November 11th and 12th

Tuesday November 11th

Today was our first full day out of the ICU.  Unfortunately, due to Nick's condition, we were transferred to the oncology floor.  Most of the patients here are in the similar situation as Nick.  A lot of them are undergoing chemotherapy and are therefore susceptible to infections.  Nick is quarantined to his room until some tests for viral infection come back negative, but that shouldn't be too long.

A good portion of the day today was spent having a bone scan done.  The scan itself is very similar to an x-ray.  The most difficult part was when they had to insert another IV in order to inject the radio-active dye into his system.  The reason for the bone scan is to make sure that the disease has not spread beyond the central nervous system.   It is pretty rare for this to happen (less than 5%).

By the end of the day, Nick was wiped out (as were all of us).  Today it was 1 full week from when we started on this crazy journey.  We all spent the night watching Elf which actually got a couple of laughs out of him.

It seems like our lives right now are ruled by percentages,  every decision we make, every treatment option, every test.  Nothing is for sure any more, so we take it all with a grain of salt, knowing that there is very little that we can actually control right now.

Wednesday, November 12th

Today saw much progress on the rehabilitation front!  Nick was able to have physical therapy for about an hour.  He managed to walk up a flight of stairs and down the hall, to the gym.  At the gym, they worked on eye/hand coordination with throwing balls and playing perfection.

For those of you who know Nick, he is a very active child, playing baseball, football, swimming, or just running around.  I can't imagine the frustration he must be feeling throughout all of this.  One of the exercises they gave him was to throw a beanbag into a large mesh bin about 3 feet away.  It took every ounce of strength just to complete this seemingly simple task.  After the 3rd try, the poor kid just broke down.  I am sure he was thinking, hey, 1 week ago, i could run, throw, do whatever...all i had was a bad headache some time.  Now I can't even walk without someone holding on to me.  How did this happen!  My heart just broke for him.  After some consoling and a pep talk (I told him that he needs to be able to do all of these things if he wants to get home any time soon), he set about the task of getting stronger.  Whenever they would ask Nick to do something 5 times, he would do 7.  If they told him 10, he would do 12.  You gotta love his spirit.   Later in the day when we were meeting with the doctor, Nick managed to get out of bed, walk to the bathroom, take care of business, and even wash his hands before returning to bed.  This is pretty amazing given the fact that he hadn't walked un-aided since the surgery and he still sees at least 2 of everything due to his vision impairment.  I am sure he was scared to death, but his determination kept him going!

The results from the bone scan appear normal.  There was a spot on both femurs that they believe to be scarring from football.  They took regular X-rays just to be sure.  It was nice to finally get some positive information for a change and we all sighed in relief.

So for now, we are working on getting stronger and HOME.  It is looking like we will be spending another week or two at CHOP's in-patient rehab center so that Nick can get intensive (4-5 hours a day) rehab.  We are just waiting for a bed to open up over there and then we will move yet again.....I look at it as graduating.