This is Ilia. Ilia has an Oligodendroglioma brain tumor, and it's restricting him from living a happy and normal life! We are struggling with the cost of medical bills (his 5 week hospitalization, radiation therapy, chemotherapy, etc.), living on a single income, rent, sperm banking and many other things and could really use your help. Please let me give some background...
Ilia is the strongest person I know, mentally and physically. Ilia has spent his entire life devoted to keeping a healthy lifestyle and bettering himself as a person. I've never met someone that cares so much about what goes into his body or takes health and exercise so seriously. He currently works as a personal trainer at a gym, and went to school for linguistics – he hopes to work as an English teacher in the near future.
I am from Canada, and Ilia from Russia, but we’re both expats in Hong Kong. 2020 was a hard year, for everyone. Ilia and I had some extra icing on our cake that really turned our worlds upside down. In June 2020 we were at a friend’s apartment on a remote island in Hong Kong. Ilia suddenly started having seizures (he never has had health issues in his life), and was taken by helicopter to a hospital on the main island. After the first seizure Ilia seemed almost coherent, but when the paramedics arrived the stress seemed to trigger another seizure, and another. Ilia was sedated and unconscious for what was then the scariest 2 days of my life. An MRI revealed a Gr II glioma (Oligodendroglioma) on his frontal lobe. Once Ilia was conscious again he was unable to form sentences.
The location of his tumor presses on the language and motor parts of his brain (in a sick twist for a linguist/personal trainer). He can could completely understand everything that was happening, but was unable to form the words he wanted in order to put together a sentence. When overwhelmed Ilia would continually have small seizures that caused his right side to shake, and he would become completely unable to speak. Ilia is 28 years old, and I can’t make clear how seriously he takes his health – it’s inspirational. Seeing him like this was absolutely devastating.
I am fortunate in that I have a cousin that is a neurosurgeon and he has helped me understand what is happening. Unfortunately with gliomas they will always come back, and his grade II tumor will progress into something worse which will be fatal. When this transformation occurs is very, very hard to say with current medicine – we don’t fully understand this type of tumor. It could be as soon as 5 years or as long as 20. Either way it isn't exactly the life he expected. I am extremely optimistic with his perseverance and determination to stay healthy he will be on the later end of progression.
One week later and Ilia had brain surgery to remove as much of the tumor as possible. The language symptoms didn’t improve right away, although the seizures – ahem –seized after this. He then had to undergo 3 weeks in a rehab facility doing speech and occupational therapy, which helped tremendously. Ilia is still however on 4 anticonvulsants twice a day. Now that I’m writing this in February, Ilia’s speech is at about 85%. He still has trouble at times and it can take a minute or so to come up with a word, but usually it’s fine. His right side is still a bit weak but believe me when I say this kid is resilient.
The surgeon told us less than 10% of the tumor is remaining, which is good but not great. He started radiation therapy at the start of December and went every day for 6 weeks, finishing at the start of January. Ilia has just started chemotherapy and will undergo 6 cycles of 6 weeks. I’m optimistic but also practical, and imagine it’s going to be very hard for him to work in the next few months. I want to provide the best I can but I don’t make much for 2 people living in one of the most expensive cities in the world.
The oncologist told Ilia and I that if we ever want to have kids, we have to freeze his sperm now. This is a huge decision, and it makes me sick to my stomach that money is going to decide this for us right now, when we've had no time to even talk about it. We eventually shelled out the big bucks for a sperm bank after exhausting every other option possible (looked at banks around the world and different alternatives, my insurance, his insurance, getting new insurance etc.) but the cost is absolutely breaking us right now and there's no way we can afford the retrieval and insemenation fees. Ilia has always wanted kids, and wants his own. It is so important for him to have this option, but we have had to take out a third loan to pay for it as I can’t give it to him with my current financial situation. We don’t know what the future will hold, but family is a big part of it and I want to be able to give Ilia the option. We have discussed adoption but Ilia is very adamant about this, and I can understand and respect his feelings. Ilia and I have never asked for money from friends or family because we’re both pretty proud people and feel extremely uncomfortable doing so, but it’s getting really, really hard to support us both on my salary, plus pay for treatment. We’re very lucky that Hong Kong has excellent public health care, however it isn’t free and everything adds up. It has been a real struggle and the debts are starting to pile up beyond our control, and this is really the last thing he should have to worry about. We could really use any support we can get in order to pay our bills. It’s not insanely expensive, but for us right now it has been such a huge added stress that is the last thing we should be worrying about. I feel like I’m going to blow a gasket with all this stress.
So this is a shot in the dark, but I know there are so many wonderful and generous souls out there that might be able to help. Anything you can contribute would make our lives a little bit better and make his life a little bit more normal. He went from being an independent free spirit at the peak of health to needing to see a platoon of doctors every week and undergo so many procedures. I just really really want to provide him with some normalcy. I am happy to provide receipts for everything as well, I don’t want anyone to feel like I have ulterior motives. I don’t have time for ulterior motives and I wouldn’t wish this nonsense on anyone.
Thank you in advance to anyone and everyone for your support and kindness. I can’t thank you enough – it is quite literally life changing for us.