A strange twist of events

It has been a few days since we last posted.  A lot has happened since then, but to make sense of it all, we need to go back about a week or so.

About a week ago, while we where still at CHOP, we were asked to participate in a study comparing the effects of photon radiation therapy to proton radiation therapy.  It turns out CHOP is building a proton therapy treatment center that will be ready in about 9 months.  This got us thinking that maybe there is an alternative treatment that might be worth exploring.  If CHOP is willing to spend $100 million on a new facility, there must be something to it.

It turns out that proton radiation therapy is relatively new.  There are only 5 sites in the entire US that can perform this type of treatment.  One is at Mass General, another in Jacksonville Fl, one in Bloomington Indiana, a fourth in Houston and lastly, one in Loma Linda, California. 

While the overall result is the same, the advantages to the proton therapy are that there is less damage to surrounding tissue and organs.  Standard photon therapy applies the radiation to the tumor site, but continues to emit radiation through the body as it exits ( a focused beam that continues in a straight path).  Proton Therapy, has no exit and the radiation can be conformed to the actual tumor site, thereby minimizing the side effects that may be caused by high dose radiation to the surrounding tissues and organs.

This sounded like a win/win for Nick, so we began to contact the facilities at Mass General and Jacksonville.  Here is where we started to run into some logistical problems.  Nick's treatment plan required us to begin radiation treatment no more than 1 month after surgery.  This meant that we had to begin no later than December 5th.  In addition, the clinical protocol we were enrolled in called for standard radiation therapy, not proton therapy.  A waiver would be required from the principal investigator at St. Judes Hospital in Tennessee.  All of this was happening during the week of Thanksgiving making it a near impossible task.

Our first choice was Mass General since both Deb and I are from the area and we still have family there.  Several individuals worked diligently throughout the week to see if they could get us into Mass General, but unfortunately, timing was not on our side.  The facility was booked solid and we could not get enrolled in time.  We would like to thank everyone that exhausted their contacts on our behalf.  We truly appreciate the effort.

Our next choice was the Florida Proton Therapy Institute in Jacksonville, Florida.  This is a relatively new facility with 3 treatment rooms.  Nick's information was sent overnight to Florida and reviewed by their Physicians.  The good news is that they could take Nick, the bad news was that since it was now the wednesday before Thanksgiving and they were closed until Monday, they were not sure if they could begin until at least December 10th.  It turns out that the setup time to make the molds, and design the treatment takes several days.  They said it may be possible to start sooner, but they could not guarantee anything.  We both felt strongly that this treatment would be best for Nick, so we asked for a variance on the treatment start date.

On Saturday, we loaded up the car and drove the 14 hours to Jacksonville.  We rented an apartment in Jacksonville for 2 months and hoped for the best.  Our appointment was yesterday and all went well.  The folks at the FPI are great.  The physicians, physicists and staff all met yesterday and put together a plan that would hopefully have Nick starting his treatment on Friday, December 5th, right on time.  We are hopeful that everything will work out for this to happen.  The amount of dedication and support shown by the folks at FPI is quite special as they were able to take what is usually a 2 week process and condense it into less than one week.

So Deb and Nick are now in Jacksonville with Nick ready to begin his treatments on Friday.  Samantha, Peter and I flew back home last night and are holding down the fort here.  We will all be making frequent trips to Jacksonville over the next 2 months, but we are confident that this is the best thing for Nick.