Kristin: In May 2010, I got a bump on my head. I showed my mom and she said, “Oh, it’s just a cyst.” About a month later, I started losing hair around that area, and it had gotten bigger. Everyone thought it was a cyst. I didn’t have surgery ‘til the end of July 2010 … [The surgeon said], “Oh my gosh, I don’t know what this is. This is not a cyst.”
I received a call on August 5, 2010 when I was at work [in San Francisco]. They couldn’t believe it, they had to double-check twice, but it was acute lymphoblastic leukemia.
When he told me, I was in total shock, because that wasn’t even something that any of us was thinking. He said that it was a very aggressive type of cancer, and that I had to leave work right away to do blood work. He’d already made an appointment with me to see an oncologist [the next day].
It was very overwhelming when [my mom and I] met with the oncologist, because we didn’t know anyone who had had leukemia, ever. We had no idea of how intense the chemo regimen is. It’s all inpatient and I had to be off work for at least a year, they were estimating. That was all so much to take in at the time.
I’ve always looked at life like this too will pass, or I will rise, I will move above it, I will get through it, I will fight. I’ve always been a very hopeful, very positive person. I do have my faith, but I think you don’t really know how strong you are until something happens to you. No matter what, no matter where the journey led, I was going to go out fighting. I thought I would do everything I could, even if my life ended short.
Janet (Kristin's mother): There are some Celtic caim prayers, prayers of protection, just simple ones that I would bless her with or pray, like ‘Circle me oh Lord” or, “Keep hope within, despair without.” Because it’s so easy to go over to the fear side. That just gets you stuck. [Instead], you can just stay there, and deal with what’s happening on the spot.
As a mother, my big prayer was that she would have a peaceful heart through all of this and not let the fear be overwhelming.
Chemo side effects, recurrence and a sliver of hope
Janet: Unknown to her, her first chemo bag, I left the room and went out in the hall and cried ― you’re seeing poison put in your daughter’s body. There is the hope that it’s killing cancer cells, but you also know it’s killing healthy tissues.
Kristin: I had tons of side effects [from chemotherapy]: definitely physical weakness, chronic fatigue, shortness of breath because of low blood counts … catching lots of bacterial infections and viruses. I’d get just really weird things, like eye issues, or abscesses growing on my leg full of pus, skin rashes. Almost like anything was possible.
[The two years of chemo] did get me in remission for one and a half years. But then I relapsed with the exact same cancer. In February 2014, I discovered a neck mass. A biopsy was done in March 2014 and confirmed it was the same cancer. At that time I was 39.
Benny (Kristin’s boyfriend, who met her during her remission): At first, you just don’t know what’s going on. I had no idea ― I knew cancer was treated with chemotherapy and so on ― but you really don’t know until you experience it. So at first it was just a mad rush to offload my life for Kristin. She’d been through it before, so she was very organized in how it was done, I was just following her lead. Basically you have three or four days to offload your life for the next year or so … house stuff, how you’re going to pay your bills … her work, her cats, her housing. Basically, you’re living your life normally and then it just stops. Absolutely stops.
Kristin: I underwent salvage chemotherapy, but it was discovered in April 2014 that the cancer had spread, and the chemotherapy wasn’t working.
Kristin was referred to Stanford University Medical Center for a clinical trial of an experimental chemotherapy regimen. During this time, the doctors also began to prepare for a bone marrow transplant for Kristin, in which her diseased blood and immune system would be destroyed and replaced with healthy blood stem cells from a donor.
Besides the chemo trial, Kristin’s doctor mentioned another possibility for her: finding a clinical trial of CAR T-cells. CAR T-cell therapy is an experimental immunotherapy strategy in which patients’ immune cells are engineered with a specialized receptor that allows them to selectively destroy cancer cells.
Kristin: My Mom, because she’s really good at researching, looked into it. She started reading all about it, finding all these articles … She said, “We have to do this. We’ve got to do the CAR T cells.”
Janet: I think this is the future. Once you’ve seen what the traditional protocols do, this is the hope, not to compromise the healthy body ― [it’s] just exciting. It just makes so much sense, to use one’s own body to help fight. … With immunotherapy, it is like this small army of your own cells able to go tackle these mutant [cancer] cells.
During [Kristin’s] treatment at Stanford, her Kaiser oncologist came in and was really distraught from a meeting that the bone marrow donor had [become unavailable]. She had just found out so she was really shook up. And I had this overwhelming sense of peace because I thought maybe this immunotherapy would be a possibility.
The promise of a CAR T-cell immunotherapy trial
Kristin’s doctors in California connected her with Dr. David Maloney at Fred Hutch, who is one of the leaders of a clinical trial testing CAR T cells against certain blood cancers, including Kristin’s type of leukemia.
Kristin: Meanwhile, they still had me preparing for [a partially matched, or haploidentical] transplant, going through the testing. And while I was going through the testing, they found that the cancer was back. So I couldn’t pursue the transplant anyways. So they were just like, “Wow, we’ve really got to get on [the CAR T-cell trial at Fred Hutch] in Seattle. We’ve really got to see if we can get you in, because now there’s nothing.”
Benny: I guess I never internalized that, because Kristin was so positive in her thinking, and her mom, as well. That specific phrase, “There’s nothing else for you,” never really sunk in too much. Because she had a great team, great doctors, and we always hoped that something else would come up. We didn’t know what it would be. … At the time, she was just so beat down by the treatment at Stanford, really just absolutely beat down, and the caregiving role is so exhausting, you have to focus so much on caregiving. You’re just kind of rolling with it. So I never really stopped to think there’s nothing else, really, until afterwards.
Kristin: I got transferred over in November of 2014 to start the CAR T-cell immunotherapy trial. And of course the hope was to get into remission so that I could finally get bone marrow transplant following that. So I travelled to Seattle, and I started the clinical trial on November 4. It started with a series of testing to make sure I was physically eligible.
The big day was November 19, and that’s when I received the autologous transplant infusion of my engineered T cells.
Benny: What really stood out from the day she received her T cells was just the excitement of it all. We were excited, the nurses were excited, Dr. Maloney was excited. There was a lot of excitement about this type of treatment. You don’t see that excitement when you go in for chemo ― the sense that this is a new technology. There’s only so many people that have had it in the world, and she was able to have it.
I’ve seen Kristin go through so much with chemo. … The T-cell treatment was by far so much easier than any chemotherapy could have been. It’s really just a miracle when you compare the two: chemotherapy and what it does to you and T-cell therapy. Of course we don’t know the long-term effects of T cells, but it’s night and day. There’s really no comparison, as far as I’m concerned.
Kristin: I had a bone marrow biopsy on December 12 to check on the success of the infusion. We received the awesome news that I had been placed in remission. No cancer evidence was found. And I had a chromosome abnormality that was gone, which was awesome. So it was perfect. It was really the best Christmas gift for me and my family.
[My Seattle doctors] discussed the stem cell transplant options that were out there as the best next step for long-term survival and to get some more time. It really seemed that because I didn’t have a match ― there was no match on the national bone marrow registry or within my family ― that really the best thing to do, and hope for cure, was to do the transplant clinical trial done in Seattle by Dr. [Colleen] Delaney.
Stem cell transplant offers 'chance for life' ― and complications
Kristin enrolled in a clinical trial of cord blood transplantation led by Dr. Delaney. Cord blood is a lifesaving option for the thousands of patients each year who, like Kristin, do not have a conventional adult donor match.
Kristin: I received my transplant on February 4, 2015. I had [cord blood from] two infants, a baby girl and a baby boy.
Janet: It was a chance for life for her. And it didn’t hit me until in the room, when they brought the bags in and hung them, that this was really a sacred moment. That this was a potential of life. That it was really another mother giving the gift of life to my child. I was really overcome with the sacredness of it.
Kristin: [After] a cord blood transplant, your immune system is an infant’s. Unfortunately in June of 2015, I did get a couple of viruses. … Those are thought to have led to [what happened] in July: I became quadriplegic. … Lesions formed on brain and my spinal cord, which led to total body paralysis and severe neurological issues.
Janet: She was telling me she was really at peace, she was ready to die now, because she couldn’t go on in that way, with the paralysis from the neck down. I was told by a doctor that she would not survive that week. My prayer then was that she would face this without being fearful. She was so peaceful, it was frightening actually. After a couple weeks, when it looked like she was going to survive it, then [the question was,] how do you live in that way?
Kristin: There was someone who came into my room, a volunteer who had contracted some other virus that had left her paralyzed. I remember, she walked into my room. Her point was, if you have the will you will overcome it. Even if you are disabled for life, you will find a way to overcome the challenge. You just have got to work for it. From that point forward, it gave me hope.
Janet: For her going from that, her dream was just to stand upright. She has reached that, and now [is] able to walk with the cane and even practicing with nothing. My prayer and hope for her is continued healing for balance and endurance, and to make new dreams.
Kristin: I just celebrated my one-year anniversary [of the transplant] on February 4, and I’m still in remission so that’s very exciting. We went out to a restaurant, my mom and my boyfriend, and had a good meal and dessert. My family sent me all these greetings; I got cards from a lot of people. Really, it is kind of going to be my new birthday going forward.
All these things kept happening on the cancer journey, but the fact is that choosing hope was always the guiding force behind it. No matter how everything plays out, no matter what happens. It’s just that you always have to hope. You have another day, you’re still here, and whatever it is you make the best of it. My goal really is: If I can somehow give back, if I can help other cancer patients through what I’ve learned, the inspirations that help me, to educate them, support them ― then that’s what I want to do.
My hope is that by educating people on everything I’ve learned, the immunotherapy, the cord blood, just everything, that it can help someone else in the future ― some other patient who’s waiting for something, some kind of hope, some new thing that they can try to fight their cancer.
