Diffuse intrinsic pontine glioma (DIPG) forces parents to make a decision they should never have to make: do they tell their child they are going to die?
It’s a personal decision with no correct answer.
Alyssa Speicher found herself faced with that decision after her six-year-old daughter, Nevaeh, was diagnosed with DIPG on June 9, 2017. Nevaeh underwent 30 rounds of radiation but started to show signs of progression that December.
“I didn’t tell my daughter that she had DIPG. I didn’t tell her that her diagnosis was terminal,” said Alyssa. “I didn’t want her to live every day thinking, ‘I’m going to die, so why even bother?’
“I didn’t want her to spend whatever time she had thinking that way. It was a very difficult decision to make.”
Nevaeh went on her Make-A-Wish trip to Disney that January, but she couldn’t walk or talk anymore. She had also lost her left eye due to pressure on her 7th cranial nerve.
At that point, the swelling in her brain made a second round of radiation too risky, and Alyssa chose to let Nevaeh enjoy whatever time she had left in the comfort of her own home.
On March 5, 2018, Nevaeh was rushed to the hospital with rapid breathing. Doctors told Alyssa there was nothing more they could do and that she could choose to stay in the hospital or return home.
“My wish was that she be at home,” said Alyssa. “The following day she stopped waking up and passed away around 2:30 in the afternoon on March 6.”
It was four days before Nevaeh’s seventh birthday.
Nevaeh “Navy” Medeiros was born March 10, 2011, to her parents, Nick and Alyssa.
“She was just a loving little girl,” said Alyssa. “When you would ask her what she wanted for her birthday or Christmas, she’d say, ‘I don’t want anything.’ She cared more about taking care of other people than herself.”
Navy loved Paw Patrol, Minecraft, and McDonald’s. In fact, she was a typical, healthy, six-year-old girl … until she wasn’t.
“She was perfectly healthy from birth, so it came as a huge shock when she was diagnosed,” said Alyssa. “We wondered if we did something wrong as parents. The doctors tell you it has nothing to do with you, and you did nothing to cause this, and nothing you could’ve done could have prevented this.
“As much as they say it’s a one in a million, I look at it as I was that one in a million, and my daughter was that one in a million.”
Her only biological child, Navy’s diagnosis and death have left Alyssa unsure of whether she will have any other children. She doesn’t want to take the risk that they, too, will be diagnosed with DIPG.
“I still have the, ‘What if I did that? What if I didn’t do that?'” she said. “I firmly believe I will always be dealing with that. I will always be playing that over in my head.
“‘If I did this, would it have made a difference? If I did that, would it have made a difference?’ But there’s no way for me to ever know that.”
A Brutal Year
Unfortunately, Navy isn’t the only loss Alyssa has suffered this past year. While Navy was still fighting, Alyssa lost her brother, David, in August in a freak car accident. Then her mother fell ill and passed away the following January.
“I got hit really hard last year, and people have said, ‘I don’t even know how you’re still standing,'” she said.
It has led Alyssa to wonder what she’s still doing alive and healthy while her daughter, brother, and mom are gone.
“Since my daughter has passed away, we did two fundraisers for her,” she said. “One was in her memory, and all the proceeds were donated to Make-A-Wish to give another child the wish they deserve.
“Then Nevaeh’s friend did a Buddy drive, and she collected and delivered them to all of the families in McMaster Hospital whose children were fighting cancer.”
Alyssa is also focused on keeping Navy’s memory alive, sharing her story to educate others about DIPG.
“It’s important to me that people know that DIPG is a form of cancer, it’s terminal, and that they aren’t alone when their child gets diagnosed,” said Alyssa.
“Not many people know about it, but I feel like it’s something they should know. Everybody should be aware of what it is and how many lives it’s taking.”
Time Standing Still
It’s been just over nine months since Navy passed away, but — to Alyssa — it feels like it happened yesterday.
“There’s a lot of tears and a lot of asking myself questions,” she said.
She has attended local support group meetings, which have helped a little, but finds the most peace by visiting psychics.
“I wasn’t a firm believer in psychics before,” said Alyssa. “When she passed away, I looked at it as: when your child goes to sleep, you can call and check up on them.
“When they’ve passed away, you can’t do that. You can’t call heaven and ask how they are.”
Even if a psychic could ease her pain just a little bit, Alyssa figured it was worth a try. She’s spoken to many within the last nine months, and they’ve known things many people wouldn’t or couldn’t know.
Still, it isn’t enough.
“It’s brought me a lot of comfort,” she said, “but the days are still very hard and very long.
“She always wanted to help with things and feel like she was doing something … always a very helpful child. She was an old soul.”