Our son, Mark, was diagnosed with one of the most aggressive forms of a rapidly growing pediatric brainstem glioma measuring 6.5 cm at the time of diagnosis. Doctors in Poland gave us dire prognosis which for us, parents, was unacceptable. Was there really nothing more that could be done?
The treatment offered at the Clinic in Monterey, Mexico, seems to be our last resort, and, since the time is not on our side, we would like to be able to start the therapy as soon as possible.
The main obstacle is the treatment cost, which far exceeds our budget. Therefore, we are asking you to join us on the mission to save Mark’s life.
In March 2019 Mark was diagnosed with strabismus, which, unbeknownst to us or the doctors, did not result from poorly fitted eyeglasses, but from the rapidly growing brain tumor. At about the same time in March, Mark developed speech deficits and was referred to MRI laboratory. The MRI scan revealed the dreadful truth.
The brain tumor measuring 6.5 x 4.2 x 4.7 cm had been growing asymptomatic for quite a while. It permeated the entire space surrounding the brain stem. The symptoms developed when the cancerous tissue started to compress the brain stem.
Mark celebrated his sixth birthday in the hospital. He was terrified. We tried to explain every medical procedure to him. When he learned about the necessity of CSF diversion, he said he knew how the excess CSF happened to get into his brain. He explained that it most definitely found its way in while he was swimming. The first night after the surgery was the most difficult time for us all. Mark was really scared of staying alone and the amount of emotions he had to deal with resulted in stress-induced epileptic seizure. He has hardly spoken ever since. He is still scared of strangers and does not speak to them at all. He associates nurses and doctors with this painful experience.
The elective chemotherapy could not be administered due to poor vascular access. 9 PVCs including 2 lower extremity cannulas had been inserted before, however Mark’s vessels turned out to be fragile and ruptured on cannulation.
It was not until Broviac CVL insertion that the chemotherapy could begin. Mark would receive the therapeutic solution 20 hours a day throughout the 5-day treatment session. He felt horrible. He would vomit constantly and lost a lot of weight. Radiation therapy followed chemotherapy. We had to move our life entirely to hospitals.
Polish doctors, although really helpful, were very clear about the prognosis. If Mark stayed in Poland he would have only a few, maybe a dozen weeks left to live. Thanks to the generous benefactors who helped tremendously we could go to the clinic in Zurich for a biopsy. At the same time we managed to send a sample of Mark’s blood to New York for molecular analysis. The results gave us complete understanding of the disease and its treatment possibilities.
The diagnostic test results confirmed the worst diagnosis possible, i.e. the presence of the most aggressive form of pediatric glioma, DIPG with H3K27M mutations involving alterations in TP53 cell-cycle. Thanks to parents of children suffering from similar diseases we learned about the possibility of treatment in one of the clinics in Monterey, Mexico. Marks’ medical record was sent to the clinic and the reply came confirming his qualification for the treatment.
The treatment involves direct injection of the therapeutic agent into the tumor mass by bypassing the selective filter of blood-brain barrier. The treatment is combined with immunotherapy for the better results.
This is the most effective and only treatment Mark can be offered at this very moment. The annual cost of the therapy is PLN 700.000.
This might be the last chance to save Mark’s life. Since the tumor is growing very rapidly we are willing to knock on every door in order to achieve our goal. Today we are knocking on the door of your heart, and we truly believe that with your help the miracle will happen.