I was really disappointed
To be honest, I was really disappointed. I was a little shocked at how fast they made that determination. I wasn’t quite sure of her treatment protocol, so I was kind of shocked that after four rounds of chemotherapy, which really was only two months of treatment, they made that decision.
I realized it was a better option once I heard her surgeon flat out say, “We have two options: we can resect the tumor, knowing that we’re going to leave some in there, or we can take everything out and give her a fresh start.” I think I really just needed to hear it black and white like that. I think I had a little bit of anger, like, “Why can’t we treat her with more chemo?” and I just needed that knowledge of, “She’s responding well, but the more chemo we give her, her body is going to eventually start to wear down.”
Mother of Hannah, 4
We never knew that was a possibility
It was very scary, because we didn’t know anyone that had ever had to go through that. We didn’t have anybody with problems at all on both sides of the family, nothing with liver, we’d never even heard about transplant – I mean, obviously you hear about transplant, but we never knew that was a possibility! And he was so little, and we’re thinking, “What’s going to happen?” so it was very scary.
Mother of Noah, 5
We were very eager
When she was diagnosed with kidney failure, we were presented the options. She could stay on dialysis her whole life I guess is an option that some people choose. But we were presented the transplant option, and told that living donors are definitely the best, and so both my husband and I got tested for matches. We both matched, but he insisted on donating. My husband had many appointments where he had kidney tests and this and that, and she had a few immunizations she had to get, and just all kinds of red tape, just scheduling it out and everything, when the time was right, when all of that paperwork was in place. We knew it would be about a year. They always told us, “Okay, around spring,” so we knew. We were very eager. We were very excited and eager.
Mother of Lydia, 6
He deserved that chance
It was a long decision. My husband’s father had a transplant and not even a year later he died, so my husband was kind of hesitant. He didn’t want that to happen, he didn’t want to get his hopes up, and I was the same way. I wasn’t sure if it was going to make things worse or make things better, and I wasn’t sure about the long road that we were going to be going down, and I was pretty scared. But we had almost a whole year talking about it, and then when it came down to it, we just decided to do it, because he deserved that chance.
Mother of Austin, 9
At some point we had to just go with it
We knew we had to do it at some point. We kind of waited because of technology: the longer you wait, everyday technology improves, medicines improve. But at some point we just had to go with it.
[Later] We always said we wanted to do it between eight and ten years old, so he could converse with the doctors, talk about meds, pain, what’s going on. We never wanted to do it when he was four years old, three years old when he was really small and couldn’t really tell what was going on. So we took the risk and held on, and lived under blue lights for the first ten years of his life.
Father of Walter, 11
I think I’m ready
Walter: I guess it was pretty much that we were just going to do it. I think, well I guess, there wasn’t anything to decide about, we were going to do it. I guess a little bit, like do you want to sign up right now or in a month? But it was pretty direct.
Dad: It was driven by him mostly. You know, we kept telling him, “When you’re ready,” and he never was ready. Then just when he was eight going on nine, we started talking about it, and he was like, “I think I might be ready.” Then, “I think I might be ready” and then finally, “Yeah, I think I’m ready.” Because he, again, slept under blue lights for ten years! We didn’t miss out on a lot, but he missed out on sleepovers and things like that. It definitely restricted us.
Walter, 11, and father
We said no
At first we said no. I could not even wrap my head around the idea of transplant, and when I heard what the statistics were in terms of how long he would survive post-transplant…and just the whole concept of doing a transplant! I was convinced that the medication we were on just had to work, it was the best medication for him, the most powerful form of medication, and it just had to work.
[Later] I changed my mind when it became pretty clear to me that if he didn’t have a transplant, the chances of him dying were significantly increased. That took maybe four months: we kind of watched him get sicker and sicker, and be able to do less, and then he was placed on oxygen 24/7, so at that point it became clear to me that his quality of life was just not good. So we had to make another decision.
Mother of RJ, 12
They were just very clear
They did a lot of talking with us. We had several appointments with the doctor who actually did the transplant, about what that would be like after. And they were just very clear about what was expected of us, you know, how many appointments he would have, how he would look. They were very clear, and they gave us a very thick book on what lung transplant was all about. And I thought the book was very helpful, very thorough, and kind of explained everything step by step.
Mother of RJ, 12
Time to wrap our minds around it
I really didn’t want to have to do a transplant. I was vehemently opposed. I felt like we were trading a really great life for a complicated one, and once you walk through the door you can’t go back. And it was scary! The unknown, and what if it only lasts a short time, and what if there are all these complications? – and it wasn’t just about me, it was what did Eva want? What did my husband want? And she didn’t want to have to do it.
So I was really grateful for the timeline that we had, because I’ve met people who were told, “This is what your child has. If we do nothing, they’re going to die, so we’re putting them on the transplant list today,” and there’s no time to adjust. I was really grateful for how much time we had to sort of wrap our minds around it and go, “All right, in some ways we don’t have a choice.” I mean, we always have a choice, but we don’t have a choice!
Mother of Eva, 13
Another transplant
Nobody ever wants to think that they have to live through that again, but we saw the success of it and we felt that we really didn’t have a choice but to try to make it better. So when they gave us the opportunity to relist her, because she was so successful after the first transplant, I can’t say that we didn’t hesitate, but we felt like we owed it to Laura to do everything we possibly could.
Mother of Laura, 14
If that’s what they thought was best
Transplant was not even in my thought process ever, and it was just really shocking to hear it. My husband was dead set against it: “No. It’s not hers. She’s going to reject it. We’re going to lose her, we’re not going to have her!” And of course you get all that, because it’s not hers, so are we better to keep hers in there?
We didn’t wait long to decide, we decided right away. And I would have said yes anyways, especially if that’s what they thought was best for her. That’s what I kept telling my husband: “They’re not going to do something if there’s something else that would work better, to keep her own heart.”
Mother of Alanna, 15