Amanda’s legacy is a rainbow for sick kids

This story won the Canadian Community Newspaper Association’s gold Moosomin World-Spectator Trophy for best feature writing in 2003. The story was originally published on Page 3 of the Coquitlam Now on Wednesday, Oct. 9, 2002.

The story of little Amanda Hillstrom from Port Moody has not only made many a skeptic believe in rainbow-coloured angels, it could also help children in pain throughout Canada and the United States.

Amanda was only two-and-a-half years old in 1998 when she was diagnosed with brain stem glioma – a tumor in the brain stem – while vacationing in Palm Springs with her mom, Beverly, and five-month-old brother, Jonathan.

Amanda’s symptoms were difficult to pinpoint, and the cancer went undetected.

“Amanda always let me French braid her hair. I was never good at it, but she’d let me fuddle my way through,” Beverly recalls. “But then, it just hurt too much for her. That, in itself, didn’t ring any alarm bells for me.”

While visiting her parents that February, Beverly noticed Amanda banging her head against the wall. It was when the young toddler screamed out, grabbed her head and vomited that Beverly took her daughter to the Eisenhower Medical Center emergency ward. Doctors performed an MRI scan three hours later, which confirmed Beverly’s worst fears: a mass was located in Amanda’s brain stem.

Transferred by ambulance to Loma Linda Pediatric Hospital and University Medical Center, Beverly tried to balance caring for her son and her extremely ill daughter. As nurses cared for her baby, Beverly stayed with Amanda while she received a CT scan.

“I met with the doctor the next day, and he told us there was a mass in her brain stem – it’s called brain stem glioma,” she says, struggling for composure. “It was so entrenched in her brain stem that it was inoperable. It was even too dangerous to get a biopsy.”

Brain stem glioma is extremely rare in young children – and Amanda’s case was one of the youngest reported at Loma Linda. Doctors told Beverly her daughter had a two per cent chance of survival.

“But I figured, with two per cent, somebody’s got to survive.”

A week later, Amanda began aggressive proton radiation treatments, which aren’t available in Canada. The treatments targeted the brain stem mass precisely, and Amanda was the youngest patient ever to undergo the cutting-edge treatment.

“With Amanda, if I explained what was going on, she dealt with it okay. So I told her that she had a ball in her head that shouldn’t be there, and the doctor would shine his flashlight on it to get rid of it.”

It was during the three months of treatments in California that Beverly began noticing how her daughter learned to cope with the pain. While playing in the games room with her mom, Amanda toddled over to Beverly and said, “Mommy, the ball in my head is green.”

Taken aback at the time, Beverly says she had no idea what Amanda meant. Tracking Amanda’s treatments and moods in a journal, Beverly found her daughter described the ball in her head as five different colours over several weeks. Curious, Beverly took crayons and showed Amanda the five colours she had used to describe the ball in her head: green, orange, yellow, purple and pink. The two-year-old told her mom that the shades were all wrong, helped pick out the correct colours and described how she felt with each of the shades.

Those colours became instrumental in Amanda’s well-being. Beverly figured out that the colours could be used as indicators for Amanda’s level of pain: Green meant she was in the worst pain. Orange meant she was still in pain, but not as bad. Yellow told doctors Amanda was in pain, but getting better. Purple meant she was comfortable with the pain, and pink was the best of all – pain-free.

“The colours to children are unique and very specific,” Beverly explains, adding that doctors and nurses enjoyed using Amanda’s self-developed colour chart to help diagnose her. “We would go to a treatment, and the doctors would always ask her, ‘What colour are you today?'”

Five weeks later, Amanda’s MRI showed the treatments had destroyed 85 per cent of the tumor –and she came back home to Port Moody in May. The treatments were supposed to continue working over the next three months, and Beverly says Amanda was able to shed the steroid-induced weight and regrow the small amount of hair she had lost.

But in August of 1998, Amanda and her brother Jonathan came down with the flu. “Jonathan got better; Amanda didn’t,” her mom says.

Beverly took Amanda to B.C. Children’s Hospital in Vancouver, and the doctor told her the tumor was back. After getting a second opinion from Amanda’s doctor in Loma Linda, Beverly resigned herself to palliative care at home – doing as much as she could to keep Amanda comfortable.

“Usually I could distract her from the pain, and that would stop her crying. But I remember this one day, it was so bad I couldn’t distract her. I began crying, and told her I didn’t know what to do. She stopped crying, grabbed my face in her hands and said, ‘I love you, baby.’ That’s what I used to say to her,” she says.

Beverly could help with the pain, but it didn’t help Amanda’s condition. Her paralysis grew, and her breath became laboured.

“On Oct. 28, she passed away at 4:30 a.m., and she was in my arms,” Beverly says quietly, wiping away tears. “Just before she passed away, I asked her if the angels had come, and she said ‘Yes.’ Then I asked her if she wanted to go play with the angels. She said ‘Yes.'”

Images of Amanda’s colours continually came to mind for Beverly, who wanted to write a book about the experience. That’s when she came up with the idea of Amanda’s Rainbow.

Children between the ages of two and 10 often have trouble explaining their pain to parents, doctors and nurses, which makes it difficult for medical professionals to conduct pain management. Beverly’s book explains Amanda’s own colour code of pain, and how parents can encourage their children to explain their chronic pain in the form of a colour.

It may sound far-fetched, but Beverly knew she had hit upon a much-needed program when she asked other children with chronic pain about colours.

“You should see it. When I asked them about their colours, the child’s face lights right up. ‘You know the secret?’

“I asked one girl what colour she had for really bad pain, and she responded right away, ‘Oh, it’s black.’ She said it so quickly, so nonchalantly, like it was obvious.”

Amanda’s Rainbow includes an explanation of the rainbow and a chart for the child to colour in. Beverly includes a lady-bug pin with the book, so children or parents can clip the pin onto the colour they’re feeling that day — letting physicians know how much pain they’re in.

She’s getting the word out about the book, and doctors at B.C. Children’s Hospital, Royal Columbian Hospital, Canuck Place, Ronald McDonald House and Victoria General are waiting for copies of Amanda’s Rainbow. She sent copies down to Loma Linda, where Amanda was in treatment, and the book is slowly making its way down to California and to hospitals across North America.

“There’s been lots of research done with kids and colours, and kids in pain. But the key they’re missing is that the colours are specific to each child,” she explains. “If you give them a colour, they’re supposed to remember it and it doesn’t have as much meaning. I asked one boy if he saw the colours or felt them. He told me they were just there.

“You’re asking your child to share their rainbow with you, and they’re excited to share it with you.”

Beverly is producing the books out of her own pocket, and her mother and three sisters form an assembly line each Sunday — putting together the books, charts and pins so others can create a rainbow. All proceeds go back into producing more books, which will help more children. Any money left over will be donated to pediatric wards of hospitals.

“It’s a terrible thing to lose a child. People who have lost a parent can understand what it’s like to a degree, but it’s still not the same,” she says. “But doing this has helped an awful lot. Amanda’s life was really short, but gosh, she touched a lot of lives.

“My dream is to have an Amanda’s Rainbow chart above every hospital bed for every child.”

Beverly Hillstrom is holding a book launch for Amanda’s Rainbow at the Coquitlam Chapters location at Pinetree Village on Friday, Oct. 11, 2002. Beverly and parents of other children in the book will be on hand at 7:30 p.m. to explain children’s colours and the benefits of charting “rainbows.” For more information about Amanda’s Rainbow, check out the initiative’s website.