  He asks for food constantly and then only eats a bite or two.  I literally spend my entire day, making food and going out to get food that he asks for, only to watch him take two bites and throw the rest away.  It seems like a never ending battle.  Then, we have made him throw up twice in the last two days, by giving him medicine.  Plus, the diarrhea continues...with a vengence.  Really, it's a battle.

Now, for the good news.  Nate's little personality is back.  He is still very, very tired, but when he has a bit of energy, he is acting like himself...except for the not wanting to walk and run around like crazy.  He wanted to see a movie in the theater (one of his favorite things to do), so we took the boys to seen Alvin and Chipmunks on Friday night.  Nate loved it, especially the exploding volcano at the end (rockets and volcanos are his favorite things right now)!

We learned on Friday at Nate's appointment that his platelets were starting to slowly creep up on their own, so he didn't need a transfusion.  If his numbers all recover completely, on their own, they are looking at starting the transplant process on January 23rd.  The first three days are injections in the clinic...then he will be admitted on the 26th and the chemo drugs will start on the 27th.  I don't know if it is a possibility, but we want to try and push it back a week, if at all possible.  A few people have asked, "What is the rush?", "Why can't they put off the transplant until his little body is stronger?".  The short answer is that his cancer treatment protocol requires that the transplant be done within so many weeks of the last round of chemo.  The protocols are based on research and the research says that you can not let his body have too much time to recover, because you may then be giving any hiding cancer cells a chance to grow.  We have an appointment on Thursday to discuss things a little more.

After Nates's clinic appointment, we went for his neuro psych (developmental evaluation) appointment.  Nate cooperated with the woman for about 10 minutes...then, was not going to give her the time of day.  We rescheduled for next Friday.  I hope he will be feeling a bit better, but if Nate doesn't want to cooperate...Nate will not cooperate (sick or not).  So, we will see.

We then went back to the clinic, so I could sign all the papers consenting to the transplant process.  Really, it's some pretty heavy stuff.  I can't tell you how much I hate signing those papers saying that they can torture my baby...but we have no choice.  We have to give Nate the best chance at life and this is the only way to do that.  Now that the papers are signed, Nate will be randomized to either one transplant or two (back to back mega dose chemo with stem cell rescue 6 weeks apart).  Nate is enrolled in a study to find out if two transplants is better than one...at this point the research is not definitive.  I am very, very nervous about finding out Nate's place in this study.  I am praying that he will be randomized to one transplant.  Chris and I feel that with Nate's presentation and his fragile state, that two transplants would just be too much.  If he is randomized to two, we will most likely pull out of the study and only have him receive one transplant.  The reason I am praying that he will be randomized to one is that it will make our decision for us (two transplants is experimental and can not be given unless randomized to that arm of this study).  I worry that if Nate is randomized to two transplants and we decide to pull him from the study to only receive one, and Nate's cancer ever relapsed, I would always wonder if we made the right decision.  I just don't like these awful decisions being placed on our shoulders.  Nate's oncologist poked his head in the room after I finished signing the papers and said that he knows I have probably heard of some other neuroblastoma kids not doing so well lately.  He wanted me to know that Nate's MIBG scan was EXTREMELY clear (sometimes there are questionable areas) and he feels like Nate has a few more percentage points in his favor.  While I don't like my son's life to be reduced to percentage points and we wholeheartedly BELIEVE that Nate has a 100% chance at life...it was still kind of nice to hear that (in a weird way) from a doctor.

We are getting very excited for Nate's benefit on Friday night...Super Date for Super Nate.  We are happy that the transplant process has not started yet and we will be able to attend.  We are hoping to even bring Nate for a little bit, so that everyone who may not have met him will have a chance to meet a real life super hero.  If you are interested in attending and have not got your tickets yet, please contact Donna Mobilia at dmobilia@aol.com.  There are still tickets available for the dinner and poker tournament.  There will also be a silent auction and raffle with lots of fun items.  There is more info available on the flyer and ticket form that is posted on the right side of the blog.  There are so many lovely people who have been working so hard on this for us, it is truly amazing.  We can't wait to see everyone there.  Thank you so much for your support.