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MY CHILD SURVIVED CANCER, SO WHY AM I DISTRESSED?
At 10 years old, Tyler Doloroso was diagnosed with an aggressive cancer called acute myeloid leukemia. His only chance for survival was a stem cell transplant. With no full match on the horizon, his brother Jahni (a partial match) eventually became his donor. Read the full story: How Jahni Saved His Brother’s Life.
By: Melody Doloroso
It was only five months between Tyler’s diagnosis and his last cancer treatment, but every moment during that period was so intense and foreign to anything I’d ever experienced; it actually felt like years.
When we were in the hospital, my friends and family would comment on how admirable it was that I could stay calm and strong through it all. Looking back, I really don’t know how I managed. Two years later, my anxiety is still overwhelming and at times I find it hard to cope with the normal things. For example, if my son comes home tired from school, I panic and look for other symptoms like a temperature. The thought of him going on an overnight school trip will trigger my anxiety and “what ifs”. My mind thinks of worst-case scenarios and I get overwhelmed. The post-traumatic stress is very real.
What it takes to be a “strong mom” changes when your child is a cancer survivor.
Sometimes people ask why I’m stressed—after all, Tyler is in remission and doing exceptionally well. I can’t explain it except to say that when your child is diagnosed with cancer, your body and mind go into survival mode; you have no other choice. I did what I needed to do to get through it one day at a time. I wasn’t able to fully process everything that was happening at the time, so I guess this is what I’m doing now—processing it.
POGO-supported research explores the mental health of mothers and siblings of children with cancer.
Tyler has crossed many milestones which I’m grateful for, but there are days when I dwell on uncertainty. Vivid memories randomly pop up when I do normal things, like run errands or when I’m driving. Some good, some not so good. Sometimes memories make me cry. When I have these days, I can get sad, irritable or worried. It’s a unique thing to go through, to say the least, but talking through it with other cancer moms who can relate is very helpful.
Perhaps I’ll feel better when he hits the third-year remission mark, or fourth, or fifth—I don’t know. For now, if I’m feeling crappy, I won’t suppress it. I acknowledge that I’m still healing and let myself feel my way through my emotions one day at a time.
Becoming a Stem Cell Donor: How Jahni saved his brother’s life
Tyler was diagnosed with acute myeloid leukemia (AML) in 2017. AML is characterized by the replacement of normal blood cell production in the bone marrow with aggressively growing cancer cells. Upon any childhood cancer diagnosis at one of Ontario’s five hospitals with specialized pediatric cancer programs, each family is assigned a POGO Interlink Nurse to help them navigate the complexities of the healthcare system and access resources, including POGO’s financial assistance to families.
By: Melody Doloroso
In September 2017, my 10-year old son Tyler started “showing symptoms” as they say in the healthcare system. At first, he was lethargic; he didn’t want to go out for recess, which is odd because that is his favourite time of day! We were rookies then—childhood cancer was not part of our vocabulary—so I thought he was just being lazy. Then just before Halloween we went to Great Wolf Lodge. He sat shivering and his lips were pale. I looked up the symptoms and it seemed like he might be anemic, so I called the doctor to ask to get his blood work done.
On Friday, November 10, he had his blood drawn in the morning and then we all carried on like it was a regular day. At 9:30 at night our doctor called. She said, “Melody, I need you to take Tyler to SickKids emergency right now—don’t go to any other hospital. Get a pen and paper; I want you to write this down.” She had me write down words like hemoglobin, white blood cell count, blasts and a bunch of numbers. All of this was foreign to me at the time. Then she said, “Give that piece of paper to reception as soon as you get there, but you need to go right now.” She didn’t tell me what she suspected; she wanted me to be able to drive.
I am a single mom but my parents live with us. So while my mom stayed with my other son Jahni, my dad came with Tyler and me to the hospital. It didn’t take very long before we heard the word “cancer.” After a while, a different doctor came in to give us more information and she used kid-friendly language. She said, “Tyler, I looked at your cells myself under a microscope and I don’t see anything alarming. Next we have to find out what kind of leukemia you have so we can figure out how to treat you, but you are in the right place.” Then we were wheeled up to the eighth floor and we didn’t leave the hospital for over a month.
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When I looked up the survival rates for the different types of leukemia, I was praying it wasn’t AML. The diagnosis came back, it was AML and they wanted to test for a certain gene mutation which would affect his response rate to treatment. We kept our fingers crossed that he didn’t have the mutation, but he did. They told me that chemo alone wasn’t going to cure Tyler and that his best chance for survival was a bone marrow transplant. They tested all of us in the immediate family and none of us were a full match. Next step was to tap into Canadian Blood Services, but the problem is there are not a lot of donors with a similar ethnic makeup.
Jahni visited us every day in the hospital. Until Tyler’s diagnosis, we had never been apart. Every time one of my family members came to get Jahni, he would cry uncontrollably as he watched us through the glass elevators until he couldn’t see us anymore. Eventually the hospital let him stay overnight—they figured the boys came as a package.
Then, right before leaving on her Christmas holiday, Tyler’s doctor told us they were going to go with Jahni as the stem cell donor. She said, “He’s a half match and we are good with that.” And just like that, for the first time in two months, there was hope.
From beginning to end, it was only five months, which is a blip really, but it felt like a lifetime.
This story was featured in POGO’s 2019 Community Impact Report.
What is it like to be a stem cell donor to your little brother?
At the time, I didn’t know all the things that could go wrong for my brother, I just knew that this is what he needed. It feels good to save someone’s life. If I had to give advice to someone who is thinking about becoming a stem cell donor, I would say, “It doesn’t hurt, and it feels good to help someone.” – Jahni Doloroso
The Ups and Downs of Disclosing That You Are a Childhood Cancer Survivor
Jessica Wright is a brain tumour survivor. In 2018, she applied and was selected as one of four Survivor to Survivor (S2S) Network Facilitators. POGO’s S2S Network is a special series of interactive workshops where survivor facilitators present helpful information, lead discussions and share personal experiences about a variety of survivorship topics. During the course of their engagement, facilitators build skills and then use these skills to conduct interactive workshops throughout Ontario which provide helpful information and an opportunity for sharing with fellow survivors.
By Jessica Wright
By the time I was 10 years old, I was having lots of migraines and struggling at school.
My family brought me to the doctor several times, but I wasn’t diagnosed until my teacher—a childhood cancer survivor herself—convinced my parents to insist I get an MRI. I remember all of us were in shock when they told us I had a pilocytic astrocytoma tumour, which is essentially a slow growing brain tumour.
The tumour is smack in the middle of my brain so chemo would not have been effective, and surgery was not an option. I was treated with radiation for six weeks, but I still live with the tumour today; I liken it to a dead mouse behind a wall. I also live with several side effects. I struggle with balance; I move a bit slower than the average person and my strength is very poor. I have a strong sensitivity to smells and I still suffer from migraines. I am also blind in one eye. None of these things are significantly noticeable so I blend in with the rest of the world and look like a healthy person. That’s the thing with childhood cancer survivors; many of us live with disabilities long after we survived our illness. For some people, like me, these disabilities are invisible so we can be perceived as lazy, especially in a school or work environment.
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That is why I am so grateful to POGO for creating a program where survivors can learn from each other about how to deal with things like employment, school, advocacy and disclosure. I need special accommodations to compensate for my disabilities and I have learned firsthand that how and when you choose to disclose these things can contribute to your success at work.
There was the time I was hired to work at a store, and I chose not to disclose my disability. My job was to stock the shelves and set up for the store’s grand opening, after which, perhaps, I would be hired permanently once the store opened. It went well for the first couple of days until I got stuck in the aisle with cleaning products. I tried to tough it out, but I got light-headed and felt faint. I asked my supervisor if I could be moved to another area of the store and she was accommodating, but my co-workers didn’t know why; they just felt I was getting special treatment. I think if I had said something at the beginning, I would never have been put in that aisle to begin with and maybe things would have turned out differently.
I have another story where I disclosed my disabilities during the hiring process because part of my job was going to be accepting deliveries. I let them know that I cannot manage with very heavy lifting and about some of my other challenges because of my brain tumour. My supervisor was very understanding and even supportive. After a few weeks, when she saw me struggling at the end of a long day, she asked if I wanted to work shorter shifts. She tried to work around my limitations as best she could.
Being a POGO S2S facilitator has enabled me to share my experiences with other survivors and hopefully help them cope with their own struggles. It has also been very uplifting and empowering for me. Everyone understands what I am going through. No matter what I say or what I do, they don’t judge me, and they don’t complain. I have never been anywhere where I felt so accepted. It has truly been the best experience of my life.
This story was featured in POGO’s 2019 Community Impact Report.
Parent-Child Communication When a Child Has a Life-Threatening Illness
An interview with Eric Bouffet, MD, FRCPC and Ceilidh Eaton Russell, PhD(c), CCLS
A Swedish study published in 2004 looked at 429 parents who had lost a child to cancer and asked the questions: Did you talk to your child about the fact that they were going to die? If so, or if not, do you regret your decision? Although only 147 parents had that difficult conversation with their child, none of them regretted it, while 27% of parents who did not talk with their child about death regretted not doing so.
In 2018, POGO issued a seed grant to principal investigator Dr. Eric Bouffet and co-investigators Ceilidh Eaton Russell and Dr. Adam Rapoport to interview parents and children in order to learn how they talk together about the child’s illness, its impacts on their lives, their feelings and worries, including their feelings about dying if the child’s prognosis is not good.
POGO: What have you seen in your interactions with families who are dealing with a critically ill child?
Dr. Bouffet: What we see in our clinical practice is that while some parents are very open about talking to their child who has cancer, others don’t even want to use that word and they will tell the oncology team, “Don’t tell my child they have cancer.” At the same time, often the child knows and they will say to the child life specialist, or even the therapeutic clown, “I have cancer” or “I know I am going to die,” followed by “don’t tell my parents that I know.” Some children will even talk about when they will get their driver’s license or when they will get married. They are imagining a future they know they might never have, but also, they are trying to comfort their parents. Each party is trying to protect the other, so there is this mutual pretense.
Ms. Eaton Russell: Many parents who are able to talk openly with their child about their cancer diagnosis—even when the prognosis isn’t good and the child is aware they are going to die—often glow when they recount the conversations. They say that the time they spent together was meaningful and that they were able to offer some peace to their ill or dying child. At the other end of the spectrum, there are many families who cannot manage these tough conversations around end of life, and for some of them, when I see them months or even years after their child has died, the angst is palpable.
Related Story : Dying Without a Voice – Communication When a Child Can No Longer Speak
POGO: Your study interviews parents and children. How do you get children to open up about what is happening to them when they might not have the words?
Ms. Eaton Russell: We have this activity book with beautiful illustrations to help kids communicate. They can demonstrate how they feel about what is happening to them or they can tell the story as though it is happening to someone else so it does not feel as threatening. It is very informative for both us and for the children.
POGO: What does this funding mean for your clinical practice? What are you hoping to accomplish with this research?
Dr. Bouffet: It is about quality of life—today, but also for the future of this family and how they will feel when they reflect about the time they spent with their child at what is probably the most intense period of their lives.
Ms. Eaton Russell: I hope we can develop some strategies to help families who are struggling with this topic begin to talk openly with their critically ill child, regardless of the child’s prognosis. It would be great to develop some tools to train frontline staff to encourage families to have these difficult conversations. Potential future research could be piloting workshops for families or piloting a clinical role to work directly with the oncology team and the family to focus on supporting open communication between parents and their sick or dying child.
Dr. Bouffet: Research, particularly in a university or hospital setting, is typically labs, equipment and people who are making fabulous discoveries, but there are also very important needs for the psychosocial aspects of illness. Not all funding agencies are supportive of qualitative research, so this POGO seed grant is fantastic because even if it’s not going to “save lives,” it has the potential to make significant change in the quality of life of the families and patients we treat. I am very grateful to POGO for supporting this type of research; it can have a big impact on our practice.
POGO: What kind of impact has it had on you personally?
Ms. Eaton Russell: Childhood cancer treatment, especially when end of life is a reality, can be such an intimate time and an opportunity for meaningful connections. It is a real privilege to learn from families and to be able to share what I’ve learned to help other families make the most of the time they have together in a different way than they might have otherwise.
Dr. Bouffet: The results of this research can give healthcare providers more confidence when we speak to patients and families about their critically ill child, and so it must be shared. We often “do not have the guts” to tell the truth, but we have learned through our interviews that it is critical for children to be able to talk to someone and share their thoughts and fears. It is also critical for parents to be informed. Much of this knowledge is new and can change our practice.
Dr. Eric Bouffet is a professor of paediatrics at the University of Toronto, Garron Family Chair in Childhood Cancer Research and Head of the Neuro-oncology Section in the Division of Haematology/Oncology at SickKids in Toronto.
Ceilidh Eaton Russell is a researcher trained as a chid life specialist at SickKids and is Director of Research and Evaluation at the Dr. Jay Children’s Grief Centre.
Bruce Power to support Brain Tumour Foundation of Canada, Pediatric Oncology Group of Ontario through Ontario Hockey League partnership for 2019-2020 season
TIVERTON, ON – November 1, 2019 – Bruce Power will continue its sponsorship agreement with the Ontario Hockey League (OHL) for the 2019-20 season by highlighting its support of Brain Tumour Foundation of Canada and the Pediatric Oncology Group of Ontario (POGO).
Through its partnership, Bruce Power will sponsor games in 16 OHL communities during the regular season to raise awareness around Brain Tumour Foundation of Canada and POGO. Both organizations will have an opportunity – through splitting the 16 games – to set up information/awareness kiosks inside the arenas on their respective game nights while the teams will promote POGO, Brain Tumour Foundation of Canada and Bruce Power on its social media channels and through their in-game promotions.
“Since becoming a partner of the Ontario Hockey League in 2017, we’ve been able to work with the league and teams on charitable initiatives that help raise awareness around the important work being done by the Brain Tumour Foundation of Canada and POGO on behalf of cancer patients and their families across Ontario,” said James Scongack, Executive Vice-President, Corporate Affairs and Operational Services. “Supporting these two organizations is an extension of the work our employees are doing in providing the world with medical isotopes that are used every day in the diagnosis and treatment of cancer.”
OHL Commissioner David Branch says the league and its teams share Bruce Power’s commitment to making their communities better places to live through charitable programs.
“The Ontario Hockey League greatly appreciates the work being done by our partners at Bruce Power and their support of these two great organizations that help countless people in our communities,” Branch said. “Cancer impacts everyone and this charitable effort will raise a great deal of awareness league-wide.”
Brain Tumour Foundation of Canada didn’t hesitate to participate in the Bruce Power-sponsored games, having seen an increase in awareness around the organization and its programs with its presence at OHL games last season.
“For 37 years now, Brain Tumour Foundation of Canada has funded brain tumour research while providing the brain tumour community with emotional support, access to accurate information and a connection to others facing this challenging disease,” said Susan Marshall, Chief Executive Officer, Brain Tumour Foundation of Canada. “We’re grateful to Bruce Power, the Ontario Hockey League and its clubs for allowing us to tell our story to hockey fans throughout the province.”
Like Brain Tumour Foundation of Canada, POGO works in several OHL communities and is taking advantage of the opportunity to tell its story to major junior hockey fans.
Each year in Ontario, there are over 4,000 families with a child in cancer treatment or follow-up care. More than 86 per cent of children diagnosed with cancer will survive. Nearly 60 per cent of these survivors will experience complications either due to the disease itself, complex surgical procedures or the rigorous rounds of radiation and chemotherapy they were given during treatment. POGO champions childhood cancer care for now – for life.
“Creative collaboration allows us to work towards a collective goal, and POGO is proud to partner with Bruce Power and the OHL to raise awareness of Childhood Cancer across Ontario,” said Lynn Wilson, Chief Development Officer at POGO.
The Bruce Power-sponsored games begin this evening in Kingston and Kitchener and continue through February 5.
- Kingston Frontenacs – November 1, 2019 (Brain Tumour Foundation of Canada)
- Kitchener Rangers – November 1, 2019 (POGO)
- Mississauga Steelheads – November 17, 2019 (POGO)
- Sudbury Wolves – November 17, 2019 (POGO)
- Oshawa Generals- November 22, 2019 (POGO)
- Barrie Colts – November 23, 2019 (Brain Tumour Foundation of Canada)
- Peterborough Petes – November 23, 2019 (POGO)
- London Knights – December 28, 2019 (Brain Tumour Foundation of Canada)
- Sarnia Sting – January 3, 2020 (Brain Tumour Foundation of Canada)
- Hamilton Bulldogs – January 4, 2020 (POGO)
- Niagara IceDogs – January 9, 2020 (POGO)
- Ottawa 67’s – January 12, 2020 (POGO)
- Guelph Storm – January 17, 2020 (Brain Tumour Foundation of Canada)
- Windsor Spitfires – January 19, 2020 (Brain Tumour Foundation of Canada)
- North Bay Battalion – January 30, 2020 (Brain Tumour Foundation of Canada)
- Sault Ste. Marie Greyhounds – February 5, 2020 (Brain Tumour Foundation of Canada)
About Bruce Power
Formed in 2001, Bruce Power is an electricity company based in Bruce County, Ontario. We are powered by our people. Our 4,100 employees are the foundation of our accomplishments and are proud of the role they play in safely delivering clean, reliable, low-cost nuclear power to families and businesses across the province. Bruce Power is also a significant source of Cobalt-60, a radioisotope used for the sterilization of medical equipment around the world as well as a specialized form of cancer treatment called the Gamma Knife. Learn more at www.brucepower.com and follow us on Facebook, Twitter, LinkedIn, Instagram and YouTube.
For more information, contact:
John Peevers – Director, Corporate Communications – 519-361-6583 – john.peevers@brucepower.com
About the OHL
The Ontario Hockey League is a proud member of the Canadian Hockey League which is the world’s largest development hockey league with 60 teams in nine Canadian provinces and five American states. In addition to the OHL, the CHL is made up of the Quebec Major Junior Hockey League and the Western Hockey League. Last season, more than nine million fans attended CHL games in the regular season, playoffs and at the MasterCard Memorial Cup. The CHL supplies more players to the National Hockey League than any other league. Last season 527 graduates attended Canadian Universities on scholarships from CHL teams.
For more information, contact:
Josh Sweetland – Director, Communications – 416-299-8700 – jsweetland@chl.ca
About Brain Tumour Foundation of Canada
Brain Tumour Foundation of Canada is the only national charity offering information and support to patients affected by any kind of brain tumour – be it cancerous, non-malignant or metastases. The organization funds ground-breaking research across North America and, since 1982, has dedicated over $7.2 million to finding a cure and improving treatment for brain tumour survivors. Brain Tumour Foundation of Canada is funded solely through generous contributions from individuals, corporations, organizations, employee groups and special events. Learn more at Brain Tumour Foundation of Canada’s website at www.BrainTumour.ca.
For more information, contact:
Susan Marshall – Chief Executive Officer, Brain Tumour Foundation of Canada –smarshall@braintumour.ca – 1-800-265-5106 ext. 222
About the Pediatric Oncology Group of Ontario
In 1983, a group of passionate and visionary pediatric oncologists founded the Pediatric Oncology Group of Ontario (POGO). Today, inspired by the children and families whose lives we strive to improve, we champion childhood cancer care on behalf of the childhood cancer community. POGO is the official source of advice on childhood cancer to the Ministry of Health; a trusted source of information among colleagues, parents, survivors and the public; and the longstanding leader of a collaboration among the five academic pediatric oncology programs and other stakeholders, which has resulted in a highly integrated childhood cancer system. Learn more at www.pogo.ca and follow us on Facebook, Twitter, LinkedIn, Instagram and YouTube.
For more information, contact:
Jacqui DeBique – Communications Manager – 416-592-1232, ext. 266 – jdebique@pogo.ca