Nov 6, 2020

Nancy and Alex Berry were shocked when their son, Jake, was diagnosed with testicular cancer during a sports physical. He was only 16.

In this episode of Your Stories, the devoted parents discuss what it’s like to watch your child compete against cancer and share how the experience changed their family forever.

Nancy and Alex Berry were shocked when their son Jake was diagnosed with testicular cancer during a sports physical. He was only 16. In this episode of Your Stories, the devoted parents discuss what it's like to watch your child compete against cancer and share how the experience changed their family forever.

Jake is six feet, 10 inches tall and an incredible athlete. And with his athleticism, he's had a few injuries along the way, two knee surgeries. Jake was about to be cleared to go back to sports after rehabbing from his second knee surgery. So on this day in January of 2018, we went to the orthopedic surgeon and had such joy when we found out he was cleared to go back to sports.

And then we were headed to get his physical. And I was asked to leave the room. I felt like he was in there with the doctor longer than normal. And when I came back in, the doctor said, there's something wrong. He needs to have an ultrasound as soon as possible.

So no one said cancer, but I immediately thought cancer. The next day, I was able to get the ultrasound. And sure enough, the doctor said there appears to be a tumor in the testicle. And we were immediately sent to a urologist where they then confirmed that it was cancer.

The thought of a 16-year-old having testicular cancer was completely foreign to us. Subsequently, as we found out, it really does change your life forever. The key point that I think was important for us is finding the right care.

16 is a difficult age because it almost doesn't fall into pediatric, and it doesn't quite fall into adult cancer. So initially, many doctors wouldn't see him because he was a child. A lot of doctors wouldn't care for him, didn't want to take him on as a patient.

And then we found out about Dr. Lawrence Einhorn who created the cure for testicular cancer. I think in the '70s, it had a 5% survival rate. And after Dr. Einhorn came up with the chemo regimen, it was a 95% survival rate. So of course, we wanted our son to see him.

At first, they said, well, we don't see adolescents. And so we were dismayed thinking about what we were going to do. And so we wrote a note. Or actually, you wrote a note to Dr. Einhorn. And we talked about Jake. And we also talked about not only what we had gone through, but we sent the lab work.

And I'll never forget the morning he called us. He told us that he would take Jake as a patient and that I believe I can save your son. That was a huge moment of relief. And as I've come to know Dr. Einhorn and learn more about him, I think he helps anyone that he can.

The regimen is brutal, and chemotherapy is brutal. And when someone in your family gets cancer, the whole family gets cancer. We brought grandmas and grandpas and support group to the first chemo event the first time he went. And so they put the drug in his arm for the first time. And he literally started shaking. His eyes rolled back in his head, and he got all red. And he was having basically anaphylactic shock.

Sort of an allergic reaction.

And so as a parent, you're thinking, oh, my god. He's not going to take it. He's going to die.

We thought that there was a chance he wouldn't be able to receive the medicine, that he'd be allergic to it was incredibly frightening.

But they do things. They give you Benadryl, and you get through it.

When Jake was going through treatment, he was in a chemo room with many people. And to watch people of all ages and all demographics go through this experience of worrying about if they're going to live or die and also having to try and survive the treatment, which is so harsh itself, was extremely moving and painful to watch. For Jake, as a 16-year-old losing your hair and not being able to go to school and missing out on sports is an incredibly traumatic experience.

Yeah, I think the hardest part for Jake was he felt isolated.

And really, the chemotherapy made him look very sick. He had lost the color in his face. He certainly did not look like himself. And he's just such a vibrant, amazing kid. And there's so many things to be afraid of during the process-- getting sick or basically to survive the treatment. That was so anxiety provoking to watch my son go through it and worry on a daily basis. He got a mild pneumonia. I was constantly worried about infection.

We had 10 weeks to get through chemo. And so I just focused on the end date. And that's what got me through it. The relief of him getting through the chemo and ringing the bell was he made it. He survived this horrible process. And that was such an incredible experience.

Then you're waiting for tests. Did this work? We flew to Indiana, and we met with Dr. Einhorn. And he looked at the scans. And the best news we ever received in our lives was that Dr. Einhorn determined him cancer free.

I think that was definitely the best memory, and then you move on. And I think that it's how you feel after. The little things to us don't matter. And you live each day to the fullest. You hug your kids. You hug your wife, your family. And you just have an appreciation for life that you might have taken for granted before.

It really has changed me personally. I really feel a calling to help people going through this.

In the '70s, somebody stepped up and gave Dr. Einhorn money to continue his research to try something that never been tried before. And it turned a cancer that was a death sentence into one of the most, if not the most, curable cancers on the planet. There's 100 cancers out there that don't have the same prognosis that somebody in some lab is thinking about ways to cure it. And if we can do our little part to help give back and fund that, but others to do the same thing, the research aspect is critically important.

The main reason we got involved is how important research is and how fortunate we feel that testicular cancer has an incredibly high cure rate and how can we not contribute or help these other cancers to become more curable. And so that to me is a passion that I feel strongly about and has changed for me. And seeing your own child go through something like this, it's life changing.

What really surprised you about the experience? I know my answer, but let's see if it's the same.

Well, you go first. What surprised you?

Just the outpouring of support and the community aspect of it. When somebody you love is going through something like this, just a text or a phone call every day, every other day matters. Just to let people know that you're thinking of them, that gave us and me a lot of comfort. And I got that every day.

I don't know that I would say that this surprised me, but maybe what impressed me the most was how incredible Jake is and that he rarely complained and took this so well and was so confident that this would have a positive outcome. We drew strength from him. My hope for the future is that he just has a normal, healthy, happy life and achieves the things that he wants to achieve in his life. And that's all I can ask for.

Today, Jake is cancer free and continues to advance his baseball career as a star member of his team. His parents support research through Conquer Cancer, the ASCO foundation, so other families can face cancer with the same hope they were given. To learn more about the latest cancer research, visit conquer.org.

Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast. And subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories-- Conquering Cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.