In November 2019, Phineas, then six years old, fell from the tree while trying to get his plane. He was taken to the hospital by ambulance. The subsequent MRI showed that the fall had been minor, but it also showed that he had a chordoma at the base of his skull. This was a shock for the whole family. Many sleepless nights followed as we tried to find someone who could operate on Phineas.
In January 2020, he was operated on in Greifswald by Professor H. W. Schröder After two long and complex surgeries, and several small surgeries (C1/C2 fused and a VP shunt implanted) following that, he was discharged, to the other end of the country, at the end of February. From April to June Phineas had to go to Heidelberg for proton radiation. This again meant he had to be separated from his siblings and friends, since no siblings were allowed to travel with him because of the Corona virus.
At the end of July, we thought that everything was over for the time being and we celebrated his 7th birthday. Unfortunately, shortly afterward he got meningitis and further examinations revealed metastases in his lungs. We immediately contacted the Chordoma Foundation and after a thorough examination of the case, we were advised to observe and wait.
In 2022, a check-up showed that a side effect of the radiation had occurred, his pituitary gland was no longer producing growth hormones. Now again a decision had to be made: adding hormones, with the risk that this would impact the metastases in his lungs; or not adding them and thereby accepting a maximum height of 130 cm. Together with Phineas, the family decided in favor of hormone therapy and Phineas is looking forward to finally growing again and becoming as tall as his friends.
Now, after almost three years, we have learned to live with Phineas' condition. We are happy that Phineas is a happy child despite all the circumstances. He skis in winter, goes climbing, and does karate and his biggest wish, a BMX bike to do tricks, has also come true.
What has helped and strengthened us? The cohesion of the extended family, friends who offered help in finding the right doctors, cooked a meal once in a while or made Phineas' siblings have a nice day or just a quiet hug. One important takeaway from the time is that parents should get as much information as they can to get the best treatment for their child from the doctors. This is where it has proven helpful to print out the information provided by the Chordoma Foundation and take it with you to each appointment. Being proactive, asking questions, and experiencing ourselves as capable of taking action and making decisions was one way of dealing with all the horrors of the diagnosis and treatment. Last but not least, we are now working together to ensure that families whose child is diagnosed with chordoma are not helpless,but can receive competent help.