Caregivers are essential to the wellbeing of their loved ones. Often, the focus is on the person with Fanconi anemia, yet caregivers live their own FA journey. In an effort to hear more of these experiences, our friend Allison from The Negative Space Blog, and wife to an adult with FA, interviewed another FA caregiver to learn about her experiences.
Allison Breininger (AB): Mary, you care for your son Kyle, who is now 25-years-old. How old was Kyle when he was diagnosed with Fanconi anemia and has he had a bone marrow transplant?
Mary Tanner (MT): Kyle was diagnosed at sixteen and had his transplant when he was 22. He and I relocated to Minnesota from Michigan for his transplant.
AB: Kyle had a number of major complications during his transplant. What was it like watching this person you love go through such a hard thing?
MT: I tried to stay positive on the outside the whole time for Kyle’s sake. I would just keep moving forward, hoping it would get better. If there was a minor setback one day, I would tell myself and Kyle that tomorrow would be better. I tried to keep a positive outlook even though things were dreadful. I was calm and cool during it all. I couldn’t let myself panic until afterwards.
AB: I imagine it was difficult to put on a brave face during that time. What was the hardest thing to stay calm about?
MT: Germs. When it comes to germs and Kyle, I am not calm and cool. I am an advocate. This was even before COVID. After transplant we avoided elevators that were crowded. I would scope out a situation before we would go into a crowd. I would even step in between him and a person who coughed or sneezed! It was like I was his bodyguard and I was taking a germ bullet. I would take a bullet for Kyle any day.
AB: What’s that like for you, being such a super advocate and protector of your son?
MT: It’s my job. Even before BMT I knew he was sick, but even more so now. As a mom, as a caregiver, it’s my job. It’s my duty. It’s what moms do. I have a Mama Bear shirt. During transplant I wore it a lot. It’s like my superhero uniform.
AB: When the time came to go home to Michigan after transplant, what emotions did you feel?
MT: I was scared of being so far away from the hospital and people that know us, that know FA. When we were living at the Ronald McDonald House in Minneapolis, we were so close to the hospital and clinic. One call and we could be there in five minutes. But at home we live ninety minutes from the University hospital. That made me really nervous. I was also sad to leave behind the staff at the hospital. We got to know them really well and they were so kind and provided so much support. Leaving them behind was hard.
AB: What is it like when Kyle has scans or tests or bone marrow biopsies coming up?
MT: I try to stay positive until I hear something negative, otherwise the negative consumes me. I want to stay positive as long as I can. He’s had a few good biopsies in his mouth, but I know the next one might not be. I stay positive…but I also play out all the scenarios. I can’t help it.
AB: When you get a good report, how do you feel?
MT: Yay! I get to exhale for a little while. Plan something. Not cancel what we have planned. But that only lasts until the next thing comes up or the next lab draw is scheduled.
AB: Do you have people in your day-to-day life that understand what it’s like to be a caregiver for a person with FA?
MT: When he was younger and less sick, I was more involved in my community at home. But now I hesitate to tell new people that I meet about Kyle and FA. It’s just such a long story and FA is so complicated. I have actually told people to go to fanconi.org to learn more about it because it’s too much for me to explain sometimes.
AB: Is there anything else you want to add?
MT: I’m a Mama Bear. Don’t get between me and my cub.
Kyle in front of the University of Michigan stadium
Kyle and his bone marrow donor