When Alyssa Mucha woke up on Oct. 8, 2018 to see two dozen bruises on her toddler’s legs, she could never have imagined how the day would change her life.
A trip to the hospital, blood draw, pediatrician visit, rushed to BC Children’s by ambulance, more blood drawn, then the news no parent wants to hear.
Three-year-old Ella Mucha has cancer.
“I don’t know how I wasn’t crying and a complete basketcase,” Mucha said. “I was in a fog.”
It was a whirlwind day from waking up in Chilliwack in the morning to an oncologist telling her and her husband Dustin that their little girl has Acute Lymphoblastic Leukemia (ALL).
The good news is that ALL has a 96 per cent curability rate, but that doesn’t mean it’s going to be easy. And the whole experience has made it clear how financially challenging serious illness can be for families.
Alyssa and Dustin both worked before this and both took time off in the first few weeks. Dustin has since gone back to work to pay the bills, while Alyssa applied for the only funding possible: employment insurance (EI) to care for a critically ill or injured person.
The problem is that through EI, those who qualify receive up to 55 per cent of earnings for a maximum of $562 a week for up to 35 weeks. It’s the 35 weeks that is problematic for Alyssa because little Ella has two years worth of chemo treatment to endure.
“I called the government up and the lady on the phone, I had her in tears trying to find out if there were other resources for me,” she said.
“There is nothing out there for parents to stay home with their kid with a terminal illness.”
Untreated, Ella would die. Instead she will undergo intense treatment and more than likely live.
• RELATED: Mother of young Chilliwack cancer victim publishes children’s book
• RELATED: ‘Hero’ kid fighting cancer helping with B.C. Children’s Hospital fundraiser
For the first two months, Alyssa and Ella were going in for chemo every three days. That tapered off to every seven days. Now seven months into treatment, Ella goes in every 10 days and soon that will be once a month.
More time out of hospital isn’t any easier because it means more time Alyssa has to act as the full-time nurse and caregiver at home. Ella can’t go to daycare because she is so immuno-compromised. She had hardly go outside because of concerns regarding germs.
“At the playground if there is one kid, there’s me with Lysol wipes disinfecting the place. It’s a horrible, horrible situation,” Alyssa said. “She wants to go out and play with kids. She doesn’t even know how to interact with kids.”
Their other child, six-year-old Kelton, has also been forced to deal with a difficult situation, that includes coming home from school and having a bath if a kid at school vomits for fear of contamination. And then there is dealing with a little sister with mood swings thanks to her having to take steroids.
One thing Alyssa realizes is that things could be a lot worse, so she knows the financial hardships her family faces must be devastating for some others.
“I can’t even imagine any single moms doing this,” she said. “My husband said ‘I can’t do this without you.'”
Caring for sick children forces families into tens of thousands of dollars in debt in some cases. On top of the inability to work, there is the cost of driving back-and-forth to Vancouver, parking, then there is medication, some of which isn’t covered.
Alyssa really believes something needs to change either to the EI system or through another government funding mechanism to help families care for seriously ill children.
“It’s just sad that there isn’t anything else for people to be off with their children.”
As for the Muchas, Alyssa’s EI runs out soon and things will get tougher. In the meantime, their friends have banded together to hold a pub night fundraiser and silent auction on July 19 at 7 p.m. at Duke’s Country Pub. While the tickets are sold out people can still attend the pub and participate in the silent auction.
@PeeJayAitchpaul.henderson@theprogress.comLike us on Facebook and follow us on Twitter.
