Take That Cancer!

Here we are, sporting our Super Mommy and Super Daddy capes that were made for us by a very, very sweet lady.  Nate loved to see Mommy and Daddy, zooming around the room in our capes.  Thank you Mary and Aunt Lizzy.

We can mark today down as a victory for the Super Dinoffrias!  Super Nate, our sweet baby boy, is officially NED!!!  We got all the results from his scans and bone marrow biopsy back today, and there is no evidence of neuroblastoma in his body.  Praise God!

Nate also gained 1 pound over the weekend and everyone was really impressed with his progress, so they did not put the NJ tube in.  I am still nervous about Nate's ability to gain enough weight in the coming weeks, but I am happy that he didn't have to get the tube placed today.  We will keep a close eye on his eating and weight gain and hopefully he can be the Super boy that he is and gain this weight all on his own.  His echo cardiogram and EKG also came back normal.  I had a nice visit with Nate's main oncologist, who we haven't seen in a few weeks, and got a lot of questions answered.  Apparently, Nate's vomiting, which appears to be due to delayed gastric emptying is completely normal after the surgery he had.  They had to remove a "significant amount" of his liver, which is right near his duodenum and his problems are all expected.  We are going to try a medication to help speed his GI tract along.  It may or may not work, but we're going to give it a try.  We also talked about some scary side effects of stem cell transplant that I've been worried about and my mind was put at ease, the best it could be.  We will be having some big meetings with the actual transplant team in the coming weeks.  I also spoke with Nate's doctor about an alternative form of radiation that we will be researching a bit more.

All in all, it was a good day at the clinic.  Nate's platelets were a bit low, but not enough for a transfusion.  So, we have to be wary of a nose bleed in the next couple days and return for a count check, and possible platelets on Friday.  Nate has an audiology appointment tomorrow morning to see if he has experienced hearing loss and to what extent.  The reality is that most kids that receive the type of chemo that Nate got, do experience hearing loss.  So, I am expecting this.  I pray that if there is loss, it is not too significant...but if it is, we will teach Nate to wear the hearing aides proudly as a badge of honor in the war against cancer.  Thursday, Nate has to be at the hospital all day again, for a kidney function test.  Then Friday, back to PCH for a neuro psych evaluation.  Basically, to see where Nate falls developmentally.  We just can't get away from that place.

Nate did ok with his eating today.  Not a ton, but more than the days before and he has kept everything down.  He is also getting more and more perky each day.  It is apparent that he is totally exhausted, but he is just more "Nate".  Talking constantly and saying the cutest, funniest things.  Also, being a little stinker...which I truly love, no matter how much it makes me want to pull out my hair.  He still does not want to walk, at all, and cries when I make him do it, but he is sitting up a bit more now.  It's just baby steps right now, that are super frustrating because we are on a time crunch with the transplant looming, but he will get there.  Stronger and stronger every day.  Thank you to everyone for your kind words and prayers.  I read all of the comments and messages, and they mean so much to us.  A special thank you to Nate's special friend Nadia, who is in her own battle with leukemia, and her mom, Jeanie  They searched all over the hospital today and tracked us down to bring Nate a special book.  Nate loved the book and immediately identified with the characters in it.  I had a hard time getting through it the first time without crying.  Then, I read it again to both boys tonight.  It really meant a lot to all of us.