12-year-old St. Albert girl needs urgent bone marrow transplant
'It’s probably the worst phone call a parent can receive. Your heart just stops — it just stops beating'
Lying in a hospital bed two days a week is not something 12-year-old Alex Pasichnyk is thrilled about.
But since the end of June she's been going to the Stollery Children's Hospital every Tuesday and Friday for blood transfusions after she was diagnosed with a rare blood disease called severe aplastic anemia. It's where the body stops producing enough blood cells.
Alex used to enjoy everything from playing the piano to swimming. But last summer Alex's mom noticed her daughter had some unexplained bruising and seemed tired all the time.
'Your heart just stops'
"One day she was quite pale and had trouble breathing going up and down the stairs," said her mom, Lisa Pasichnyk, an emergency room nurse at the Stollery.
Realizing something was wrong, Lisa took her daughter to the family doctor on June 27. Lab work was done right away and then came a phone call later that same night.
"It's probably the worst phone call a parent can receive," Lisa said. "Your heart just stops — it just stops beating, and I felt this cold come over me. Worst phone call of my life. I never imagined anything like this."
Lisa has had to take time off work to be with her daughter and try to find a matching bone marrow donor.
'There must be a way to fix it'
Alex's dad Sheldon was out of town for work when he got a call about his daughter's diagnosis. It was a panicked phone call from Lisa telling him their daughter was sick, and that he needed to get home as soon as possible.
Once he found out it was aplastic anaemia, he was somewhat relieved, thinking there was a way to fix it and that his daughter would soon be back to normal.
"It seemed like if it was something that wasn't working ... there must be a way to fix it," he said. "In her case, she's not producing any of the blood products that she requires to sustain life."
For the past 11 weeks, they have been searching for a matching bone marrow donor between 17 and 35 years of age.
'She is one tough cookie'
They are looking at donors on a registry from 17 different countries and Alex is on a list of 800 people in Canada looking for a match.
The family has been told there is a greater chance of finding a match who is of similar Ukrainian and Polish ancestry, but their search isn't limited to that group.
In the meantime the family soldiers on. For Alex, that means Grade 6 has been put on hold — she's only gone to school three times this year because of her treatment.
"She is one tough cookie. It's been tough on all of us," said Sheldon, wiping away a tear while his daughter receives the second of her weekly blood transfusions.
"She's a trooper. Going through the therapy she's gone through, it just amazes me that such a little person can make it through life like this and fight through an illness and just have a smile on their face."
Several bone marrow donor drives are being organized to try and find Alex a match through Facebook.
Anyone else interested in seeing if they are a match can register and fill out a health questionnaire online at www.onematch.ca.