Katie Coleman: In honor of Rare Cancer Day, I’d like to honor and tell you all about a dear friend of mine MG.
Katie Coleman, Founder of Chromophobe and Oncocytic Tumor Alliance (COA), shared the following on Twitter:
“In honor of Rare Cancer Day, I’d like to honor and tell you all about a dear friend of mine MG. MG was diagnosed with a rare type of kidney cancer SDH-deficient RCC at a young age. We found each other in a support group and became fast friends, bonding over our shared circumstances.
We were both the youngest patients in our stage IV group and both had difficult tumors to classify that were behaving strangely.
We both had similar presentations and tumors, had symptoms that had been brushed off as anxiety due to our young age, and had started on similar treatment plans.
From day one we were walking similar but separated paths. We supported each other from waiting rooms and through sleepless nights as we both underwent second opinions and continued diagnostics. I’d eventually end up diagnosed a metastatic oncocytoma (single digits reported) and she’d end up with SDH-deficient RCC with an incidence rate of 0.05–0.2%.
While we kept being met with an unimaginable amount of uncertainty and a whole lot of “we don’t know”’s, “we’ve never seen this” or reminders around every corner that we were in unchartered waters- we knew we weren’t sailing alone. We had each other.
Unfortunately, MG and I’s stories took very different paths. About 6 months in, I made it to a very large surgery to remove my tumors. An option I knew she at the time had wished she had herself. We were hopeful but no one could say with any degree of certainty if that surgery would buy me more time and in the days leading up to it, I almost backed out.
But once again, MG was there to support me. Right before being admitted for surgery, MG sent me a care package, with a blanket she handmade, and a decorative sign that said YES YOU CAN.
I knew how much she wished she could trade places with me in that moment and her reminder kept me pushing, even if I didn’t feel like I could do it, I had her reminding me, YOU CAN.
After I made it through surgery and my prognosis shifted for the better, I stamped her reminder into a ring that if you’ve ever seen in my pictures and videos, I wear on my right hand every day in honor of her and as my reminder, I can do hard things.
After that surgery MG’s and I’s paths diverged but our bond never wavered. I’d eventually make it to no active cancer while MG kept fighting new tumors and searching for treatments. MG ended up passing while I was at conference, advocating for kidney cancer and where I had meetings set with researchers to learn more about the hurdles in studying rare cancers, including the limited access to cell lines and tissue.
I didn’t get an ounce of sleep and cried the entire night through when I learned of her passing. The next morning I was unsure if I should still attend the conference not knowing if I could make it through without breaking down. But research was so important to MG, I knew she’d want me there. I slipped on my ring with her reminder I can and I showed up. Keeping the meetings which deepened my learnings to further advocate and amplify research for rare cancers.
During one of the last sessions, I received a call from MG’s dad, asking me if I’d made a video for MG’s service sharing our friendship and if I’d help announce MG’s donation of her tumors to research widely to help others one day. I was truly honored.
MG and I supported each other every step of the way and I promised her family that support would be continued after her passing. Sharing her story and her desire to contribute to research whenever I can.
So in honor of Rare Cancer Day and MG, I ask you help us share her story and the need for research for SDH-deficient RCC.
This information, her name and post was shared with permission and encouragement from her family. Missing you MG and thank you for the reminder, WE CAN make a difference.”
Source: Katie Coleman/Twitter
