Our son, Oliver, was born on May 22, 2008. He entered the world in dramatic fashion, arriving just minutes after we got to the hospital by ambulance. We were home again four hours later, and we quickly settled into being a family of four. Jack was thrilled with his little brother. I was thrilled with Ollie … because unlike Jack, he actually slept!
Ollie was a cutie pie and had people eating out of his hand. They would do anything to get his attention and he quickly learned how to work that to his advantage! He was also a real character and would delight in shocking us by saying very naughty words, and by flashing us. He loved to run around the house making silly noises, and he loved beating up his big brother. Ollie was also a real snuggler with me and his dad. If we were sitting around, it was like he couldn’t get close enough to us. If I was lying on the couch, he would lie on top of me, like I was a couch. And wherever we were, whatever we were doing, he would randomly say, “mom, can I have a hug?”.
In December of 2013, after a series of mysterious illnesses, infections and rashes and a 10 day stay at Sick Kids, we received the news that had Juvenile Myelomonocytic Leukemia (JMML). We also learned that the only cure for this extremely rare type of leukemia, was a bone marrow transplant.
Not long before he became ill, Ollie started wearing odd socks and so we nicknamed him “Odd Sock Ollie”. Once his illness became known, a lot of people wore odd socks in solidarity, posting hundreds of pictures in our Facebook group, to let us know we had support.
After an agonizing months long wait, the doctors told us that Jack, Ollie’s big brother, was a perfect bone marrow match. In April of 2014 Ollie received a bone marrow transplant. We came home from hospital in May, just before his 6th birthday. Aside from having to live in isolation, for fear of infection, and a few minor hospital stays, Ollie seemed to be doing really well; he was full of energy, his hair was growing back, and we were making plans for his return to school in October.
In late August, however, tests revealed that Ollie’s own bone marrow was taking over again, meaning that the transplant was failing and that at some point the JMML would be back in his body. It was decided that a second transplant, again with Jack as the donor, was necessary. A second transplant was scheduled for November of 2014. We managed though, to fit in his Wish trip first, flying to California and experiencing Disneyland, California Adventure Park, Legoland, Universal Studios and Santa Monica Pier. It was a wonderful family experience, where we made memories we will always treasure.
After the second transplant, again things seemed to be going well. We got out of the hospital in time to spend Christmas at home, and went about trying to live our lives. In late January, however, we were told that once again, Ollie’s bone marrow was winning.
Our doctors did not give up, giving him chemotherapy to buy time before a third transplant, which was planned for the fall of 2015. In the meantime we registered Ollie for every camp he could go to that summer, to take advantage of the time he had before being isolated. It was at this time that we were introduced to the Sick Kids Pediatric Advanced Care Team (PACT). The PAC Team was made up of doctors and nurses who were dedicated to supporting not just the child, and not just medically, but the whole family, to ensure the best quality of life possible for us during our long journey with a child with a life threatening condition. They helped us plan activities for us to do, like tickets to the CN Tower, free go-karting, etc. They hung out with us, getting to know each of us as people, not just as patient and family.
In late May Ollie was hospitalized for an infection and gastrointestinal issue. A fungal infection was also discovered on his spleen. These represented significant roadblocks to transplant, which by now had been moved up to June because the leukemia was advancing and the chemotherapy was too hard on his body to keep doing. Right up until June 12 we still had hope that we would make it to transplant, but it was not to be. On that day, the doctors told us that the leukemia was winning and couldn’t be stopped. With no idea how long we would have, we took Ollie home the next day, intending to make as much of the time left as we could.
The PAC Team rallied around us at this point, making sure we had as much information as we needed or wanted. They talked to us at length about what they could do to keep Ollie comfortable and that they would be able to ensure he didn’t have pain or distress. They made us feel so supported in our decision to keep Ollie at home and to minimize the amount of time he would have to spend at the hospital. They made themselves available for us to talk to whenever we needed.
We took Ollie home and tried to have as much fun as possible. We went to Great Wolf Lodge, arcades, played on the trampoline. He rode in some fancy sports cars, and of course, played lots of video games.
I was starting to feel terrified about us being at home with Ollie, now that his vitals were beginning to be unstable. Stu had been to visit Emily’s House, a children’s hospice near our house, and was convinced that this was the right place for us. On July 4, during a visit to the hospital for transfusions, I spent the day agonizing about whether we should be at home when the end came, whether we should stay at the hospital (which Ollie would have hated) or if we should go to Emily’s House. I cried on the shoulders of the nurses all that day, and had several long conversations by phone with Dr. Kevin, our primary PAC Team doctor. I was beaten down by the end of the day; I asked Kevin what he thought we should do. I just needed someone to tell me what to do, and he did. We went straight to Emily’s House from the hospital. Kevin met us there and we got settled in. Stuart and I were able to sleep in the room with Ollie, and we had 24 hour nursing care, as well as support from other staff in the house, who would do our laundry, make us food, sit with Ollie while we took breaks. Everyday one of the PAC Team would come to visit and check on us.
On July 8, after discussion with Kevin, we decided there was no point in continuing to go to Sick Kids for transfusions. By July 11, Ollie was barely awake, needing morphine and oxygen to be comfortable, but not really aware of much. On July 12, around dinnertime, he slipped away. Our spirited, funny, stubborn, smart, quirky and loving boy was gone and our lives were forever changed.
In the months since Ollie’s death, the PAC Team has been a tremendous source of support for our family. They offer grief support services, sending us cards on special milestones, holding events for bereaved families to come together, and providing resources. Members of the team attended the visitation, the party we had in Ollie’s honour, and fundraising events that have been held in his name.
It’s hard to put into words what the support of the PAC Team has meant to us. People don’t like to talk about caring for children who are dying, because it’s too hard to think about. But we need to. Otherwise, families like ours may not have what we were lucky enough to have from the PAC Team. By supporting the PAC Team, we are supporting families going through the worst time of their lives.