My name is Shymo, I am 19 years old and this is my story.
From that moment on I started with physiotherapy and went to the doctor for the first time. February 2017 the Red Cross hospital made an MRI-scan of which I got the result in March 2017. “There is something in your body that should not be there, but we don’t know what it is”, the doctor said. Almost immediately I was referred to the VUmc hospital and after the first meeting with the neurosurgeon it became clear that I would need surgery right away. The word ‘tumor’ was used here for the first time. “But that does not matter” we thought. The tumor would be removed, I would rehabilitate for two months and in September I would be ready for school again.
Unfortunately that was not the case. The tumor tissue was examined and in May 2017 we got the result. At that moment, the world stopped spinning. “Shymo you have a rare type of cancer containing the H3K27M gene. It is diffuse, fast-growing, malignant and very aggressive”. We got told that chemotherapy and radiation therapy would not be able to destroy the tumor, but it could stop the growth temporarily. The process started with three-and-a-half weeks of daily radiation therapy along with ten months of chemotherapy. During my treatments I went to school every day and in May 2018, despite this difficult period, I graduated from high school. However, a week before my high school exams my Doctor told me that the tumor was growing again. From this moment on we knew the fight would be long and challenging. But it is a fight that we will take on with heart and soul.
My doctors told me that they would move to another hospital, the Princes Maxima Center, and they gave me the option to move with them. That I did. In July 2018 I started with Immunotherapy in the Princes Maxima Center. The first results were promising and a part of the tumor even disappeared. There was light at the end of the tunnel and the whole family was filled with joy, until December 2018 when bad news arrived yet again. “Shymo, the tumor is growing again and the immunotherapy is not working well enough anymore”, they said. Since then I’ve been doing extra physiotherapy sessions to strengthen my body, because my body functions are worsening because of the tumor. Because the tumor continued to grow I have become paralyzed and the impact is getting worse as long as the growth continues. That is why, since August 2018, I am bound to my wheelchair.
From that moment on, anything that seemed so normal, such as walking, using the toilet or even just grabbing food or a drink, is not possible anymore. Everything became an obstacle and I became dependent on my family and friends. The situation makes me sad and angry, but at the same time it makes me proud that I am enjoying all the time that I have been given so far.
In February 2019 I was told the tumor is now also in my head. In the meantime, the tumor in my back underwent radiation treatment and my oncologist found a new study: a medicine which would buy us time to find the right treatment. For a few months I took the medicine, but it did not work. The MRI-scan in June 2019 showed us that the tumor continued to grow. The conversation with my oncologist was hard. “Shymo there is a chance that we might lose this battle”, was said for the first time. However, quitting is not an option for me. I will continue this fight until I am cured and will always keep fighting. Despite all difficulties I am as cheerful as always and am always looking at what I can do instead of what I cannot do.
Recently my oncologist made me aware of the development of a new medicine in the United States. The results are very promising. This medicine is specifically developed for the cancer mutation that I’m diagnosed with, as well as for the exact location where my tumors are located; the brain stem. This is the medicine that will cure me.
We are doing everything that is possible to acquire this medicine and multiple organizations are involved to provide me with the treatment. Currently it is not certain if the treatment requires me to travel to the US or if the medication will be brought to the Netherlands. The only thing that we are certain of is that my lifesaving medication is in the US, that it will cost a lot of money and that the insurance company does not cover the expenses.
Just the unconditional love and support from my friends and family is not enough. A lot of money is needed to get treated and cure me from my disease. This is why we founded the Help Mo Nu! (in English: Help Mo Now!) foundation. Often we get asked by family, friends, acquaintances and even strangers if we need help. And now you can help, by donating.
Every donation brings me one step closer to being cured and with your help a bright future awaits me.
Thank you for your support and lots of love,
Shymo