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POGO > Blog > POGO Interlink Nurse
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Tag: POGO Interlink Nurse


School Support for Children with Cancer from POGO Interlink Nurses

Posted on January 8, 2019 by admin

POGO Interlink Community Cancer Nurses are on the front lines providing school support and care for children with cancer and their families. They meet families at diagnosis, and are with them through treatment, and, should it happen, through recurrence and palliation as well. Here’s how these nurses are making a difference by  connecting them to much-needed community services.

Q. How are patients and their families referred to a POGO Interlink Nurse?

Families are referred to a POGO Interlink Nurse primarily when their child is diagnosed with cancer at the main treating hospital, through members of the healthcare team—ward or clinic nurses, pediatric oncologist or social workers. To raise awareness of our presence across the hospital, POGO Interlink Nurses make presentations to our colleagues to explain the role we play in caring for the child and their family. Families may also be referred to POGO Interlink through their POGO Satellite Clinic or by a physician when the child is returning to school after treatment. Because of the long-standing reputation of the program, families even hear about POGO Interlink Nurses through community agencies, like their Local Health Integration Network, or through their social circles by other parents of a child with cancer.

Q. What questions do parents typically ask when their child has cancer?

Whether in our hospital or home visits, many of the questions parents ask when their child has cancer are related to chemotherapy, finances and school. On the practical side, we review the educational information they received at discharge, like medications and treatment protocols. But, on the emotional side, parents have many questions about why their child got cancer. “Was it something I did?” “Was it exposure to cleaning chemicals?” “Was their cancer inherited?” Parents are also seeking answers to help them plan long term. “How long will treatment last?” “How soon will my child go into remission after a bone marrow transplant?” “How many medical appointments should I plan for?” Answers to these questions help with family decisions about when and which parent can return to work.

Q. How do POGO Interlink Nurses work in the community to support children with cancer and families?

Each family has unique needs but when a family receives the news of a new diagnosis, it is overwhelming. How they will manage financially is usually top of mind. POGO Interlink Nurses identify and help prioritize access to available resources and services. Financial assistance is usually the initial topic of discussion followed in time by other supports and services.

We work with agencies like the Local Health Integration Networks to acquire equipment and services to set children up at home when their care is complex. We also work with coaches and instructors in such extracurricular activities as Brownies and hockey. In one instance, a family asked us to speak with a group of neighbours to give the other parents and their children a better understanding of what they were going through.

And of course, we consider the grandparents who are not only concerned for their grandchild but also for their child, and who themselves may have their own health concerns.

Q. How do POGO Interlink Nurses work with the school system to support the education of a child with cancer?

POGO Interlink Nurses are in the unique position to work with the schools to support children with cancer, their siblings and parents, teachers, principals and classmates. We often advocate for families when there is a delay in the start of home instruction. POGO Interlink Nurses can visit the school and provide a classroom presentation, either in the child’s class or their sibling’s. The information we share is determined in collaboration with the parents and the child and our goal is to provide accurate and age-appropriate information, to answer questions and to involve students in supporting their classmate.

Providing customized school support can be complicated but it provides an additional layer of support for the child/family and relieves anxiety about academic expectations, return to school and peer relationships.

We have to consider how much personal health information can be shared. If the school is making the request for a presentation, we have to ensure the family is on board. And, in all instances, once the child with cancer is at an age to weigh in (usually Grade 3), the child must also consent. The more difficult school visits are when we are not able to be transparent about a child’s diagnosis or a recurrence of disease. In one situation, a family wanted us to talk to the class about the importance of hand washing for their “sick” child. They did not want to disclose their child’s cancer diagnosis. In such a situation, our role is to help educate the family about the importance of transparency in avoiding misguided assumptions. And even though a family might have been completely transparent at diagnosis, the recurrence of cancer and the fear of a poorer outcome this time around may make them more guarded during a subsequent classroom presentation.

We also have to be sensitive to the demographics of the classroom—if a student has had a family member with cancer, what will a classroom presentation about cancer trigger for them?

Q. How does the work of the POGO Interlink Nurse help others on the child’s healthcare team?

We work very closely with the healthcare team, sharing information from home and community to keep them informed about what is going on. Because POGO Interlink Nurses make home visits, we are privy to specific family dynamics. We are able to let others on the child’s healthcare team know if the parents are also caring for other sick family members, like a grandparent or sibling, or if there are other undisclosed situations. These kinds of disclosures may have an impact on the family’s ability to get to appointments and are important considerations in providing and receiving care.

POGO Interlink Nurses have the unique privilege to work in schools to support children with cancer, their siblings, teachers and the administrative team, and to be with the family for the entire trajectory of care. By being a link to community and hospital, POGO Interlink Nurses are vital in connecting many dots for all members of the child’s healthcare team in ways that help provide the right care in the right place for the best possible outcomes.

POGO Interlink Nurses work out of CHEO (Ottawa); The Hospital for Sick Children (Toronto); Children’s Hospital (London); McMaster Children’s Hospital (Hamilton); and Northeast Cancer Centre, Health Sciences North (Sudbury). They serve their immediate and surrounding areas, including Barrie, Simcoe, Muskoka, Peterborough, the Greater Toronto Area and northern Ontario.

Related Resources

  • Read The Childhood Cancer Care Plan for more about right care, right place, and integrated psychosocial care
Posted in Misc | Tagged POGO Interlink Nurse, school reintegration, siblings

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

Your baby has cancer

Posted on November 28, 2016 by admin

Anstead Family_2017 Wntr CCM Newsltr_28Nov16These four words are forever unforgettable. On May 26, 2015, my wife, Christine, and I had taken our 18-month-old daughter, Charlotte, to see a pediatrician at Grand River Hospital near our home. She was not herself—low energy and very pale. This was the third doctor’s visit that week and we were determined not to leave without answers. After a full morning of tests, Charlotte was diagnosed with acute lymphoblastic leukemia (ALL). We were brought to our knees. Shocked and scared, we learned her hemoglobin was at the dangerous level of 33 and we were rushed to Children’s Hospital in London for an emergency blood transfusion and the start of our cancer journey.

The next 16 days were filled with more transfusions, a surgery to implant her port, various procedures and the start of chemotherapy. We were introduced to doctors and nurses whom we’ve now come to think of as family, and we have learned as much as we could about this type of cancer and its treatment. The days were filled with procedures and the nights were mostly sleepless. It was an extremely difficult time but the silver lining was the care and respect we felt from every member of our medical team. As scared as we were, they gave us the strength to get through those days together as a family. We learned Charlotte’s treatment would span nearly two and a half years. It was at that point we decided Christine would leave her career to care for Charlotte full time. In a blink of an eye our lives turned upside down. We were terrified on many levels but we became quickly resigned to the start of this journey.

When it came time to be discharged, we were asked to stay in London to be close to the hospital until Charlotte had completed the induction stage of treatment. Leaving the security of the hospital was scary for us. We would no longer have a nurse on call to help answer questions or problem-solve at any time of the day or night.

On our last day we met Julie Dowler, our nurse case manager. Immediately we took to her kind and compassionate nature. Christine remembers their first email exchange that day. Julie told her, “Now we are family,” and she meant it. To this day, we still feel like we are her only patients. It was her support and reassurance that gave us the confidence to take the next step and leave the hospital that day.

While staying at my in-law’s home those next two weeks, we had a visit from Margaret Warden, our POGO Interlink Nurse. She helped to educate us further on leukemia as well as the role POGO would play in our lives. We learned about the generous POGO financial assistance available for childcare, food and accommodations, as well as information on the POGO Satellite Clinics. My wife and I had so many questions about what we could expect in the coming months and Margaret took her time to answer every one. Having her undivided attention in our home was comforting and we felt even more secure about Charlotte’s care.

We were counting down the minutes to the end of the induction phase. Charlotte had the full effects of the steroid treatment and in just a month our baby girl became almost unrecognizable. She was still only a baby and not able to communicate her needs or feelings. I remember she would clap her hands in frustration to get our attention. It was completely heartbreaking for our family.

At the end of induction, we were given permission to go home to Cambridge. Once home and settled, we started visiting the POGO Satellite Clinic at Grand River Hospital. It was such a relief to be able to get some of Charlotte’s treatments in our community. It meant I could go back to work and we could feel our lives starting to return somewhat to normal. Patti Bambury, our Satellite Nurse Coordinator, and one of Charlotte’s favourite people, takes great care of us. I’ve been impressed with the way the POGO Satellite Clinic communicates with our team at Children’s Hospital. We’ve never felt a disconnect in Charlotte’s care. Another thing we appreciate about Grand River Hospital is its small size. There are rarely more than a few families there for treatment at the same time so it tends to be a relaxed atmosphere. Christine and I have found comfort in connecting with the other parents while our children enjoy the play area. With only three main nurses, whom we’ve come to know very well, it feels very much like a family and this has gone a long way to improving Charlotte’s anxiety at clinic visits.

POGO opens 8th Satellite Clinic to Support Families in Peterborough area

Like all families on this journey, we’ve had our challenges to overcome. Charlotte’s first port developed a blood clot and she had to endure three months of twice daily blood thinner injections. Two other port surgeries and a PICC line were to follow. On top of this, there was a period of time where she would spit out her medication and we would have to practically hold her down to get her to take it. The worry and stress this cancer has caused in our lives has been insurmountable. My wife and I have both gone through our own stages of anxiety and depression at different times.

Trying to remain strong for Charlotte has been one of the hardest things I’ve ever had to do.

Now that we are nearly a year and a half into Charlotte’s treatment, we have learned how resilient and inspiring children are. Even on the bad days, there is always laughter. The life lessons I’ve learned from my two-year-old will carry me through the rest of my life.

Thank you POGO for your support, your financial assistance and for setting up the Satellite Clinics so families like mine can live more normal lives while still getting the care our children need.

Mike Anstead is the proud father of Charlotte.

“Charlotte  turned 5 years old in November 2018 and is thriving in Kindergarten!  Every medical follow up appointment finds her stronger and stronger and we are at the point where living with cancer is no longer a part of our daily lives. Life is wonderful, once again!”

– Mom Christine Sarlius, December 2018

Related Resources

Read The Childhood Cancer Care Plan to see how POGO is planning long-term to care for children like Charlotte.

Review The POGO Surveillance Report for the most recent 5-year data on trends in childhood cancer in Ontario.

Check out the presentations from Leukemia: Successes, Advances, Challenges, the theme of POGO’s 2016 Annual Multi-Disciplinary Symposium on Childhood Cancer.

Posted in Misc | Tagged 2016 Symposium, acute lymphoblastic leukemia (ALL), POGO Clinic, POGO Interlink Nurse, POGO Satellite Clinic

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