One year after Katrina Nelson’s 11-month-old daughter Willow was diagnosed with brain cancer, she is in remission.
“I’m smiling back at all of the things because I never thought we would be here today,” Nelson, 24, said. “It’s a miracle. It really is a miracle, when they told us she was cancer free I didn’t believe it.”
In March of 2016 Nelson thought Willow either had the flu or was teething. But as the days went by Willow got worse instead of better.
“She went from being an 11-month-old baby to a four-month-old,” Nelson said. “She wouldn’t sit up, she wouldn’t crawl, she wasn’t standing, she had no energy, she wasn’t eating.”
The doctor at the walk-in clinic told her to go home and try Gravol. Nelson also took Willow to the optometrist because one of her eyes looked a little bit lazy, but they also said it was nothing. So she went home thinking everything was fine.
“She breast fed and she was feeding from me and she just kept puking up my milk,” Nelson said. “She couldn’t keep anything down.”
At that point Nelson also noticed a sore at the back of Willow’s throat. She was momentarily relieved, finally something to show the doctor and blame the sickness on.
Nelson rushed Willow to the emergency room where they saw the pediatrician. He ran blood work and took an x-ray of her stomach. Everything was normal.
The sore at the back of Willow’s throat was nothing but a canker sore.
And then he discovered a bulge in the soft spot on Willow’s head.
“I thought that was completely normal because I’d been looking for that too,” Nelson said. “But I thought that because she’s coming up on a year, they (soft spots) generally close from like a year to two years, so I never thought anything of it.”
Nelson and Willow stayed at the hospital overnight. The next morning the doctor did an ultrasound and found fluid build up in Willow’s brain.
“They told us we were being rushed to the Children’s Hospital and a helicopter was coming to pick us up,” Nelson remembers.
In Vancouver the doctors did an MRI and found multiple tumours in Willow’s brain. The 11-month-old needed emergency brain surgery.
“It was one of the scariest times of my life having to sign a consent being like your child might die in this surgery,” Nelson said.
During the eight hour surgery Willow flat-lined on the table, but the team was able to resuscitate her.
“It was very traumatic,” Nelson said. “This is your whole world. This is your child that you made and she did die, she died and she came back ready to fight for her life.”
That was the first of six surgeries that Willow would face in the coming months, another brain surgery to remove the rest of the tumour and four others to insert, and re-insert, the PICC line in her chest.
Nelson said that after the first surgery, Willow seemed to be back to normal and Nelson often couldn’t believe that her baby was battling cancer.
“You never would have thought so without her losing all of her hair,” she said. “She was always so happy and didn’t know any better, that was her life.”
While Nelson was in Vancouver, Campbell Riverites were rallying to support her.
At first Nelson said spending someone else’s money was hard for her. She was determined to send flowers and thank you cards to everyone who supported her. It was a friend that told her not to worry about that and just focus on Willow.
“That is definitely a big part of why my daughter is alive, because I got to spend all my full attention on her and her health and not having to worry about anything else,” Nelson said. “Everything back home, it got taken care of by all my friends and my family and the whole community.”
While Campbell Riverites were looking out for her back home, her best friend Krystal Hinkle, Willow’s dad and his mom were often by Nelson’s side supporting her.
“(Hinkle) dropped her entire life and came and moved with us for the first six months,” Nelson said. “We’ve realized that you can have a soul mate as a friend, not just as a partner.”
When the chemotherapy treatment was done and Willow had recovered from her stem cell transplant, the doctor took another MRI. It revealed two little spots, both inoperable.
The doctor couldn’t say for sure that the spots were cancer but Nelson didn’t want to leave anything to chance. She took Willow to Seattle where they did eight weeks of proton beam radiation, a treatment that is not available in Canada.
“I was a little concerned about doing it but the only reason that we are doing it is to keep everything that we have done of the last year steady, so it doesn’t come back,” Nelson said.
Though the American doctor said they probably wouldn’t see results for up to six months, three months later a scan of Willow’s brain came up clear. As of right now, she is in remission.
And now the family is trying to find a new normal. Nelson is back at work as well as studying to be a medical lab assistant and Willow is going to daycare.
“I didn’t even want to put her in daycare, I was super uncomfortable about it all, but I realized that like I have to pay the bills somehow, so I have to get back to work,” Nelson said. “As long as I’m confident they say that she’ll be confident.”
It is a big change for Willow, who has spent half of her life in a hospital, away from other children and their germs. When she did get to leave Nelson took her to a field to play by herself, or for walks far away from other people.
Willow’s toys were the medical tools that surrounded her. Nelson said that when someone was cleaning Willow’s line she could grab a swab and clean it with them.
“It was funny and it was cute and it was sad to realize this is just what she’s used to,” Nelson said.
At times it was hard for Nelson to see photos on social media of her friend’s kids happy and healthy and thinking “that’s what my kid should be doing.”
But now they are home and settling in to a new routine.
“It’s still really hard because all of the drugs that we did giver her there is a percentile change that cancer can come back but a different kind,” she said. “So it’s a little frustrating. But I just need to be happy and worry about being in the present right now and not worry so much about the future. She’s here right now, just be grateful.”