Jenna Gibson, 12, was diagnosed with acute myeloid leukemia when she was 9 years old. She was treated with a cord blood transplant. She and her mother, Julie, shared their story.
Julie: We took Jenna in to her pediatrician ― it was March 5, 2012 ― and her doctor looked at her, just one look, and said, “Huh, Jenna, something’s just not right.”
Jenna: I think it was because I looked really pale, and I wasn’t as energetic as I usually am.
Julie: As soon as the doctor got the blood results back ― it was just two hours ― she was calling us and telling us to go to the ER at Seattle Children’s Hospital, immediately.
The word “surreal” gets overused. This, this was surreal, to have this moment. I can remember calling my husband, and telling him, “Hey, we’re on our way to Seattle Children’s,” and I’m using this voice that doesn’t match what I’m saying. I didn’t want to get Jenna all nervous if we didn’t have to. But when your pediatrician says, “The ER will see you immediately,” you know that’s not good.
When we were waiting for the test results at Children’s, I said to the doctor, “Do we need to think ‘scary,’ or not?” And she said, “Yeah, you need to think scary.”
Jenna: I took the diagnosis of leukemia pretty hard, just like anyone would, and I broke down in tears. I was really nervous to see what would happen to me.
Julie: She went on one round of chemo, and it was after that round that they knew that chemotherapy alone was not going to be enough; she was labeled “high risk.” And it was at that point that they knew that she was going to have to have a bone marrow transplant.
One reason we were so devastated when we found out she was going down the transplant road is that you need a matched donor, and the first place they look is siblings. Jenna happens to be adopted, so we knew a sibling donor match was not an option. And secondly, the percentage of donors that are non-Caucasian is tiny. Jenna’s non-Caucasian. We already felt like we were being beat up before we knew we were going to have to go to transplant, so once we found out we were going to have to go there …
It’s funny, because if you go back to the day that we found that out she was going to need a transplant, we just thought it was the worst news ever. Today, you ask me that question, and I’d say it was the biggest blessing ever.
When a matched bone marrow donor could not be found for Jenna, she got a cord blood transplant under the care of Dr. Colleen Delaney, who leads Fred Hutch’s Cord Blood Transplant Program. Cord blood is a lifesaving option for the thousands of patients every year who, like Jenna, need a transplant of blood stem cells but cannot find a matched adult donor.
Julie: There’s a woman somewhere out there who gave birth one day and just decided to say, “Yes, you can keep the medical waste” ― which is what the cord blood would have been. And it was a six-out-of-six match for Jenna [meaning Jenna and her donor shared all six of the genetic markers used to match donors and recipients].
On transplant day, she slept through it, but it was amazing to watch those cells go into her. It’s just this little bag, and it’s so nonchalant. Because by then she’d had so many blood and platelet transfusions, for Jenna it was no different than any other type of transfusion, procedurally. But this is what was going to save her life. Going back to that word “surreal,” this is what that word is used for. Because it’s unbelievable: This little bag of cells is going to save her life.
She fully engrafted on the same day as her anniversary of coming into the United States. So it’s like her cells came home on the anniversary of the day that Jenna came home ― July 3. I love that.
In the end, she walked away from cancer treatment with just three rounds of chemo plus full-body radiation. There are kids that go rounds and rounds and rounds and rounds and rounds of chemo. So, hindsight’s 20/20 and we were devastated then [when we found out she would need a transplant], but we’ve praised God every day since.
Another thing with cord blood which was nice was that Jenna had very little graft-vs.-host, because the cord blood cells aren’t mature enough to fully attack this body it doesn’t know. As we watched so many other patients ― our friends ― deal with graft-vs.-host disease in crazy hard ways, Jenna wasn’t ― don’t get me wrong, she had to deal with it but it was on a much smaller scale. The steroids made her blow up from 65 pounds to 115 pounds ― but that was really minimal graft-vs.-host disease compared to what other people get.
At our last appointment at Seattle Cancer Care Alliance [Fred Hutch’s treatment arm] this past summer Dr. Delaney looked at Jenna, who was completely bored, and she said, “Do you have any more questions? No? Let’s go on a field trip.” So we went over to her lab, and we got to check everything out. And it was awesome.
Jenna: Me and my sister got to look through the microscope. It was cool to see cells grow, and there were machines that were transferring the cells places. It was really interesting.
Julie: Today, we’re dealing with endocrinology. Chemo and radiation treatment stopped the natural growing process. We’re hoping to get Jenna to grow a little bit more. But if not, then not.
It’s hard to find normal. When she gets sick now, we have to tell ourselves, “It’s just a cold.” Or she’ll get nosebleeds, and you have to tell yourself, “That’s normal, kids get nosebleeds, she’s a kid; this is normal, this isn’t leukemia.” We’re almost at three years, but at the five-year mark we can finally feel pretty confident that it’s not coming back. We’re looking forward to that.
Now, Jenna is sixth-grader who loves to sing and create her own hip-hop dance routines. She and her mom, dad, two sisters and dog live in the Seattle area. When she grows up, she wants to follow her lifelong dream of becoming a nurse.
Susan Keown, a staff writer at Fred Hutchinson Cancer Research Center, has written about health and research topics for a variety of research institutions, including the National Institutes of Health and the Centers for Disease Control and Prevention. Reach her at firstname.lastname@example.org.