Annette Mamo
Bereaved Mom
Grief Companion
Child Cancer
Bryce was born on December 7, 1995, weighing 7 pounds exactly. He had fuzzy blondish red hair, and the biggest dark blue eyes I think that I have ever seenAs Bryce grew up, he could only be described as loving everything – gardening, landscaping, looking after the yard with his dad, boating, dirtbiking, camping, canoeing, fishing, rollerblading, and anything that involved tools. Bryce skated from the time he was two. He played house league, and then travel hockey as a Tecumseh Eagle. Bryce was also very good with other children too –the smaller neighbourhood children would often come knocking on our door to see if he would come out to spend time with them, and he never turned them down. He also loved spending time with our neighbours, pushing them to wash their cars, and clean up their garages – they are still having a hard time doing these tasks on their own.
Bryce also loved his little sister, Bailey. They were very close, being that they were only 2 years and 5 months apart. He was her ‘voice of reason, and conscience’ many days. With Bailey, he loved cracking jokes and rolling around giggling with laughter. Of all the things about her brother, I think that Bailey misses this the most. So do we. What we wouldn’t give to hear his gailing laughter and silliness in our house again. Or those puppy feet running down the hall!
Our world splintered into millions of pieces on Sunday, February 1st, 2009, when Bryce at 13, was sitting in church with us and he turned to look at me. His eye turned in toward the centre. Then it went back. I almost wasn’t sure that I had seen it happen. Then, later in the day, Bryce had a hockey game, and came off the ice to tell us that he could see two hockey nets, not just one, and that “ he had shot at the wrong one and missed.” We knew something was wrong, and on Monday, we called for an appointment with our family doctor. He had us in to see an eye specialist by that afternoon. On February 10th, Bryce had a CAT scan, which didn’t show anything. Luckily, the specialist was persistent, and he ordered an MRI. He told us that at 13, an eye turning in was not “normal” if he didn’t have it at birth. On Feb. 26th, 2009, Bryce went for an MRI and was diagnosed with a Diffuse Intrinsic Pontine Glioma, which is a tumour located completely inside the brainstem. Bryce’s pediatrician told us that treatment would involve going to London Children’s Hospital, and that he wanted us there that night. We were floored. I don’t remember much, but I remember looking at Bryce’s face, and his eyes filling with tears. He didn’t say much. None of us did, because I think we were in shock. Bryce said he wasn’t going to London without his sister… I can tell you that my grief began at that very moment. Every emotion was experienced, our grief began in that very moment. Our happy life, as we knew it, crashed and splintered into a million, very sharp pieces.
We went home and packed a bag, and of course family started pouring into our house as we were preparing to leave for London Children’s Hospital. I was crying, and Bryce just looked at me and said, “It’s just cancer, mom. It will be fine.” And that one moment defined how we were going to deal with this new reality – with courage.
We met with the Paediatric Neurosurgeon, who told us that there surgery was not possible because of the location and type of tumour that Bryce had. Then we met with oncology, who told us that there was no chemo to be offered, as it did not cross the blood/brain barrier. Finally, we met with the Radiation Oncologist, who told us that they could offer radiation. With radiation, Bryce had “more or less than a year” to live; without it he had one month. I remember looking at Denis and saying that a year was going to go by way too fast. And at that time, we decided that if we were asking Bryce to do this treatment, we would not focus on dying, but rather following his lead, and when the questions came up, we would address them. He was told that day about what was to likely happen, but it was then set aside, and Bryce led the way. We, as parents, were quietly living in fear and dread on the inside – already grieving that our life was never going to be the same again.
So, from March 10th to April 23rd, 2009, we stayed at Ronald McDonald House from Monday to Friday as Bryce underwent Radiation. We made a good decision – to keep our whole family together in London during treatment, because we knew that this year might be all that we had. I have to tell you that when treatment was over, I was scared to death. So what were we supposed to do now, go home to wait for him to die? We were so happy to be going home, and yet terrified, because we knew that at some point, Bryce would lose his battle – that the tumour would resume it’s growth. We were told that there were no further treatment options. Bryce deserved to go home and just be 13 – not go home to wait for the other shoe to fall.
It was at that point that we did another good thing – we were asked, and agreed, to meet with the Paediatric Palliative Care Nurse Practitioner, Lisa Pearlman, before going home to Windsor. I can say that I was in complete dread of meeting her– because she was going to tell us all the terrible things that we couldn’t and didn’t want to even imagine yet, including how and when Bryce would die. I wasn’t ready for it- didn’t want to hear it. The day that Denis and I met with her; I was physically sick. We walked in, and the first thing that she asked us was to tell her about Bryce, which threw me off – she didn’t want to know about his symptoms like every other person we had encountered – she wanted to know about him as a person, and as a child. She wanted to know what his interests were, and about our family. After being submersed in the Cancer World and on ‘a mission’ to treat him and cure him, this was somewhat shocking, and even refreshing. It gave us a jolt – to remember that he was still our lovable, busy, caring, beautiful Bryce.
Lisa then looked at us and asked if we knew what Palliative Care was all about. We said yes, it was about dying. She said, yes, that was part of it, but it was also about so much more – she looked at us and told us that Palliative Care was about choosing to LIVE, for as long as possible, and in the best manner possible with whatever time Bryce had. It was about making each day a choice to live, not about waiting to die. And at that moment we made a choice. We decided that we would do just that – we would go home and LIVE Bryce’s days with him, and make those days everything that they could be – and it became our new mission. Our hope changed. We knew there was no cure, but we also knew that our hope became about making whatever days we had left with our son be good ones. Those days would have to be so good that for him, and for us, and for Bailey, there could be no regrets. And I can’t imagine any other days being as bittersweet, or as difficult as they were, looking back.
We were also told to talk about everything that was important, and about what was coming, so that we could be sure that we had those important conversations before speech became an issue, as it typically did with DIPG. That’s not to say that we didn’t continue to research – to check out a trial offered in Toronto, or to search the world over for a cure. We tried, but Bryce didn’t meet the qualifications for the trial.
We went back home. The thing that became most obvious over the next few weeks was that Bryce just wanted to go back to school, to a regular routine, and to be a regular kid. He didn’t want to be in the spotlight, babied, coddled, or have all of the attention that others wanted to give him. He even went on his Grade 8 Grad trip – and not until months later, did he know that we were also in Cleveland that day – just in case something happened and he needed to be rushed home. Thankfully, he never needed to know.
It wasn’t until the end of June, 3 months later, that Bryce finally asked us about his future. Children do things in such an uncanny way. We were not at home where Bryce called a family meeting, or sitting around the table. He and I were at the gas station when he finally asked. We had some of our best talks in the car. He said, “Mom, what is going to happen now?” I asked what he meant, even though I already knew where he was going with it. “ Now that I’m done treatment? What if it comes back?” So, at that point I reminded him about what we had been told – that radiation could not be done in the same spot for a few years, that at that point they did not have any chemotherapies that were working for this kind of tumour, and that surgery was not an option either. With tears in his eyes, he responded with, “You mean they are just going to let me die?” My response was, “I hope not Bryce. We will have to see if something new comes along, but for whatever comes our way, we are going to just try to enjoy every single day.” Next, he said, “Mom, go pump the gas.”
We went home, and I broke down in the back yard on the pool deck. He came to find me. Bryce wanted us to tell Bailey. So we did. And on our next trip to London, Bryce himself had a conversation with his Oncologist and Psychologist. I will never forget the two of them, Bryce and Dr. Zelcer sitting on that bed, and the tears rolling down both of their faces as Dr. Zelcer confirmed what I had already told him. And after that appointment, Bryce came out with another typical response – as we were driving down Wellington Road, and he said, “Let’s go for ice cream.” (Ice cream has remained an important part of our lives, as bereaved parents. Bailey’s first job was in an ice cream shop!)
Once we were home, we contacted Hospice right away, even though Bryce was not palliative. We were trying to find a connection at home for Bryce and for our family that was local. We all started to see the Social Work team there. It was one of the good things that we did. Bryce met with Katie, the Social Worker every couple of weeks. She suggested that they work on a scrapbook together, one page every session about Bryce’s life. So we would get fancy papers, and pictures ready for the theme of the week, and during their sessions, they would talk. Alone. It was nice for Bryce to have someone to talk to who was not a family member, and to have someone to tell how he really felt about what was happening, without being afraid of hurting anyone at home. They worked on the scrapbook for almost 6 months. We later had it out at his funeral.
Over that summer and into the fall many wonderful things happened. Bryce got his Wish for a camper from Make a Wish, we camped and traveled, he spent time with his friends, and he did his best to be a regular kid. He continued to have double vision, so some activities were no longer possible, but he was determined and found ways to compensate. His balance generally improved, so he still rode his bike. As dirt biking was too fast, we, much to the dismay of his doctors, we got him a four-wheeler, which he was allowed to ride on flat fields with his friends. This was probably his most prized possession that summer. For the most part it was a good summer, when he felt good. He never really wanted to discuss his illness except on the days when he wasn’t feeling well. He even started high school. He attended two classes in the mornings at Belle River High School. He went to the gym with special permission in the afternoon, and we got him a personal trainer. This really helped to keep his strength and balance up too. He continued to hang around the arena, skated when he felt up to it, and even coached his old team with his dad. He always amazed us with how hard he fought to be a regular kid every single day. He wouldn’t accept any less from the rest of us either. We grieved for the things he could no longer do, or do well, but he was so resilient!
In October, Bryce started to feel dizzy again. Even though the tumour was stable on MRI, Bryce looked at us and told us that they were wrong; that he felt different. We went to Florida on a Wish Trip. Bryce didn’t want to come home. He said, “I don’t have any worries here.” And so for the following 5 Christmases, we didn’t stay at home; we went back to Florida because that was where Bryce wanted to be, and we wanted to be there too. We felt close to him there, and we were not ready to do our traditional Christmas events with family and friends yet.
As Bryce began to feel worse, it was then that we started to talk about dying. It would often be that Bryce chose to speak to me about it. He began asking questions: Would he be here for his birthday in December? Would he be here for Christmas? Would he be here for his cousin’s birthday next summer? My response would always be “ I hope so Bryce.” I tried to be as honest as possible, and yet let him know how much I loved him at the same time. No parent should have to have these conversations!
He continued to go to school right up until December 19th. And on December 20th he fell at home. We contacted London because over the weekend we saw a decline in Bryce’s speech, abilities, and mental capacity. An MRI was scheduled for Dec. 23rd and we were devastated to learn what we already knew and feared the most. The tumour had progressed. Neurologically, Bryce progressed quickly and his decline became most evident. Life at that point felt like it was spiraling out of control for all of us. Over the Christmas holidays, Bryce progressed from walking on his own, to a walker, to a wheelchair, to spending most of his time in bed as his ability to walk and move dwindled.
We decided at that point that our daughter, Bailey, would only go to school for half a day. She needed the normalcy of going to school, but we felt that she also needed some one-to-one time at home with Bryce. It was one of the best things that we did, and it allowed her to feel like she was part of his daily care. She would often crawl into bed with him and we would hear them talking away. This was a stressful time for her too, and she was full of questions about what was happening to him. We tried not to give her too much information at once, or to let her know more than she needed to hear at the time because we felt that it would frighten her, but we always felt that we needed to answer her questions clearly and honestly. We watched her grow up in the process of watching her brother’s decline and throughout his palliative care. It was almost as if she felt that she became the older sibling throughout the process. She knew as much as we did by the end because she even felt comfortable asking the nurses who came into our house what was happening. I look back, and now feel that this is honestly how she learned to cope with losing him too.
And always talking about dying would pop up at the oddest moments, and catch me off guard. I made a point of stopping whatever I was doing because I was afraid that he would not ask again, and I wanted him to have the answers. One day he asked if his head was going to just explode. It became very important then that we discuss what was going to happen medically. As Bryce became unable to walk, the questions changed to what happens after one dies and whether or not he would still be sick. In the midst of taking down the Christmas tree, Bryce asked, “ Will I be able to walk in heaven?” I took this as some kind of acceptance of his fate, and tried to follow his lead.
I have to tell you, he was one strong kid who floored me every single day. Not only were we on a mission to help Bryce, no matter where this journey took our family, but we were also dealing with the reality of losing a child. And you do what you have to do to help your child, no matter what – because that’s what he expected of us. There were many days when I would just want to crawl into bed and never get up again – we were already grieving and he was still here with us. But he would say, “ Mom, go take a shower, you look like crap.” Another day when I was upset after appointments, Bryce looked at me, and said, “Mom, you can cry today, but you can’t cry tomorrow.” I asked why not. He said, “ Because I just need you to be mom every day, like you always are.” And that was when I decided that no matter what happened, if my son was going to have to do this, that I would be present every step of the way. What choice was there? He needed us to be. And inside, I was grieving what had already changed, the conversations that we had to have, the life that I knew would be so heartbreakingly different when he was gone.
We decided that we needed to fill in the “My Wishes” booklet that was given to us by Lisa. – Bryce wanted to stay at home, he wanted his friends and family around him all the time; he wanted to be remembered as funny and a good friend. As we talked through his wishes, I was screaming on the inside for all of this to stop, for the world to just stop spinning, and for this not to be happening. I slept with him every single night. And as he slept, I tried to memorize everything about him… I was afraid that I would forget. But you don’t.
Bryce lived for another two months following his tumour recurrence.
During those two months, it became very important to all of us that he still needed to be able to do the things that wanted to each day. We did not spend one day waiting for him to die – he LIVED right up until his last two days when he asked to stay in bed. We became his advocates with everyone- to ensure that his wishes were met. He wanted his snowsuit on because it had snowed. We went for a walk, and then, he wanted us to lay him in the snow. So we did. He wanted to lie in bed with his hockey skates on, so he did. He wanted to hold his skateboard in bed, so he did. He wanted a remote control car, so we searched the earth and found it in Australia. He got it with a lot of help. He wanted to go to Walmart for an F150 dinky car. So we did. One of the biggest adventures was that Bryce wanted to go and watch his sister play hockey. It was her first hockey tournament. She started to play when he couldn’t anymore. The arena where she was playing did not “support” a viewing area for wheel chair individuals, so, with the help of Earth Angels, 6 OPP officers came out to lift Bryce and his wheelchair up a flight of 25 stairs to the viewing area. He watched his sister play, and at the end of the game, he said, “You forgot to tuck in one side of your jersey, Bailey”. Those OPP officers came back an hour later to lift him back down. Another day, Bobby Orr showed up at our house to visit!
It became very important to all of us that every single day had a plan. We would actually plan the day before, so that he knew what he could focus on the next day. Especially foods – you’ve gotta love those steroids. In those weeks, I swear, Bryce planned to eat every food that he ever loved, and also everything that he was never allowed to have growing up – Corn Pops, gummy worms, you name it. He had it all. I still have a hard time going to the grocery store. As a bereaved mom, I still live by the “plan of the day.” It helps me to cope – I set the intention every single day.
When Bryce passed away on February 22, 2010, I remember sitting down on the couch after they took him from our home for the last time. I didn’t know what to do next. Somehow, we got through the funeral – the support and love that we were given was incredible. But then it was over. I was lost, Denis was lost, and Bailey was lost. I had nothing left in me to give, and didn’t know how to function. I was so angry, hurt, and devastated that this was our life now. And there was Bailey, still only 11 at the time, who needed her parents to love her and to parent her too.
Denis called CMHA and we were introduced to a Bereavement Specialist, Colleen Campo. We saw her individually at first, and then were introduced to Group sessions, where we attended faithfully for 3 years. It was in Group that we learned that we were not alone, that there are other parents who have lost a child too, and where we found a place to share our deepest feelings. We learned strategies to grieve in a healthy way, and to continue to help and to support Bailey through her grief too. Bailey also attended the Griefworks program with CMHA.
Group gave us a place to share our heartache, our frustration, our anger, our pain with people who understood all of it. We felt validated and assured that what we were feeling was not unhealthy or abnormal. What we could say there wouldn’t hurt someone’s feelings, like it might with friends or family. And no one was trying to make us feel better or trying to fix it for us. They just listened and sat in it with us, which was what we needed. We learned strategies to cope with all of these feelings, and how to live with this pain. And how to continue to parent at the same time. It gave us a place to let it out – good, bad or ugly. Those people have become some of our closest friends, and very close to family. It is a group that we still belong to, where we still belong, in a world where we felt, and still feel at times, lost.
I can tell you, that I don’t know where I would be without this incredible support system after losing Bryce – I would not be healthy now, functioning, or have gone back to teaching other peoples’ children. Going to see a Bereavement Specialist and going to a Group for Bereaved Parents helped us to put our feelings somewhere – so that we could deal with them and still function in a healthy way. Group became our “nightlight,” in a world that felt so scary, dark and lonely in a room full of people!
I have gone on since to become a Volunteer Facilitator for Group with CMHA, and am also a Companion with Julien’s House. We have always said that we could not have lost Bryce and not done something good with it. We learned the difference between grief and mourning, and we continue to remember Bryce and to mourn his loss in healthy ways, even 11 years later.
I have learned that my relationship with Bryce did not end the day that he died; it just changed. I am and always will be Bryce’s mom; a mom to an incredible boy, who changed my life forever. In the meantime, I will LIVE as he showed us how to do– with the courage to find joy again, with strength to make good decisions, and with the peace of knowing that I will always be “one day further, yet one day closer” to seeing our beautiful son again, when the time is right.
