Friday, May 20, 2016

Max and Julie


I was scrolling down my Facebook newsfeed a little while ago and ran across a story originally posted at the “Humans of New York” Facebook page. The page is associated with the "Humans of New York" website, which features interviews with thousands of people on the streets of the Big Apple. HONY’s tagline is “New York City, one story at a time.”

I really like these posts. They’re always interesting and even touching and are accompanied by compelling photographs. But I can’t remember being as moved by other stories as I was by this one about Max narrated by his mother, Julie. You must read this.

The disease at the center of this story is Diffuse Intrinsic Pontine Glioma (DIPG), which are highly aggressive and difficult-to-treat brain tumors found at the base of the brain. They’re glial tumors, meaning they arise from the brain's glial tissue — tissue made up of cells that help support and protect the brain's neurons.

"Max had two mothers. We found a sperm donor and I gave birth to him through IVF. He was actually a twin. I decided to reduce the pregnancy because I was scared at the time. I didn't think I could handle twins. And that decision will haunt me for the rest of my life. Max was such a sweet child. I was a bit of a hardass on him. I wanted to be sure that I gave him boundaries because I never had them growing up. But I think it brought us closer together. Because he knew I’d always protect him. And he was so protective of me too. But in such a sweet way. He’d hold my face in his hands. God, he was so sweet. Just such a nice guy. So funny. He loved to laugh. His bedroom was close to ours and we used to hear him in there late at night, laughing by himself."

“One of Max’s eyes started crossing over when he turned six years old. But I wasn’t too worried. He’d been such a healthy kid. I thought maybe he was developing a bit of a lazy eye. But the doctor started getting really uncomfortable during our appointment. He scheduled an MRI for the next day, and he told me: ‘Let’s not be too worried. I’m going to sleep well tonight.’ It was such a weird thing to say. Right? I had been completely relaxed until he said that. We got the MRI early the next morning, and I went to work. The results came in a few hours later. They called me while I was walking down the street. I just collapsed on the sidewalk.”

"There was a tumor in his brain. The doctor told us that he knew what it was. He said it was called DIPG and that he hadn’t found anything that worked. He said it would eventually kill him. And I started screaming. And I asked how long. And he told us a year. He told us that ‘doing nothing’ was an acceptable choice. And he said, ‘This will be harder on you than it is on Max.’ And I remember looking at Max. And he was so beautiful. All he had was that crossed eye. Our life had been beautiful and now everything sucked. I didn’t know what to do. So we went to the Lego store. He was obsessed with Legos. That night he got so many Legos.”

“I think I have post traumatic stress. I have so many horrible flashbacks. Two weeks after Max was diagnosed, he asked me if I’d be his Mommy forever. I said, ‘Of course I will.’ And he asked: ‘Even when I’m ninety?’ And I told him ‘yes.’ What was I supposed to say? And there were all the times he talked to me about the future. We’d talk about college. I just couldn’t tell him. God, I was such a coward. I should have told him. I just couldn’t do it. Even toward the end. The day before he lost consciousness, I read his favorite book to him. It’s called Runaway Bunny. And the little bunny keeps threatening to run away. And the Mama bunny keeps saying: ‘Wherever you go, I will find you.’ Oh God, it was such a horrible way to die. He couldn’t speak or move or swallow or see. He basically starved to death. And the whole last week I’m whispering in his ear: ‘Let go, let go. Please Max, let go.’ My seven-year-old son. I’m telling him to let go. I mean, fuck. That’s not supposed to happen! And the whole time I never told him he was dying. I was such a coward. But he knew. He knew without me telling him. Because a couple weeks before he lost his speech, he asked me: ‘Mommy, do they speak English where I’m going?’”

“I used to be a really happy person. I really was. I was the person who would walk outside and say: ‘Isn’t everything beautiful? Isn’t life wonderful? Aren’t we so lucky?’ I don’t have that sense of joy anymore. I remember the Mother’s Day before Max was diagnosed. It was four years ago. We were in this same park. On the lawn over there. It was beautiful. All three of us were there. Irene and I were in love. And Max was lying on my feet and pretending to fly in the air. And he was laughing so hard and I remember feeling so happy and full of life. It was the last moment that I truly felt joy.”

Today is the last day of a fundraiser to aid Memorial Sloan Kettering Cancer Center in its fight against pediatric cancer. Max’s tumor is the same tumor that Dr. Souweidane is working on curing. All money raised during the telling of Max's and Julie’s story will be given to Dr. Souweidane and his colleagues to aid in the fight against DIPG. The gift will be given in Max’s honor. Even if it’s a small amount, please consider donating.

As of May 19, over $1 million has been raised in honor of Max to research and cure DIPG. This money represents the “single greatest leap forward” in Dr. Souweidane's personal crusade against DIPG. When Julie was interviewed a few days ago, she and the interviewer were sitting on a bench in Madison Square Park that had been dedicated to Max. The plaque listed all the things that Max loved, and one of those things was ‘millions.’ The interviewer asked Julie what that meant. ‘Max’s Uncle Charley gave him one hundred dollars,’ she replied. ‘And Max kept saying that one day he’d have a million.’ Thanks to each donor for helping to give Max his million.

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