It all started in the summer of 2019, when Lex first noticed mild nerve twitching in his right arm. The twitches slowly developed into dexterity and motor skill difficulties followed by a weakening of muscle strength. Absolutely disastrous for a professional percussionist. Lex was treated by a physiotherapist and osteopath for months with no improvement. After about a year, Lex was referred to a neurologist who ordered a whole range of tests and scans.
I was so naïve, when I opened the MRI report on the 5th of October 2020 in preparation to our appointment with the neurologist. What I read in the report hit me like a ton of bricks: Lex had a tumour of 5 cm in his neck (spinal cord). Due to my scientific background in oncology, I immediately understood the full scope of what this meant. In a state of mental breakdown, I had to explain to my husband that we should not expect any positive news. As it happens, the consultation with the neurologist was a relief. Apparently, the chance the tumour would be malignant was negligible. We were referred to the Academic Medical Centre (AMC) in Amsterdam for treatment. During a videocall with the neurosurgeon it became clear that surgery was our only option. It would entail a complex operation but with minimal risk, which was soothing to a young father. Sofie was a year and half at the time. But there was also grim news: the complaints that had developed so far will not ever improve or heal. Lex, who is a musician in heart and soul, saw his career as percussionist, music teacher conductor go up in smoke.
Given the complexity of the required medical team, it took a while before Lex could be operated on. COVID-19 threw a spanner in the works and we lived in uncertainty for a long time. Lex was looking forward to the surgery, wanted to discover what his future in music could be, build alternatives. And then suddenly the time had come on February 26, 2021. Lex went into surgery incredibly relaxed; he had no fear. For me, however, followed a nerve-racking day. After an eight-hour operation, the neurosurgeon called: the operation itself had gone well, but they had not been able to remove the tumor completely. There was also some temporary loss of signal to arms and legs, nothing unexpected.
I never thought that after this operation “with limited risks” the rollercoaster would really start. Unfortunately, the “temporary signal loss” soon turned out to be an incomplete spinal cord injury. Four weeks after Lex started a long rehabilitation in Heliomare with unprecedented optimism, the devastating results of the tissue examination came. It turned out to be a rare, aggressive form of cancer: Diffuse Midline Glioma (DMG) with the H3 K27M mutation. A mutation that mainly occurs in children and about which little is known, especially in adults. Nobody expected this. There is no cure, the best outcome would be that the tumor would not grow any further. To stop the growth, radiation was immediately started. We drove to the AMC together every working day for six weeks. Monday May 31, 2021 was the last radiation.
Now we have to wait and see, without further treatment the prognosis is very poor. The chance that Lex will eventually die from this is very high. The chances that the radiationtherapy has worked sufficiently to stop the tumor from growing is small and if the tumor starts to grow again, the conventional treatment options are very limited and not very effective. We are very blessed that Lex's tumor is stable as of May 31 2021, but the bomb inside his body could explode at any moment.
Fortunately, there are ongoing studies into treating this type of cancer, but all of them abroad and especially in the US. There are already a number of promising developments. But to have a chance of an effective treatment and possible cure, a lot of money is needed, since the insurer does not reimburse treatment abroad. All in all, the costs can amount to around €300,000!!!
Currently Lex is only eligible to participate in one of these studies when his tumor has started growing again. Once that happens, the chances of recovery are only reduced. We don't want to wait, we want to prevent the tumor from growing and we want to get on with our lives as a family. At the moment, there is only one treatment option: the new drug ONC201. The drug has even made the tumor disappear completely in several patients. An outcome that until recently was considered impossible. Because this drug is still very new, it is not yet covered by the health insurance despite the impressive results. The treatment can be provided through a clinic in Germany and will cost approximately €2000 per week. We are considering a treatment period of six to twelve months, but that may not even be enough. We also do not yet know if Lex can receive this treatment in Germany. In addition, we cannot start ONC201 until there is enough money for:
- at least 1 year of treatment. Since we cannot just stop when the money runs out.
- a possible treatment abroad if ONC201 does not work but the tumor grows.
Lex has done everything he can to get through the surgery and has worked super hard during his rehabilitation, he is now finally home with us. I can't watch until we face the impossible choice between another surgery, radiation, or chemotherapy: all options aimed at inhibiting tumor growth with low success rates, high risks, and no cure. That's why this crowdfunding, where I ask you to contribute to the costs for the treatment Lex needs.
Could you please help give Lex the best chance at recovery, so that Sofie, Emma and I won’t lose our darling father and husband?