Blessings

Thursday morning, Nate went in to surgery to have his line put back in.  He kept telling everyone that he pooped on his line and it had to be washed to get the bugs out.  He then talked about getting scissors and putting the clean line back in himself.  Yikes!  Most parents have to worry about their kid getting a hold of scissors and cutting their own hair...we have to worry about ours trying to insert his own central line!  He was such a card this hospital stay.  I think it was because he was feeling pretty good.  He's always funny (when he's feeling good), and he had all the doctors and nurses cracking up, all week.  The surgery was quick and easy.  He was a little nervous before, but the happy medicine (Versed) helped.  I told the anesthesiologist that I needed some too, unfortunately, he did not agree. When I went to see Nate in post-op he was sitting up (with his eyes closed), asking to get back to his room.  He was happy to have his line back...and boy, so am I.  I think I missed it more than he did.  Poor kid had to get stuck so many times during those 2 days without a line.  Thank God for the Broviac!  We had to sit around the hospital for a few more hours, so that he could get his afternoon dose of antibiotics.  On the way out, we swung around the other side of the floor to give Nate's favorite nurse "knuckles" before we left and we were told that there was a Diamondback in the play room.  Nate got to meet and get an autograph from Paul Goldschmidt.  He was pretty excited to meet a "real baseball player".

Home health came Thursday night to show us how to give Nate his IV antibiotics every 8 hours.  It's pretty amazing how easy they can make things, these days.  We don't need an IV pump, or anything.  The medication is in this contraption called an Eclipse (or "party ball").  We flush Nate's line, hook up the "party ball", unclip it, and it goes into his line over an hour via compression, then we flush his line again.  The only pain in the butt part is that it ends up being a 2 hour process because the medication is refrigerated, but needs to be taken out of the fridge an hour before we hook him up.

Home has been great for Nate.  I knew it was a good sign, when we got home and walked in the house...he saw one of his stuffed animals on the kitchen table and let go of my hand to walk and grab it.  Those were the first unassisted, unforced steps he had taken in a month and a half.  Later that night he actually got off the couch to do a floor puzzle with Linde.  He has been eating well and moving a little bit more every day.  This morning, Chris got out of the shower and was surprised to see that Nate had gotten out of bed and walked to the couch in the living room (carrying the "party ball" he was still attached to)...he hasn't gotten out of bed by himself in almost 2 months.

We've been basically doing anything that Nate wants to do, which means eating at all sorts of random places, chosen at the last minute.  Friday, Nate wanted to go to Costco for lunch and Chick-fil-a for dinner. We went to a friend's birthday party at the railroad park on Saturday and had friends over for dinner.  Sunday, Nate wanted to go to Dilly's for lunch and Chris and I went to dinner and a concert that night and left the kids with Grandma and Linde.  Nate wanted Chick-fil-a again and they remembered upon driving over there that they are closed on Sundays...he then decided on McDonalds.  Today, Linde took a half day off at work.  She works near the airport, so we headed down to meet some of Linde's work friends who have been very supportive.  Linde, then had the idea to go to Friday's Front Row at the ballpark and Nate thought it was pretty cool to watch the men cleaning the field after the monster truck rally they had over the weekend.  Tonight, he decided on Corleone's cheese steaks for dinner.  I know he still has Chuck E. Cheese's on his agenda, so we will fit that in somehow.  Wes asked tonight, why Nate always gets to pick what we are going to eat.  I explained that we need to get Nate whatever he wants for little while, until he gains more weight, and Wes was very understanding.  He has been such a great big brother to Nate.

Nate finally finished his neuro psych evaluation, after no less than 5 visits from the psycologist.  He really just wasn't in the mood to deal with her questions most days.  He started calling her the "pointing doctor" because she mostly went through these big books and asked him to point to different pictures.  After 5 days of testing, she came back with her final evaluation.  Nate is very, very smart.  Well, duh!  We could have told you that 5 days ago.  I have the full written report but basically it says "very advanced" and "very superior" all over it.  Nate's IQ came up as 135, and on the IQ assessment she administered, 128 and above is considered "very superior".  What can I say?  He's pretty special.

We have an official transplant date now.  The process will begin on 2/6.  He will be admitted on 2/9 and the chemo drugs will start on 2/10.  We have decided to drop out of the study and only put Nate through one transplant.  We truly feel this is the right decision for Nate and will never look back.  We just don't want to put his little body through any more of these drugs than he truly needs to beat this.  We really feel that one extra round of high dose chemo with stem cell rescue (stem cell transplant) will only do Nate more harm than good.  If Nate's disease had a different presentation, we would possibly be making a different decision, but we are making what we feel is the best decision for our son, in his own unique situation.

So now, we are trying to feed Nate as much as possible and build up his strength as much as possible in the next week, and also have as much fun as possible.  Nate has big ideas, and unfortunately no energy to go with it.  This is what Nate would like to do this week.  Play baseball, basketball and tennis; play goofy golf, go to Chuck E. Cheese, see a movie in the theater, and climb to the top of a tall mountain.  Right now, Nate can barely walk from one end of our house to the other before he tires out and needs a nap.  So, we hope to go to Chuck E. Cheese, see a movie, and maybe play goofy golf with the help of a stroller. This morning Nate told me that he isn't sick anymore and that he doesn't need to go to the hospital anymore.  I explained to him that he will have to go back to the hospital soon because there could be tiny cancers in his body that we can't see and he has to get more medicine to find those cancers and get them out.  He repeated this several times today, to different people.  He's just so smart and cute, we can hardly stand it.

I watch Nate struggling to move and it kills me.  Then, I count my blessings again.  The neuroblastoma world seems to have exploded with bad news over the last few weeks.  My heart aches for these families and children (some I have met, some I have not) who I have come to love.  With all that Nate has been through, he is smart and strong and he is beating this.  He may be completely beat down compared to what he was two months ago, but he is so far ahead of where he was, even a week ago.  Wes is thriving in Kindergarten (the picture above is him dressing up as a 100 year old for his 100th day of school party) and Ellie is just the happiest, sweetest baby ever.  Chris and I have been able to take some time for us, we are all home together right now, and I'm going to enjoy every single minute.