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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:

  1. 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.
  2. 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. 

Posted in Misc | Tagged childhood cancer survivors, financial assistance, lower-limb amputations, osteosarcoma, POGO Interlink Nurse, prosthetic, rotationplasty

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.

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.

Posted in Misc | Tagged community partners, financial assistance, social worker

Creating a Happy Home for my Child with Cancer

Posted on September 8, 2016 by Kelly Zorzi

Selena & Natasha Koss res featureIn 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

Posted in Misc | Tagged financial assistance, POGO Interlink Nurses, wilms tumour

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
  • Visit Service Canada to get the most up to date information about Employment Insurance compassionate care benefits
Posted in In the News | Tagged compassionate care, employment insurance, financial assistance, money matters, pofap

Ontario Making Hospital Parking More Affordable

Posted on January 19, 2016 by admin

Ontario hospital parking discounts came into effect October 1, 2016!

On January 18, 2016 Ontario’s Ministry of Health and Long-Term Care issued the following press release:

As of October 1, 2016, hospitals that charge more than $10 a day for parking will be required to provide 5-, 10- and 30-day passes that are:

  • Discounted by 50 per cent off their daily rate
  • Transferable between patients and caregivers
  • Equipped with in-and-out privileges throughout a 24-hour period
  • Good for one year from the date of purchase.

Ontario consulted with patients, patient advocacy groups, hospitals and the Ontario Hospital Association to find a fair plan that reduces the financial burden of parking fees for patients and their visitors.

Between now and October 1, 2016, hospitals will work directly with their Patient and Family Advisory Councils to implement this new policy, ensuring that it is well promoted and easy to understand. Each hospital will provide details on its specific parking policy and discounts.

Approximately 900,000 patients and visitors – including 135,000 seniors – are expected to benefit from reduced parking fees each year.

Saving patients and their loved ones money on hospital parking is part of the government’s plan to build a better Ontario through its Patients First: Action Plan for Health Care, which is providing patients with faster access to the right care, better home and community care, the information they need to stay healthy and a health care system that’s sustainable for generations to come.

” Parking fees should never be a barrier for patients when they go to the hospital. With today’s announcement, we are providing relief from the high cost of parking at some hospitals in Ontario. By making parking more affordable for patients and their loved ones who visit the hospital often, we are helping to reduce the burden of parking fees and putting patients first.”
– Dr. Eric Hoskins, Minister of Health and Long-Term Care

” We are thrilled that our concerns around the high cost of hospital parking have been addressed in a meaningful way that will help defray the cost of hospital parking for families of children with cancer in Ontario. You heard our voices, included us in the consultation, and have come up with a plan that reflects that in a very positive way. Thank you.”
– Susan Kuczynski, Member of Ontario Parents Advocating for Children with Cancer

QUICK FACTS

  • The Ministry was pleased to have consulted with a number of hospitals and the Ontario Hospital Association in regards to parking fee changes in Fall 2015
  • The Ministry will require other hospitals that do not own their own lots to make best efforts to influence their partners, like municipalities and private operators to cap or cut parking fees for those who must visit the hospital frequently.
  • In Ontario 45 Hospitals currently offer free parking and 54 charge $10 or less per day. It is estimated that 36 hospitals charge more than $10 a day.
  • The government is directing hospitals not to raise their daily parking rates for the next three years starting today.

RELATED LINKS 

  • POGO Financial Assistance Program
  • “Rates Cut in Half for Frequent Hospital Visitors” Ontario Government Press Release, Oct. 3, 2016
  • Ontario Ministry of Health: Patients First: Action Plan for Health Care
Posted in In the News | Tagged financial assistance, money matters, pofap

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