[ecb220]

After 2+ years of poking, prodding, testing, treatments, medications, hospital stays and countless emotional roller coasters, my mom is finally heading to transplant at the end of January at City of Hope outside Los Angeles.

She had breast cancer in 2004, and during her 6-month checkup in November 2011, they found her platelets were at 22k. It took about a year and a half and consultations with doctors at Stanford, UCSF, CoH, Rutgers, and Summit (where her hematologist is based), she was diagnosed with MDS. She decided to go forward with a transplant because she had previously been treated with ATG, rATG, Soliris (they thought she had PNH for a while), and nothing has worked. She has 2 (!!) 10/10 sibling matches, and she and her older brother go in tomorrow for the first round of testing. She is 65, he is 70.

Our family is based in the Bay Area, about a 6 hour drive or 1 hour flight from City of Hope. She considered going to Stanford for her transplant, but ultimately decided that she was much more comfortable with the level of care and personalization at CoH (Stanford seems to have their procedures and stick to them; CoH is tailoring her pre-transplant treatment to her based on what she's already had the last 2 years).

Beyond all the other physical and emotional complications, this is going to be difficult logistically. My mom does not have a partner, so caregiving duties will be split between me, my sister, my mom's siblings (who are in Ireland), and various friends. I'm hoping to talk to a social worker at CoH this week that can give us more information on what to expect, and possible options for part-time (overnight?) care once she is released from the hospital. (CoH keeps you in the hospital until about day 30, then you go to an on-campus studio apartment until day 100).

So... at least for myself, I'm scared, excited, anxious, and hopeful. The usual mix that I know everyone here has experienced. If there are other non-partner caregivers out there, or folks who have had a transplant at CoH, I'd love to hear from you.

Thanks for reading, and for being a great source of information for us all.