We’ve been living it up over here! We’ve been home for several weeks and have been trying to enjoy it - spending time outside, grilling, playing. B and I have still been working 2ish days a week each. Somehow both our employers are still super understanding and are okay with that. It’s what we can manage for now.
Being home with both the kids for Mother’s Day wasn’t something I was anticipating but it was beyond wonderful. We had a nice, normal day as a family. We hit the farmers market, lunch, and ice cream, and then spend the afternoon playing in the yard and grilling for dinner. Perfect. B and I even got to go out to dinner just the two of us the night before. We checked out this authentic Mexican restaurant and inn. It was incredible. Best churros of my life. Oh, and I taught myself how to do embroidery? I made that little thing for my mom in whatever down time I’ve managed to find. It was really fun & relaxing. I think I’m gonna try and make something for Holden to hang in his room.
Last night I ran a 5k with my niece — she is a part of an organization called Girls on the Run and they trained for a 5k which took place last night. She was going to run it with my brother, but he’s been having a health situation also, and couldn’t do it. I was so excited she asked me to go. We got rained on, and we got muddy, and it was amazing.
Tomorrow brings a new chapter in Derrick’s treatment: radiation. B and I painstakingly considered every single option, from no radiation to whole brain radiation. We considered two opinions from both our primary care team and a team at MSKCC, a very highly renowned cancer center in Manhattan. After a lot of discussion, thoughtful consideration, and many tears, we landed on a decision. So Derrick will be getting two weeks of targeted photon radiation to his inner auditory canal — this approach should minimize chance of relapse from the one remaining mass in his auditory canal while sparing him from some likely devastating cognitive side effects that radiation to his brain would bring.
Radiation over the next two weeks will be once a day from Monday - Friday. We will have to drive to the hospital every morning (2 hours each way) and he will go under anesthesia every morning. We considered staying at the Ronald McDonald house during our outpatient radiation treatment but with sleep being so precious, it will probably be best for Derrick and us to sleep in our own beds. We will see. Keeping fingers crossed that we’ve made the right call and that he won’t have awful side effects. It’s low dose. But it’s radiation. Scary.
After the 2 weeks of radiation, we will go back to the hospital for inpatient admitting on/around June 2 for transplant prep. Actual transplant day will be June 9 or 10. It’s going to be a long journey, and probably a difficult one, but it’s his best shot at long term health and remission. There’s nothing we won’t do for this little guy.
A belated happy Mother’s Day to all the incredible moms I’ve met through this silly site. You all inspire me daily. Whether you’re a mom or not, I’ve met some awesome women here. You are important to me. 💕
