SHE DIED AND THE ENTIRE WORLD STOPPED

I had just spent my 8th night on a cot in the oncology ward at the Children’s Hospital of Philadelphia, where my 9-year old daughter, Annalise, had been admitted for palliative care. I had been up most of the night hoping to catch her awake, plus she had started to breathe loudly in the night and I was growing concerned. It was around 7am when I decided to grab a coffee from the Starbucks across the street. On my way out, I noticed a big sign at the entrance to the ER waiting area, “Do you know the symptoms of CORONAVIRUS?” I remember thinking, “We don’t want to be here if that’s going on.” Just then, some nurses enter from the ambulance entrance with crosses of black ash on their foreheads. It was Ash Wednesday. February 26, 2020. 

Curious, I checked my phone as I waited for the elevator and saw the global death toll for this coronavirus was about 2,800. 80,000 cases around the world. The CDC also announced the first US case of unknown origin, evidence of “community spread” in California. In my 20s, I read The Hot Zone by Richard Preston, a non-fiction novel inspired by real ebolavirus and marburgvirus outbreaks, which were also the inspiration for the movie Outbreak. Seeing that sign put me on high-alert. Cancer parents are always on high alert though. 

When I got back to the room I found my wife, Jen, lying in bed with Annalise, whose eyes were closed and her breathing sounding even louder to me now. I spoke with Jen about the prospect of taking Annalise home where she could receive care and we wouldn’t have to stay another night at CHOP. I wondered if this was what Annalise would want? She hated the hospital. We had just given her a dream bedroom makeover. She loved her home. That’s where she wanted to be. Inside. We didn’t know how long she could be like this. The doctors said, “Days, maybe 6 weeks.” And to be honest, I was still hopeful that she might survive this latest episode. 

Since August 7th, 2020, Annalise had been fighting a rare and aggressive form of brain cancer, Diffuse Midline Glioma (DMG) with Histone Mutant H3 k27m. If you think that sounds like some alien, brain-snatching parasite, you wouldn’t be that far off. At least it felt like that. And for 8 long months we were at war with this thing. I’ll never forget the day we told Annalise about her tumor. “Some cells are clumping together in the middle of your brain and the clump is getting bigger and that’s what’s making you so sick.” She asked, “How did it get there?” We told her the truth, “No one knows. Not even the doctors. But we know it’s not something you caught, like the flu, and it’s not your fault and nothing you did or didn’t do caused it.” “Are the doctors going to take it out?” she asked. “They can’t. It’s too dangerous, but we’re going to do everything we can to make this stupid tumor go away,” I said. Annalise responded, “But it’s a part of me.” She was right. It was. We were going to war with part of her. 

Annalise’s DMG was in the thalamus, which is dead center on the brain at the top of the brainstem. It’s a major relay center for sensory information for movement, regulating sleep states, consciousness and awareness. So you can’t just cut it out. Because this is behind the Blood Brain Barrier (BBB), it is extremely difficult to penetrate with Chemotherapy, and the use of radiation is only temporary, if it works at all. Once a DMG starts, it doesn't grow in a uniform way either, it spiderwebs through the healthy structures of the brain, hijacking the central nervous system and using the brain’s own structures to feed its growth. The tumor literally has “tentacles” that reach out, invading into surrounding tissue to create new tumor sites. Even if these tumors are able to be removed, the tentacles are so small, they will inevitably be left behind and spur continued growth. A recent study by Dr. Mark M. Souweidane at Weill Cornell Medical School suggests that brain tumors have the surprising ability to form their own synapses, enabling them to overtake the Central Nervous System’s neural signaling pathways, diverting resources and forming new blood vessels dedicated to feeding itself. These newly formed blood vessels are fragile and as the pressure inside of the brain increases due to the enlarging mass, these vessels can burst. 

8 days earlier, Tuesday February 18th, Annalise woke with one of her morning headaches. I laid in bed with her, waiting for the Tylenol to kick in while Jen took Sebastian to pre-school. The pain increased in waves, like a hurricane heading for shore, each wave bigger and more intense than the last. I had her squeeze my hand when it came on real strong. I tried to distract her with memories of holding hands as we jumped over waves in Avalon, NJ, and thoughts of leaping off my hands in the pool at the swim club. After 30 minutes it was clear—something was very wrong.

On the way to the ER, Annalise kept repeating, “My head hurts really bad,” and she started having involuntary movements. There was a lot of traffic as we neared the hospital. I remember making a crazy k-turn in the middle of South Street so I could bypass a slow moving light. It was a scene. I was laying on the horn like it was a siren, Jen was screaming, and poor Annalise was hanging on. We wished we had called an ambulance. 

For the next 7 hours, we watched Annalise endure bouts of intense pain and ataxia. It looked like she had a mild seizure and stroke. It was horrifying. She called out for us. She called out for her brother, who wasn’t there. Through all that pain and confusion, she was so sweet and polite to the nurses, who all commented on how sweet and polite she was as she endured this physical torment. In the midst of one of her worst episodes, I think Annalise suspected it might be one of the last times she’d be able to talk with us. In a flurry, she said: 

“Mom, I like you.” 

“Dad, you’re funny.”

“Sebastian, stay out of my room.” 

Shortly after this, her eyes closed, never opening again. 

The CT scan showed that despite the proton therapy, despite the promising experimental ONC201 chemotherapy, despite the THC, the CBD, the supplements and off-label internet cures, the tumor had grown since January – spreading from the thalamus to the cerebellum, and now in her front right ventricle, where the doctors could see that a bleed had begun. 

Annalise didn’t wake up for the next 48 hours. We thought she wouldn’t wake at all. Thankfully, late one night, she called out for her mom. We rushed to her bedside. She even said “Hi Dad.” However, she could barely move, nor open her eyes. It also appeared that she was struggling to swallow. Soon she was unconscious again. These “visits” would be few and far between over the next week. One time, I was blessed with her being awake enough to humor a knock-knock joke. 

I said, “Knock knock.” 

Her answer was faint and delayed, “Who’s there?” 

“Olive.” 

“Olive who?” She said.

Those were the last words I heard her say to me. When she could no longer speak she would squeeze my hand to let me know she was there. That time, as she was drifting off, we had a thumb war, as we often did before bedtime. She won.

I took this as a sign of hope. In fact, I had it in my head that the tumor was expanding in response to the experimental chemotherapy ONC201, a small-molecule DRD2 antagonist that can cross the Blood Brain Barrier (BBB) and has shown anti-tumor activity for some DMG patients with H3k27m mutations. I had read some anecdotal evidence that swelling was a sign that the tumor was about to collapse and shrink. I was so hopeful of this, that I advocated for Annalise to have an NG feeding tube put in, so she wouldn’t miss her weekly dose. She was born 6 weeks early and had to be fed through her nose for the first days of her life, and here she was with an NG tube in what would be her last days. Since the NG tube went in, Annalise’s breathing had changed. It started sounding like she was congested, phlegmy. What I didn’t realize was that the muscles in her neck were starting to lose function. She had already lost the ability to walk, see, and swallow. Now her ability to hold up her head, which was even more noticeable when I sat her up to give her a hug that morning. All that was left was her ability to breathe. I had no idea that’s what was happening, or at least I didn’t want to believe it. Shortly after lunchtime, on that Ash Wednesday, I noticed a tear running down her face. I wiped it with a tissue. Then another. And then suddenly, she stopped breathing. Quietly. Peacefully. 

I wiped a tear from your eye.
That was you waving goodbye.

I can’t imagine a worse way for someone to die, let alone my child. To slowly lose herself and all her ability to do things she loved – dancing in our kitchen, playing in the backyard, remembering jokes, seeing the pages in her favorite book, drawing pandas, watching Kids Baking Championship — basically everything she loved about just being a kid. What really broke my heart was when she told me that she was boring. She honestly felt that her friends, her brother and her cousins, didn’t play with her because she wasn’t fun anymore. Although she couldn’t do things physically, her mind was anything but boring. This disease is a thief that steals slowly, methodically, relentlessly – right before your very eyes. All of us, including our renowned doctors, are helpless to stop this crime. 

No one deserves this. And no parent deserves to watch it. We donated her precious brain tissue to the CBTTC (Children’s Brain Tumor Tissue Consortium). We have to believe some good can come from this. Perhaps her brain will be the one that researchers use to make a breakthrough. 

Her memorial would take place over two days. Our funeral director explained that typically the younger the person, the bigger the turnout, so we were anticipating a lot of people. I recall mentioning to him, half-jokingly, about asking everyone to “fist bump” instead of shake hands or hug because of the coronavirus. We needed those hugs, those connections, and the outpouring of love from family, friends and so many who knew her or had followed her story. She deserved a big turnout. We all deserved this moment to say goodbye and thank you. So we swapped out the “fist bump rule” with a giant pump action bottle of hand sanitizer at our feet, tucked behind some flowers. 

We made her funeral how we thought she’d want it. Lots of Pandas. A pink casket. We left out a bowl of stickers featuring a mix of many things she loved – everything from pandas to donuts – and encouraged guests to help us decorate her casket. It turned out amazing. She would’ve loved it. 
I think about all the funerals that’ll come from the COVID-19 pandemic. People unable to gather or touch. I can’t imagine adding on the pain of knowing your loved one died alone, quarantined from their families, no one in the room to wipe their tears or to hold their hand as they leave this world. At least we were there for Annalise at the end. I am thankful for that. I’m just as thankful that we got all those hugs and shared all those tears at her funeral, and none of us got sick. 

Annalise was laid to rest in historic Colestown Cemetery on Friday MARCH 6th. The first 3 cases of COVID-19 were confirmed in the state of Maryland that day. 2 deaths in Florida were confirmed and the US state of Hawaii confirmed their 1st case, a former passenger of the cruise ship Grand Princess. Total number of U.S. deaths, 17. Even before the stay-at-home order came through, we were social distancing. Since New Year’s Annalise was starting to have more symptoms – double vision, lack of balance, extreme fatigue, vomiting, inability to walk long distances – she was in a wheelchair if we did leave the house. More and more she just wanted to stay home. She probably would have loved the quarantine – removing the pressure to go places and try to act like everything was good when people asked “How are you feeling?”

Monday March 10th, we planned for my son to go back to preschool. I had read that parents who lose a child will often become more protective of their remaining children, and with the rumblings of the coronavirus, I made the call to keep him home for the week. We had been under attack for eight months with our stress levels through the roof, we just buried our little girl, and now this. I just couldn’t take the stress, having to worry and wonder if sending him to school would expose him. I don’t want to see him sick. I don’t want him to expose one of us either. I’m 44 and I have autoimmune disease. He’s already seen death up close and he’s only 5. He doesn’t need the thought of his Mom or Dad dying.  On the other hand, if I died, I’d get to be with Annalise. Which is tempting. That’s how much this hurts. For the record, I love my family too much to give up on this life, no matter how much I miss her. Sebastian needs me more now than ever. So, like all of you, I’m stuck in the house. Except, I’m stuck in her house with all of her things. I feel her absence everywhere – in every room, every part of the yard, every part of town. I’ve cried thinking about her brushing her teeth. Thank God for Sebastian, who keeps me smiling. However, when one kid is always missing, even the good times are bittersweet. Every minute is bittersweet. I see her in his smile. There are so many things I miss about her that I have an entire post dedicated to that. One thing that I really miss is her “girl” energy. It’s all boy energy in here now, which is fun and wild, but I miss the laid back, sweet, thoughtful, funny, cutsie and precocious way about her. The contrast that her absence has created is like night versus day, and it’s devastating. 

I feel guilty that Sebastian is seeing me so heartbroken. I’ve read that it’s healthy. Boys need to know that it’s okay to express your feelings and still be a strong man. My boy has seen me cry quite a bit–at the dinner table, pushing him on the swing, assembling our latest Lego masterpiece. Once, we had all sat down for a grilled cheeseburger dinner – one of Annalise’s faves. I couldn’t hold it in. Jen reached out and held my hand. Sebastian reached out and held my other hand. It’s moments like those that remind me that I’m still a lucky man, even if we were already dealt one of life’s worst hands. Sebastian is proof, the game goes on. However, living in this coronavirus quarantine, Sebastian is seeing me more paranoid and on edge about letting this virus in. We’re staying indoors too much, avoiding people, and feeling more cut off from family and friends – all at a time when we probably need those connections the most. I can’t imagine what this is doing to all of our kids. I hope this will make Generation-C better people. They’ll know death in a way we haven’t. They’ll know sacrifice. And in the end, I bet they’ll never take going outside for granted again. 

For me, this quarantined life has made it impossible to get a break from the pain. It’s constant. Eight months of hell has blended right into this surreal disaster movie. I just can’t believe this is where we are. Where we ALL are. It’s like Annalise passed away and our whole world came to an end – not just our world, the entire world. It’s enough to make you feel like you’re living in some kind of parable. If you’re wondering about where I stand on the spiritual implications of all this, that’s for another post. For now, I feel like we can’t go forward.

I’ve read that the loss of a child is among the most distressing losses possible. It does not heal with time. It’s managed, but never really goes away. Experts stress the importance of talking with other parents who’ve gone through similar nightmares. A week after the funeral we signed up for a group meeting with Compassionate Friends. We were hoping to meet other parents who had lost young children. This was cancelled due to COVID-19. Everything in-person is cancelled. Thus, we’ve started remote therapy. It’s now been 7 weeks since she died, and I’ve had two grief counseling sessions with a social worker who deals with parents who’ve lost children, all over FaceTime. It’s a start. The social worker is kind and compassionate, but she isn’t a parent. She hasn’t lost a child to cancer. She really doesn’t know how it feels. Still, I enjoy talking to her. It helps.

Nevertheless, until life gets “back to normal” whatever that is, I’m coping with writing and reading and running and playing with the one child I still have here in this world. As for Annalise, I talk to her daily. I look and listen for her in the natural world around me. And hey, at least going to the cemetery is safe.