Transplant, One Year Later

This afternoon Mike and I drove into Durham to meet with Dr. Paul and Andre. I started a post earlier this evening, it had all the medical details but then I got tired and I decided to finish it later. I went to bed but I couldn't sleep so I finally decided that I should write. But I don't want to write about the medical details, or the test results, or the labs.

So much has happened this last year. Most of the time when I blog I share my thoughts and feelings but I try and be respectful of those people who I know will be reading. But tonight I just have this overwhelming urge to share, raw and uncensored sharing.

It's been such a year. I can't seem to find the right adjective to describe this year. Olivia's course of treatment over the last year has been unremarkable medically. She didn't get especially sick, her body reacted the way it should, she had a relatively short hospital stay and we were able to leave the Durham area relatively soon after transplant. Everything about her transplant seemed to go smoothly, it was unremarkable but....there are so many things about the last year that are remarkable to us, so many events over the last year are forever etched into my heart, and there is no way that I'll ever be able to consider any of it unremarkable.

First of all I've been completely overcome by people's generosity, towards us, towards our family. Sometimes it was people we knew, sometimes it was complete strangers, but in all cases it was always completely unexpected. And although I'll never have time to sit down and write the heartfelt thank you letters that I had wanted to the generosity is not unappreciated.

Secondly I wish there was some way to thank all the different people at Duke. I don't know if Andre will ever know that he's become a household name in our family. His name is mentioned often, here in our house and elsewhere. At the dinner table when Peter tries to share his strawberries with Olivia but I warn him that "Andre said Olivia cannot have strawberries yet" or when I'm on the phone with my mom explaining how clinic went and every other sentence starts with "Andre said ______, or "I asked Andre about _______". I will never forget the kindness and compassion of the nurses at Duke, both on 5200 and in the clinic. The nurses in clinic were fantastic with Peter and they were great at accommodating us. I love that they remember which cartoon characters Olivia likes and which nursery rhymes make her smile. I'll never forget that Laura Y was our nurse the first night we were on 5200, that she gave us the grand tour or that Stephanie D administered Olivia's first dose of chemotherapy.

Then there are our friends, I use that special word for the other parents and kids who share this experience with us. Until you've watched the chemotherapy poison drip into your child's vein you cannot possibly understand what the experience is like. We have been lucky, there's just no other way to describe it. We didn't have any more or less faith, just luck. It's frustrating because this is the one piece of this year that haunts me the most. I see the faces of our friends from 5200 and I'm haunted by those who are no longer with us. It makes me feel so incredibly guilty to see Olivia sleeping away peacefully downstairs while some of our friends haven't been so lucky. I try not to let the guilt overwhelm me, I know those parents would give anything to spend one more night with their children so it would be a waste for me to spend time feeling guilty instead of enjoying and appreciating that Olivia is here.

This experience has changed me so completely. Mike's old unit from Ft. Lewis is just returning home from Afghanistan. Sometimes I wish I could take every single second of this last year and trade it for a deployment, I think that would have been easier.

I'm glad it's over but I'm apprehensive about the unknown. I miss the little girl that Olivia used to be, I miss hearing her sing, and hearing the sound of her voice. I know I'm lucky though because she's here, she can still cuddle up and she gives great hugs.

What a year!