Interview with three-time leukemia survivor Tom Barendregt

For those who have faced a deadly disease such as leukemia, it seems like life has been divided into ‘before’ and ‘after’. When you are on the waiting list for a stem cell transplant, you just have to wait and hope a suitable donor will be found. We got to interview leukemia survivor Tom Barendregt (22) about successfully battling this violent disease not once, not twice, but three times. Read more about Tom’s first-hand experience in receiving a stem cell transplantation and his understanding of how crucial it is to have strong spirit during such uncertain times.

Can you tell me a little bit about yourself. What is your life like and how did you get diagnosed with leukemia for the first time?
Before I got diagnosed with leukemia, I played ice hockey on a professional level. On the age of fourteen I already got my first professional contract in the first division of the Netherlands. When I was fifteen, I transferred to the Colorado Thunderbirds in Denver in the United States. I played here for one year, but due to compulsory education, I had to move back to the Netherlands to finish school. While finishing school I played in the Dutch first division again. From the moment I finished school I moved back to the US to play in the USHL, the highest league in the world for guys until the age of 21. Just before the start of the season I started to get weird symptoms like extreme tiredness, bruises on my body and pain in my lower back. I visited multiple doctors and tried different therapies, but nothing seemed to help. I decided to go to the hospital where they took a blood sample. They immediately diagnosed me with leukemia, a disease I had never heard about before. My suggestion was to give me some medication so that I could start the ice hockey season. But when they told me that the leukemia was in a very far stage and that one ice hockey puck to my body could be life threatening, I realized that it was very serious. Instead of starting the ice hockey season, I ended up in the hospital to start chemotherapy. The start of another type of top sport: fighting leukemia.

“I ended up in the hospital to start chemotherapy. The start of another type of top sport: fighting leukemia.”

So when you got diagnosed with leukemia, you were all alone in a foreign country?
Yes, that’s right. The only people that were around at that moment were my host family and my former girlfriend, who was about to start her study in Madison. Since the leukemia was already in a very far stage, it was too risky to fly me back to the Netherlands for treatment. One day after the diagnosis, I was hospitalized in the University Hospital in Madison and my father and the father of my former girlfriend travelled to the US to support me in the process.

Can you tell us something about what you have been going through from the moment you started treatment?
Before I started treatment, I was confronted with the message that the treatment would pose a high risk for infertility. I was 17 years old at that time, so I wasn’t thinking of having children at all. However, to be prepared for a potential wish for children in the future, I was sent into a room with a plastic jar and a playboy magazine. Then we started the induction phase, which is 30 days of chemotherapy. After one week I got a severe allergic reaction that nearly killed me. For the remaining 3-4 weeks they switched to intramuscular chemotherapy, which is given as injection into a muscle. I had many bone marrow punctures and lumbar punctures to see if there was cancer in my brain. Luckily there were no cancer cells in my brain, but they injected chemo there anyway for preventive reasons. After all, leukemia can hide anywhere.

“Leukemia can hide anywhere”

How long did it take until a suitable donor was found and you actually got a transplant?
There are multiple ways to fight leukemia, a stem cell transplantation is not always part of it. In my case, they decided on a treatment without a stem cell transplantation at first, so only chemotherapy and steroids. Four months after my diagnosis, they recognized that my leukemia was pretty aggressive and they therefore decided to change the method and continue with a stem cell transplantation. I consider myself lucky that I quickly matched with multiple donors in the database. When you are more racially mixed, it gets more complicated to find a donor and it often takes months or even years. Time you don’t have when you suffer from a life threatening disease like leukemia. Before you start with the stem cell transplantation, you receive treatment to destroy the cancer cells, your own bone marrow cells, and immune cells. So your body is quite destroyed. Then you get a transplant.

“I consider myself lucky that I quickly matched with multiple donors in the database”

How long did the recovery take place
From the moment you receive the stem cells, you are far from done. First of all you are monitored regularly to measure the effectiveness of the transplantation. In my case, I had pretty severe graft-versus-host symptoms, meaning that the donor T cells were attacking my healthy cells.
After approximately 9 days, they saw that it was starting to work. Exactly two weeks after I got my transplant I left the hospital. This was extremely fast, because normally you’re there for 6-8 weeks. After 3 months they did a bone marrow puncture to check how much of the bone marrow was now from the donor.
The whole transplantation and coping with its side effects took me an additional 7-9 months. And like I said, even when they don’t see the leukemia anymore, it can always come back.

And it did come back… twice.
How did the second and third treatment compare to what you had been through already? Did it start all over again, or was it different from the first time?
With my second diagnosis they suggested a new treatment method called CAR-T therapy. In CAR-T, T-cells are taken from your blood and modified in the lab by adding a man-made receptor. This receptor helps to identify the bad cells.
The third treatment was comparable with my first since I had a stem cell transplantation. In principle these treatments were pretty much the same, the main difference was that with the third treatment they used immunotherapy instead of chemotherapy. Immunotherapy is a relatively new cancer treatment that boosts the immune response in the body as well as teach the immune system how to identify and destroy cancer. The reason why they tried this different method is because there were mutated leukemic cells hiding in my testicle. Since these mutated cells had another genetic code (CD22), it was not recognized by the CD19 CAR-T cells.
An interesting fact is that both with the second and third diagnosis, the leukemic cells were hiding in my testicles. More and more research shows that this is a very common place for the cells to hide in a men’s body, therefore radiation on the testicles is included in the standard treatment procedure in the US. Upon my last treatment, I had twelve radiation sessions on my testicles just before the transplantation. This was to minimize the chance that leukemic cells were able to hide there again.

Your third fight against leukemia was during the first months of COVID-19. Since your immune system was (about to be) killed by chemo, were you afraid that COVID-19 could get to you? |
When you are in the process of radiation and stem cell transplantation, a cold is already dangerous to you. So you are very careful, whether there is a pandemic or not. At that time, the lockdown was in effect and the only main difference I experienced was that the visitor schedule in the hospital was heavily regulated. I therefore took a flat screen TV with PlayStation and some dumbbells with me to the hospital to keep myself busy. After the transplantation it was easier to go outside, since it was very quiet on the streets and everyone kept their distance.
Since acute leukemia is life-threatening, unlike other less life-threatening diseases, they didn’t postpone my treatment and transplantation. Because of the pandemic, it did take a bit longer to transport the stem cells from my donor in Germany to the Netherlands.

You have beaten leukemia three times now. After so many times, how do you stay positive?
I think the most important thing is that I put everything in perspective. When I think of everything I have been through and the fact that I nearly faced death, every day that I am not ill is a good day. Nowadays, I only put effort in the things I like to do and invest in the persons I like to have around me. I enjoy life to the fullest. By eating a healthy diet and exercising regularly, I make sure my body is ready for any battle to come.

“I focused on the things I could control, and let go of what I couldn’t”

What would you say to someone who is  at the start of the fight against leukemia or another type of cancer?
It is hard to accept that you don’t have control over the way your body is dealing with the disease and whether your will survive or not. What helped me a lot was to focus on the things I could control, and let go of what I couldn’t control. For me this meant that good nutrition and exercise was more important than ever and I focused on gaining knowledge about the disease so that I could join the conversation and be involved in the decision-making process. Being in control over the things you can control also gives you peace. In case you would die, you would at least know that you did everything within your power.
Another thing that I would recommend is to focus on the people that you really care about. When you are diagnosed with leukemia or any other life-threatening disease, you get a lot of attention most of the time. Instead of investing in all these people, focus on the ones you rely on and care about the most.
It might also help to get in touch with fellow sufferers since they truly understand what you are going through.

Last question: were you able to play ice hockey on a professional level again?
The thing is that you have a higher chance on playing ice hockey on a professional level when you perform well in a junior hockey league between the age of 18-21. I was treated for leukemia at that time, therefore I have a slighter chance to get a contract in the US. Playing ice hockey in the first division of the Netherlands might be a possibility, however this is not the level I used to play so then it would be more like a hobby.
Therefore, I am focusing on other things at the moment. I get a lot of energy from motivational speaking and being an entrepreneur, working on healthy food products in cooperation with an American company. I just enjoy life to the fullest and focus on the things that make me happy!

Thank you Tom, for the inspirational story! It is really admirable how positive you are. We wish you all the best for the future!

Do you want to learn more about stem cell donation and how you can join the registry?
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