Many people have heard the story of triumph that came after my cancer diagnosis and treatment. It’s the inspirational one I like to share on stages, that leaves everyone (myself included), emboldened with gratitude for life and feeling as though we can accomplish anything. It’s a great story, and it’s a true story, but it’s a story that came with a lot of scars that I haven’t often focused on publicly.
As we move into this phase of life doing IVF with genetic testing to ensure our future kids do not face as many cancer related obstacles as I did/will, I wanted to take some time to share some more private, honest truths about what cancer has meant for my life. These stories are the reasons why we’re aiming to avoid the 50/50 chance of our child having Li Fraumeni Syndrome. We’ll start with my first cancer diagnosis.
It goes without saying that a child usually does not anticipate having cancer at any point in their life, let alone in the 2nd grade. I was a busy kid (I’m a busy adult, too), and adored being outside (still do). For the first week with the ache above my left knee, my parents and I assumed I pulled a muscle. The second week, the pain got worse – and was more aggressive at night. I iced, took ibuprofen, and rested whenever I could. Week three brought tears, intense limping/hobbling, and my teachers regularly asking me if I needed to go to the nurse. There are three core memories of that week that have always stayed with me:
- At Home Treatment: At one point, we put Icy Hot on my leg with hope that would ease some of the discomfort. As soon as it activated, it felt as though my entire leg was on fire. Likely because of how sensitive the nerves were at that time in my knee, the effects of the heat then cold were unbearable. I ran frantically around the house crying, unable to sit still long enough to even wash it off.
- A Broken Femur: The morning of March 11, 1998, I was taking the two block walk to our school bus. I made it one block before my knee buckled on me – effectively bending backwards. I fell down on the side of the street right there, and sat on the curb for a few moments catching my breath. We already had a doctor’s appointment scheduled for later that day, so I stopped and made a decision. I could go home, and just sit there, or I could try to get to the bus and do a half day at school. I opted for the bus, and somehow made it on with tears running down my face.
- Serious Doctor Response: I walked the rest of that day on what we later learned was a shattered femur. That was a 8/10 pain, as I later lived my way into some 10/10 pains that have given that day the 8/10 spot on my scale. When I hobbled into the family clinic, I could feel lots of eyes on me, and already knew, even at 7 years old, that we were in some serious trouble. After the x-ray was posted outside the door, the entire building was silent while the team looked at it – I’m sure none of them had ever seen this before.
In 3 weeks I went from a “healthy” kid, to a kid with a “terminal illness.” I never walked on my leg again, and was admitted to the hospital two days later to start 42 weeks of some of the most aggressive chemo used across all types of cancer treatment (not just childhood cancers) for a very aggressive type of bone cancer.
The credit to saving my life goes almost entirely to my family medicine doctor in our small town. Osteosarcoma is diagnosed in about 1,000 individuals per year in America, and of those, about half are children. The subtype I had was telangiectatic osteosarcoma, which makes up less 4% of osteosarcoma diagnoses. The likelihood of getting this cancer in the United States is .000012%, or 1 in 8.3 million. The greatest predictor of survival is early detection, and we’ve been told that even a few more days without chemotherapy would have changed my personal prognosis drastically.
The overall prognosis for telangiectatic osteosarcoma remains grim for most. In a recent study, at five years post diagnosis, 48.2% of patients had survived, but that number dropped to a mere 20.6% by ten years after diagnosis.
This being said, reason number one for pursing IVF is that we never want our children to experience these core memories, and we never want to face the risk of what just a “few more days” could mean.
You can help us on our journey to having another healthy child by sharing our story with your networks to ask them to follow along, and by donating directly via Go Fund Me or by check (just shoot me a message to ask for the best address). I’ll be posting more in coming days and weeks on my blog to share more of the journey that got us to this place.
Link to Go Fund Me: https://www.gofundme.com/manage/fund-ivf-to-prevent-cancer-for-our-kids
Because Love Wins,
Shanna
This week I got the opportunity to spend time with a host of people who I adore. Sometimes, when life takes away things that we loved so dearly, it gives us the opportunity to be mor
the best kind, even if they involve years of not seeing one another. I heard that lunch dates and facebook chats and late night texts are what keep us uplifted.
Because Love Wins 