If you’re not growing through your trials, you’re suffering in vain
I met Kellie online through an ACC support group last fall, shortly after my diagnosis. I was immediately drawn to her because we both shared a goofy sense of humor. I got my diagnosis on November 5th, and by December 12th, I was having surgery to remove half of the roof of my mouth, my 4 top left back teeth, and an inch of jawbone above those. We ended up having to stay in Portland, with our family of 4, for 3 weeks. The financial burden was incredible, and 10 minutes into the 6 hour drive home, my husband collapsed in a gas station parking lot from a back injury he sustained before my surgery in a car accident. Our daughter ended up saving the day and driving us all the way home. Kellie suggested applying for both types of assistance, but I applied only for the lesser amount normally granted to people who weren’t local to Kellie’s area. She said it wouldn’t hurt to try for both, though. I spent the next 9 months traveling 3 hours away on a regular basis for appointments with my prosthedontist. In all, my daughter and I spent about 100 nights in hotels between December 2013 and September 2014. By summer, I knew I would need to have another surgery to rebuild my jaw and the roof of my mouth, so I applied for the one time grant. I was overwhelmed when I got the check in the mail and found out we had been given a grant. It came at the perfect time to help offset the cost travel for my next surgery, because in September, I had a 9 hour reconstructive surgery that landed us in Portland, again, for 3 weeks.
We have medical insurance, but most people don’t realize the cost associated with distant travel those of us with rare cancers often face. In those 9 months we racked up about $30,000 in hotels, gas, and other travel expenses… which was a huge shock for my husband and I, who had always worked hard NOT to put anything on credit.
Sometimes, when you’re faced with a trial like this, the amount you’re given doesn’t even matter, as much as the fact that someone CARES does. I felt so blessed to have been given a grant at such a perfect time for it to be useful. My husband and I have a motto we’ve established over the past year: If you’re not growing through your trials, you’re suffering in vain. Getting to know people like Kellie and being blessed with a grant from Kellie’s Krew has made this difficult journey a little less strenuous. Thank you to everyone at Kellie’s Krew who keeps Kellie’s spirit alive and blesses those of us battling ACC by being a rainbow in our storm. God bless you all.
We haven’t don’t family photos in a few years, but here’s one of my family 3 or 4 summers ago and a current pic of me following my reconstructive surgery. They took an 8″, thin layer of my radius, cut it into smaller pieces, and stacked them to rebuild the inch of jawbone I lost where my 4 teeth sat. They placed a long plate on my radius in its place, and attached the bone to my jaw using a few metal straps and screws. Then they took a chunk of tissue and skin to cover the bone graft and close the hole in the roof of my mouth, as well as my entire radial artery, which they placed in my face/mouth to provide blood supply for the bone and tissue grafts there. I no longer have a radial pulse in my left arm, and the skin graft they used to cover the spot where they took the donor tissue failed, so almost 3 months post op and I still have an open wound in my arm, which has to be dressed until the new skin grows in. It’s a slow process, but I’m getting there… hopefully I can be bandage free by Christmas! I am extremely thankful to be able to eat and drink again without things coming out my nose. It’s amazing how we learn to appreciate such little things when they’re taken away from us! I am unsure whether I will be give just a few more years with my husband and children, or decades… but I’m making each day count as best I can, to make memories for my family, and to honor those who fought ACC, like Kellie.