All is well, Dylan is doing great, no longer in the hospital, turns out it was just a virus of some sort. Jennie had her surgery on her ankle, I have been staying with her to help her round the house, this Friday hopefully things will look good at the orthopedic appointment. We sadly lost Marissa on Friday 13th…we send all our love to the family who we knew fairly well over the years at RMDH. This disease travels so god damn fast once it kicks off, it’s terrifying. Our friend Sean at RMDH also relapsed while on the same drug combination as Dylan. It spread so fast, surgery was needed and in 3 weeks from the last scan it had rapidly progressed at an alarming rate. Sean just hit the 4 1/2 year mark with his Neuroblastoma. I sit and hold my breath as Dylan approaches his 4th year next month on the 26th. Out of 5 kids I know that are on Thalidamide and Celebrex, 3 have relapsed. It is supposed to keep things stable, but this disease is so complex that it only works for some kids. So far so good with Dylan, but I know it’s only a matter of time, with each month of having this cancer increases his chances of it taking off like a rocket. Yes I know Dylan may be the first kid ever to live with stable disease for the next 30 years, but I also know the chances of that are slim. If they don’t find the silver bullet soon we are all going to run out of time. All I know is to take each day as it comes, every morning is a blessing and should be treated as such. I know that we have to wait until the new vaccine therapy or humanized antibody gets released, we have come so far that we must keep going forward.
