For the past few years, Leah has wanted a “Cancer Sucks” t-shirt. I had a list of reasons why she couldn’t have one.
“Sucks” is not a nice word.
We need to think positive.
The other moms and dads will think we’re bad parents. (Always a good card to play.)
But a few months ago, I finally caved. Now, a navy blue t-shirt emblazoned with white letters hangs in her closet, awaiting the next negotiated appearance. The truth is, it’s an ugly word, but fitting. Cancer sucks.
Leah had an MRI last week. The tumor is stable, meaning it hasn’t changed or grown since her previous images; however, there is still a significant blood supply to the tumor. This tells us that radiation did not cause it to die-off, as we had hoped. The last instance of growth was nine months ago, and this is typical for ganglioglioma. It grows slowly and sporadically. Months and even years can pass without progression.
Currently, Leah is not receiving treatment of any kind. We have exhausted chemotherapy and radiation, and there aren’t any other proven treatments available.
While I’m embarrassed to admit this, prior to being thrown into the fires of cancer, I had a wildly idealistic view of cancer treatments. Find the best doctor, research your options, and select your treatment. If only it were that simple.
I’ve learned that the best doctor is not the most knowledgeable or most experienced, but a person who is a good listener, compassionate, and dedicated. I’ve learned that medical research reports can be misleading for two reasons: dishonest authors and human variation. Finally, I’ve learned that people “qualify” for treatments, rather than “select” them.
Many of the new treatments featured in the media are available to a very small population of patients, and they are only accessible by qualifying for a trial. Age, tumor type, previous treatments, and the availability of tumor tissue only name a few of the qualifiers.
Immunotherapy, such as the poliovirus, is at the forefront of cancer research; however, it is not yet an accessible type of treatment for cancer. Most new therapies are being developed for aggressive, fast-spreading cancers. Therapies tested in adults are not always suitable for children. And new treatments can have grave consequences.
A wise doctor once cautioned me, that if you look long and hard enough, you will find a doctor who says what you want to hear. So for now, we are not desperately searching for a secret cure that’s eluded the masses. Instead, we are resting easy with the report that the tumor is stable.
In the beginning, killing this cancer was at the top of the list. Today, the focus has shifted. Today, we focus on living our best life. Leah still attends physical therapy twice a week to improve her strength. She’s definitely made progress this past year, but the gains are slow. There are days when she feels well, and other days are complicated by pain and fatigue.
She’s still attending school using the VGo, and despite her medical condition, she’s had a solid year of academic growth- a huge accomplishment in my book.
Leah’s next MRI will be in October, at which time she’ll be fourteen and a half years old. When I think about the fact that all of this started when she was only eight years old, I’m sincerely overwhelmed with admiration for Leah. The past six years have been a long, difficult road. My little girl has shown more strength, bravery, and perseverance than I ever imagined a young heart could hold.
And she has most definitely earned the right to call it like it is.