05/09/2026
Day +79
Being back to our "life" is really hard. I am super depressed. I just don't know how to act anymore. I got a new job that I absolutely love, but I worry 24/7 about Kolten. Like, tonight he got a nosebleed and my palms started to sweat and I wanted to take him to the ER. He said he was fine and it stopped, but my gosh, watching your child nearly lose his life over something you cannot make better, is absolutely THE hardest thing I have done as a parent. And I have been through a lot. A LOT.
All he wants is to be a normal teenager again. He won't be "normal", as he isn't going to school, prom, etc. We are trying to get back to our "normal", but it isn't happening as fast as I had hoped. And ohhhh my mama heart.... he was supposed to meet a girl last Friday for ice cream, he showed up, and she didn't, then blocked him. I was so pi**ed. Disgusting behavior for someone old enough to know better. But it's life. Her loss. My son is an incredible young man that has conquered so much in his 17 years.
We came to Houston last night for his and Koah's appointments today. His appointment went very well, still doing amazing! Numbers look good, and so does he! He will get his PICC line out next Friday, YAY! He will be starting a maintenance chemo, that he will, more than likely be on for 1-2 years, called Gilteritinib. It is the best one for his FLT3 mutation he had, so pray that helps and he never relapses! He will also be getting a bone marrow biopsy within the next few weeks, and in a couple months, start his immunizations.
My 5 year old grandson, Brekyn, had an issue with his scanner for his pump (he is type 1 diabetic) today. We scrambled and luckily, were able to have a new prescription sent to a nearby pharmacy, but insurance wouldn't cover it, but at least he is ok!
Then Koah. Oh this girl. Her hospital is in Galveston at the Shriners Children's. She got a new brace, but still seems to be in a lot of pain on her right hip. She refuses to put any weight on it, so we also have a follow up for her next Friday, for x-rays.
Thank you all who have prayed, donated money, whatever you have done. We truly appreciate it. It is now $92 to fill my gas tank, and it uses a full tank each way from our house to Houston, so every penny helps, it truly does.
https://gofund.me/bec219559