I came back to Boston today. Ryan has now completed all of his high dose chemo, and 4 of his 7 total body irradiation sessions. He's experiencing continual mild nausea, but it seems to be under pretty good control most of the time. He's gotten a lot of naps. Feels weak, but not especially tired.
And he looks good!! The smile is back. His color is good - although the nurse says that TBI patients tend to look like they've been on vacation in Florida, i.e. slightly sunburned. He ate some Cheerios & milk, followed by chicken fingers and bacon.
He still has intermittent severe headaches, which no one seems to know the cause of. The doctors asked him lots of questions about the headaches today.
His blood counts are good - his WBC is down to 1.6, but his red blood cells and platelets are completely normal (RBCs live for about 120 days). His nurse pointed out that many of their patients come to them "transfusion dependent" after aggressive chemo, and require lots of transfusions throughout. From what he sees in Ryan's labs right now, he anticipates that he probably won't need any transfusions until next week.
All in all, he looks worlds better than I though he would at this point. We're still early in the process, but so far, so good.
He is getting excellent care on the transplant unit. I could feel my suppressed (well at least partly suppressed) rage dissipate after I saw him.
There is a family from Chandler, AZ, staying in our hotel whose 4 y.o. adopted Chinese daughter is at Childrens Hospital for heart surgery. They don't know if her heart can be repaired or not - a previous attempt in Phoenix failed. They have 4 older "made in the USA" kids and 2 Chinese daughters - very similar to our family. The whole family is here to surround Ivy with love while she goes through all the tests, procedures and surgery.
I read their blog tonight (sammonsfamily7.blogspot.com), and I was sobered and chastened. I have a 23 y.o. son who most likely will survive, and I've been on a three day pity party, mad at the whole world. Mary's blog about her daughter is all about choosing joy. I have a lot to learn........
---Barb
So happy to read that Ryan is doing so well and you are decompressing as time goes on. Maybe there is a bit you can learn from Mary, but there's a ton we can all learn from you! Don't sell yourself short here, girl!
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