Gavin and I, and Bubby and Da went to hospital this afternoon to meet with the neuro-onc team about yesterday’s MRI. I am happy and relieved to report that the scans of his brain and spine came back clear! There is no better feeling than knowing that this cancer has not returned and that I can now shelve that terrible feeling of dread until January. I think the doctor on service was supposed to call me last night – at least, that’s what I understand from talking to our contact nurse. For every other scan, we’ve heard from the team either by email or phone that the scan was clear, so I was terribly worried that they were bringing us in to deliver the bad news in person. Sigh of relief, all is well. It was a short two-hour visit to clinic, everyone is pleased with Gav and we celebrated with seasonal pumpkin lattes and cookies afterwards.
Such emotional turmoil. On the one hand, I want to believe, truly and with my heart, that all is well, because I know that negativity isn’t helpful. But, then on the flip side, I want to be prepared for the worst, so I can’t help running the various scenarios through my mind, how I will react, what I will say and do. I will be stoic. No, I will fall apart. No, we will fight again and win. Swinging back to positive thinking, I have no reason to believe that Gavin has suffered a relapse, he exhibits no symptoms of such and we are very watchful.
The AT/RT community world-wide is small. I only really know about the children who are treated in North America, and I have been so saddened, of late, by the many relapses suffered by these little fighters. It seems almost weekly that I read of another child who has returned to treatment or succumbed to the disease. And unfortunately, in many cases, these children appeared to be entirely well just prior to discovering the renewed tumour growth. The problem with relapse and brain tumours, is that you very quickly run out of options. Surgery may not be possible again, due to the tumour’s location or size. If a child has received large amounts of chemo and radiation, it may not be possible to go down the same road again, as radiation is not a treatment that is always repeatable, nor is high-dose chemo.
When thinking of all of this starts to wear me down, I choose to focus on the kids who are doing very, very well, and continue to do so years out of treatment. I must remember too, that we are not truly an AT/RT family, we are in this extremely wee group of CRINET kiddos, so there’s not really a lot of data to say how this disease progresses. I must continue to believe that my Gavin will be well, that one day we will be standing proudly at his high school graduation, and university graduation, and raising glasses of champagne at his wedding.
For now, I tell him: You are such a strong and healthy boy. Your pictures looked great.