“Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m gonna make this place your home”
– from “Home” by Phillip Phillips
It’s not like I can sleep at the moment, so I may as well update the blog. Ana had her biopsy at around 11:30 today and was released from the hospital at 3:00 without incident. Dr. Martinez managed to get the biopsy sent to the lab by 11:00 a.m. so we’d get the results today (she had someone literally walk it up 14 floors because the elevators can be so slow). Dr. Martinez has crazy good instincts. There’s a reason she had that guy run up 14 flights of stairs.
Ana was in good spirits. We made good time and got home around 5:00.
We had a few people over, a nice big cake and Ana got her birthday party after all. But ten minutes before everyone got here, Dr. Martinez called and said that she was in “moderate” rejection and strongly advised us to bring her back to the hospital for treatment tonight. I watched her joyfully eat cake and laugh with everyone – all the while KNOWING I’d have to break the news to her when everyone left.
She literally went from laughing and hugging me, to sobbing in about sixty seconds. It was one of the worst moments I’ve ever experienced as a parent – and I’ve been through some bad moments.
I called Dr. Martinez back and got the on-call physician’s assistant (Patricia) and asked if we could wait until tomorrow, so that Ana could at least spend the night at home. But her level of rejection is fairly high. It’s 8 out of 10 on whatever obscure rejection scale they use to measure these things. She’s had elevated liver enzymes for three weeks. She needs to get treatment with intravenous steroids tonight and again tomorrow. Her medication will be adjusted (likely an increase in prednisone).
Patricia explained that it’s very common for children to have rejection episodes in the first three months after transplant. In fact, 80% of them do. Children tend to do better in the long run if they have a rejection event like this. I’m not sure why, but I think it’s related to having a healthy immune system. Children also have ferociously strong immune systems which means they are more prone to rejection than adults.
When we were still at the hospital, Dr. Martinez didn’t seem to want to explain what would happen next based on the biopsy results. Her approach seems to be to provide information on a need-to-know basis. Why get Ana (or me) upset if it’s not rejection, after all? When I tried to clarify what would happen if the results were positive, Dr. Martinez said she would need intravenous steroids and she’d likely have to be admitted. When I started to explain to Ana that this might happen, Dr. Martinez interrupted me and said, “But there’s no way of knowing that will happen. We need to wait for the results.”
So, consequently, I stopped talking to Ana about this and worried internally, then when we got the call from Dr. Martinez, it had to be a fucking emergency situation – again.
You know what? Please don’t shield me from what might happen because you don’t want to answer my questions, or you are trying to protect me from anxiety or whatever other doctory reason you have for withholding information from me. Set your ego aside. I have to UNDERSTAND every nuance of the reality that I’m dealing with. So it just made everything ten times worse when the worst case scenario happened and Ana had to go back to the hospital straight from her own birthday party.
Is it too much to ask to be treated like a grown up so that I can PREPARE my CHILD? I really wish Dr. Martinez could’ve heard the level of Ana’s despair today. LET US KNOW WHAT’S GOING ON IN ADVANCE. I love and trust Dr. Martinez, but I am tired of trying to guess at what’s happening all the time.
You know what the hardest part of this whole thing has been – well, besides the fear that Ana won’t survive? It’s having the important moments ripped away – the things that made me happy as a mother. Planning a birthday party. Being able to take care of my own child when she’s sick. Saying “everything will be okay,” and meaning it. It’s time and time again of not being able to make it better.
A ruined birthday is not that big a deal if you’re saving lives, I guess. But to Ana (and me), it’s yet another reminder that we’re navigating hostile territory. The burden is so heavy. I can feel it dragging me down.