"There's no happier person than a truly thankful, content person." - Joyce Meyer
Elise and I made a quick visit to NIH for her routine "6 month" checkup. It's really only (!) been about 5 months since the transplant, but the upcoming holiday season made this the best time to visit.
Elise had a battery of tests: about 15 tubes of blood work; chest CT scan (looking for any evidence of infections); echo cardiogram; and a 24-hour Holter monitor. After that we met with the medical team.
Everything continues to look good. Her blood counts are gradually recovering. She's gaining weight (although she has about 10 lbs to go to get back to where she was last spring). Her hair has started to become noticeable. And no signs of the dreaded GVHD.
The one thing they are going to look into further is whether her ovaries were damaged by the chemo and/or radiation conditioning therapy. We all knew going in that this was a possibility. They can't protect the ovaries during radiation therapy so they are totally exposed. And chemo can do all sorts of bad things to the body.
Elise hasn't had a menstrual cycle since June and she's been having hot flashes. The hot flashes may be caused by one of her meds, and the lack of a period was by design: they gave her a dose of Lupron to inhibit her cycle while her platelet, hemoglobin and red blood cell counts were suppressed post-transplant. At this point it should be kicking back in, although it's still in the range of expectations.
So they'll run some tests and wait and see. It could be a number of different things: a late restart after the Lupron; her low body weight; the ovaries "going to sleep" from the chemo (could take a year or more to "wake up"); or her ovaries could be damaged. If they are damaged then they'll put her on birth control pills to normalize her hormone levels which will restart her period.
Elise is just fine with not having a period and she wasn't real excited to hear discussion of working to restart it. I suppose other women probably feel the same way.
On a real positive note, they've decided that Elise can stop taking 3 of her medications. The first was ursodiol which she took to help prevent VOD, a rare but potentially nasty complication of chemo therapy. The next was metronidazole, an antibiotic that treats gut bacteria like c.diff. She'd been taking it prophylactically for quite a while due to her severe colitis. And lastly is prednisone, a steroid meant to manage the symptoms of colitis. She's been tapering off the prednisone for quite a while. It was a miracle drug when she had colitis, but she hasn't had any symptoms for several months and hopefully it's gone for good (her severe colitis is the main reason that drove the transplant).
Of course she'll need to take some meds for up to a year: sirolimus to help prevent GVHD; and acylovir and fluconazole to help ward off opportunistic infections that might pop up because of the immunosupressive action of the sirolimus. But eventually these too will go away. That will be an amazing day.
It's really hard to believe that a year ago almost to the day I was sitting in a room at NIH realizing that we'd need to go forward with a bone marrow transplant. Elise was having a colitis flare and the GI specialist had just finished a colonoscopy. In the little room they use to have private meetings, his prognosis wasn't good. Up until then we'd avoided discussion of a BMT because of the extreme risks, but we found ourselves boxed into a corner. After talking to Becky on the phone that night we started down the path the very next day. I sure am glad it's a year later and things have gone well. It's going to be an honest Thanksgiving celebration this year.
View of the Children's Inn at NIH
