A mother should never have to look into the eyes of a doctor and hear those words, “Your daughter has cancer.” And then explain to her precious little girl why she must take medicine that makes her violently ill, or why she must get excruciatingly painful shot.
I’d heard these words and more, –and each time I hear this very touching story, it brings tears to my eyes. It is my hope that this extremely personal account will raise awareness, and leads to finding a cure for all cancer, making it a thing of the past, so no little girls or boys will ever have to go through what you are about to read. Here is what my daughter-in-law writes:
“Weeks before my seventh birthday, I started feeling extremely fatigued. I would literally sleep all day, every day. My parents were concerned, so my mom took me to my primary care doctor’s office for an appointment right before close. My mom came in to the doctor’s office saying that I needed to be seen right away because I was tired. The nurses thought she was being overprotective and a little nut since it was about eight at night and her six-year-old daughter was tired. Luckily, my doctor agreed to see me. He drew some blood and the results pointed to Mono. My doctor sent my blood off for further testing and we went home thinking that all was well. Fast forward a bit, and two weeks before my birthday my parents get a call from my doctor. The news wasn’t good. I didn’t have Mono, after all. I was then diagnosed with Acute Lymphocytic Leukemia (ALL)
If you are to get Leukemia, ALL is the one to get. It has the best survival rates (over 90% for children) and, I believe, the treatment is less strenuous than other kinds. In other words, I was lucky to be diagnosed with ALL.
I underwent chemotherapy for about a year and a half. I like to say that I had an easy time with chemo, and I was fortunate enough that my Leukemia was fairly easy to treat. I was considered to be in remission after only a few weeks of chemotherapy, though the chemo did have to continue to ensure it didn’t come back. I have remained in remission since that time without any instance of relapse.
Even though I say that I had an easy time with chemo, the treatment is never easy. My body, and my brain, blocked a lot of what was happening so that I don’t remember most of it. Now I know that this is my body’s way of handling trauma. I remember very nasty medications, such as prednisone, that I couldn’t swallow without throwing up unless it was concealed in jello or fruit rollups. I also remember having to get a periodic shot in my leg. This particular shot needed to be injected directly into the bone of my leg. I also had to endure various surgeries and procedures that were not, for lack of a better term, fun.
Even though my treatment went fairly smooth and my Leukemia journey was “easy,” I still have some long-term side effects from the medication. I have tinnitus, a constant ringing in the ears, that started when I was in my pre-teen years. This is a common side effect of chemo. I also have significant acid reflux that was caused by the toxic chemo drugs I was taking. The acid reflux has scarred my esophagus, and the scarring has gotten so bad at some points that it was also scarred shut. I have had to have multiple esophageal dilations since I was about ten. The muscle tone in my ankles is weaker than is considered normal for a woman my age. Lastly, I am starting to develop peripheral neuropathy in my feet. Currently, the sides of each of my big toes are slowly starting to lose feeling. In addition to those, I believe I developed PTSD from my treatment and have significant memory gaps from that time in my life. There is also a chance I could experience infertility because of the treatments, though I don’t think the chances of that are very high.
I don’t tell you about all my current medical issues to gain sympathy. I think it’s important for people to understand that there can be devastating consequences to children going through such intense treatments and having to take such toxic medications.
I am currently 28 years old and as healthy as most women my age. I just started training to run my second half marathon with The Leukemia and Lymphoma Society’s (LLS) Team in Training (TNT). For TNT, we fundraise money that goes towards cancer research. This is important because it not only allows us to become that much closer to an actual cure, but it also helps develop more effective medication that have fewer long-term side effects. In the last two years, 40 new medications have been developed for the treatment of cancer, usually three or four are developed per year. Of the 40, 35 of them were funded directly through LLS. These treatments have even been effective in other cancers and diseases (breast cancer, MS, etc.)”
Some of my inspiration to write this up-lifting story about The Lion of Tupungato, came from my daughter-in-law. And so, with great anticipation of finding a cure for all cancers, a portion of the book proceeds will be donated to Leukemia and Lymphoma Society.
The trinket I took from this experience, which I’ve used in my new book; when the trapdoor of life falls out from under you, and you’ve got nothing to stand on, where is the safely net, who is there with a helping hand to pull us back out. The Lion of Tupungato playfully beckons its readers to question, “Where do you find your strength?”