06/09/2025
Update on Delainey: It's hard for me to keep everyone updated these days. I'm exhausted, in all areas of life. I'm only working part time so you'd think I'd have a little extra time for things like this. Negative. Right now, we just moved in with my boyfriend of a couple years, bc I just can't afford it on a part-time income as a single mom. So that's keeping us busy. Emptied my house, now slowly unpacking.
Delainey started back to school around the end of April....3 days a week, about 3.5 hours a day. She was extremely nervous at first, but after the first day, she loved it and couldn't wait to go back! She's been doing great, and the school and her friends were amazing. Her last day was May 29th.
She had her 3 month MRI follow up on May 16th. We left the appt with good news that nothing was needed, as in no radiation or anything. However, the next morning, her neurosurgeon called and said he was shown some images that he didn't see the day before that showed some regrowth of the tumor and they said she would need to start radiation immediately, to hopefully avoid another surgery in the future. We went for our information appointment and practice session May 27th. It seemed much more intense than I had originally thought it would be. She will go every day for 6 weeks for about 20 minutes each day, M-F. It will equal to 30 treatments. Unfortunately, they said they don't think this will get rid of the tumor. Radiation is to just hopefully keep it from growing bigger. This will be our only shot at radiation as she cannot do another round, because it will make her go blind. They are very hopeful that this round will zap it and keep it from growing and either shrink it or keep it the same size that it is now. However, if it does grow, she will need another surgery in the future 😔. She will go for weekly MRI's to make sure the tumor is still in the same place so that they make sure they are hitting the exact spot during radiation, followed by a weekly oncology visit. This equals to 7 appointments a week, not including opthalmology appointments to make sure the swelling behind her optic nerves are good and sodium checks or endocrinology appointments. (Plus appointments for the other 2 when they arise and my own 😮💨) Short term side effects are fatigue being #1, hair loss where the lasers will shoot which will be on each side of her head, skin irritation or sunburn, and nausea. Luckily, I have help. Between her dad, me, her dad's gf, my sister, and my bf, we should be covered on visits. She definitely has a big team behind her!
Her first treatment will be June 10th and her last treatment will be July 23rd. And her final MRI will be August 22nd to see what the radiation had done.
She is nervous, scared, and anxious, as we all are. But my girl is so strong and brave and this whole journey has made her even stronger and more brave. Today is brain tumor awareness day so I thought it would be the perfect day to post an update. Please keep my girl in your prayers as we face this next chapter. I've included our venmo if you would like to help out in that way as well. Thank you everyone! https://venmo.com/code?user_id=2313421647249408541&created=1749433024
🧠 💜🫶🙏
I've included some pictures of things we've been doing the last couple months.
Also, side note: she will be leading the 4th of July Parade in Delaware so keep an eye out for her!
