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@leilab1

@loribmt ,
Good morning! I appreciate your asking about Alex's journey. Today is Day +39 and I'm extremely thankful to report that Alex has begun eating solid food again and although he is still having a suppressed appetite, he seems to be heading in the right direction. His Platelets and WBCs continue to creep upward. The infections and fevers are behind him now. This is all wonderful news and a huge relief!
Doctor says there is a 75% chance that Alex will be discharged today or tomorrow. However, we
are having issues with recovery housing. The facility where he was supposed to stay has no availability right now and so we are once again on the waiting list. When we began this whole process, we were assured by the social worker that recovery housing would be taken care of by them. That particular social worker is presently on vacation and nobody else seems to know how to proceed. This leaves me frantically searching for recovery accommodations online. I'm hoping to hear from a new social worker today. Wish us luck!

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Replies to "@loribmt , Good morning! I appreciate your asking about Alex's journey. Today is Day +39 and..."

Hi! Alex sounds like he’s right on schedule now. What’s the old saying? It’s not a race, it’s a marathon. So there is a slow and steady pace to this process. The first month is the roughest. I think most of us in the allo-transplant world will agree with that. It seems almost insurmountable some days but we take one day at a time. Sometimes 30 seconds at a time…but we get through it, coming out on the other side feeling a bit like we have super powers.
I just read an excerpt from the small journal I kept with my transplant odyssey. There’s an entry from Day +37. It parallels Alex’s. I’d finally ditched the wheel chair needed for my 2 block ‘ride/walk’ through the Subway (lovely underground walkways between hotels, businesses in Rochester) to Mayo every day. Finally had the energy to walk longer distances! I was starting to eat again, though had daily bouts of nausea that came on like morning sickness.

Oh my gosh, the lodging issue is a problem for sure. For my 4 months in Rochester my husband and I stayed at a Marriott Residence Inn where we had full kitchen, 2 bedrooms, 2 bathrooms which made our stay a safe haven for our home away from home. BMT at Mayo is outpatient so I was only in the clinic for a couple days prior to transplant and 1 day after. I reported daily for blood draws, infusions, etc. It was a wonderful experience and awesome not being in a hospital setting for recovery. We could control my environment which needed to be kept pretty sterile.
I had to be no further than 30 miles from the Clinic for 100 days. We were less than 2 blocks away in the hotel.

A hotel room with a kitchen or kitchenette would be helpful for Alex and your husband, at least until the recovery house is available. Just make sure everything is wiped down with a disinfectant, shower curtain is new to avoid any fungal issues. Is there anything like that near the clinic where you son is being treated?