Every week, The Huffington Post Canada will be sharing the story of a patient at The Hospital for Sick Children (SickKids) and their family. By focusing on how a stay at the hospital affects not only the child with a diagnosis but their immediate family as well, we hope to put names and stories behind the brave faces that rely on SickKids every day. You can learn more about the families behind this series here.
The Diagnosis
Gabriel was six-and-a-half months old when his parents, Asaph and Nikki, took him to see a pediatrician to treat what seemed like the flu. Several hours, blood tests and a frantic ambulance ride later they arrived at SickKids where they were told Gabriel had infantile acute lymphoblastic leukemia, also known as infantile ALL.
He spent the next six months in hospital fighting this rare and deadly blood cancer. Gabriel was sent home the day after his first birthday only for the cancer to come back even worse. Another eight months of chemotherapy and radiation followed until he was finally saved by a bone marrow transplant from his older brother, Jonah, and returned home for good more than two years later.
This is the story of Gabriel’s family in their own words.
The Impact
Nikki: I don't remember a lot of dates but April 23, 2012 is etched in my mind, like a birthday or wedding anniversary. It was a surreal experience going down in an ambulance to SickKids with all the sounds going and him in his car seat. They didn't want to lose any time, so they gave him a blood transfusion on the way down. It was like something out of a movie. And then you go into action mode.
This is it. You were a regular person and now you're a person that has to deal with your worst nightmare.
It was late at night when we got there. I just remember the doctor was a super calm, mellow guy. He sat us down and just started to explain to us, “this is leukemia and this is what's going to happen in the next 24 hours.”
And they just got to work.
Asaph: It was shock coupled with trauma, panic, guilt. This is it. You were a regular person and now you're a person that has to deal with your worst nightmare. But you have to rise up to the situation that was thrown at you because you don't have a choice.
We thought we’d be a run of the mill nuclear family: two parents, three kids. And when you're faced with the distinct possibility or even probability that Gabriel will not live through this, it's the worst hit that you can get in the softest place.
Jonah: It made me feel very bad that Gabriel was sick and I really wanted to have some time to spend with my little brother and I really like him. I felt lonely. A lot.
The Staff
Nikki: I was pretty much grateful every day. I was grateful first of all for having that amazing hospital in Toronto, because I'd never even been to SickKids, for the amazing doctors and nurses, and just for letting the kids run up and down the corridors and not say, 'hey, be quiet.' A hospital is always a serious place but it's not like that there; it's a very happy place.
People should know that it's not scary. It's very comforting. They are doing so much more than just curing your child. They're making sure that when they're feeling good there are activities for them to do, people can make them laugh. They never forget that they are children and they need to act like children.
The Blue Jays would come to visit the kids or a hockey team. I remember the Olympic rowing team came. And they have the therapeutic clown, Gabriel loved him. He used to come into his room and have him in stitches. His name was A. LeBoo. He wears a tutu. A. LeBoo and his magic bubbles.
Jonah: I thought the therapeutic clown at SickKids was very funny and I think it entertained Gabriel. A lot.
The Recurrence
Nikki: It's pretty serious when you get a diagnosis of leukemia but then when your child relapses and they say, “your kid has a 15 per cent chance of survival”—he was just 99 days from finishing his treatment—it was like somebody pulling the rug from under you.
My husband, he couldn't work. He had to step away from his business. It was basically the two of us tag teaming. My other two kids were at home and we used to do 24-hour shifts at the hospital. Libby was only 3 when he was first diagnosed and Jonah was 5, so their whole world was completely impacted. Mommy and daddy running backwards and forwards from the hospital. But we were never together at the same time. I felt very much like a single parent. I realized after a year that my husband and I had never been in a supermarket together.
Jonah: I really missed Gabriel and I really wanted him to come home. I was very sad.
The Saviour
Asaph: The fact that Jonah was a bone marrow match provided us with an extraordinary amount of hope. There was a lot of symbolism because our oldest son is named after my dad, and he passed away 15 years to the day that bone marrow procedure was scheduled. The symbolism cannot be missed. Of course, it was very stressful to have two kids in the hospital at the same time and running between the rooms but at that point we were hardened and we could deal with that.
[Gabriel] missed out on a lot of his childhood so I think he's just enjoying doing the really simple things in life. He dodged a bullet. Or as his oncologist used to say, 'He dodged a nuclear weapon.
Jonah: I took a lot of pain and I really hoped that it would work. I felt proud of myself and I felt that I was a very special person and that it was one of the best things I’ve ever accomplished in my life.
The Future:
Nikki: He just turned four on October 1st. He’s just happy running around and being crazy and jumping on the bed and having fun. He missed out on a lot of his childhood so I think he's just enjoying doing the really simple things in life. He dodged a bullet. Or as his oncologist used to say, “He dodged a nuclear weapon.”
Asaph: Now things have been un-paused. They are very busy. With three kids, it's a crazy house as you can imagine. But we definitely have a higher degree of appreciation towards what we have. It's not going to be the same as it was before April 23, 2012, but now it's going to continue in a whole other direction.
Jonah: He doesn’t have to go to the hospital anymore, and I feel much better that he’s back home. And Gabriel is very excited as well. Since he got home, I taught him how to do arm farts and also play with Lego.