It’s kind of bittersweet
I was nervous because now it was real! You think about it and they tell you how they’re going to do it, and they give you the pager, and it’s going to go off and they’re going to call you, so pack your bags… And then when they call, it’s the realization that it’s actually there — it’s like, wow, this is really going to happen.

[Later] On the ride up, I was very scared. I actually started crying, and my husband – I’ll always remember him telling me this – he was like, “He’s getting a new life. We should be happy. It’s good, this is good, he’s getting a new life.”

And it’s kind of bittersweet, because then you think about the parent that lost the baby, and you know what that’s like because you were almost there. I mean, you’ll never know what it’s like unless you lose one yourself, but you can think about all the emotions and how that parent must be feeling…so it’s bittersweet, it’s nerve-racking because you want him to be okay, but at the same time it’s exciting, because it’s like, “Wow! Hopefully things will be okay.”

Mother of Noah, 5

 

Long and anxious
The surgery was long, about 14 hours long. We waited. It was overnight – we got here, he didn’t get taken in until later on that day, and then he was in surgery probably until 2 or 3 in the morning. So it was long, and just very anxious while we waited.

My husband and I were both here. And they do updates, so that’s very good. The coordinator came out a couple of times, one of the doctors came out at one point, just reassured us, told us where they stood and all of the steps.

We got to see him afterward at the NICU, and he actually again looked better than we thought. It was very scary! We couldn’t pick him up, so that was scary, and he had so many tubes, he was so little, and just to have so many tubes and things beeping and so much medicine…

But again, they were so good about teaching us everything, telling us what every tube was for, what every medicine was for, what to kind of expect in the next 24 hours.

Mother of Noah, 5

 

An immediate celebration
Once we didn’t get the call after two and a half weeks, her oncology team decided to give her just a light dose of chemo. So she was in the hospital inpatient for a round of real light chemo, and we got the call while we were there. We were in the playroom and she was amused and my parents were there and the nurse practitioner called and said, “How’s chemo going?” I said, “Great, she’s doing well!” “Okay, well, we have a liver for you!” And it was that immediate, “What? What did you say?” And I’ll never forget it. I turned to my

And I’ll never forget it. I turned to my parents, because they were right there, and I said, “They found a liver!” And we all were just shocked. And then it was an immediate celebration, if you will, because they must have called the nurses at that other hospital, and it was this big rally of getting her ready – the only way you can describe it is a celebration! They had never transported a child from there to Boston for a transplant, so they had about thirty nurses in front of us, and her surgeons ran over and her doctors and her oncologist, so that was I guess a good thing! It made light of a situation that we were all really stressed about.

Mother of Hannah, 4

 

What we’d been waiting for
It’s really hard to put words to it. It was a sense of almost relief, because my husband and I both knew that this was it, this was what we’d been waiting for, and that this was going to get this nasty, ugly tumor out of her body. So I was very calm, which I think surprises some people.

They wheeled her down, my husband and I went with her to the pre-op room, and at 12:30 at night there was no one there. It was a little eerie! So we were the only ones there, and we met a couple of the nurses. It was emotional! She was sound asleep, so we didn’t really get a chance to say goodbye as she went into surgery, but I knew that she had no idea what was going on and she was at peace, so I was at peace with it. But I really had this overwhelming sense, “Okay, it’s going to be okay. This is what we really have been waiting for, for the last four months.”

Mother of Hannah, 4