financial assistance

Becoming a Stem Cell Donor: How Jahni saved his brother’s life

Posted on November 27, 2019 by admin

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.

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

Losing My Leg to Cancer

Posted on December 20, 2018 by Kelly Zorzi

Emma Neagu

B.C. (Before Cancer), I was a competitive gymnast. I had also started dancing and had even participated in one dance
competition before everything changed.

While I was enjoying my new dance classes very much, I noticed severe pain, on and off, in my right knee. I didn’t understand why it hurt so much because I hadn’t fallen. I didn’t worry about it because as a gymnast, and a very active kid, I was used to getting aches and pains.

But then one day, I fell at home doing a very simple move I had been doing for years. I hit my knee against the floor and I was
in unbearable pain. An x-ray told us that nothing was broken. I was told to apply ice, take some Advil and avoid dance until the
swelling went down.

Three weeks later, my pediatrician viewed the results and thought they looked suspicious; perhaps a solid blood clot. He sent me to repeat the x-ray and referred me to The Hospital for Sick Children.

On March 14, 2016, we went to the 8th floor of the hospital, followed a long hallway and were in shock when we saw the words “Cancer Clinic.” That was the first moment it sunk in that something might actually be very wrong. The doctors told us they were 99% sure I had a tumour in my femur and sent me for an MRI and surgical biopsy. I was terrified; I had never had surgery before.

The tests confirmed that I had osteosarcoma, the same type of bone cancer as Terry Fox, and that it was not only in my femur, but it had also spread to my lungs.

We had a long meeting with the surgeon who outlined two options for my leg:

Endoprosthesis would mean that the tumour would be removed, a metal rod
inserted to replace my knee and femur and my leg would be saved. That option
came with high risk of other complications, additional surgeries later in life and very
limited mobility. In other words, no dancing.
A surgery called rotationplasty, where doctors remove the leg from the unhealthy knee up to the thigh. They take the healthy lower portion of the leg and rotate it 180 degrees and reattach it to the upper thigh so the ankle faces upward. Essentially, my rotated ankle would function as my knee and I would require a prosthetic leg, but I would have greater mobility than with the other surgical option.

At the age of 12, I was given two months to decide which life-altering surgery I would have. My mom and I had many disagreements. She wanted me to save my leg, while I wanted to do the surgery that would allow me to continue to do gymnastics and dance rather than just watch from the sidelines.

On June 23, 2016, I had rotationplasty and within a few months of the amputation, I was trying on my new prosthetic leg. It wasn’t easy learning to walk again, but the motivation to do something I love helped speed up the process.

The time spent in and out of the hospital was an intense time for my family. In addition to the fear that comes with a cancer diagnosis, I had a hard time coping with being a little kid in such adult circumstances. My parents had to deal with new financial burdens. And my little sister, Lizzy, felt abandoned and thought we didn’t love her anymore.

Get answers to questions kids frequently ask about cancer

During this time, POGO was there to help us in many ways. Our POGO Interlink Nurse came to our home and talked to Lizzy to help her understand that these hard times would end and everything would be okay. She went to my school and talked to my classmates to give them guidance on how to support me without overwhelming me during this very difficult time. And when my mom gave up her job to be by my side, the POGO Financial Assistance Program helped us out.

On December 30, 2016, I completed treatment for a battle I never imagined I’d fight. The following September, I started high school and signed up for several dance classes, including ballet, jazz and even tap! I have been regaining my strength to get back on stage.

I’m so grateful to POGO donors and I hope that you feel proud to support kids like me.

– Adapted from Emma Neagu’s speech at the 2017 POGO PJ Party

In December 2017, at Emma’s regularly scheduled scans, they found that the cancer had returned in both her lungs. She had two surgeries to remove the metastasis. Emma is an active advocate in support of research for kids who fight cancer.

Related resources

Read POGO’s Childhood Cancer Care Plan for a roadmap to support childhood cancer investigation and research.

Pediatric Oncology Social Workers and Kids’ Cancer Care

Posted on March 20, 2018 by admin

Social workers Jane Cassano (left) and Cindy van Halderen, McMaster Children’s Hospital

We sat down to chat with Jane Cassano, MSW, and Cindy van Halderen, MSW, about the role pediatric oncology social workers play in the care of children with cancer and their families. Jane is a past member of POGO’s Psychosocial Services Committee and Cindy is a past co-chair of that committee and former member of POGO’s Board of Directors. They work together at McMaster Children’s Hospital in Hamilton. Here’s what they shared.

Describe the role of a social worker and the specific practice of a pediatric oncology social worker. Social workers are skilled at assessing and helping individuals, couples and families who are faced with a variety of challenges. The social work role can be found in hospitals, mental health clinics, schools, child welfare and community service agencies, and private practices.

Pediatric oncology social workers are heavily involved in supporting children, and their families, facing both a cancer diagnosis and the demands of treatment. Ideally, we meet a family at diagnosis so that questions and concerns can be addressed from the outset. Some of the early interventions include assistance with employment issues and applying for benefits, and making referrals to community partners, like POGO for the POGO Financial Assistance Program. Throughout the cancer journey, we provide emotional support and counselling, and monitor how the child and family are coping. We also provide resources for any family member who may be struggling, especially siblings.

Many community partners are listed in POGO’s Childhood Cancer Resource Guide.

What difference do you think social workers make in the lives of kids with cancer and their families? Parents have identified that having a social worker has eased the burden of managing applications for government funding, employment benefits and community resources. There are many programs available in Ontario to support a child with cancer and their family, and they can be difficult to navigate. Social workers are skilled at liaising and advocating with community partners. Parents have said it is a relief to have someone who has knowledge about what is out there and can help them navigate it all.

In such a rapidly evolving field, how do pediatric oncology social workers stay current about the issues of childhood cancer?
Pediatric oncology social workers stay in close contact with community partners like POGO. Ongoing training and education through POGO keep us and our colleagues at other Ontario hospitals up to date with current practices and standards. Through POGO, we have a voice at the provincial level, working as part of a multidisciplinary team to ensure pertinent psychosocial issues are addressed and acted on.

They say, “teamwork makes the dream work.” How is that true for pediatric oncology social workers and POGO? Pediatric oncology social workers and POGO work hand in hand, especially when it comes to the POGO Financial Assistance Program. Families often experience financial distress when their child is diagnosed with cancer. Many parents need time off work and they lose income or there is a major gap before supports begin. Many families are travelling from a distance, which creates a financial strain. Some benefits of the POGO Financial Assistance Program are that it provides stays at Ronald McDonald House and pays for child care for siblings. This support is provided immediately, which is when the need can be the greatest. Families have told us this has made a world of difference.

Creating a Happy Home for my Child with Cancer

Posted on September 8, 2016 by Kelly Zorzi

In 2014, both my husband and I were working long hours at high pressure jobs. It seemed as though our daughter Selena was spending more time with her nanny and grandparents than with us, and she was having behavioural problems at daycare. We made the decision that Selena needed more “mom time,” so I took a leave of absence from my job in women’s nursing apparel and I started working part-time at a restaurant. It paid off: Selena’s behaviour changed 180 degrees in that first year. She was happy and well-adjusted, and I got the opportunity to really know my kid in a way I hadn’t before.

So when our healthy child who never had so much as a cold said, “Mummy, I have a tummy ache,” we didn’t just blow it off like we might have the year before. We immediately took her to a walk-in clinic. The doctor pressed down on her stomach and noticed her liver was swollen. Although he attributed it to an infection, he was still curious so he made a requisition for an ultrasound. And for that, I will forever be grateful.

Selena’s stomach ache went away and she didn’t have a single symptom after that. If not for that ultrasound, they would never have detected a mass or ordered the blood work and CT scan that determined it was cancer. Selena was diagnosed with the worst type of Wilm’s tumour; we were told to get ready for a bumpy road.

Her protocol was experimental and based on yet-unpublished research out of the United States.

Step 1: Removal of her kidney and tumour
Step 2: 13 rounds of radiation
Step 3: 12 cycles of aggressive chemotherapy

Selena’s treatment completely wiped out her bone marrow and she was in semi-isolation for nine months. It was challenging. She couldn’t go to daycare, birthday parties or even the shopping centre. We decided to make home the best possible environment we could and we celebrated everything, from a single poke to the end of a round of chemo. We had a party every weekend with cake and lots of family (screened for even the slightest cold symptom) and the days were joyous and filled with laughter.

This last year was challenging in other ways. I quit my part-time job and managed all of Selena’s medical care. I had already taken a serious pay cut to be home and now I had zero pay, no employment insurance or benefits, and our expenses were rising. My husband worked extra odd jobs so we could get by and our POGO Interlink Nurse* connected us to every resource we were eligible for, including POGO’s Financial Assistance Program.

And now Selena’s treatment is over and she is doing so well. She is excited to start school; I am thankful that I get to return to the same job after being away for two years; and my husband and I are determined to get back on track financially. It will be hard to return to “business as usual.” You get attached to the reality you are in. There is so much readjustment after cancer, but we are looking forward to this next stage in our lives.

– Natasha Koss

WATCH SELENA’S STORY: Creating a Happy Home When Your Child has Cancer
READ MORE STORIES LIKE THIS ONE in the 2016 Community Impact Report

*POGO Interlink Nurses play an important role between hospital visits. They provide excellent nursing support to the family and they work with schools to help them understand the needs of the young cancer patient. 12 cycles of aggressive chemotherapy

Government of Canada increases duration of Employment Insurance compassionate care benefit

Posted on January 20, 2016 by admin

Claimants can now collect up to 26 weeks of benefits, up from 6 weeks.

Excerpted from Government of Canada Press Release

January 4, 2016 – The Honourable MaryAnn Mihychuk, Minister of Employment, Workforce Development and Labour, today highlighted the coming into force of a previously announced increase in the duration of the Employment Insurance (EI) compassionate care benefit, which will provide additional financial security to Canadian workers and their families in times of need.

The Minister also said today that the Government will work towards providing more generous leave for caregivers in the future. The Government has committed to making the compassionate care benefit more flexible, easier to access and more inclusive, she said.

Compassionate care benefits provide temporary income support to eligible individuals who must be away from work to provide care for a gravely ill family member at risk of death.

Effective January 3, 2016, the enhanced benefit, announced in 2015, allows claimants to collect up to 26 weeks of benefits, up from the current 6 weeks. Further, the period during which benefits can be taken is expanded to 52 weeks (up from 26 weeks). Benefits can be shared between family members.

Eligibility for compassionate care benefits remains the same, including the requirement for a medical certificate signed by a doctor attesting to the family member’s condition.

Corresponding changes to the Canada Labour Code will come into force at the same time to ensure that the jobs of employees in federally regulated enterprises remain protected while they avail themselves of compassionate care benefits under the EI program.

Related Topics

Learn about the financial assistance POGO provides to families
Download POGO’s Money Matters book and brochure series on our Publications page
Visit Service Canada to get the most up to date information about Employment Insurance compassionate care benefits
Read the Government of Canada’s full news release on changes to the compassionate care benefit

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