After Leukemia and 400 Days in the Hospital: How Selma Is Doing

Hi, friends. Almost a year and a half ago, we told you about little Selma, who was diagnosed with leukemia (you can read that story here). Leukemia is the most common type of cancer in children and teens. In Germany, about 600 children under 15 are diagnosed with it every year. “Yesterday my child was still at daycare, and the next day she suddenly had cancer,” said Selma’s mom, Josefina, back then, still in shock. Selma spent more than 400 days in the hospital. We asked Josefina how Selma and the whole family are doing today.

Dear Josefina, the most important question first: How is Selma?

Selma is doing well, all things considered. She’s back at daycare and getting stronger all the time. Right now she’s in maintenance therapy, which means she still gets chemotherapy and antibiotics at home every day, as pills and as liquid. Every two weeks we go to the University Medical Center Schleswig-Holstein (UKSH) to have her blood counts checked. You can still tell she can’t keep up physically with the other kids. We hope that’s because of the medication.

There was a real scare along the way, though, wasn’t there?

In February and March, Selma’s blood counts were extremely bad, so the doctors suspected a relapse, and we were back at the hospital for tests every single day. All the fears came rushing back instantly. When you’re on the pediatric cancer ward every day again, it hits you that the everyday life we fought so hard to get back is always hanging by a thread.

Her two sisters are older now, too, and they ask more questions about why Mom and Dad were so scared and worried. In the end, an infection turned out to be the cause of the bad blood counts, and by April we were able to go back to weekly checkups. This cancer still runs our daily life, which is why we decided to do another rehab stay in December.

In your last interview, you told us you were running on autopilot. You had a family rehab stay coming up then, too. (In Germany, families can go to a rehab clinic together after a serious illness.) Did it help the way you’d hoped?

The last rehab stay saved us as a family. The constant split in our family, with Selma and me in the hospital and my husband at home with the two sisters, took a huge toll on us. So it’s wonderful that places like the SyltKlinik on the island of Sylt exist for families like ours. We all relaxed right away, and we parents could finally breathe again.

We had lots of conversations with psychologists, both as a couple and on our own. What had happened needed to be named out loud, and there was room for tears, but also for looking ahead. That was really good for us as a couple, and so were the conversations with other parents who’d been through the same thing.

During that time, we were finally able to listen to ourselves again. What do I actually enjoy? What is good for me? As a family, we did art therapy together and painted a picture of a lighthouse. It’s supposed to show us the way and always remind us of those wonderful four weeks.

How are Selma’s two sisters doing?

The sisters are doing well, all things considered. They’re getting older and they ask a lot of questions. During school breaks, I try to take them to the hospital with me so they can be part of Selma’s world and know what goes on there. By now, we tell them that all three of them are superheroes, because Selma would have had a hard time getting through all of this without her amazing sisters. Other than that, we also try to create afternoons where each girl can do her own hobby and be the center of attention all by herself.

After such a long stretch of worry, do you feel like you can be completely carefree again?

Being completely carefree is hard for me. We have to find a way to live with the fear that Selma could get sick again. We keep trying to turn our focus back to our three girls and see how full of life and happy they are. We really do enjoy the little things in life a lot more now, and we don’t get worked up over small stuff anymore. All of this has definitely given us a different perspective on life, and we live very much in the here and now.

What gives you strength? Where do you recharge?

I’ve discovered running. I need moments just for myself. This weekend I’m running a half marathon in Hamburg. Time as a couple and time with girlfriends does me good, too. And I’m really looking forward to our family vacation over the school break.

In just a few weeks, the next milestone is coming up. Tell us what happens then.

In three weeks, all of her medications will be stopped completely. That’s a big step for all of us. For two years now, giving her medication every day has been part of our lives. On the one hand, we’re hugely excited. On the other hand, the fear stays. The fear that the cancer will come back at exactly that moment. We’re heading straight out on vacation, and we’re confident that Selma will get stronger every day and that we’ll be able to clear our heads.

Selma has spent so many days in the hospital and had to get through so much because of the leukemia. Has it changed who she is?

The hospital became a second home for us. It sounds harsh, but the staff at UKSH manage to turn that place into a place full of kids’ laughter. So Selma likes being there, which is incredibly important.

She talks about her illness every day, and we try to answer all her questions as best we can. She still has a hard time making friends her own age and working through conflicts with them. That’s understandable in a way, after a year of being extremely isolated from other people. Otherwise, thankfully, she’s still our happy, full-of-life girl, and that gives us an enormous amount of strength.