Are there any fathers that read this blog? If so, Happy Father's Day!
Today was bittersweet, which is understandable by all I'm sure. Angelique surprised me with the best Father's Day gift. I thought she already gave me my gift, but on the side, she made a photo book through shutterfly of the kids for me. She made one for me in 2008, and I took it with me on my 6 month internship and it was PERFECT. Well, she did it again! Check it out:
This one is great - these are all pics of Ali and Bella at similar ages... columns 1,3 are Ali and 2,4 are Bella.
After that cool moment, we went to church and lunch. At lunch, Ang pulled up last Father's Day post from the blog on her phone. That was rough; some of the day, both of us had completely forgotten, but a lot of the day we remembered well, and there was a particularly cute photo shoot on the bed that evening.
Then, after lunch, I got a phone call from a mom who is getting ready to put her 2.5 year old daughter through transplant. She didn't know which patient Bella was, so it was a little awkward at first (for her), but we have always said we wanted to share as much information as we could to any and everyone (one of the reasons for this blog) who is considering BMT. We had a lovely talk, and we shared all the pros and cons of doing the transplant versus waiting... all the same stuff Angelique and I struggled with. We told her that we don't recommend any child under 2 go through transplant at this time, given that 3 of the 5 children under two DIED. Not good odds. We've told Dr. Wagner the same thing, and she shared with me that he is considering excluding any children under 2 going forward. EB is so much more complex than they first realized. In non-EB children, under 2 is practically IDEAL for bone marrow transplantation since the immune system is "immature" which lowers the chances of Graft Versus Host Disease (GVHD) from occurring.
After vegging on the couch a while watching the US advance in the Gold Cup (Soccer), remembering how much we did last year, I realized I couldn't sit on the couch all day feeling sorry for myself. So, I checked the black out dates at Disneyland, and as soon as I saw we were in the clear, I surprised mommy and Ali with a trip to California Adventure to ride the new Ariel ride. Ali just about jumped through the rough.
6 hours later, we returned home with sore feet, but happy hearts; we had fun. We needed something new to help relieve the pain of the memories, so we went on two new rides, a new tour, and ate in a new spot. That really helped. We hiked back to the tram just as the fireworks were ending in the Magic Kingdom, so we beat the rush out of the park, and made it home safely. Morning is gonna come early!
Under the cognitive and kinesthetic distractions lies a heavy, sad, and broken heart. I have a feeling this summer (before Julian arrives) is going to have a lot of pain, a lot of flashbacks, essentially a lot of PTSD. Pleas say a prayer for us that it isn't too rough.