By Jenny Neyman
The Make-A-Wish Foundation folks came to visit Ivy Howland the day she was diagnosed with medulloblastoma, a form of childhood brain cancer that usually attacks the central nervous system.
The Kenai 14-year-old was in Children’s Hospital in Seattle with family members, soldiering through a day of careening highs and lows: Relief at finally having a diagnosis of the mysterious illness that had been eroding her health and physical abilities for the past year, fear over the seriousness of the diagnosis, excitement at the prospect of being granted a wish to do absolutely anything she wanted, tinged with the realization that the opportunity came because she was very, very sick.
Ivy’s friends and family members were ready to help her with the Make-A-Wish choice, just like they’ve been ready to help with everything else during her illness.
“I thought for sure she’d ask for a trip,” said Danette Howland, Ivy’s mother. “And, of course, other family members had all these great ideas, like, ‘Oh, you could meet Johnny Depp.’”
And just like Ivy has handled everything else during her illness, she made her decision — with strength, optimism, appreciation of the support but not necessarily in need of it, and with a continued refusal to let her illness change her priorities or stop her from being who she is.
“She knew immediately what she wanted to do. She’s a singer-songwriter and she said she wanted to make a music video of one of her songs. I got such a big kick out of her wish. It’s such a career move,” Howland said. “The two ladies with the Make-A-Wish Foundation were so excited about her wish. They were like, ‘Oh my gosh, it’s always Disneyland. This is so fun.’”
Ivy wants to record her song, “At Ease,” written for Kenai Middle School teacher Ken Felchle when he was deployed to Iraq when Ivy was 13.
The wish comes with Ivy’s own caveat — she wants to wait to record the video until she’s well enough to play and sing in it. With how well she’s been doing lately, that wish is becoming closer and closer.
As recently as November, Ivy’s condition was at its worst in the whole yearlong ordeal. When the Howlands arrived at Children’s in October, her slow decline in physical abilities had left her unable to walk, talk, use her hands or hold her head up. Something as little as changing positions made her lose consciousness, and doctors weren’t sure what was going on. An MRI in November showed tumors and lesions in her brain. Only one of the tumors was operable, and doctors biopsied the mass after removing it in neurosurgery. That’s when the diagnosis was made.
“She basically tolerated neurosurgery like it was a root canal. She is a very, very tough girl,” Howland said.
Ivy toughed out six weeks of radiation and chemotherapy, as well, and began showing marked improvements. Her last radiation treatment was Christmas Eve, and the family anxiously awaited her next MRI at the end of January, thinking the results would be positive.
“We certainly hoped that’s what it would be. We didn’t even talk about it — we figured it would be what it would be. But we certainly knew that things were better because she was feeling so much better. Neurologically, a lot of the symptoms had already resolved,” Howland said.
The MRI showed no sign of the tumors.
“That was wonderful news — wonderful. I’m so happy to share Ivy’s progress right now, as she has really turned a corner and we’re all just giddy,” Howland said.
Measuring Ivy’s progress in terms of shrinking lesions and disappearing tumors has been thrilling, but marking the return of her physical abilities has been an even more exciting measurement of progress.
“The best part for us, of course, is seeing the improvement in Ivy. Today, she is out of her wheelchair, walking longer distances each day. She is receiving tutoring in math and French, two days a week at the amazing Hutch School. She is drawing beautiful pictures of horses, texting her friends and becoming more independent. Her decline happened slowly — over the course of a full year. So to see improvement like this, it’s more like lightning speed,” Howland said.
All that puts her music video closer to fruition. She’s been playing her guitar a little, and her dexterity is getting better and better.
“Slowly but surely. She’s not at the same level she was, but she’s getting use of her hands back. She’s been doing some drawing, and she was doing a paper-mâché project at home today, so she’s getting her art on,” Howland said Friday. “So we’re holding the video out for her. We want to wait until she finishes treatment to do it so she can play and sing in it. We’ve got a little ways to get to that yet, but she’s picked up a guitar and it’s coming back.”
Ivy started a six-month course of chemo in February to attack the cancer at a cellular level, Howland said. She goes into the hospital for a few days once a month for treatment, and if all goes well, she gets to recuperate the rest of the month in the house the family is renting. Along with her tutoring, she’s continuing physical therapy and has periodic testing to monitor her condition.
Renting a house in Seattle has been an adjustment for the family, especially since Howland said she’s lived in Kenai all her life, but it’s a vast improvement over being in the hospital.
“She really does not like being in the hospital, so she always does better when she’s out,” Howland said. “And a lot of people do come through Seattle, so we get a lot of visitors. It’s nice because we have actually had a lot of company.”
The chemo suppresses Ivy’s immune system and she did develop a bit of an infection after her treatment in February, which kept her in the hospital a little longer than planned. But overall she seems to be tolerating the treatment well, Howland said. The family is hoping for continued improvement through the end of treatment in July so it can switch Ivy’s follow-up care to Providence Alaska Medical Center in Anchorage and return home.
“It’s going to be wonderful,” Howland said. “It’s already been wonderful. She was so sick when we got out here. To have her back on her feet and taking a couple classes and she’s getting her life back, it’s really exciting.”
Howland said she wants the community to know the family appreciates their continued support.
“My heart is full to bursting. I am so grateful for the amazing strides in medicine, for a selfless, supportive family, for our loving, generous community. It seems this magical combination of science and prayer, medicine and intention, along with Ivy’s own determined spirit has carried us all to this healing, and there are no words to convey my thanks,” she said,
“We miss home. I just don’t think there can be another community like that anywhere. It’s just been amazing. It’s such a hard thing for all of us to go through, but all that support has really taken the edge off and carried us a long way. We feel it all the time, and it makes a difference. It really does make a difference in every way.”