I’m very lucky to be related to a really wonderful woman who has sent me some excellent advice over the last 38 days. She is a writer, a photographer, and a cancer survivor, herself. Since we received the news of Elsa’s remission, I find myself revisiting something she wrote me:
One challenge that all cancer patients (and their families) face is dealing with what is known rather than succumbing to the fear of what MIGHT happen. What MIGHT happen exists only in your head. It is not reality. So when it grabs you by the throat, just give yourself a mental hug and say, “Awwww, poor baby. You’re scared, aren’t you?” Being scared is not a nice feeling. Be sympathetic to yourself, because often you don’t share that fear with everyone.
Yes, Elsa is in remission and that is wonderful news. Yes, I am boundlessly thankful for her speedy response to the first month of treatment. There are moments though. Moments where I get stuck deep down in what MIGHT happen. What MIGHT befall my sweet, small one. I read a blog about another little boy with ALL who was told he was in remission on Day 29. Then, days later, they came back and said, “Sorry. We made a mistake. You are actually sicker than we thought and you need a bone marrow transplant immediately.” I know, I know. This is where you tell me to “Stop reading those damn blogs Georgia!”
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When Elsa was first diagnosed, our doctor and his team sat down with us for two hours to go over what MIGHT happen. Having an airline pilot father, I can’t help but imagine Dr. Parikh as our captain, making announcements over the loudspeaker:
“Welcome aboard folks to Flight 300, traveling from Acute Lymphoblastic Leukemia into the unknown future. We are happy to announce that there is a very good chance you will exit the plane in two and a half years with a cured child in your arms [everybody on board cheers and claps enthusiastically!] Before we take off, please direct your attention to the flight attendants at the front of the cabin as we go over some of the safety regulations on this aircraft. There are some serious risks associated with flying our airline, but, unfortunately, the risk of not flying is certain death. [everybody on board groans]. While myself and your cabin crew will take every precaution necessary to ensure your safety, please prepare yourself for the possibility of: learning disabilities, partial paralysis, blindness, brain damage, severe allergic reaction, severe kidney damage, and death. . .”
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I know I’ve already said it, but Elsa’s total 180 degree turn around this week has been wonderful. The majority of this week, I have spent enjoying our time as a renewed little family. We have spent an inordinate amount of time dressing up dollies, playing peek-a-boo, reading books, singing “Head, Shoulders, Knees and Toes,” and affixing stickers to every surface in the house. From time to time though, I’m struck by a sudden need to return to our treatment protocol binder and furiously search the internet for what’s next. What new drugs will she have to take? What horrible side effects will they bring? I have brief moments of horror where I look at her and realize, this is nowhere near over.
Then I realize I am getting caught up in what MIGHT happen. And this is not reality. I cannot know what MIGHT happen. I cannot anticipate how she will weather her future treatments. I can only know that, today, Elsa wants to dress up in a winter hat and three different bathing suits all at once and then laugh maniacally over her clever choice of outfit. So today, wearing a winter hat and three bathing suits: that is our focus. And tomorrow, whatever we MIGHT face: That hasn’t happened yet.
Always dressed to impress.
