Halfway There

This past week we had several reasons to celebrate. The obvious of course was being home for the Christmas Holidays, but we will get to that soon. The best news of course is that right before we left Florida to come home, Nick had his 15th treatment, which officially puts him at the half way point of his radiation treatments! This brought a very large smile to his face has we rushed out of the hospital to catch our flight home on Christmas Eve.

The week prior, Peter joined Nick and I in Florida while Deb and Samantha spent the week at home cramming a few weeks worth of shopping and holiday preparation into several days. The anticipation of going home for the holidays was definitely peaking as the two boys were literally bouncing off of the walls of the apartment. We managed to keep ourselves busy going to the zoo, the park, the beach and the highlight of the week, the Thursday night football game between the Jaguars and the Colts. Being true New England fans, we weren't so much rooting for the Jaguars to win, as we were the Colts to lose. We had a great night, even if the Colts did win.





When Nick wasn't having his treatments, we tried our best to take advantage of the balmy Florida weather. Most days, it was in the high 70's, which allowed us to head out to Jacksonville beach and play some football, build sand castles, and just wander around. While it wasn't quite warm enough for the water, it was still pretty nice. On days that we didn't feel that adventurous, we would head to the local park to throw a ball around, or play some basketball. On one particular day, we were joined by several local kids, and quickly a pick-up game of basketball ensued. It was great to see Nick running around and gaining some of his confidence back. For the past several weeks, most of Nick's time was spent with family or close friends, so it was nice to see him interacting with other kids and just being himself again.



Finally the big day had arrived (Christmas Eve)! Our appointment was at 6:30am, so that we could head right to the airport after his treatment and head home for the Holidays! Thankfully, everything went well (which is very unusual for air travel these days) and we were home right on time. All 3 kids made the Nice List again this year, so it was a great Christmas Day.

Unfortunately, our brief respite at home is now coming to an end. We leave for Florida bright and early tomorrow morning. As great as this weekend was, we know it is very difficult for Nick to leave. We just keep reminding him that on Monday, he will be more than halfway done and that much closer to coming home for good.

Thanks again to all who have helped this holiday season to make this a very special holiday for Nick and for all of us.

A Little Break in the Action

As most of you have noticed, there has not been a post in a little while.  The reason being is that there has not been a whole lot to report (which I might add is quite a good thing).  Nick's treatments have been going well.  Today he completed treatment #7 of #30, which means that he is now more than 20% done.  Yes, Deb has used this as a learning opportunity.  Nick gets to put a dime into a bag after every third treatment, so that he can continue to work on his fractions.  Deb and Nick are easing into a routine that consists of breakfast, going to the park for some exercise (hitting golf balls, throwing a football, etc) and then off for his treatments in the afternoon.

Nick and Deb were able to come home this past weekend for a short stay.  To say that Nick was thrilled, would be an understatement.  Needless to say, we tried to cram in as much holiday fun as we could.  Friday evening, we picked Nick and Deb up at the airport and went to the KOP mall for our annual picture with Santa.  We came home to a beautifully decorated christmas tree (Thanks to all who helped decorate, making ornaments, etc).  It was a great surprise for Nick and a beautiful addition to our home.  Since it was already dark out, we were not able to look at each ornament, but Nick was out there at 7:30am the next day reading each one.  I have included some pictures here so everyone can see how great it turned out.

Saturday was spent shopping at the mall (an annual tradition where I take all the kids to shop for Deb...makes for some interesting gifts) during the day and caroling in the neighborhood during the evening.  This too has turned into a yearly tradition.  This year, the kids led the way with singing and musical instruments (a nice new addition to our troupe).  

For those of you that we were fortunate to see this weekend, you will no doubt agree that Nick is doing remarkably well.  Even the staff at the hospital here in Florida are impressed.  When Deb told them that Nick had his surgery in November, they all thought it was November of 2007.  They are amazed that he can get around as well as he does.  I credit his strong will, along with a motivated mom, helping him everyday.

Nick and I flew back to Jacksonville this morning.  Deb is going to hold down the fort at home while I get to spend some time with Nick.  Today was the first day that I got to actually see how the radiation treatment works.  As Deb said to me, it truly is something out of a Robin Cook novel.  Nick is taken into a large room with a table in the middle of it.  Nick has to climb up onto the table and lie face down.  His forehead and chin are on a rubber pad and a mesh mask (which was form fitted to his head) is placed over his head and secured to the table so that his head it completely immobilized.   He has to lay like this with his hands by his side, without moving for 45 minutes.  There are several adhesive discs on his back with markings which help them line up the radiation beam with lasers.  Once he is positioned, the table is rotated into the large circular machine (like a giant donut), which then rotates around his body applying the radiation beam to his brain and spine.  Most children require anesthesia for this treatment because they are not allowed to move at all during this procedure.  We obviously did not want to have to have Nick undergo anesthesia every day for 30 days, so we talked to Nick and told him that we would need his cooperation.  The first day was pretty tough since they had to do a simulation prior to the treatment to make sure everything was set up properly.  This increased the time to 90 minutes ( a long time to lay motionless).  Now he has become comfortable (as much as you can) with the whole procedure and usually he will fall asleep during it all.  We are continually amazed at how he continues to maintain his composure and spirit as he continually faces new challenges.  We have never been more proud of him.

The beginning of PHASE 2

Our hats off to the Florida Proton Therapy Institute (FPTI).  They were able to compress a 2 week process into 4 days!  Nick was able to start his treatments right on time yesterday, removing one of the hurdles we faced in this whole ordeal.

Nick had his first radiation treatment yesterday and all seemed to go well.  Because of the compressed schedule, they had to combine the simulation and the treatment.  This meant that the normal 45 minute procedure ended up being close to 2 hours.  While this doesn't seem too bad, you have to realize that Nick had to remain laying face down, strapped onto a table, with his head completely immobilized for the whole time.  It was pretty uncomfortable and I know he was in a lot of discomfort, but when asked if he needed a break, he would respond that he wanted to keep going and just get it over with.  I do not think that there was any real pain from the treatment, just discomfort from the position he was in and I am sure a lot of fear.

The treatments will now continue every weekday for the next 6 weeks.  In between, Deb and Nick will fill their time with school work, work-outs at the gym and field trips to various places around Jacksonville.  They have already been to the zoo, and I am including some pictures from that trip.

The kids and I have joined them in Jacksonville this weekend and we are looking forward to relaxing and taking in some of the holiday activities in the area.

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.