June 22, 2006
Well things aren't moving so quickly with the immune therapy afterall and at this point we're not sure what will happen next. In order to officially enroll Curtis on the immune therapy study, he needed to have another round of scans as one of the criteria for the study is that tests results be no older than three weeks. Curtis had those tests last week. Here's the thing -- ALL of his tests, including the bone marrow biopsy which tested positive for disease just a few weeks ago, came back negative! This appears to be great news on the surface. The study doctors consider Curtis to be in "remission" again and won't accept him into the study as a result. The reality is however, that a small amount of disease was found in his body just a few weeks ago and we can't breath easy knowing that.
Dr. Johnston and the study team feel it would be beneficial to have another bone marrow biopsy. Curtis is having this test done today. Results will be back in a week, and if positive, Curtis will again be eligible for the study and would be scheduled to begin July 10th. Should the results come back negative, he will be closely monitored and retested in one month.
We have so many conflicted feelings about all of this. One moment, a huge sense of relief and excitement that the disease has not spread and Curtis can go back to enjoying his life. The next moment, fear and impatience kick in. When will it come back? Why can't we just get moving on immune therapy and give Curtis the best chance he has to be cured now?!
This is now the third time that we've been down the dark path of possible disease progression, and somehow, Curtis just refuses to give in to it. He's such a fighter, and has an inner strength beyond our wildest imagination. We feel truly blessed to be his parents!!
June 19, 2006
June 05, 2006
It's Back
Just a few days ago we shared the wonderful news on Curtis' test results. Last Friday morning however, we were given some devastating news that changed everything. Our worst fear has come true. The cancer has returned. The bone marrow sample taken from the right side of his hip is showing new signs of disease. The MIBG (specifically to test for the presence of neuroblastoma), MRI and bone scans all looked fantastic. But in our excitement to share the news, we forgot about the final bone marrow results that had yet to be received. We learned the results of that last test in what was supposed to be our end of treament meeting with our oncologist Friday morning.
It's a painful reminder of how hideous neuroblastoma is, preying on young innocent children, often going into hiding during remission only to resurface again later even more agressively. We are deeply saddened by this and what may lie ahead but we also have reason to be hopeful. The doctors want to begin an immune therapy that shows a lot of promise. They are extremely optimistic that Curtis is the ideal candidate for this study as his disease is very minimal at this point and has not spread. We're also optimistic and believe strongly in Curtis being able to fight this disease yet again.
It was heartbreaking inside giving the news to Curtis. He has gone through so much. To make matters more difficult, Friday was to be a very special day for Curtis at school. He was one of the recipients of the Positive People Awards for personal responsibility at Arklan. We are so proud of him. Julie and I felt that we could not take away this special day for him and did not tell him until the following day. He was obviously saddened by the news initially but being the amazingly strong boy he is, he recovered quickly and is taking the positive attitude he always has taken in the past.
So we will head down the road of treatment once again, thankful that this was detected early and that we have an amazing hospital like CHEO that we can depend on to give Curtis the absolute best treatment and care anyone could ask for. The exact timing of things still need to be ironed out but I'm sure things will move quickly.
On a related note, the CHEO telethon which took place over the weekend, raised almost 5 millions dollars. Always emotional to watch the televised event, but especially so this year given our history with CHEO and the road ahead.