A day on the protocol with no chemo!
Daily numbers: WBC 1700 - no real change, but of course the doctors are seeing more details than we are - specifically what percentage of the cells are abnormal, and what percentage are "new". In all of us the marrow is constantly making new cells while the older cells are dying off. The number of new cells tells them how successfully they are suppressing his marrow.
And since his total WBC count is quite low, we can expect that the "easy" cells to eliminate are gone, and that changes in the counts at this point will be incremental rather than dramatic.
The tightrope walk of chemo - kill off the bad cells while you try to keep enough good cells to survive. In Ryan's case this means nearly wiping out his marrow to eradicate the leukemia cells will seriously impair his body's ability to produce not only normal white cells, but also oxygen carrying red cells and platelets which are essential to the body's protective blood clotting mechanisms. Thankful to live in a time and place where safe transfusions are available.
The nausea is still a problem, but seems to be fairly well controlled with meds. And heartburn comes and goes but is relieved by antacids.
Since he had no chemo today, Ryan thought he might sneak out to Panera just across the street from the hospital for lunch with us and some friends from Glens Falls. His nausea was under control and some Panera soup sounded good. He showered and then felt pretty exhausted. We briefly entertained taking him in a wheelchair with a mask, but his nurse pointed out that with the low counts it wasn't advisable to take him out.
So we got Panera take-out and Ryan enjoyed 2 bowls of soup and lots of baguette.
His spirits are good - thoroughly enjoyed his visit from Brad Ferland yesterday and from his Glens Falls friends today (sorry - I missed them and I don't have their names). They brought a Dali poster which brightens up the room - OK: I'm sounding pretty cheesy to Ryan and his artist friends. It does a lot more than "brighten the room". Dali is one of Ryan's favorite artists, and it's fun to study the poster and appreciate Dali's quirky sense of humor.
It's great having Wanda (Sophia's mom) here. She's in withdrawal having no one to care for after having full responsibility for her chronically ill mother for the past year, and being away from her 3 younger kids. I'm so glad she can be here for Sophia. Sometimes you just need your mom!!
MeiLin was uncharacteristically irritable after school today. She steadfastly denied that she was concerned about Ryan. But then broke down crying, saying that she can't even go see him (oncology ward policies discourage elementary age visitors because of the higher risk of contagious illness). So we went home and took a nap before her basketball practice, then I took the girls to the hospital. They were both really glad to see Ryan and enjoyed a short visit before I made them leave since it was late and they've got school tomorrow. I made them blow kisses goodbye from across the room. Then half way home, MeiLin said, "I didn't even get to give him a real kiss."
Tim's out of town tonight and will be back tomorrow. He's trying to study for his exam for one of the classes he needs to take for his board certification as a physician executive later this year. He took the course the last weekend of April, but it's been too hectic for him to study for the exam at home. Hopefully he'll be able to take it this weekend.
MeiLin has NYSSMA tomorrow. She will play her flute (Bach's Menuet, "How Gentle is the rain....") for a judge in the music competition. It's her first year playing and she's doing great, but a little intimidated at the prospect of playing and being critiqued..........
I just about fell asleep at the wheel today, so I've got to make getting some rest a priority. Off to bed with a grateful heart. I've thought about keeping a "gratitude journal" for years but have never gotten around to it. I guess this blog is becoming my gratitude journal.
---Barb
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