Lily's Story

During the last week of August 2022, Lily started throwing up. I initially thought it was because Lily’s 6-year-old cousin fed her kinetic sand and slime while playing with a toy kitchen. But she was throwing up so much and become so lethargic, we needed to go to the ER.  They didn’t find any blockage due to the sand and slime, and her numbers improved after receiving IV fluids. She was prescribed some anti-nausea medicine and was discharged later that day.

Bur she still kept throwing up every few days. The pediatrician thought she caught a stomach bug and just needed a little longer to fully recover.

But things seemed to take a turn. Lily caught a cold and was not improving. The left side of her face began to droop. Eventually she started favoring her right side.

We went to the ER immediately and got a cat scan… and my world fell apart.

Lily had a mass the size of a large lemon on the right side of her brain. My immediate reaction was, “What do you mean?” “How is this possible?” Then reality set in quickly.

Based on the scan, it looked benign and doctors thought they’d just need to remove it with immediate surgery. I tried to absorb all the information being thrown at me as quickly as possible. I made two quick phone calls – one to my mother to have her brings things we would need and the second to my boss, saying I’d need an extended leave of absence.

I tried to do everything as fast as I could; I knew Lily was scared I wasn’t with her. Getting back to her side as fast as possible was my main concern. I composed myself, as much as I could and put on a happy face - Lily feeds off my energy. The next few days were going to very tough on her. I didn’t want to scare her any further.

The next day was long. Lily had an hour-long MRI in the morning and by noon, she was wheeled into a 7-hour surgery. When the neurologist came to talk to me after it was done, he said everything went well and they were able to take out the whole mass out. But there was a small question, if a very small amount that remained. Hearing this, I was finally able to breathe a sigh of relief. Unfortunately, this was short lived.

Lily was in a lot of pain and desperately wanted to go home. The morphine she was given made her feel like she lost her sight and hearing… even though she was able to see and hear me.  But even though she was in pain and really scared, she was still able to crack a small smile.

Eventually, that smile got bigger and bigger as she recovered.  No matter how big or small that smile was, it made you forget about everything. And at the time, it was what I needed.

Then, the day after Lily’s surgery, my father was admitted into the ICU. Over the next couple of days, while Lily was making improvements, my father was deteriorating. By the weekend, we had to say our goodbyes. That day was hard on both Lily and me.

Lily didn’t understand why I was leaving her. I was gone for a day, but to Lily, it felt like a lifetime. I couldn’t tell her when I was coming back and I wasn’t able to call her while I was away. When I finally got back to her, she knew something was wrong. From that point forward, she would get so upset if I wasn’t near her, even if I just stepped away to go to the restroom.

About a week later, we received the preliminary pathology report… Lily had a malignant tumor. It felt like the hits just kept coming.

A few weeks later, the final report determined that Lily has an aggressive rare type of tumor, supratentorial anaplastic ependymoma with RELA fusion, grade 3. The news was devastating, but it was confirmed the whole tumor was out, there was nothing left.

The next few weeks were a whirlwind. Lily had constant visits to different doctors while I obtained second opinions, determined who her medical team should be, and ascertained the best course of treatment. But I also wanted to give Lily some sort of normalcy and fun – I didn’t want it to feel like all we did was see doctors.  Since she couldn’t attend school and needed to avoid germs and crowded places, we explored the Botanical Garden, the Bronx and Central Park Zoos, and Legoland. Although these places were fun, she said she missed seeing her friends and going to school.

After a couple of weeks, Lily’s treatment plan and medical team were finally in place. She would need an additional surgery to insert a mediport and undergo six and a half weeks of daily proton radiation. As we entered treatment phase, Lily took everything in stride. I know she was scared and hated getting poked for IVs, but we managed to find some fun.

She would do “quick crafts,” creating silly-faced animals, pumpkins, and butterflies. She’d use them to decorate the mural wall that led to her treatment room, and every day, when she added her new creation, she would say hello to each one she made previously.

She was also not alone in enduring her radiation treatments. She brought along her two favorite stuffies - unicorns called Pinkie and Uni. Lily decided that Pinkie should have a mediport, as well. She even learned to access Pinkie’s mediport each week, so Pinkie could have treatment with her.

When Lily started losing her hair, she had the instinct to find her princess crowns to wear. The crowns made her feel confident enough to continue to conquer each day.

Lily was so amazing during the treatment phase. I anticipated her being moody and cranky with our constant changing treatment times. Waking up at 4:30 a.m. for 6 a.m. treatment, or not being able to eat or drink until almost noon – she was flexible… if I gave her a minute or two to complain.

Looking back, I’m truly amazed and humbled at how Lily faired with everything she had to endure. It could have easily broken one’s spirit, but she met each challenge with a smile.

Now Lily has adjusted back to our new normal, and her separation anxiety is slowly easing. She doesn’t need to wear her princess crowns to hide her hair loss anymore – she’s grown more confident with her appearance.  

Even though Lily’s journey is far from over, with constant monitoring over the next several years, she has proven that she can overcome anything that is thrown her way.  

The next part of her journey – her wish come true.