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
November 15, 2013 was the day then- six-year-old Kael received a bone marrow transplant at The Hospital for Sick Children (SickKids) from his donor — and younger brother — Eamon. Kael, now 8, has a rare immune-deficiency disorder called Stat 1 mutation. Children with this condition rarely live past age 12. Performing the transplant may potentially improve Kael's long-term health, but the impact of his ordeal has been felt by his whole family.
Kael’s Family
As a tight-knit rural family based more than an hour outside of Ottawa, Kael, along with Eamon (6), his sister Charlotte (10), younger brother Lochlan (3), as well as parents Emily and Andrew, faced a series of difficult challenges. Kael's condition meant he'd be placed in reverse isolation — essentially confined to a single room where his siblings weren't allowed to visit him and his parents could only do so while wearing full gowns, gloves, and protective gear. They expected this to last a few weeks, but it lasted six months. Complications in Kael's recovery stretched his hospital stay to one year with another two and a half months spent in Toronto.
Emily and Andrew would go to Toronto to be with Kael, staying at the Ronald McDonald House and entrusting the rest of the children to the care of their extended family. But with Andrew's duties frequently calling him back to the family farm, it often meant Emily spent weeks, even months at a time in Toronto, not going home, not seeing her other children.
Emily explains her family’s story in her own words:
The Plan
The plan was to try to keep life functioning as much as normal for the three kids at home. Andrew and I have very close families; we see most of them every day. So we explained what we were hoping to do, and asked them to let us know what they could do to help — if they could help at all.
Telling our families the bad news was a shock to them. I can see how it's affected them and how hard it has been on them, but they've all been very good at being strong for us. They admit to breaking down when we're not around, but they show up at my door prepared to handle whatever I need them to do. We always felt well supported.
The Effect On The Family
"Most days were ruled by fear; the fear of falling, the fear of pain. And that limited his progress. Every day was an emotional battle with no relief."
There are noticeable effects on every member of our family. The long term stay took a toll on Kael, and in the final few months we feared we would never get our witty, kind, fun-loving little man back. He struggled with depression and felt lost, angry, and frustrated a lot of the time. Physically, he was a tiny shell of himself, unable to do anything that he used to, including walking, playing, or sitting on the floor. Most days were ruled by fear; the fear of falling, the fear of pain. And that limited his progress. Every day was an emotional battle with no relief.
As parents, we had to juggle the demands of life and try to keep up with all of Kael’s health issues. Sleep was rare; good sleep was non-existent. We tried to split our time between home and Toronto, but even that routine was disrupted by complications and the demands of work. We hung onto what little light we had to keep our sanity and hold the family together.
It was crazy because when you got up in the morning, you never knew what kind of battle you were facing that day. Would today be the day you had to hold him down for another needle poke, or x-ray, or ultrasound? Would today be the day you had to decide if he should have a lung biopsy done? Would today be the day you are so exhausted you can't even see the bright side?
I always felt like I had the weight of the world on my shoulders and never had the proper tools to handle what was to come next. Not that I knew what was coming, but I just never felt prepared. Sometimes even if I had the answer, it didn't mean it was a feasible solution at the moment. As I often told people, I had to take the days one day at a time — and sometimes in small, manageable chunks. It has taken 2 1/2 years to see that days can now be taken whole and sometimes in groups!
The other kids never really understood how vital [the transplant] was for Kael. We never really told them that if he doesn't have this transplant he will die. It was never said. We just explained it as he needs new soldiers and Eamon's going to give him some of his soldiers; he's going to be in the hospital for a little bit and then he's going to come home. They didn't really understand that this was hard on Kael. In fact, they thought he must be having so much fun in Toronto with mom. It took a number of months, and some counselling, to get them to understand just how rough it was on Kael. They were jealous and sad and lost. They believed we were leaving them by choice, not because it was crucial. We have spent the last 11 months making up for lost time; a lot of hugs, kisses, and giggles.
SickKids Staff
Throughout the course of [Kael’s] treatment we consulted with many different departments at the hospital. Our core team, Immunology, was very thorough and cautious. They kept us informed as to their concerns and were patient with us as we coped with every piece of bad news.
Our interactions with the other departments were just as reassuring. SickKids is home to some amazing teams of doctors who continue to save lives and battle the odds every single day. Kael’s team of nurses on the unit we called home was fantastic. We nominated them for a SickKids Humanitarian Award and they won, which was pretty awesome! The nursing team would come and put on a brave face every day. I don't know how they did it. They are amazing, strong individuals!
[The team’s support] was probably the most valuable piece of his treatment that he got while he was there. Yes, the transplant was pretty spectacular, but to save him as a person, it was all those little things that we needed. They did something every day to help him get back to his old self.
The Best Moment
It was April 25; and yes, I remember the date specifically! Kael had been in reverse isolation for six months. We had not been allowed to touch him skin-to-skin or kiss him or hug him for six months. The doctors had come in and decided they were going to lift the reverse isolation rule. I could touch him.
I think it was 5:30 at night when they told us, and they wanted to see his face. So all our nursing team was there and all the doctors. We went to the glass door and it opened and I said, "Guess what I get to do?" and I stepped in, without washing and gowning up, and he just looked shocked. He didn't know what to do. And I went over and gave him a hug and a kiss and he just started to cry. Then he looked at the doctors and said “Thank you.” For a seven-year-old boy, I didn't know how excited he'd be to get a kiss from his mom. But he was.
Our Life Right Now
"All the medical requirements are our new normal, combined with everyday busy stuff. Normal problems feel like nothing now."
It's the excited, crazy, busy kind of a house full of normal little kids. They’re all constantly running and playing and laughing and giggling. They just get along so well now. They fight like any siblings would, but they really value their time together, they just enjoy being together and they have their common core interests that pull them together. We still have weekly appointments for blood work, medications twice a day, a few hours each day of running a formula through the NG tube and a few other health issues that we tend to, as well as running to hockey, or speed skating, or doing homework.
At least now we have progressed from having daily home care nursing visits and central IV lines to oral medications and no more extra people in the house. All the medical requirements are our new normal, combined with everyday busy stuff. Normal problems feel like nothing now. When you've done all of this, we're like, "Really?" Bring it on, because I could handle a ton of those right now.