NEW BRAUNFELS, Texas -- Cancer patients needing lifesaving bone marrow transplants are having to work around restrictions due to COVID-19, which may have canceled or delayed their procedures. For one New Braunfels family, this pandemic has made an already tough situation even more frustrating.
Fourteen years ago, the Owens family found out their daughter Abby had leukemia. On top of that, an abnormal chromosome, the Philadelphia chromosome, essentially makes a protein that feeds leukemic cells and makes them grow rapidly in her body.
"So not only did she have just this regular leukemia, which is highly treatable in young kids, her chromosome translocation makes it much harder," Abby's mom, Jessica Owens, said. "At the time of her diagnosis, the survival rate of this specific kind of cancer was only 20 to 30 percent. And so the fact that she's made it for 14 years is actually really wonderful,"
Owens said Abby started feeling bad for a couple of months at the end of 2019. They found out that Abby's cancer had come back.
"Her targeted therapy meds have their own problems. Some of them make you very fatigued, some of them, the one she's on now, she's got skin issues. Just peeling, flaking, even cracked skin and so that's an infection risk. Some of them cause gut issues. So there's a whole host of problems that it'd be great if that wasn't something that was a part of her life forever," Owens said. "Abby had been off of all her treatment for several years, including support medications, targeted therapies and everything. She was off everything. And we were actually ready to ask her doctor if we could kind of, you know, ‘Can we go to a survivorship clinic or can we just stop coming here all the time and can we kind of get on with our lives?’ Then she started with the fevers, and it became apparent that something was going on."
Owens said this time, her relapse is on a molecular level, meaning the leukemic cells were only found in her marrow and not in her blood.
"For whatever reason in Abby, this just is a chronic issue and it's not going away. Even though it's acute lymphocytic leukemia, that chromosome issue that she has still causes it to be more of a chronic problem. And some kids are treated and it goes away and they get on with their lives, but not Abby for whatever reason. The bone marrow transplant could be curative, I mean that's our hope," Owens said
Doctors caught Abby's cancer early, and in February it was decided that a bone marrow transplant was possible and the best course of treatment for her. Then coronavirus hit and all of the restrictions and precautions came along with it.
"Having a child with cancer, we are super used to quarantine. When her white blood cell count is really low, we have to stay home, we have extra infection precautions. She has to wear a mask when she goes to the doctor, no going to the store, or school or any place like that. So this has been a part of our life, off and on for a while," Owens said. "It was already really hard. Now as things have progressed, they're not letting more than one parent go with a kid to the doctor, which that's okay but they're also not letting people come and visit. They have also furloughed a lot of their staff, the support staff like the Child Life people and the social workers. So, getting any kind of a break is going to be difficult."
On top of the restrictions surrounding doctor visits, locking down a potential bone marrow donor for Abby was a struggle because of coronavirus.
"The biggest problem for us has been the donors," Owens said.
Donors for bone marrow transplants are found using the “Be The Match” registry, a worldwide donor database made up of healthy young adults who have submitted cheek swabs and signed up. Human leukocyte antigen (HLA) matching is used to match patients and donors for blood or marrow transplants. It’s much more complicated than blood typing. For HLA matching:
- You and potential donors will have blood drawn.
- The blood is tested in a lab to figure out your HLA type.
- Your HLA will be compared to potential donors to see if there is a match.
- HLA matching is usually based on either eight or 10 HLA markers.
- The more markers two people share, the better the match.
- A good match means their immune systems will not see each other as foreign and are less likely to attack each other.
For many, a perfect match for a bone marrow transplant is tough to come by, but Abby had six. The first perfect match, a girl around Abby's age, couldn't donate for an uncertain reason that likely had to do with coronavirus, Owens said. The next three in line were international donors, which is not allowed at this time due to COVID-19. The final perfect match didn't pass his medical screening.
"That's six donors. Here's a kid with with six donors and none of them worked out and five of that was because of the virus. So it's very frustrating." Owens said.
With all viable donors no longer possible, doctors looked within Abby's family. The most likely place to find an HLA match is among siblings who have the same mother and father. HLA types are inherited so siblings can sometimes be a match for each other. Each of your brothers and sisters who has the same mom and dad as you has a 1 in 4 chance (25 percent) of being a complete, or full, match. However, Abby's three siblings have a different dad than she does. Parents area always a half-match for their children, but aren't typically chosen to be donors due to the age difference. Years ago when Abby's older siblings Caitlin, Zac and Maddie had been swabbed, doctors told Owens they didn't look like they would be a good fit to be Abby's donor.
The Owens family, from left to right: Maddie, Zac, Caitlin and Abby in the front/center. (Courtesy: Jessica Owens)
"They told us, you know, ‘We don't know what we're going to do. You know, we're just going to have to use your dad and we'll run these numbers with the kids and see what happens.’ They called me the next day and said that all three kids are perfect half-matches for Abby. She's got two female siblings that are within a few years of her age, that haven't had kids and so they decided to do the full blood work on them, and both of them came up to be good matches," Owens said. "I think her medical team was a little shocked even that the kids were such good matches, so that's been wonderful."
Big sister Caitlin was ultimately chosen because she had the same blood type as Abby.
"She’s just very happy to be able to do it. We’re a super competitive family and so we laughed about 'Sister Olympics.' Who is going to get to donate if they come back and say 'Y’all have to pick'? I was like that might be Fight Club, that may not be the Olympics," Owens joked. "All three kids were were totally willing to donate to Abby and so we knew everything was going to work out."
Both Abby and Caitlin are currently preparing for the transplant which will happen later this month. Abby is undergoing her "conditioning treatment," which is several days of chemotherapy, radiation and immunology therapies. This will prepare her body for the bone marrow transplant. There are two donation methods: a surgical procedure using needles to withdraw liquid marrow from the back of your pelvic bone. Caitlin has chosen the non-surgical procedure: For five days leading up to donation, she will be given injections of filgrastim, which is a medication that increases the number of blood-forming cells in your bloodstream.
"On donation day, they will take her blood out of [Caitlin], just like a regular blood draw to give blood, out of her arm," Owens said. "It filters through a big apheresis machine and they keep all those cells that they want that are good for Abby, and then they put the rest of her blood back into her other arm. And so, the shots themselves are kind of painful, your bone marrow’s releasing cells and you get a little sore, but from what I understand, the day of donation, after that happens and this shot stop, you don't have any pain after that."
While Owens said she's happy to be taking the next step with Abby's health, the next few months are going to be hard on everyone.
"We're going to be in the hospital for probably two months and if the [COVID-19] restrictions don't lift, that means nobody will be able to come and visit. And yes, that's kind of my break, which is selfish, but it's also — Abby doesn't get to see her father. She won't get to see her siblings," Owens said. "Because what they're asking is that people don't come and go. One parent, and then they don't want people just kind of in and out. So they wouldn't really want dad to come and visit or even just spend one night. What they're requiring is that you, if you come, you switch out and you spend several nights. I mean we could make that work probably but he does also have to work, you know, so he’s our sole income right now so that's his job is to work and my job is to stay with Abby."
To keep up Abby's spirits, Owens set up an Amazon Wishlist where people can choose gifts or toys to keep her company during her hospital stay.
"It’s been a lot of fun to have boxes come to the house during this time when we can't go anywhere or do anything," Owens said. "If we would have known transplant was coming, we probably would have been going to the zoo or getting out and doing just some fun stuff for her to kind of take our mind off of it, and we haven't had that opportunity. So to have the Amazon truck coming up a few times a week has been a lot of fun."
Owens wants to stress the importance of getting into the Be The Match registry if you are a young, healthy adult between 18-44. Patients are most likely to match with someone with the same ethnic background, so adding more registry members who increase the ethnic diversity of the registry increases the variety of tissue types available and can help more patients find the matches they need. Searching patients are especially in need of donors who identify as multi-racial or non-Caucasian.
Abby will check in to the hospital on May 15, but before she does, her family and friends are sending her off with a drive-by parade, a popular way to celebrate in the times of social distancing. Barring any unforeseen circumstances, transplant day will be May 27.
To follow Abby's journey on social media, visit the Facebook Page "Abby Kicks Cancer's Butt," here.
Join the Be The Match registry by having a cheek swab kit mailed directly to you by clicking here.