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.’
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.’
Do you want to support the Máxima Center?
Every year, 20 to 35 children are diagnosed with bone cancer. The treatment for these children is intense. Chemotherapy is the foundation of the treatment, along with major surgeries, including amputations. The chances of recovery are limited, and there has been little to no improvement in recent decades. This is why research is needed to better understand bone tumors and ultimately improve treatments. The Princess Máxima Center Foundation raises funds for projects focused on quality of life, innovative care, and groundbreaking research, including research on bone tumors. Would you like to contribute? Click here.
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