We went "Upward" alright. After much debate and resistance on my part, I decided to entertain Christopher's desire to move up North, to New Hampshire where I grew up and the majority of my family and many friends are. Chris was never a big Florida fan and has always preferred the cold over the sun and surf (yes he really is my biological child!). I had promised him at one point during his first year of treatment when he wanted to move to a colder climate that if he had a relapse and his prognosis became poor, we could move somewhere he preferred. Of course I thought that would be Alaska, Northern California maybe...but in addition to the colder weather, Chris also wanted to be near family and friends. I have to admit that as big an adjustment as this is, (for me anyway), I am glad that he persisted in talking me into making the move.
We have already been to Children's Hospital Boston/Dana Farber Cancer Institute where Christopher will be treated. So far we are both very happy with his Oncologist, Dr. Janeway and her initial opinion. This past week he had another chest CT that was reviewed by a board of surgeons from the Boston area. I do not have the official word on what they saw other than a brief message from the Dr. saying that it is still not a good idea to attempt surgery at this point. His lesions remain stable but because they are small and in an area that is difficult to reach they prefer to wait. Again, the type of surgery required to remove the lesions is quite invasive. The oncologist here as well as the ones in Jacksonville told us that it is likely he will continue to grow tumors in his lungs because of the aggressiveness of the original tumor, how quickly he relapsed and his poor response to chemo. Given this it is best to wait until it is absolutely necessary before going back in.
Chris is no longer taking the chemo pills at home. Dr. Janeway believes his body needs a break from them and if need be he can always go back on. She said that after the relapse there really is no chemo that effectively treats his disease and it is not even certain that the pills have been slowing down the growth of the tumors. By stopping the medications it will give Christopher's body a chance to get stronger as well as determine if they actually help stunt the growth process. Chris was very happy she agreed to stop the chemo as it now means he will start to grow back his hair...one of the side effects of the chemo that he was not happy about. Given the 2 feet of snow that fell in October and the chilly November temps, a full head of hair is important!
We have several appointments in the next couple weeks in Boston to meet with his Oncologist to review the opinion of the surgery board , do some blood work and also meet with a general surgeon as well as an orthopedic surgeon. Thankfully my dear friend Debbie has graciously been accompanying us on the many appointments and being a Bostonian from way back has made navigating the very busy medical area much easier!
So far Christopher is happy to be in a colder climate and is enjoying being surrounded by family and friends. He already got his wish to romp in the snow I have a feeling there much more of that to come!
Wishing everyone a very blessed and happy Thanksgiving. We certainly continue to have a lot to be grateful for.
With much love and peace, Patty
This poster was displayed in the lobby outside the lobby of the Florida Times Union Building naming Christopher as the Profile Patient for Wolfson's Children's Hospital and special guest at the Florida Forum. The photo in the poster was taken at a Jacksonville Sun's game where Christopher threw out the first pitch.
This is Christopher and I at the reception after the Florida Forum. Mr. Koppel was very down to earth, quite funny and his speech was as entertaining as it was informative.
