Heading to transplant 1/29

[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.

[Ruth Cuadra]

ecb220, I first want to congratulate you on being such a thorough and level-headed advocate for your mom. Seeking information and advice the way you and your family have been doing -- the number of hospitals you've checked out is astonishing in itself -- means you'll be ready as new questions and situations arise during the transplant.

I had my transplant at City of Hope in 1998. The technology and patient care have improved tremendously everywhere in the past 15 years, but I confess that I think your mom has chosen the best place for her transplant. One of the things that impressed Neil and me from the beginning is that each case is reviewed regularly by the whole transplant team so each patient benefits from the combined knowledge and experience of all of the doctors on staff.

Given that you are not local to the City of Hope, it's also a benefit that an on-campus apartment will be available for your mom. We stayed in one during the 5 days of my pre-transplant chemo and radiation treatments then went home when I was released from the hospital because we live in LA. I suspect that your mom will be in the actual hospital less than 30 days, but staying in the neighborhood until Day 100 is a good idea.

Let me know what questions you have about CoH. I'm always glad to help.

Good luck!
Ruth

[ecb220]

Thank you so much Ruth. My sister and mom are down there now, and I'll head down on Saturday. Today is Day -6, and her fourth day of chemo. She gets admitted on Saturday for a few days of a more intense kind of chemo.

At this point, I think we're all just ready to get this under way. Been such a long process getting here.

I seem to recall someone putting a list together at some point of unconventional things to remember to bring to the hospital when you get admitted - slippers, computer plugs, etc. Things that you may not normally think about... Does anyone have such a list? I bought some games and a few coloring books today at someone's recommendation, and we found out there's a DVD player in the room so we'll bring some movies too.

Thank you,
Eoin

[dfantle]

Eoin, best wishes to your Mom as she enters this journey. It's really wonderful you all will be helping her.

Great idea to bring things along. When it all really hits, she may just want to rest quietly or listen to quiet music (I did). Sleep is important when she's tired so gauge how she's doing & consider limiting a lot of chit chat & activity in her room if she appears sleepy. When she's alert, I'd ask the team if its ok for her to walk the halls as walking can help settle the stomach and help her heal.

Maybe also bring some warm fuzzy socks, hats & fleece wraps for her (if allowed). The first few months I remember getting quite chilled at times & these helped me a lot at home.

I believe January 29 is a lucky day because this the date I had mine last year & I've done really well