Spotlight a Survivor: Sickle Cell Disease: Timina's Story
Timina Kikuyu
Sickle Cell Disease
Gilbert, Arizona
Transplanted in 2023
Many thanks to Phoenix Children's Hospital and The American Society for Transplantation and Cellular Therapy for helping us share Timina's story.
When your transplant took place in 2023, you were 26. That means you spent your childhood and early adulthood living with sickle cell disease. Can you talk about what it was like to grow up with a chronic illness?
Growing up, I never saw sickle cell as an issue. I climbed trees, ran around barefoot, and played. I never used sickle cell as a crutch or as an excuse. But I was often in and out of the hospital, and that’s hard for a little kid.
When I was six, I was not OK with putting needles in my body. Once, I fought off five nurses and my dad to avoid a blood draw! I also lived with some chest pain, but still, I never really saw sickle cell as a problem. It only became a problem in my later teens. As a kid, I could ignore things!
Did you have a sense of what your future would be like, living with sickle cell disease?
I came to peace with it. I remember that at around age 16, I thought: This is going to be my life. I’m going to be in and out of the hospital all the time. And the statistics for sickle cell disease scared me. Usually, a person only lives to age 45 with the disease. Then, when I was 18, I got a blood clot in my right aorta. {Sickle cell disease can cause dangerous blood clots.We tried to remove it twice, but it kept coming back; it was a nagging issue.
Sickle cell disease often runs in families. Did anyone else in your family live with it?
My sister, Simsim. When I was 16, she had a stroke caused by sickle cell disease. She is 6 years older than me, so she
was in college at the time. Luckily, my dad happened to be with her when it happened, and he rushed her to the hospital.
After the stroke, she had a bone marrow transplant. Her recovery from the stroke and from the transplant was really rough.
Around this time, her doctors told me, “You’re next for transplant!” I remember crying and saying I don’t want this, I wasn’t ready. At 16, all I knew was that I didn’t want to go through the same hell my sister went through. At one point, she didn’t know who I was, and she could barely walk to the bathroom. I didn’t want that fate.
The other obstacle was that I needed a 100 % donor match, and I didn’t have one. So, for years, our family didn’t talk much about the transplant. It was out of reach. And then it became possible! My doctor at Phoenix Children’s Hospital said, “We’ve advanced medically, and if you’re willing to do it, we can take cells from your dad and use those.”
Around the same time, in January of 2021, my health issues had grown worse. I was wasting away. You could see it in my body and my face, my muscle loss was so bad. So, I finally took the idea seriously.
By then, my sister was back to normal. She was working and thriving, and I felt hopeful. If my sister could come back from it – if the BMT could take away the root cause of all my medical problems – then why not? So, I told my doctors, “I’m ready to go for it!”
You took a risk with the hope of being cured. Were you nervous? Excited? What was your mindset entering transplant?
I was worried about how going through all this again might be hard on my sister and parents. I was beyond stressed; you can’t go into BMT and not be scared. But I had a mindset of: This is supposed to happen, so I will get through it.
What helped calm you down or ease your anxiety during the experience?
My family! Going through all this, we became closer.
My dad was my donor, of course. He and I had a difficult relationship when I was a young teen. I was very rebellious. I didn’t want to do what he said or follow the rules.
During transplant, I remember a day when he was sitting at the end of my bed and I said, “I know we had a really hard relationship when I was growing up, but I’m really glad you’re here right now. Thank you.” And for the second or third time in my life, I saw my dad cry. I don’t know if I’ll ever be able to fully thank him. I’m happy and lucky that I had my parents and my sister through this whole experience.
My mom was there all the time, she’s a big hugger! My mom is a nut, and I mean that in
the sweetest way. She has so much energy; she takes on all these jobs to help take care of us.
But during the transplant, there were days when she just cried. I can’t imagine being in her shoes, with two sick daughters! But through the whole transplant, she would not let me be by myself. Even though some days I was totally frustrated and probably made it hard, she stayed!
Aside from your family, who were your sources of support?
I had no idea what the isolation would be like, going into transplant. I don’t have a bunch of friends or go to parties or clubs, but I do like having my friends around. Lucky for me, I had a really good nurse, my absolute favorite -- Beth Sabo. I don’t even see her as a nurse; I see her as almost another mom. She took such good care of me. To this day, I still love her and I’ll always love her.
I also had Paige, who is my best friend, a friend version of ‘soul mate.’ We met while working in a nursery school at church. Having someone you can rely on and have ‘stupid fun’ with is the best! We’d watch the kids, blow bubbles with them, and go down their small slide – even though we didn’t fit! I still have videos of her and me singing Disney songs.
Through all of this, Paige was always supportive. She’d ask me, “Can I bring you anything? Are you doing OK?” Having a friend like her makes everything better. We text every day, even though we don’t see each other much. She’s working, she went back to college, and she also teaches at a girls’ volleyball camp. The way she’s living her life inspires me.
It’s the little things that help you through BMT, things that make you laugh. Another one of my friends sent me a pillow in the shape of a waffle that says: I know you’re feeling waffle. To this day, it’s my favorite!
Even with a tremendous amount of support, transplant can be tough. What was your experience like?
Really hard. During that transplant period, I also had a stroke, like my sister did, and I was also unconscious for three weeks. Sometimes, even now, I’ll ask my mom, “What was I doing during those three weeks?” But she will always say, “You don’t wanna know.” After I regained consciousness, I was put on NPO for six weeks, meaning I wasn’t allowed to eat anything. But gradually, little by little, I got better.
On October 6th, 2023, I was OFFICIALLY declared sickle cell free! And all I could eat to celebrate was a single jolly rancher!
How is life without sickle cell disease?
Because I lived with sickle cell disease for 26 years, I barely know how to be sickle cell-free! It’s funny, I’ll go to the
hospital now, and they will talk about my “history” of sickle cell, and I will think, oh yeah, it’s over.
It’s a really big deal to be free, and the impact of that freedom is huge! To know the full force… It’s like I’m in a wind tunnel, like, Holy Heck! I don’t have to go to the hospital anymore, I’m not sick anymore!
I’m still getting my energy back. I’m very much a homebody. I enjoy watching cooking shows like Top Chef and Chopped, as well as shows like Drink Masters and Mixology Masters. Mixology is a skill I want to learn in the future and hopefully turn it into a career.
I also enjoy singing. It’s a gift I’ve been blessed with since birth, coming from a very musical family. For my Make-A-Wish experience, I asked to sing onstage with a band I love, Black Veil Bride. I was in my punk era at the time, so singing with them was like a dream. I got my own tour bus and VIP treatment!
Can you share any ways your transplant experience changed who you are today?
I think the biggest impact the transplant had on me was that it reminded me to take things slow. I’m a “we have to do this NOW!” kind of person. Taking things one day at a time and giving myself time to actually rest and recover was a big lesson. I am teaching myself to be patient with my body.
Phoenix Children's Hospital, in collaboration with Mayo Clinic Arizona, is the only pediatric bone marrow transplant program accredited by the Foundation for the Accreditation of Cellular Therapy (FACT) in the Phoenix Valley. The program has maintained a 1+ rating through the CIBMTR for 5 years in a row and our survival rates are in the top 10% nationally. We offer novel therapies, participate in local and national clinical research, and have an experienced multidisciplinary team to care for patients and families throughout therapy and survivorship.
The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education, and clinical practice to deliver the best, comprehensive patient care.
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