Nick Takes Round 1

If this were a boxing match, it would be a unanimous decision by the judges that Nick took Round 1! Just 2 weeks after starting, Nick was able to come home. The average time is usually about 21 days before individuals cell counts have returned to a safe level. Nick managed to do it in just 14 days. Maybe it's the luck of the Irish (or that Deb was determined to be home for St. Patrick's Day!) or the fact that Nick remained active throughout his treatment and therefore was able to fight back harder than most. Either way, the doctor's were all amazed and we were thrilled.

We are now looking forward to a couple of weeks back home, with just day trips back to CHOP for tests and check-ups. Round 2 starts March 30th, so until then, we will enjoy the time off for good behavior.

Still Waiting

Today was the last day of chemo for the first round. today was also the first time that Nick's cell counts hit zero. This means that he is now neutropenic and does not have any white blood cells available to fight infection. His platelet count is also significantly decreased. Fortunately, his hemoglobin counts have remained high enough so that he has not yet needed a transfusion. We are hoping that will remain the case.

So now we wait and wait and wait. It takes 7-10 days for the stem cells to engraft and begin the process of re-populating his red blood cells, white blood cells and platelets. We have no idea how long it will actually take, but once his cell count gets up above 2000, he should be able to come home for a bit.

You might think that Deb and Nick would be pretty bored, but those of you that know Deb, will appreciate that their day is anything but boring. The day starts with breakfast, and then some school work. Mid morning, there is usually an art class or activity going on and then it is time for lunch. After lunch, Nick has school for an hour where he works with an in house teacher on his work sent home from Brandywine Wallace. After lunch, Nick and Deb do 16 laps around the hallways (this is equal to 1 mile based on Nick's pedometer). After his walk, he has either occupational therapy or physical therapy (today was yoga). Later in the day Deb and Nick will play games (we even have wiffle ball in the room), learn Spanish (they have the Rosetta Stone for Spanish) or do more school work before dinner. A pretty full day given the circumstances. I do have to say that even the staff is very impressed with the level of activity he is able to maintain throughout this entire ordeal. Deb is determined to make the most she can out of this all.

The other day, Nick had some very impressive visitors come by to say hello and give him their best wishes (actually they were their to visit all of the children, but he can dream). I have included a photo of Nick with his special guests. I can tell you he was not to keen on having to take the picture, but my guess is that in a few years he would kill for this opportunity again!

So everything is going as good as we can hope for. I will continue to provide updates regarding Nick's progress. Thanks for keeping us in your thoughts!

The Beginning of Phase 3 - Chemotherapy

On Monday, Nick went to CHOP at 6am to begin the next phase of his treatment. Deb and Nick braved the snow storm and drove into the city at 5 am for his 6am appointment. For those of you who were up at 5am, (hopefully nobody), there was amazingly a break in the storm and there was actually no snow for the trip to the city.

The first step was an operation to insert a Broviac Catheter. This catheter is inserted into a major vein located in Nick's Chest. This line will be used to infuse the various medications directly into his blood stream to be distributed throughout his body. The line will remain in for the next four months until all of the treatments are over.

After Nick recovered from his anesthesia, he came back to his room to recover and get ready to receive his first round of chemo treatments. We are happy to say that Nick has fared quite well during this first course of treatment. One drug in particular, amifostine, is supposed to be very hard on your stomach and almost always causes nausea. Nick managed to get through this with minimal sickness (about 95% have pretty severe discomfort with this drug). He has had some nausea, and no appetite, but today is a recovery day with no drugs and he seems to be doing better. On Friday Nick will get his stem cell rescue and we will begin the recovery period which could last up to 2 weeks. The past few days have been pretty hard. While the past 6 weeks were a nice respite, it is mentally difficult to be back in the hospital and feeling so lousy. To help with this transition, Deb had a great idea. Last week Deb took Nick to see a doctor who specializes in self-hypnosis. The idea is that through the power of positive suggestion, Nick would be able to create a place inside his own head where he could go when times were tough. It seemed to have worked as Nick was able to rest fairly peacefully during the worst of the treatment.

As I type, Nick is catching up on his homework so as not to get too far behind his class. I know that he misses school and seeing all of his friends and this is a way that he can stay somewhat connected to them all. If anyone wants to drop Nick a note, please feel free to send him an email at nickc27@comcast.net.

Hoops For Hope

The Hoops for Hope Event this past Sunday was an incredible success. Given the short amount of time to get everything organized, things could not have gone better....even the weather cooperated and the snow held off until later in the evening. This event was to raise money to benefit Children's Hospital childhood cancer research center. I am proud to say that in one afternoon, we were able to raise over $8,000 for this great cause.

While it is great to be able to raise this kind of money to help a worthwhile cause, I think it would be prudent to mention some of the other intangible benefits of such and event. First of all, I don't think any of us realized just how many people's lives we had touched over the last 13 years. To see hundreds of kids, almost all of whom we know, out there having fun and playing together was great to see. I also think that this event was helpful to all of the families who think about our situation, want to help, but just don't know what they can do. This was a way for everyone to rally, help out and be part of something a little bit bigger. I also know that this event had a profound impact on many of the children there. These children are able to connect with a peer who is going through a very difficult time and they are able to reach out and do something nice for someone that needs their help. I think that for some of these children, they are able to learn a very valuable life lesson about empathy, community and friendship. If I could say that there is anything positive that could come from such a terrible thing, it would be how our situation has touched so many people's lives and hopefully made them better because of it.

I would be remiss if I did not thank certain individuals for their tireless effort in making this event such a success. They were the inspiration behind the event and did EVERYTHING to make it happen. Thanks to Mary Ferrer, Eleanor McNulty, Mike Gallagher, Brian Manning and Brian Roselli, for taking time out of their very busy lives. I also want to thank all of the parents, teachers and friends who helped out all afternoon long to make sure that the kids all had a great time. And lastly, i would like to thank all of the individuals and local businesses that generously donated items for our auction and raffle.

Here is a link to the article in the Daily Local News about the event. Hoops for Hope Article

Here is a link to some photos from the event. Hoops for Hope Photos