Another week has gone by and he continues to have good days and bad moments.
Overall, I think he's been feeling ok over the last week, but he has taken lorazepam several times and has gotten sick a couple times. He hasn't had much of an appetite and a couple days it took him several hours to eat a breakfast sandwich because he could only take small bites. He walked with Darrin & I during Trent's soccer practice 2 days this week, but he had to take several breaks. We were just happy he went along and was able to walk some. It's really the first he's been out of the house since he's been home.
Today we went for his clinic check-up (he only needed labs - no chemo) and his levels look good.
WBC ⬇️4.4
HEMOGLOBIN ⬆️ 10.3
PLATELETS ⬆️ 322
NEUTROPHIL ⬇️2600
We learned about the next phase, Interim Maintenance II and it will begin on Tuesday, 5/21. For the first time since we started this journey in September, we do NOT have a clinic appointment next week. It will seem weird to not go into clinic for over a week. He does, however, have an infectious disease appointment on Thursday at the mid-town location, so we're not going all week without seeing a doctor! At the ID appointment, we should learn if he can be finished the 24hr antibiotics on 5/20. That has been going well, but it will be nice when he doesn't have to carry his man purse (murse) around.
Interim Maintenance II lasts for 57 days and should be finished by August. He will only receive treatment and have clinic appointments every 10 days except for days 11/12 & 31/32 where he'll have back to back chemo appointments. He will receive 2 lumbar punctures and will get the asparagenase chemo 2 more times -this is the chemo that caused the clotting. He will continue on blood thinner until this phase is over and they can remove his PICC line. He also receives 2 other types of chemo through this phase. He's had all of these chemo's before. The one is a lower dose of methotrexate like he was hospitalized during January and February for. The dosage will slowly increase each week as long as he's tolerating it. That chemo causes nausea and vomiting and mouth sores, but hoping since it's a lower dose, the side effects are less 🤞
He has decided to not attend the sunshine kids hospital trip to Texas. The trip is the first week of June and he just won't be in the right spot with treatment. I am a little disappointed because I think we would have had a lot of fun and enjoyed Texas, but it's his decision and I understand why he chose not to go. There could be other options. They take a trip each year, so there's always next year!
Speaking of next year...now that we know the date IM II is starting, we can officially say that his end of treatment will be May 21, 2026. Maintenance lasts for 2 years from the date you start IM II. That seems like forever away, but it's just nice to know there's a small light at the end of this long tunnel.
🧡🙏🧡
