Hearing the words "significant decrease" from Benjamin's oncologist in relation to his cancer following his CT scan was definitely what we were hoping for and I'm so grateful that we have that to hold on to. Still, I haven't been able to shake this nagging gut feeling that the news next week will be a second phase of induction (intensive, weekly chemo).
If I'm being honest, I feel as though I was set up for disappointment. Before Benjamin's final chemo treatment in this first phase of treatment we met with the fellow assigned to his case. As he was leaving the room he said that based the past six weeks of exams he had no reason not to believe that the cancer would be 99.9% gone.
That was something I only shared with David prior to receiving the preliminary results from Benjamin's oncologist because it made me feel so many things. Superstitious that if I shared that with anyone else it wouldn't be true. Hope that he was right. Fear that he was wrong and what that would mean for B - not returning to school, not seeing his friends and family because he'd still be significantly immunocompromised, continuing weekly hospital visits, etc. Anger that the way that percentage had been delivered by the doctor felt flippant. Comfort that surely a doctor at one of the world's best children's hospitals wouldn't instil false hope in a parent whose child was battling cancer if he wasn't damn near certain that he was right. Added anxiousness around receiving the results - I know I have much further to fall if we are told Benjamin wouldn't be graduating to Maintenance just yet. Logic in that in the grand scheme of what I know will be a very full life, six extra weeks of Induction is a drop in the bucket (even though the thought of it right now feels heavy, feels like an eternity).
As we wait a week, seven long days for answers, I'm grateful that I have been working with a psychotherapist who has been incredible at helping me to reframe the way I think, to help quiet the negative noise. When I start going to a dark place, when I start to spiral, she suggested I stop to ask myself, "What do you know right now? What information do you have right now?"
What we know right now is that the doctors have seen a "significant decrease" in Benjamin's cancer. We know that the odds are in our favour in terms of survival. We know that his case is being examined by three of the world's most experienced LCH oncologists as well as a skilled radiologist. We know that his medical team is doing their due diligence before communicating to us the next steps that will give Benjamin the best possible odds of a full recovery in the long run.
I will be holding on to the information that we have as we move through this waiting period, especially as it's all positive as it possibly could be. That said, I can't shake this feeling in the pit of my stomach and unfortunately something else I know is that my gut instincts are rarely wrong. And so we hope because we have been given every reason to.
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