"The Running Stones" team was created in honor of our sweet Stone to raise awareness for Hemophilia and the amazing work happening at St. Jude. Many people don't realize that St. Jude doesn't just treat children with cancer but other "catastrophic" illnesses. While we don't view Stone’s Hemophilia as catastrophic, we are so grateful to have the best treatment in the world in our backyard.
For most of this last year, St. Jude was a part of our daily routine. Either going to St. Jude for bleed treatments, check ups, surgeries, in-patient stays, fevers, CT scans, prophylaxis treatments, IV access, or just emailing our care team with questions. It was all a whirlwind but we truly feel like we are starting to get a grasp on Stone's hemophilia, thanks to St. Jude. We now give Stone's infusions twice a week at home. This raises his factor levels to that of a "normal kid" for about 4 of the 7 days of the week. This gives all of us the freedom to let Stone be the wild child he wants to be. If he has an injury, we will give him extra doses as needed and we are just aware of the days when his factor level is low. Now that we have our port, a treatment takes about 20 minutes and Stone hardly cries anymore. This is a HUGE change from what could take multiple hours of screaming and wrestling with the IV access. We are having some major port love in the Day household these days. I stick Stone while Barrett holds him down so we aren't even at the mercy of home health nurses schedules anymore. St. Jude has given us the tools, education, and independence to be the leaders in Stone's care... and it feels amazing. Life is good. God is good.
The future is so bright for our baby boy. With all of the research being done at St. Jude, the potential for gene therapy or at least less painful, longer acting shots are on the horizon.
All of this to say, treating Hemophilia isn’t cheap and we are so fortunate to know that we will never receive a bill for the treatment he receives at St. Jude. The daily operating cost of St. Jude is $2 million, and approximately 75% of that is funded by our donors. We want to do more than run. We want to help run St. Jude Children's Research Hospital. Every member of our team is committed to raising funds as a St. Jude Hero while we train for our race.
Join us as we help run St. Jude.