Upcoming BMT for my mom
I've been a longtime lurker on these forums but I'm making the jump to member and poster today!
My mom - 64 years old - has been ill since November 2011, without a clear diagnosis. She's been given ATG, rATG, Solaris, IVIG, and any number of other treatments. She recently got a "2nd" (more like 4th) opinion and was advised to move forward with a bone marrow transplant.
She will be doing the BMT at Stanford at the end of July. It hasn't been scheduled quite yet - many tests still to go - but she has 2 (!) sibling matches, so we're assuming one of them will be the donor.
I've read many threads here, and have seen so much useful information and advice. My mom and whole family are glad there is finally a firm diagnosis and a path to move forward... something to focus on. At the same time, I know I am terrified. There is still so much that is unknown - i.e. we found out they will do the BMT as an outpatient procedure and send her "home" (to a rented apartment) on Day 0 - and scary to think about.
At this point, I'm mostly curious what advice you'd all give to a caregiver that has about a month to prepare. My parents are divorced but still close, and my sister lives nearby as well, so we have a good support system in place and will soon be negotiating days off work so we can provide my mom with the care she'll need, etc.
Thanks for reading, and thank you all for posting. I'm sure there are many others like me who've read these forums for a long time and draw strength from them, even if we are mostly silent.
Will you be able to attend the One-day Patient Conference in San Francisco on July 20? That sounds pretty close to the target date for the transplant, but it would be a chance to learn a lot in a single day and meet some of the people who have traveled similar roads. My wife and I will be there and would be glad to talk to you. Perhaps the doctors there, all experts in bone marrow failure, will be able to make some sense of your mom's struggle for a diagnosis.
Is your mother in pretty good health overall? I hope so, because that helps lead to transplant success. How fortunate that sibling donors are available - twice as many as you need!
It sounds like you and your family are taking a sensible approach to this, preparing to make yourselves available and asking questions.
I hesitate to say that you should read a bunch of stories about the transplant experiences of other patients, because each patient's story is different and you don't know that problems another patient encountered will be problems for your mom. But I'll say it anyway - reading the stories of others helps familiarize you with the terminology, some of the commonly used drugs and procedures, and shows you that even the most successful cases tend to include some ups and downs.
Some people your mom's age want to know all the details about their medical care, and that's great (bring her to the conference if she's up to it). Others may want family members and doctors to manage their care and keep track of everything for them. You know your mom best, so try to judge how much of the details she wants to have and whether she should be the one to take notes on what the doctors and transplant team say, or whether you or your sister should be the recordkeepers. Since you've been at this for months, you probably have a system worked out already.
As the transplant date approaches, Stanford should give you printed information such as a checklist of what your mom will need with her, diet and nutrition guides, and so on. It's all very useful, but specific to that hospital.
Thanks so much for your response Neil. Lots of great and helpful information in there. I had originally thought the July 20 date would not work, but we got some new information today and the BMT has been pushed back.
My mom had another biopsy last week and Stanford got the slides yesterday. It is essentially the same as her biopsy from March (no progression to AML), but her cellularity is at 70% so the doctor would like to do 3 cycles of Dacogen first. Her blasts were 5% in March and 2% last week. Strangely her platelets have been rising (21k today - highest in a long time), HGB holding steady, etc. Other than the MDS, she is in good health.
We're all still in a bit of shock at the delay - if nothing else, the timing is terrible as my sister is expecting her first child in mid-October. We'll lose her as a caregiver to my mom, though we're gaining a grandchild as a "spirits lifter." One or both of my mom's siblings will come to help too, so we have a good support network in place (and the extra months gives us more time to get it all squared away).
Once the decision had been made to do the transplant, we were hoping to get it started as quickly as possible - so it's taken the wind out of the sails to be pushed back. But from reading everyone's experiences here (and from our own experience over the last 18 months) I know the whole process is such a roller-coaster. Two steps forward, one step back.
I think that's it for now. Chemo already scheduled for Monday - five days in a row, one week a month.
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