disease

I am Nicolas and this is my story:

nicolas_krankheitsverlauf

My story starts in July 2011, after the most excruciating and painful summer vacation of my life, I received the devastating diagnosis -blood cancer. They said that this type of cancer should be easily cured. 9 out of 10 patients are completely healed. Keeping this mind helped me to get through the first 9 months.
However, after the majority of my chemotherapy I had a severe side effect of the medication given. These side effects occur very seldomly, but if they happen, the chances of survival are very slim. I fell into a diabetic coma and lost two third of my pancreatitis. The pain was the most excruciating thing I ever experienced. But I survived. So instead of the nine months of treatment they had to me for thirteen. Because of the operations the course of chemotherapy was interrupted by 4 months, which is a big risk in itself.

Just 6 weeks after I was able to be at home, a blood test showed again that I had cancer. This rapid return of the illness was a big shock for me, my family and for the doctors. The diagnosis came 4 days before Christmas 2012. So we spent our first Christmas in hospital. After another few blocks of chemotherapy, I received my first bone marrow transplantation, in March 2013. The donor was my 3-year brother Toni.
Again side effects reappeared. The occurring graft-versus-host disease with the extent mutation in the skin is very rare and occurs only in 2% of all cases. So I had daily UV-A light therapy. At the time I could not stay in the sun and always had to wear dark sunglasses. Even at home all the windows were taped dark.
Then I had three-quarter of a year in peace. Despite my illness I made grade 8 and could pass on to grade 9. Finally back to school and back to normality.

In May 2014, I had partially facial paralysis. Caused again by cancer cells, which were found in the brain. Again blocks of chemotherapy followed with again the unwanted side effects such as Skin lesions, herpes infections, etc. Added to this, I received a whole-body radiation in preparation for the second transplantation. So weak I got my father’s bone marrow. And this time a really serious side effect happened. No square inch of my skin was still intact. I was treated like a burn victim. Only by high doses of painkillers and Aesthetics made my life liveable. Through all the drugs given, I had several times Seizures in the brain, lost consciousness and was in the ICU. After temporary Renal failure, open mouth mucous membranes, and the massively damaged skin – the healing process was slow but was a steady progress. By October 2014 I was restored and could finally go home.
After the autumn break, I was back to school. In my old class! And although I was ill, I managed to graduate into the 10th grade.

Unfortunately, just after three weeks, 26.11.2014, I was again diagnosed with leukaemia. After this news we all were just helpless and clueless what to do.

But there is a solution in sight. Currently I am treated with antibodies that run on a study. So far it looks very promising. The first cycle of 6 weeks has half passed – the results and the lack of side effects make me very optimistic.

According to the doctors a therapy with the modified T-cells should now be carried out, which include the featured existing antibodies. The outlook of this trial therapy looks very promising – over 90% of patients treated are healed. This method has not yet been approved in Germany and currently runs only on Study base in the USA. Participation in the eligible studies is possible, but unfortunately it will bring enormous costs to my family, that we can’t carry alone.

That is why I ask for your donations. It is to cover the cost for my treatment in the USA. The chances of recovery are very good for me and maybe in the coming years, also for many other people.
Please share my Information from this website with many other people and ask them to support me.

I am really dependent on any help and support- thank you for your help and time!

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