Onika
Friday, April 10, 2009
By: Jason Heffler

We relay for our daughter Onika Claire Heffler

Onika Claire Heffler was born August 17, 2006, weighing in at 8 lb 10 oz! She was beautiful from the day she was born you could tell she was an angel. We can't really say she was a fussy baby, but she had her moments. However we could calm her down pretty quickly. One trick we used to use was rubbing her forehead. We used to joke then that she was like a little cat and went right to sleep, but we later found out it was probably headaches making her cry and it was soothing to her. Things pretty much continued on the way they were.

We took her to the doctor every week because we knew in our guts that something was wrong with her. It was on December 7 that we got really anxious after we called the public health nurse to come watch Onika feed again. The nurse came right away and said Onika fed perfectly, but afterwards she screamed loudly. She finally said there was something really wrong. When we weighed her, she had gained only 7 oz in 40 days.

The health nurse called our family doctor right away and set up an appointment with a pediatrician and gasternologist at the IWK. We saw the pediatrician on December 11, 2006, and she thought from examining Onika that she might have hydrocephalus, which is water on the brain, because her fontanelle was full and the size of her head in just a few weeks had grown off the charts. Onika was also vomiting and being fussy. The pediatrician scheduled an ultrasound for her on December 15, 2006. She told us not to worry if it was fluid on her brain, they would simply insert a shunt and she would be perfectly fine. That was our worse case scenario ... we thought ...

On December 14, we took Onika into the IWK emergency because she had a fever, she wasn't peeing enough and all she did was sleep. They said they needed to do a CAT scan right away, but the machine was broken, which turned out to be a good thing in a sense because they opted to do an MRI, which showed more.

Hours later, the doctor came in with a couple of nurses and a few other people to give us the heartbreaking news. He said, “Onika has a very large mass growing off of her brain. We have contacted neurosurgery and they are on their way down.”

Hearing those words, I cannot even describe how I felt at that moment. We called all our family. The neurosurgeon came and showed us the MRI because he said there was no way to explain to us that the tumour was taking up a third of Onika's brain and a small tumour was growing inside her brain as well. The doctor said if we did not bring her in, it would not have been long before she could have passed away. We spent hours on the phone that night, and Onika went for emergency surgery the next morning. We didn't even know if she would make it through the surgery, but it was her only chance to survive.

They said they had never seen a tumour so big in a baby. However, she made it through the surgery. That night that we got to see her in ICU, she looked awful, but she was alive! She was out of ICU in two days and back to smiling in a week. We spent Christmas there, and right before Christmas they gave us the pathology report telling us Onika's tumour was a grade 4, meaning cancerous and fast growing, also known as a glioblastoma. They said her chances of survival were not very good, and in the next couple weeks they would decide what was best for her. The plan ended up being that she would start chemo in January. More surgery was too risky.

In January, she began chemo once a month, with one drug a week. She had an MRI in March, and it showed that her tumour had grown 12 mm, which was a lot. But she didn't show any effects of it and she was a happy baby. We chose to continue with the next chemo that she hadn't gotten yet. She received that chemo in March and had an MRI in April, and it showed that there were no changes! We were so happy!

She would get two more doses of that chemo and get an MRI in June. On May 10, she went to the hospital for her chemo, and she was sick right away with it this time. Around May 23, she went to sleep, wouldn't really wake up and was retaining lots of fluid. They did her MRI early the next day and found what we knew in our guts but didn't want to admit in our hearts her tumour was still growing. Onika slept for 5 days and we did not think she would ever wake up, but one Monday night she blinked her eyes a couple times and woke up. By that weekend she was a whole new baby!

She gave us the best last few weeks with her, and it was hard having to watch her eating her bananas and smiling and laughing and playing, knowing that she was going to die soon. Then a few days before she passed away, she started to become swollen again. She was in pain, so she was on a lot of pain medication. The Friday before she passed away she was looking at us, opening her eyes and the doctors said with the amount of pain meds she was on, an adult would have been in a coma. Throughout her whole life she surprised the doctors she should not have been able to see, but she could; she shouldn't have been able to develop, but she did. She even cut her first tooth while we were there. She was amazing, and I hope her strength will live on in us, her parents.

Onika passed away very peacefully on June 23 in her bed with us by her side.