OUR STORY
Photo: Less than a month before diagnosis. Everything was great!
But early November 2017, after a few mornings waking up tired, nauseous and without an appetite, we took Max, then 5, to have a quick scan MRI. On our way home, the doctor called and said to take him straight to the ER. He had a brain tumor. Surely, it must be benign, I (dad, here) just knew it. That wasn’t the first time I was overly optimistic.
Max had a GTR (gross total resection) followed by 33 rounds of proton ‘treatment,’ and a round of Gamma Knife. We moved on with our lives as if those two weeks in the hospital and 5 weeks in Seattle were merely a very bad dream. I was sure it wouldn’t come back. The odds were ‘good’ at 50%.
In March 2020, just as COVID was taking off, Max had a recurrence. It had metastasized to other parts of the brain and spine. For better or worse (I can explain later), the metastasis was missed in two scans over the previous year, and only the problematic tumor on his neck was operable, but not fully resected.
From there, we had to make the most difficult choice of our lives, to choose to go with or without CSI (Cranial Spinal Irradiation). When we said quality of life was the most important to us, one specialist told us he has to be alive to have any quality of life, and so against my best wishes and instincts to wait and try to find something else, we decided to go with CSI.
At the same time, we tried changing his diet and started giving Max THC in increasingly high doses.
Within a year, the tumors in his brain started to grow again, and the metastasized even more. To make matters worse, Max hadn’t grow in the previous 3 years as the endocrinologist hadn’t wanted to start HGH (human growth hormone) because of the concern that it would cause the tumors to grow. We finally lost our patience and demanded it, arguing he needed HGH for more than just growth. And she suggested that, “Well, if you think about it, we don’t ask people with normal growth hormone to remove it.”
So, we stopped the diet, stopped the THC, stopped the fish oils, and started HGH and Etoposide, an oral chemo. He lost his hair, but gained weight, gained height and gained energy. His memory, which had greatly deteriorated with THC, quickly improved without it.
Over two years, Max’s tumors continued to slowly grow, and his doctor suggested many times we should stop HGH. We refused. His quality of life was good.
Around this time, we started Max on Metformin, a diabetes drug, not because he had diabetes, but because we had heard it might help control tumor growth. There had been some studies. Our doctor would not approve it, so I got it through another source.
Then we were told by an outside radiologist that there were tumors in Max’s optic chiasm that could cause him to go blind. WHAT? No one on our team had mentioned this was a risk. A few months later we decided to do five ‘low-dose’ rounds of Gamma Knife on those tumors.
A month later, Max had an MRI to check on the results, and his doctor told us it didn’t work. Look into hospice, he said. After two days of devastation, I recalled that they had made a similar judgement after Max’s first go at Gamma Knife. The had said it had spawned another tumor. So I asked for a second opinion by the team in Seattle that did the Gamma Knife. The had responded that it was a blood vessel. This time, they said the tumors had not grown, and that they were sure about this because they are able to use “volumetric comparison,” which compares the size of the tumors in multiple scans no matter the angle or flair. Although relieved, we still had to wait to see if the Gamma Knife itself would affect Max’s vision.
In February, 2023, Max’s scan came back, very good. In fact, too good to be true. The doctor said his tumors had not grown. Well, one had grown 1mm, maybe. Were we doing something different, he asked?
Remember I asked you about Metformin, I asked? No, he said, No surprise, I said. You poo-pooed the idea, so I got it without you. And we started him on Turkey Tail mushroom capsules that our friend makes. She said her mom had terminal breast cancer, and is convinced these saved her.
Well, keep doing what you’re doing. When do you want to have the next scan? I said never. Linh (my wife) said in 4 months.
In June, the tumors had still not grown. Max was taking the same cocktail. The doctor said, “If you had asked me a year ago where Max would be now, I would not have said this would be the case.” I thought to myself as I bit my tongue- you told us he’d be dead.
When do you want the next scan. Never, I said. What good would it do? It never does any good unless we know there is an issue. Every time. He said he’d be fine with that. Linh agreed.
If you’re really keen to learn more about the first several months, I started a GoFundMe page for people to get updates and to contribute. Many people asked what they could do, and there was really nothing they could do if they weren’t local,, so donating was one thing that helped them and helped us. It starts at the end, when Max recurred in 2020. To start from the beginning, you’ll need to scroll down to the bottom and click Read More and then scroll to the bottom of that.