The end of a long, long week

I am happy to say that today was a much better day for Nick than yesterday.  His agitation and frustration, while not gone, was much less than yesterday.  I think we are all coming to grips with the entire situation.  

Today Nick graduated to the oncology floor from the Intensive Care Unit.  This is a major milestone on many fronts.  The biggest being that he is now free from the numerous wires, monitors and IV's that have burdened him for the past several days.  I can only imagine how liberating it must have been for Nick to be rid of all of these things that were an invasion of his personal space.  As a parent, this means that Nick is stable enough to not have to be monitored 24/7.  The ICU is a very difficult place for parents.  While in the ICU, patients are monitored continuously for heart rate, pulse, oxygenation, blood pressure, etc.  The problem is that every time Nick would get irritated, upset or sometimes just rolled over, alarms would start going off.  This is very unnerving at first since you automatically start thinking something terrible is happening.

Nick was able to walk a fair amount today with a little help.  I am still in shock that a little over a week ago I was cheering Nick on while he made a tackle by dragging someone down in the backfield and now I am cheering him on for taking 5 steps to the door of the room.  Deb and I keep looking at each other wondering how we got here.

So where do we go from here?   Well, here is what we know so far.  The tumor was a medulloblastoma.  It also appears that there is an additional tumor located in Nick's spine.  This now moves Nick from the average risk category to the high risk category.  Nick will have to undergo a spinal tap to confirm the tumor in his spine and a complete bone scan to make sure that the tumor has not spread beyond the central nervous system to his bones (this is very rare, but possible).

The course of treatment for someone in Nick's situation is a combination of radiation therapy and chemotherapy.  The radiation therapy will begin the week following thanksgiving and will require Nick to undergo treatment every day, 5 days a week, for 6 weeks.  After radiation therapy, he will have a 6 week break before beginning his chemo treatments.  He will receive 4 treatments in total.  For each treatment, he will be required to be in the hospital for 2-3 weeks, with one week home in between.  This is due to the fact that these treatments will destroy his immune system and he will be very susceptible to illness.  To help boost his immune system, they will use a technique called stem cell rescue.  The week before thanksgiving, Nick will spend 3 days in CHOP having stem cells harvested from his body.  These cells will then be re-introduced into his body after each treatment to help give his immune system a jump start.  Once his cell counts are up, he will be allowed to come back home until the next treatment.

So if you have followed all of this, we are all in for a very long 7 months.  I have provided you with the reader's digest version.  For those of you that are interested in more details, feel free to check out the following link.  

http://www.abta.org/sitefiles/sitePages/D3A2C571CD0CDE16C0FFE57607F22A65.pdf

So, I would say that this Blog is appropriately named.  Nick's road will be a long one, but one that will be lined with many friends and relatives cheering him on every step of the way.  Our family is very grateful to everyone for their support and love.