Lovisa didn’t stand a chance
It is every parent's worst nightmare to hear that your child has no chance of survival. But this is the reality for children diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma), a tumour located in the brain stem. It’s a disease that no child has survived. "We got 10 months with Lovisa before she passed away", says Thomas Rydström, currently cycling towards Paris with TRGM Malmö as a tribute to his daughter.
A photo of a happy little 5-year-old girl with red hair has a special place on Thomas Rydström's bike. A girl who never got to celebrate her 6th birthday. Instead, she spent the last months of her life in hospital.
Lovisa suffered from a type of cancer that currently no child has survived. Even though statistics now show an 85 percent survival rate for children with cancer, there are still diagnosis that lack research. In other words, Lovisa didn't stand a chance.
- Lovisa was a warrior princess. She loved dressing up in princess dresses and everything thing that had glitter and glamour as much as she loved playing with swords. She was our own little Merida, just like in the movie "Brave", says Thomas Rydström and continues;
- She was so energetic. She would run and jump everywhere. That's why it was so obvious that something was wrong when she became ill, he explains. They realised how serious it was the minute we arrived in A&E, so we were very lucky.
A tumour the size of a ping-pong ball
Everything happened really quickly after that first visit to A&E, says Thomas.
- Lovisa had her head X-rayed and we knew already then that this could be really, really bad. The X-ray showed a tumour the size of a ping-pong ball right in the middle of her brain stem, he says and continues;
- The worst thing about this type of cancer is that it shuts down your body's functions one by one, while you're still able to function cognatively. So you have a fully functioning child in there somewhere, unable to communicate with the outside world. You can tell how the body becomes more and more paralysed, and in the end, the disease also shuts down your heart and lungs, and then you die. The issue with this kind of tumour is that it can't be removed surgically because of where it is in the brain and it also won't react to radiation.
"We are always with you"
Thomas says Lovisa knew it wouldn't end well, especially when the doctors decided to take her off the treatment.
- I think she understood she would die, he says. Probably before Ulrika and I did. She had a lot of thoughts about death, although she probably didn't understand exactly what it meant. But to her, the worst and scariest thing was not being able to be with her mother and father anymore. And that was terribly difficult to hear.
Thomas says he and his wife Ulrika stayed with Lovisa the whole time, and that she took her last breath while he held her in his arms.
- We put the inscription "We are always with you" on her grave, and we hope she still knew that in those last moments, he says.
10 years old
Lovisa would have been 10 years old this year, and Thomas mentions she was a complete "daddy's girl".
- She would have loved the fact that I am cycling all the way to Paris, he says. She probably would have wanted to do it too. She was so energetic. If it wasn't for Lovisa, I probably wouldn't have known about this project and I probably wouldn't be here doing such a crazy thing right now. I have always been a bit of a couch potato, staying in and playing computer games all day. So I am amazed at how much you can build your body and achieve during one year of intense training. This project has so many positive aspects. It's absolutely amazing!
Hope for a treatment that works
A treatment is yet to be found for DIPG, but Thomas has great hopes that there will be one in the future.
- Right now there is research being done on the same type of tumour as the one Lovisa had, and that is great news. Four years ago there was no reasearch at all, and now there are several funded research projects. The Swedish Childhood Cancer Fund accounts for a large portion of that funding, so it is incredibly important to me to be a part of this project. A project that makes such a noticable difference to childhood cancer research. If we can break that 0 percent, if we can have one, just one child survive, we have come a long way. That will give hope to the parents who have children diagnosed with this type of cancer. We can do so many incredible things in this world, of course we can beat cancer too, he consludes.