07/11/2026
Hey Everyone 👋
Forgive me, I kinda suck at updating, and when I do, I feel like I write a whole book. We've been admitted to the hospital since Tuesday, and things get so hectic around here during the day, that I'm exhausted in the evenings and haven't had the energy to update.
On Tuesday July 7th, we were scheduled for an admission for a minimum of 4 days to start the next phase of treatment called Interim Maintenance 1, which includes High Dose Methotrexate (chemo), along with a lumbar puncture. This phase is 9 weeks long, and we will be admitted every other week. Ryder will spend more time in the hospital this summer than at home.
I had a feeling the HD MTX (high dose methotrexate) was going to be rough. And I was most definitely right. If you all remember, I've mentioned a few times that Ryder typically has a high heart rate than most kids. He is usually between 90-120. We came in Tuesday to the oncology clinic and his HR was 101, we got labs and they sent us on our way to get his lumbar puncture/ spinal. That's when they check his spinal fluid for any leukemia cells and put chemo in his spine. This has become a very familiar procedure for Ryder as he's had more than I can count now. He came out of his LP still sleeping like any other child coming out the OR and his heart rates were in the 50s, I was told it was normal for anesthesia to slow the heart rate down, but this was something new. I'd never seen his HR that low. He took 3 hours to wake up before we were taken up to our room where we'd be all week.
We got up to our room and they started 2 chemos. Vincristine and HD MTX at 9 pm, along with his chemo pill, Mercaptopurine. That's FOUR types of chemo in one day. It's insane. The minute they started the HD MTX, Ryder was beyond nauseous, dizzy and light headed. Along with his eyes hurting. The vincristine really messes with his eyes. That night I kept checking his heart rates and they were staying in the 50s even when he was awake. When sleeping they dropped down to 47. I was beyond uncomfortable with that and kept asking why his HR was so low. They kept reminding me, anesthesia, and that it's not dangerous low but still in normal range. His Dr did reassure me that she understood why I was uncomfortable, because she knows it's not Ryders normal.
A complete repeat the next day, nauseous, dizzy, eyes hurting, low heart rates. FINALLY, after the methotrexate ran for 24 hrs and it was finished Wednesday night around 11pm, we got his nausea under control and he was able to sleep more comfortable. They started a drug called leucovorin, which helps the healthy cells after methotrexate, to prevent neuro toxicity. MTX can most definitely cause neuro toxicity, along with the kidneys. So they've ran many many bags of fluids to try to get him to p*e as much as possible. Thursday we started seeing better heart rates and he started feeling much better, but still no explanation on the low heart rates, even after a EKG. And today, we had hoped of coming home but it didn't happen. His body has not cleared enough of the MTX for them to send us home, so we're stuck until that happens. We are learning this new curve/phase and now understand, pack more in the suitcases because you just never know when his body will clear it and we will get to leave.
Until then, Ryder is staying busy in the teen gaming room to stay occupied during the day. Hopefully we get better sleep when we get home, because there's no such thing as sleep in the hospital. Alarms and pumps beeping all hours of the night, nurses and techs coming in for vitals and meds. It's so exhausting 😩.
I'm thankful for all his nurses, but especially our favorite nurse, that we got to have today. I don't mean to pick favorites, but we absolutely have a favorite nurse when we are in patient.
As always, please keep Ryder and our family still in your prayers because we still need them. Ryder needs them, I need them, Jason's needs them, and the big kids need them. We are about to head into a rough storm for the next two months and each phase I feel like gets rougher and rougher. It feels like the nightmare that just never ends. If you see me in public, you see the brave fake smile I put on so not everyone has to see the ugly side of this. I might be able to hold a 5 minute conversation in public, but ask me on a deeper level about how Ryder is doing or how I am holding myself together and I will break down. This life isn't fair for Ryder and all we want is our healthy boy back and being able to do all the things any other 10 yr old boy is able to do. We've seen what prayer can do already, putting him technically in remission, but this chemo is so strong on his little body and it's heartbreaking watching him feel so sick, over the next 3 years. It's heartbreaking watching him not be allowed to ride his dirt bike, or play in the stream in our backyard, or go swimming in the creek, like all my kids have done since I can remember. It's heartbreaking watching him watch his older brother hop on his dirt bike and go ride in our trails like Ryder used to be able to do.
So until I get I the energy to write the next update, please just pray for us. 🧡🧡🧡