Goodness gracious, it's a good thing I write everything down because I'd never be able to remember all the information being thrown at us! Today was another one of those really long days at the hospital, although I'm sure it's nothing compared to what's ahead.
Today we met with two of his doctors to review & discuss Ray's current status & what lies ahead. Plus he had to sign many consent forms. We met with the pharmacist to go over all his meds that he's currently on plus the many other meds that he will soon be placed on & the reason for them. Most important is the anti-rejection drugs that he'll need to take for a couple of years. We also met with the Clinical Trials Coordinator of the Bone Marrow Transplant Research department who explained a clinical trial they are currently working on. Of course they would like Ray to voluntarily be part of that trial regarding a drug that has shown some very positive results with preventing rejection in various organ transplants. The clinical trial would test the drug's ability to also have similar positive results with bone marrow transplants.
It's now just two weeks until the transplant. As we sit in the Bone Marrow Transplant waiting room, we overhear many stories & see folks that have already gone through a transplant. So far most of the stories are positive & give us hope. We hear the talk of the hard parts but they all usually end with words like "It DOES get better over time".
We did learn that the 30 days of hospital isolation is not confining Ray to his room. He will be permitted & encouraged to take daily walks in the halls, but he can not leave that area of the hospital. That whole unit that he will be hospitalized within is kept separate from other parts of the hospital & is strictly monitored. The unit has special air filters & other special measures to keep it more sanitized. He will be allowed visitors but they must not have any signs of illness & will be required to follow strict instructions when around him. Flowers & plants are not permitted in the room.
They tell us that if Ray does really well & his blood counts rebound quickly, there is a possibility that he could be released sooner than the thirty days. That makes me a little nervous thinking he wouldn't have that 24/7 'professional' nursing care where they monitor so many things. But if he becomes depressed & antsy, then home might be better in the long run.
We were told that although the previous three rounds of chemo did not cause him much distress because he didn't really experience the usual side effects of it, this next dose is much more powerful & that he will most certainly experience many bad side effects. (Hair loss, nausea, mouth sores, extreme fatigue, etc.) Normally those issues don't start showing up until about a week after receiving the chemo. He'll probably feel really bad for approximately 2 to 3 weeks before the new stem cells start taking over & doing their job. Then he should start feeling better. Better but not good yet. That will take quite a bit more time.
He will be admitted & started on the chemo April 21st. The chemo will be administered for four days. On the fifth day he gets to rest & then on the sixth day (April 26th) he will receive the donor's stem cells. So April 26th (Day zero) is when his new birthday is. And it's springtime - a time of re-birth...
No comments:
Post a Comment