TR Press UK - 30-06-2018

I can make a difference for Julius by cycling to Paris

Jakob Kargaard’s six-year-old son is seriously ill with cancer. So it is with a heavy heart, but with the feeling that he can actually help make a difference for his sick son, that Jakob Kargaard is today getting in the saddle to bike to Paris with Team Rynkeby.

Jakob Kargaard knew instinctively that something was terribly wrong with his six-year-old son, Julius, when his mobile phone kept vibrating in the back pocket of his cycling jersey one Sunday in May.

Jakob was out training with teammates from Team Rynkeby Storstrøm, and when he finally got the opportunity to stop and take out his mobile phone, there were a number of missed calls from his ex-wife Liff Olivia Bytov.

“She said that I had to hurry to get to Rigshospitalet because the doctors were convinced that Julius had suffered a relapse,” says Jakob Kargaard, who was still wearing his sweaty, yellow cycling clothing when, a little later that day, he was apprised of the doctors’ fears for his son.

The cancer, acute lymphoblastic leukaemia (ALL) which Julius was diagnosed with when he was just 11 months old – while Jacob and Liff were still married – had returned.

In a heartbeat, the lives of these three people were once again turned upside-down.

“Julius is now six years old, so he is undergoing the process in a completely different way to the first time. He understands that he is in the hospital and he understands that he is seriously ill. And we have to explain to him that when dad and mum cry, it is simply because we feel bad for him,” says Jakob Kargaard.

Rosters and practicalities
The day after the shock, Julius was given a bone marrow test to finally clarify what type of cancer he was suffering from. And while Julius was under full anaesthesia, Jakob and Liff for the first time had the opportunity to discuss how to cope with the process and who should take leave.

Jakob had – of all places – just been hired by the Children’s Cancer Foundation (Børncancerfonden) and, after only 10-12 days of employment, he had to go to the director and request leave to care for his son.

“For Liff and I, this is a whole new situation, because we are no longer husband and wife. Now we are dad and mum with our new partners, whom we really want to protect from wearing them out in the same way that we did with each other during Julius’s first bout with cancer. So we have done things like create rosters, because that’s something we can manage – we cannot control all the medical processes that Julius must go through, but with other things, we can cope,” says Jakob Kargaard.

It is a relapse
The following day, Jakob and Liff confirmed what they basically already knew, namely that Julius had experienced a relapse.

“It is obvious that the treatment that Julius received the first time was not sufficient since the disease has returned. Some diseased cells have taken up residence somewhere in his body, so now there is two-and-a-half years of treatment ahead – if the chemo works,” says Jakob Kargaard.

Thought it was over
Since Julius’s first course of treatment, there have been new treatment protocols – including very strong drugs that hit the body like a tsunami. It is therefore not a question of whether there are any side effects – it is a question of how bad they are.

“The medicine has made it so that he is currently completely without an immune system. This means that he is receptive to every type of side effect,” says Jakob Kargaard, and lists a number of the side effects that Julius has been suffering from in recent weeks.

“Pancreatitis, pneumonia, sore throat, two fungal infections of the lungs, yeast and mould, fungus in the blood, fungus in his medication port, mouth infection, mucosal inflammation and constipation. In addition, he has been given a catheter because he cannot urinate, and he has such severe pain in his legs that he cannot walk,” he says.

And just when Jakob and Liff didn’t think that it could get any worse, Julius also suffered serious bleeding in his stomach that caused him to lose a whole litre of blood within a few hours.

“It was quite severe and I was actually sure that it was all over. I was sitting in there alone, and suddenly his body temperature fell to just 34.5 degrees, and his duvet and pillows were completely soaked by sweat. His eyes looked like he was ready to give up,” says Jakob, and takes a deep breath.

“At that point I was silently saying goodbye to him. I felt that things were terribly serious, as was confirmed by the fact that there were suddenly eight people in the room with backpacks and all sorts of appliances, and I could see that there was a real sense of urgency,” he says.

Can make a difference on the bike
After a month in which Julius’s condition was critical, he is now in stable condition. And a few days ago he was also pain-free in his stomach for the first time. The progress has made Jakob certain that he must cycle to Paris with Team Rynkeby.

“Julius is where he must be, and he is in the best hands. He is stable. Of course I wouldn’t go if I felt it was irresponsible, but on the other hand, I feel that I can do something for him by cycling to Paris and helping to create some attention for our entire project and taking part in raising more money for research into childhood cancer.

Only one to two percent of patients suffer a relapse with the type of cancer that Julius has, which means that we do not really have any statistically sharp results for which treatment protocol is the best to follow. I feel that I can contribute by getting on the bike – and I know it will mean a lot to Julius and our whole team.

But if Julius’s situation changes, then naturally I’ll be on the first flight home,” says Jakob Kargaard, who is touched by the support he has received from teammates on Team Rynkeby Storstrøm – which during the trip to Paris has renamed the team to “Team Rynkeby Julius”.

“Team Rynkeby is not just a fundraising project. It is a community where people look after one another. My teammates have really helped me and my family so much – they’ve looked after my house, emptied the mailbox and made meals. It’s quite amazing to experience how people go through hell and high water for each other,” he says.

You can follow Jakob Kargaard and the rest of Team Rynkeby Julius all the way to Paris at www.team-rynkeby.com/LIVE2018.

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