wtorek, 7 maja 2019 o 15:15
On Valentine's Day 2019, after more than 7 mouths of searching for the reasons for the sudden deterioration
of vision in our 7-year-old son (squint alternately) and limping feet we heard from the doctors that our son has
a brainstem tumor and he is very sick.
The world has collapsed ..
At that time, we did not know that brain tumors are "better" and "worse". There are some of them in which the survival rate is 100% and they are normally healed, and also there are the one who comes to us .. the worst because of the survival rate of 6-9 months - grade IV glioma, DIPG brain stem tumor.
We could sit and cry while waiting for the worst, but we could also act ...
From the very beginning, we started this fight for our sons life on all fronts.
During 10 days, friends and acquaintances collected 250,000 PLN for us, so a month later we could fly to the newly opened Clinic dedicated to DIPG tumors in Zurich. There a biopsy was performed, which answers to the question what genotype is known - and most importantly - to match the treatment for a particular diagnosis.
Preliminary results provided by the attending doctor - Dr. Sabine Mueller from Zurich say that we are struggling with the genotype H3K27M typical for DIPG tumors. We look forward to the results of DNA and other research that will be taken in the next steps.
Dr. Sabine Mueller has been working on DIPG tumors for 20 years. He is the author of many clinical trials, including those currently open. We are very lucky that she agreed to be our leading physician.
She decided for that because, as a patient, Kuba was "clean" when he was taken care by Dr. Mueller.
We did not decide to give chemotherapy (temodal and cisplatin) and it was the best decision we could make. Later, we came to scientific publications that clearly say that chemotherapy for our type of tumor is a waste
of time. After arrangements with Dr. Mueller, we are currently undergoing radiotherapy in Warsaw. We are currently in the middle our radiation. After the end of radiotherapy (something about 3 weeks), we have
to perform an MRI (magnetic resonance imaging) in 3-4 weeks from its completion and send it to San Francisco via Dr. Mueller.
Initially, Dr. Mueller recommended us to two clinical trials. The first one, called MTX110, lasts 25 months and is run by the University of San Francisco. It involves the administration of Panobinostad liquid directly into the tumor (the so-called CED method - the convective increase of the drug supply) using the nanodiamond particles administered by special catheters directly to the tumor. This study is very promising, but also burdened with many restrictions. Therefore, dr Mueller recommended us to a second clinical trial in New York - a study using ONC201. We can join this research in many stages, even if for some reasons we will be excluded from our leading clinical trial (sudden tumor progression, etc.), thats why the second clinical trial is just like a lifeline for us.
For that moment we have the best hopes in a clinical trial in San Francisco. Participation in this study is,
of course, free, but also the costs of preparation for treatments, which consist of each time introducing tumor catheters and all perioperative care - it costs about 2 millions PLN (500 000$). It's the cost of the treatment itself. The cost of flights and accommodation and living there on site - of course, additional costs, as well as the costs of additional insurance and visas for our entire family. Same insurance for our 4-person family, it costs - 80,000 PLN. We were able to contact the "Dar Serca" Foundation in Chicago. We have received information that if clinical trials were conducted in Chicago, the Foundation would be able to guarantee us a flat and means for subsistence. However, if clinical trials are conducted in a different state, the Foundation may only offer small financial support.
We will be grateful for any form of support - whether in the context of discounts on airline tickets or directing us to some Foundation located closer to San Francisco, which perhaps could support us in a similar way as the "Gift of the Heart" Foundation.
If you have additional questions, feel free to put them here,