Things were a little chaotic when we first got back from the fertility preservation trip early this fall. When we got back, I had to finish the girls' Halloween costumes, then we had Michael's 40th birthday, a small leak damaged both of the kids' rooms (ruining Amri's bed), and our health insurance
provider changed- but it's all settling down now, and we have more details about the upcoming transplant.
I want to thank everyone for the outpouring of love and support. I'll be posting the new update soon, but I realized I forgot to share the post from October 10, 2019 (while we were at NIH for fertility preservation), so here is the update I forgot to share, and a photo from the shuttle ride to the restaurant:
I've not posted much about our fertility preservation trip, but I think it's important to share because there are many friends and family out there thinking about us (and some caring strangers, too). I also wish GoFundMe updates were more photo-friendly. I feel the need to make a public album via social media, about our journey, as I found some quiet assurance several months ago when I stumbled onto another person's post about GATA2 Deficiency on Instagram- and if we can do that for someone else down the line, we should. So, I'll figure out what I want to do and let you know. <----- THE BLOG PAGE THAT YOU ARE CURRENTLY READING THIS ON WAS MY SOLUTION. I COPY AND PASTED ALL THE POSTS FROM HERE BACKWARDS OVER TO THIS BLOG (FROM GOFUNDME) SO WE CAN SHARE WHATEVER WE FEEL LIKE SHARING WITHOUT THE RESTRICTIONS OF OTHER SOCIAL MEDIA FORMATS.
Amri's had a rough few days. Monday she had her retrieval procedure, Tuesday she had a pre-transplant eye exam that involved putting paper in her eyes (for ten minutes, measuring moisture) and also dilating them (the dilation lasted 4 hours), and today she had waves of nausea.
During one of the calms, we went on the Children's Inn field trip to a restaurant, where she ended up throwing up. Her tummy troubles are a side effect of her procedure, and of the meds (injections in her belly.) We have another pre-transplant appointment tomorrow. This Friday, after more than 2 weeks away, we'll fly home!
Yesterday I joined an online GATA2 Deficiency support group. It has members from all over the world. Tonight, after I got Amri back to our room following the field trip, I got a message in the support group, asking if I had just walked through the kitchen at the Children's Inn. I immediately replied and went back to the kitchen, where I met a mother from the Netherlands, whose child is here for transplant.
Our kids are of similar age and have similar symptoms. Amri is not yet ready to talk to other GATA2 families, but this mother said her child would be open to being Amri's text buddy. The Children's Inn is filled with families from all over the world, receiving treatment (for infinite conditions) at the National Institutes of Health. I have heard so many languages each time we go in the community kitchen. Family dinner is interesting because there are about 6 large tables, so you sit with some strangers and chat. The lady next to me last night (from Spain) used google translate to tell me about her condition, and on the trip tonight we all laughed when her daughter and her daughter's Inn-friend from Mexico got all hopped up on soda and the mom said something to Amri and Amri translated her joke for me and the mom across from us.
Bonding over the shared meal, and the unique shared experience of being away from home, being away for medical reasons. Yesterday, between appointments, Chicfila brought lunch to the Inn. Amri has been hankering for familiar food, so I dropped her in the lobby of her eye appt and scurried back to the Inn to get her a sandwich. I was out of luck- they ran out in under 20 minutes. So today we decided to take a bus to the mall to get her some Chicfila for lunch. At the counter, the woman asked if I wanted to buy half a dozen cookies and I said no. Afterwards I read the little sign. A dollar from each cookie sale goes to the Childrens Inn at NIH. Amri is sighing in her sleep, and although I wish we were home, that we didn't have to be here at all, I am incredibly thankful that this place exists.
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