cancer sucks!

Shari (Emmalee's Mom) and I went to Bible School together back in the day.

Cancer takes its toll but recovery continues
By Greg Vandermeulen
29 March 2011

Music is Emmalee's one escape from
the difficulties of cancer treatment.
RIDGEVILLE - Six months after their three-year-old daughter was diagnosed with Acute Lymphoblastic Leukemia, a Ridgeville family is doing everything they can to keep their hopes up and their thoughts positive.

Emmalee Chubaty's story was first told in the Nov. 4, 2010 edition of The Red River Valley Echo.

Her mother Shari Chubaty explained how the diagnosis came as a result of a fall after Emmalee was jumping on her bed. She told of the issues that started with the blood transfusion in Winnipeg, and the pain that followed. Emmalee began an aggressive chemo treatment, and the family struggled to cope as father Wayne remained at their Ridgeville home, and their young son stayed with friends.

Six months later, there is hope, but there is still a very rough road for this young family.

Shari said her daughter has come to the end of the intensive chemo. After blood counts get to a certain level she starts maintenance, which involves a two year period, of a blood test every three weeks, and a spinal tap and chemo treatment every 12.

"She will still have to take oral medication at home every day, including an antibiotic to prevent infection, low dose chemotherapy and low dose steroids, but we'll get to be home," she said.

Emmalee has been home several times but has spent the last six weeks in hospital. Her brother James is staying with relatives in Regina.

With the exception of one scary incident that saw Emmalee end up with falling counts, fever and infection, Shari said her daughter's treatment has gone well.

But cancer brings some scary realities, especially for a three-year-old. "She lost her hair one night, all within eight hours," Shari said. "That really scared her, and took a long time for her to adjust to."

As hard as it is for Shari and Wayne to watch their daughter fight the disease, Shari said it becomes tougher when they see how their formerly outgoing little girl is dealing with it.

"The worst of all of it, is the emotional damage for Emmalee," she said. "Being three, we've never been able to explain to her fully what was going on and why."

Even the best efforts of Cancer Care's life skills therapist hasn't helped.

In fact Shari said they have to literally force her child to take the necessary treatment. "Every time they had to access her port in her chest for chemo, we would have to pin her down as she kicked and screamed, cried and told me she was 'a good girl today'," she said. "Those are the days it broke my heart to see her go through it."

Shari said it's tough to see the girl who was once so outgoing, turned into someone who is scared of everything.

Emmalee has yet to walk again as well. Sessions with the physiotherapist have helped, and Shari said although her daughter cries when her boundaries are pushed, she very quickly wants to go back again.

"We've been told and we've seen what a long process it can be, and we know it may take years for her to be able to walk and run as normal again," she said.

But Emmalee has some great things to look forward to. Shari said the Rainbow Society has offered her a wish of going to Disney World, enjoying a princess makeover and meeting Cinderella. She'll also go to Sea World, likely in fall.

She's also been asked to appear in a Ronald McDonald House fashion show in May, and Shari is cautiously optimistic.

"We'll see how much of all this she'll be able to handle by then," she said.

Despite her fear of the chemo, Emmalee has become a star among the nurses. Shari said she'll tell them "nope, not today, get out" when they come for tests, but she willingly holds out her finger for blood tests, although she'll cry at the same time.

"I'm so relieved and completely overjoyed that the worst of this is hopefully over," Shari said, noting it is possible the cancer could return. "We're far from done we know, but maybe now we can get back to being some sort of family, and allow her to be some sort of normal three-year-old."

The impact on the family will never be entirely removed, and Shari said her perspective has changed dramatically.

"You definitely develop a new list of priorities with cancer," she said. "The other day, I was behind a mom with two kids in a checkout line, and she was getting extremely frustrated with the bugging and whining they were doing. I felt like saying 'hug them'. Give them whatever they want. I would give anything to be in your shoes."

Support has come from all corners for the family. The community of Emerson has helped out, but it has spread much wider than that.

Shari said her sister-in-law had sent an email to a friend in the U.S. about making Emmalee a hat for when she lost her hair.

"It 'went viral' as she called it, and pretty soon, we had boxes of notes for Emms, gifts, and hats of all shapes, types and designs, pouring in from all over the world," Shari said. "The last time I counted, there was 78 hats, four quilts and so many pictures and cards and gifts sent from families and other young children, I can't count."

Shari said daycares have gotten together to draw pictures and make cards, something that has lifted Emmalee's spirits.

"She absolutely loves to open the boxes and see each one," she said. "No matter what kind of day or week she had, coming home to those hats perked her up."

Shari said the family can't wait to get home and let Emmalee get back to being a kid and not a "kid with cancer".

No comments: