‘A high-speed train with no destination, that’s how it feels. While just a week earlier, you had no idea.’
Ryan had osteosarcoma, a bone tumor, and underwent a rotationplasty. With this, you can move well again after a while, play sports, jump on trampolines. And most importantly: Ryan would be able to play soccer again. Parents Lisa and Richard talk about the turbulent period the family has been going through since the diagnosis.
‘If Ryan doesn’t want to play football anymore, you know something is really wrong. He was standing by the field, crying.’ A few days earlier, Ryan fell at school, and his knee kept hurting. Two hours after visiting the doctor, mother Lisa, father Richard, and Ryan were in the hospital for scans. Unfortunately, it wasn’t a simple injury: Ryan had osteosarcoma, a bone tumor.
High-speed train
Lisa: ‘Looking back, Ryan’s fall in February this year was a blessing in disguise. That’s how we found out something was wrong. Often, a tumor like this isn’t discovered until puberty, and by then, it can already be in an advanced stage. We discovered it right after the scans in the hospital. Two days later, we were at the Princess Máxima Center.’
‘A high-speed train without an end station, that’s how it suddenly feels. Everything moves very fast, while a week earlier we had no idea anything serious was going on. At the Máxima Center, they did more scans, and within two weeks, the first chemo started.'
Ryan's choice: a rotationplasty
Ryan's tumor shrank after one and a half weeks of chemo. The pain was mostly gone. Richard: ‘But a new scan showed that cancer cells had spread to his growth plate. When that happens, you have three options: an internal growth prosthesis, full amputation of the upper leg, or a rotationplasty. In the last option, they rotate the foot and attach it to the upper leg, turning the ankle joint into a new kind of knee. A prosthesis is then attached to the reversed foot.’
To help Ryan with his decision, doctors and physiotherapists came to his room. Together with Ryan and the family, they discussed the options. Lisa: ‘One doctor talked with us while the other spoke with Ryan. They drew everything on a big board. It was a very open and honest conversation. With a rotationplasty, Ryan would have the best chance of maintaining the quality of life he imagined for himself. After a while, he will be able to move well again, play sports, jump on a trampoline... and most importantly: Ryan will be able to play football again."
Impact on the family
When a family has a seriously ill child, it has a huge impact on everyone. Not only does social life change drastically, but working becomes less of a given. Richard: ‘I still work sometimes as a truck driver. Luckily, my boss is very understanding of our situation, and I can take it week by week to see what I can handle.’
‘In the meantime, I take care of our oldest son, Jayson, a lot. This situation has had a big impact on him too. It has changed him: where he used to play outside a lot, now he helps around the house on his own. Sometimes, he suddenly makes a meal for us. It's very sweet and caring, although you'd prefer it not to be necessary. During important moments, he’s allowed time off from school, and he can come with us to the Máxima Center. Just yesterday, he and Ryan cooked together in the kitchen of the Ronald McDonald House. That’s what we find so special about the Máxima Center, that those beautiful moments can still happen.’
Support from friends
Lisa: ‘For me, working isn’t possible right now; I need to be there for Ryan. I had to call in sick to be able to take care of him. Unfortunately, in the Netherlands, there is little support for parents with a seriously ill child. That adds extra stress for us, on top of the worry about Ryan's illness and treatment. Thankfully, we have a lot of support from the people around us. Friends who cook for us, who take care of the children. Lots of talking, listening...’
Last chemo
Lisa: ‘Ryan will still have a few more rounds of chemo. If the scans in September look good, the treatment should be finished. He’s already busy practicing with his prosthesis. He’s now walking long distances through the halls of the Máxima Center, and he even plays a bit of football again. Amazing. Full rehabilitation will still take some time, but we hope that after the last chemo, we can go on vacation with the family. Just to be 'normal' for a while. It’s been so long since we’ve done something fun together. Altogether, we’ve maybe been home for six weeks since the diagnosis in February. It’s crazy when you think about it.’
Also read:
- ‘I’ve rediscovered my identity and learned what I’m still capable of.’Cherine (35) was 10 years old when she was diagnosed with bone cancer. She had to choose between several intensive treatments: a year of chemotherapy in the United States in the hope of saving her leg, amputation, rotationplasty, or removal of her knee and thigh muscles. She chose the latter. Now she visits the LATER outpatient clinic at the Máxima and works there as well.
- ‘If you have even a little bit of energy, move! Because it really helps in your recovery process.’Tibbe (16) was diagnosed with bone cancer in 2022. He had to make the difficult decision to have part of his lower leg removed. Now, he looks forward with a positive mindset: 'My advice to others: don’t think about it. Just walk. Because when you 'just' walk, you don’t think about how you’re doing it. That’s how it works with a prosthesis too.'
- ‘With all the help, we were still able to spend a valuable month together at home.’Rowan (2) was diagnosed with bone cancer at an exceptionally young age. When he was 1 year old, it was discovered that he had an osteosarcoma in his knee. Six weeks after his last chemotherapy, things went wrong again: a new tumor in the same spot and metastases in his body. Curing was no longer possible. His mother, Laura, shares how she experienced that period and what the Máxima has meant for them.