Our dear son Curtis who is six years old was diagnosed with Stage IV Neuroblastoma at age 4 on April 20, 2005. With a large tumor arising in his left adrenal gland, Curtis was placed on a tough treatment protocol which consisted of 6 cycles of high-dose chemotherapy, surgery to resect the tumor, a stem cell rescue transplant and 12 rounds of radiation. He reached remission in December 2005 following this treatment plan but relapsed in June 2006. He is currently undergoing hu14.18-IL2 immunotherapy. Curtis is being treated at CHEO in Ottawa.
| Recent Pictures |
Time flies when you're not at the hospital and yet again, I've fallen behind in keeping the web site up to date. Back in early October, Curtis finished round four of immune therapy after only one day of treatment. He reacted to the 50% dose so quickly we were concerned what the outcome might be if we continued with any more. Based on that reaction, and his reaction in round three, everyone felt it was time to seek the advice of the study chair as to whether or not Curtis should receive any further treatments and if so at what dose. A few weeks ago we sat down with our doctors to discuss just this, and the general consensus was that Curtis was most likely experiencing an allergic reaction to the IL2, and it would not be considered safe to continue with any further treatments. Although Curtis was technically eligible for two more rounds of immune therapy, we were all relieved by this decision and we feel confident it was the right one.
After a shorter than expected stay, and only one day of treatments this
time, we are now home from round 4 of immune therapy. Because Curtis retained 4 kilos of fluid over a period of three days in round 3, and
as a result ended up in the ICU for two days with fluid in and around his
lungs, our doctors felt it would be in Curtis' best interest to only receive a 50% dose of the hu14.18-IL2 drug this time around. We were quite anxious about this as it was obvious this drug was having a cumulative effect on his little body, and we weren't certain how this week would go. Still, with Curtis in remission,
this treatment is clearly working, and the general feeling among our
doctors, was the more drug he can get, the better. This was our feeling too,
until this week.
Curtis and Daddy at the 2006 Annual Terry Fox Run in Carleton Place.
So I've been really bad at keeping this web site up to date with the latest info on Curtis' treatment. I will try to change this going foward. It has been an eventful summer both in and out of CHEO for the Porter family, with highs and lows along the way. Curtis is now well into his hu14.18-IL2 immunotherapy treatments, having completed his third cycle a couple of weeks ago. It has been a bumpy ride at times but it has already paid dividends as Curtis' most recent scans between cycles two and three show that he is once again in remission. Words can't even begin to express the overwhelming feeling of happiness we felt hearing this news. We know the battle is far from over. Recurrent neuroblastoma is fierce and has proven far too many times how difficult it is to wipe out. Still, we are very excited that immune therapy may be the breakthrough weapon that turns the tide.
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!!
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.
It's been quite a while since I wrote an update. Sorry about that! Life has been keeping us very busy but in a good way. Curtis is doing fantastic and I guess we've been savoring that. The updates slipped as a result. Anyway, today is a particularly good day to give an update. We just heard back from CHEO regarding Curtis's quarterly tests that took place last week and everything came back looking great.
These test weeks Curtis has to endure each quarter are very draining. Curtis is such a trooper while the doctors and nurses poke and run scans on him over a 4 to 5 day period. Being put to sleep for an MRI is probably the most difficult part for Curtis (and for mommy and daddy too) and it gets harder for Curtis each time because there is a such a long break between scans. But it's over for now until we do it all again in three months. It really is a small price to pay to watch over this terrible cancer and keep Curtis healthy.
Outside of CHEO, which thankfully is most days, Curtis is enjoying life to the fullest. He loves senior kindergarten and is doing extremely well. His reading skills are exceptional. He had a special new friend Marisol who is a sweet girl that is in Curtis' class and also lives just across the street from us. The two are inseparatable. We've also enjoyed recent visits from Gran & Grampy and Aunt Heather from Nova Scotia.
Back in March, the whole family took a wish trip to visit the Bay Area in California granted by the Children's Wish Foundation. We had an amazing time visiting old friends and doing a whole bunch of activities that Curtis wanted to do.
I guess that's about it for now. Thanks to all of those thoughtful and caring people who have been following Curtis or just discovered our web site somehow and took the time to write us and ask about Curtis. It means a lot to us.
We took Curtis to see his first NHL game last night at the Corel Centre (soon to be named Scotiabank Place) to see the Sens take on the Sharks. Going into the game, Curtis said he was going to be cheering for the Sharks but after a trip to the Sensations store before the game and a new Sens jersey he suddenly began a huge Sens fan. The Sens played horribly but Curtis still had a blast.
