TR Press UK - 05-12-2019

Ea got cancer when she was three years old – now her greatest wish is to join her friends again

Ea was only three when she was overtaken by an extremely rare type of cancer. Four years later, she is still living in complete isolation from the outside world. But in a few weeks’ time, she’ll know whether she is well enough to accompany her twin brother to school.

- 1, 2, 3, 4…

Seven-year-old Ea on her knees, counting how many pearls she’s got that are laid out in a cloud shape.

- 9, 10, 11, 12…, she continues.

The white cloud pearls are evenly distributed along Ea’s 20-feet-long pearl string.

The pearl string is a gift to Ea from the Danish Children’s Cancer Foundation and it’s a very special pearl string. Ea calls it her “Super String” in which each of the 450 pearls represents one element in the intensive cancer treatment that Ea has been through during the latest 11 months of her short life.

- 19, 20, 21, 22…, she counts on.

Her parents, Daniel and Carina Solvig Hjorth, are sitting in their couch in their Hillerød flat north of Copenhagen, watching their daughter. Ea’s twin brother, Liam, is in school and her little sister, Mai of four is in kindergarten with her little brother Levi of three.

Ea herself has entered into her 12th month of complete isolation because her immune defence system has been completely shattered due to the intensive cancer treatment she has been through.

Ea is continuing her chase of the white cloud pearls. She’s been given one pearl every time she has been in a general anaesthesia for the last 11 months.

- 25, 26, 27! 27 times I’ve been put to sleep, Ea tells herself enthusiastically.

Her parents are exchanging looks.

An aggressive disease
Ea was hit by cancer the first time at Christmas in 2016. She was only three at the time.

- It was between Christmas and New Year. She was feeling pain in her hip and had some fever and she would rather not walk about the flat, Carina Solvig Hjorth explains.

Ea had some blood tests taken at Nordsjællands Hospital, which is just across the street from the family flat. According to the test results, there was no cause for alarm initially, and the family was sent home again.

- We celebrated New Year together but in January she fell ill again. And this time, she had developed a lot of black and blue marks on her legs. So that’s why we went back to hospital and then things started happening, she continues.

The hospital doctors on the other side of the street had begun suspecting that Ea had contracted leukaemia. She was therefore rushed by ambulance to Rigshospitalet in central Copenhagen where the doctors’ suspicion could be confirmed: Ea was seriously ill.

- We moved into ward 5054, which is the children’s cancer department at Rigshospitalet. Ea started her treatments but after two weeks without responding properly to the treatment, they told us that Ea wasn’t suffering from an ordinary leukaemia. She had contracted the very rare Philadelphia leukaemia, Carina continues.

The disease is extremely aggressive and requires intensive, special treatment.

- Ea did not leave the hospital for the next nine months. It was a very stressful period for all of us, her mother explains.

- Her body has not followed the protocol completely. She has not responded to the treatment as expected. And she has had all the side effects in the book – including the ones she was not expected to have, Carina continues.

When Ea was finally discharged from hospital, an extra year of treatment followed ending in January 2018. Ea, however, still had to be kept in isolation but was allowed into Børnehuset SIV, an institution for children with defective immune systems and their families.

She was still very tired, however, and not at all her true self.

- We had a suspicion that something was very wrong. And suddenly, one day there is a call from someone at Rigshospitalet who tells us they need to check up on something in connection with the blood tests, Carina says, looking at her daughter who has joined her father on the family couch.

Between life and death
In December of 2018, the family’s worst fears were confirmed: Ea had suffered a relapse.

- In connection with her first series of chemotherapy sessions after the relapse resulting in a complete shutdown of her immune defence, she was attacked by an RS virus and a nasty pneumonia which made her lungs collapse, Daniel explains.

Ea was put on the respirator and for the next 11 days, the little girl was hovering between life and death, Carina explains looking at Ea.

- We have, in fact, just been studying your pictures from that time, says Carina to Ea.

- Funny that you slept so long, wasn’t it? And what about the strange tube you had up your nose that allowed you to breathe.., she continues.

Ea nods her head.

New bone marrow
After 11 days in the respirator, Ea’s family could finally breathe a little more easily: Ea was slowly returning to life. But because her type of cancer was so aggressive, she needed an immediate bone marrow transplant.

- Of course, Ea’s relapse was a hard blow on everyone. No matter how hard you try, the whole family suffers. In fact, the disease is everywhere. We have four children and the thing is to consider both the sick child and the other children. You become incredibly isolated in your attempt to make sure that all your children are seen and heard, Daniel explains.

Carina adds,

- Your everyday, well, in fact your whole life is turned upside down, and there is no way you could have prepared for it. First you enter into a kind of shock mode and then you proceed to a survival mode. For you have to be able to manage. Both parents and children are enormously affected, says Carina.

Nobody in Ea’s closest family was able to match Ea’s bone marrow. In the end, it was an anonymous German marrow bone donor who saved Ea’s life.

- After a couple of days, Ea told us that she felt she was getting better, Daniel says.

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Opening the window to Team Rynkeby
After the bone marrow transplant, Ea was left completely without an immune defence. This meant that that she had to be isolated in a special room at Rigshospitalet where she spent 50 days in complete isolation.

- During the isolation she had to stay in her bed because she was not allowed to touch the floor. The windows had to remain closed and if we wished to go nearer to her than one metre, we had to wear masks and gloves just as we had to shower and change into hospital clothes before every visit – even her teddy bear had a string attached to it so that it wouldn’t fall down on the floor, says Daniel and continues:

- Luckily, Ea has a lively fantasy so she was able to pass the time. She played hide and seek in her bed and both her private teacher and her physiotherapist were good playmates to her in the confined space that was available, he says.

In the end, Ea was able to start her de-isolation process and her family could reopen the windows to the world outside. This took place on the very same day as Team Rynkeby started its 18th cycling trip to Paris to support critically ill children and the little patients of the cancer ward were able to on the riders from the hospital windows.

- It is great that the participants are spending so much time on finding sponsors, taking care of their training and lending others a helping hand! We want them to know that their efforts are making an indescribable difference to the families affected. We have benefitted so much from the help and support of the Children’s Cancer Foundation – this has given us a much needed breathing space in our everyday lives, says Daniel who has been unable to manage a regular job like his wife during the last four years while Ea went through her treatment.

- We have basically no economy at all and that’s why it means the world to us that we have been able to borrow the Children’s Cancer Foundation’s summer house in Northern Zealand. This has given us the opportunity to go on holiday with our children and do some of the things that other children are doing, Carina says.

Back to her school friends
Ever since Ea went down with cancer the first time in 2016, she has spent less than half a year among other children. The remaining time has been spent in isolation and that has taken a toll on her relations to school friends.

- Fortunately, there is a growing understanding of the importance of keeping contacts between a sick child and its friends in school. Two of Ea’s school friends have been ambassadors for her class and have paid visits to Ea. We have also talked with her class over FaceTime so Ea could show her friends round her ward, says Carina.

The next two weeks will show whether Ea can be de-isolated from her Hillerød home and return to her school friends in the first grade.

- We sincerely hope that Ea can start school after Christmas at her own pace, says Daniel.

- She has been allowed to join a play group and she can also spend time with the other children if they are completely well. But for now, she cannot start school so we have to stay at home, he continues.

But right now, the family is simply happy for the progress they are seeing.

- Not many months ago, Ea was stuck in a wheelchair and now she can suddenly run and play. During her isolation at Rigshospitalet, she trained every day to become stronger. And when she was finally discharged, she got up from her wheelchair, took her twin brother by the hand and ran out of the ward, says Daniel with a smile.

- All the nurses were clapping their hands in the hallway. That was a great moment, he says.

If you want your company logo on Team Rynkeby’s yellow cycling jersey and support our collection to the Children’s Cancer Foundation, please send us a mail no later than January 17, 2020.

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