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COVID-19 Reveals Benefits of Home Visits for Families of Children with Cancer

Posted on September 4, 2020 by admin

A Reflection from POGO Interlink Nurses

The COVID-19 pandemic transformed our work in such a way that we see, clearer than ever before, how essential traditional home visits are in supporting families through their child’s cancer diagnosis. Currently, virtual visits are the norm and are taking place by phone or on video conferencing platforms like Zoom and the Ontario Telehealth Network. POGO Interlink Nurses are the healthcare team members who connect the family to important hospital and community supports—including school*—so it makes perfect sense that in-home visits are integral to our work. In fact, we rely on these visits to establish a connection with our patients, their siblings and other family members in a more meaningful way and in a safe place, which is especially important for siblings.

But just as important, the home visit is a critical part of determining how the family is doing. Home visits typically allow us to use observation and our assessment expertise to gain greater insight to a family’s circumstances which cannot be duplicated in virtual visits. Being in a family’s environment gives us a glimpse of how their lives are at the time and what added stressors they may have. The broad range of factors, including social, economic, cultural and psychological that influence family coping and their adjustment to a child’s cancer diagnosis can be observed in a home differently from meeting in any other environment.

Read more about the POGO Interlink Community Cancer Nurses Program and watch this video.

Family structure, poverty and access to resources can reveal themselves (literally) and avoid the need for us to ask questions that might be misconstrued as “intrusive.” Still, we believe that many parents will share more readily when we are sitting with them in their home. Also, it is during the home visit when we might see that, for example, three family members are sharing the same bed or there is mould growing in the bathroom. We come to better understand that a family might have difficulty getting their ill child to clinic because they do not have access to transportation or there’s an elderly or sick grandparent in the home who cannot be left alone. The home environment provides context for setting up teaching. It can tell us if the family is able to cope with the complexity of home drug administration, like chemotherapy; palliative care for a dying child; or providing supportive care to help prevent and manage any adverse effects of the child’s cancer and its treatment. 

Home visits, where we’re all face-to-face, also makes it easier and more efficient to complete and collect documents and application forms. This is especially critical when families have an urgent need to access financial support.

Since COVID-19, we have embraced and adjusted well to virtual visits to bring nursing and psychosocial care to our families, but there are challenges. Seeing a child and assessing their general physical well-being is not easy. We can teach virtually, but our use of teaching aids does not work well from a distance. For example, we can show our teaching dolls, but playing with them in a way that allows mom or dad to become familiar with central line devices is tricky. And though many young parents are embracing virtual care, it is more difficult for those for whom English is a second language or when families have less access to technology.

We anticipate and look forward to home visits because we know they have many benefits for children and youth with cancer and their families.


*This fall, the return to school for children with cancer will require extra support as families navigate the complexity of COVID-19. POGO Interlink Nurses will advocate for specific accommodations for patients unable to return to school, for families who are choosing to opt-out of in-person learning and for those reintegrating into the classroom setting.

This reflection by POGO Interlink Nurses was written in September 2020, in the first few months of the COVID-19 pandemic.

Posted in In the News | Tagged COVID-19, Family Support, home visits, POGO Interlink Nurses

When your 5-year-old asks, “What did I do wrong?” by Joby McKenzie

Posted on January 2, 2018 by Kelly Zorzi

Calvin and Joby in their Lifelabs pajamas

Calvin’s illness was something we never could have anticipated. One weekend everything was normal. He was a healthy kid, skating and doing gymnastics. Then on Sunday he started complaining about a pain in his leg. We thought perhaps he had fallen while playing so we went to the hospital in the early morning, but his pain had subsided and we left without doing any tests.

The next day and night he screamed in pain again and we took him to our family doctor who sent us directly to The Hospital for Sick Children. He obviously had his suspicions but ironically, even though my husband and I both work in healthcare, cancer never crossed our minds. We thought for sure it was a broken bone or worst-case scenario a crazy virus.

On January 31, 2017, we heard the words no parent is ever prepared to hear. Calvin was diagnosed with very high-risk leukemia and given a four-year aggressive protocol.

As you would expect, everything in our family’s world turned upside down. Calvin went from being an active little boy to a very sick patient. My husband Michael and I made drastic changes to our work and home lives to take care of our son. And Calvin’s siblings, Quincie and Payton, had to make many sacrifices as they learned to navigate this “new normal.”

It is impossible to be prepared to tell your 5-year-old he has cancer. He kept asking, “What is happening to me? What did I do wrong?” We are both scientists and it was complicated for us to figure out what to say to him in a way that he would understand. We told him, “There was a mistake in your blood and now we have to get rid of all the bad blood. It was random, like an accident.” For a while that answer wasn’t good enough for him. He wanted to know what caused the accident, which there is no good answer for. 

And then of course our other kids had their concerns. When our 7-year-old Payton had a pain, he asked, “Do you think I have cancer?” He heard at school about cancer being hereditary. And the other kids at Calvin’s school had their own questions as well; they wondered if cancer was contagious and why he was losing his hair.

This is where POGO came in. We are lucky here in Ontario because every family is assigned a specialized community cancer nurse when their child is diagnosed with cancer. Tina, our POGO nurse, came to our home to help our family adjust. She visited our kids’ school to address the concerns of the other children and talked to them in age-appropriate terms so they could understand what was happening to Calvin and what the effects of his treatment would be.

These past 12 months have been intense. Helping a family member with cancer is hard; managing cancer for your child breaks you apart. Despite this, we’ve actually been very lucky. I didn’t know how to navigate the healthcare system for my child with leukemia, so our nurse Tina became an important part of our team of support. And while most families have at least one parent who must give up their job, Michael and I have been able to work because our employers have provided us with the flexibility we need to manage Calvin’s treatment.

I work at LifeLabs and my colleagues have been unbelievably supportive of me. In fact Lifelabs is the presenting sponsor of POGO’s Pajamas and Pancakes program, a relevant theme given how much time kids with cancer spend in their pjs. Thank you to my colleagues for supporting our family and for supporting the cause. And thank you POGO for everything you do for kids with cancer and their families. 

It is surprising, but the world keeps spinning even when your child is going through something like this, and our family really appreciates all of the help and encouragement. 

In November 2017, LifeLabs employees had a Pajama Party and invited Joby MacKenzie to talk about her son Calvin’s cancer diagnosis, treatment and support from POGO. Meet them both in this inspiring video Calvin Visits the Lab.


Posted in Misc | Tagged POGO Interlink Nurses

POGO Interlink Nurse Marilyn Cassidy Wins Caregiver Award

Posted on April 28, 2017 by admin

MCassidy with Kids Crpd 27Apr17POGO Interlink Nurse Marilyn Cassidy is a recipient of a 2017 Canada Cares Professional Caregiver Award.  In the 42 years that Marilyn has been a nurse, she has worked at CHEO for 24 of those years and has championed childhood cancer care as a POGO Interlink Nurse at CHEO for 19 years. 

According to Marilyn, “One of the things I love most about my work is the daily opportunity and challenge of trying to make the difficult journeys for patients and their families even just a little bit easier in my role as a POGO Interlink nurse, as well as the definite privilege of working with the most amazingly resilient children and their families. I am probably most proud of the CHEO Buddy Program, Quality in the Community,  that we have developed over the years. The program is supported by Camp Quality and we partner with the University of Ottawa medical students to provide buddies for approximately 20 patients per year. This program has brightened the days of so many of our patients, provides respite for parents and provides med students, our future physicians,  with a wonderful perspective on the family experience during treatment.”

Marilyn’s nominators had this to say:

Marilyn is compassionate, her work is knowledge based, family centred and highly principled and she enriches each of us who are given the opportunity to work with her. 

Marilyn’s work with the Interlink team involves advancing the quality of life for children with cancer and their families and forging diverse community partnerships including social services, parent groups and schools. She has been involved relentlessly in school support and reintegration for children and their siblings.  

 

She has been a mentor to many over her 40-year nursing career, including nursing and medical students; preceptorship and teaching to the greater health care community with in-services, presentations and involvement in pediatric oncology research.     

 

Families from CHEO who come to Toronto for care praise her gentle, kind, knowledgeable work. Families come prepared and supported and remain connected to her while they are away from their principle treatment centre. She is respectful and flexible and has an innate ability to understand the nature of being a child with cancer, a parent watching their child go through treatment, and the sibling who often feels left out. She goes above and beyond, advocating for families on a personal and community level, helping drive provincial policies.

 

Her work with POGO highlights her ability to see the big picture and her committee work is the driving force that keeps the work moving along. She identifies needs and gaps and works to find resources and supports to fill the gaps. Currently, she is involved in several initiatives in POGO’s Provincial Pediatric Oncology Plan that advances the existing childhood cancer system.

 

As her POGO Interlink colleagues, we value her ability to think outside the box and therefore advocate beautifully for the oncology patients. Her wisdom and drive not only benefit her patients but all children with cancer in Ontario.     

 

Marilyn has so many qualities but I think her main strengths are sustained energy, creativity and a drive to never stop improving service to patients, families and the community. She is a natural leader, leading by example for us all to benefit. Marilyn is exceptional! I cannot think of a better person to aspire to and to acknowledge in this way.    

 

Sally Casey
POGO Interlink Team Leader

Continue reading →

Posted in In the News | Tagged POGO Interlink Nurses, PPOP, Provincial Pediatric Oncology Plan

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

How our Family Changed the Day My Son was Diagnosed with Cancer

Posted on January 14, 2016 by admin

Our son Jonah was diagnosed with leukemia on October 29, 2014. Prior to that, we had been to see the doctor a couple of times for what seemed to be typical seven-year-old stuff. When he had headaches after being hit at hockey, we went to CHEO (Children’s Hospital of Eastern Ontario) where he was diagnosed with a concussion.  Then when he complained of being tired all of the time, not wanting to eat and night sweats, we thought it was the flu and took him to the clinic. On the morning of October 28th, my husband John took Jonah to the lab to get his blood work done; the doctor wanted to check for anemia.

That night, I remember the clock beside the bed read 9:16 when the phone rang. My husband had just left for work and the kids and I were already in bed. The gentleman on the phone said, “Is this Jonah’s mom? This is the Dr. E from the clinic. I am calling because we got Jonah’s blood work back. You need to get up and take him to CHEO immediately. And I want you to remember the word platelets. Now repeat it.” I repeated the word. “Good. His platelets are at 13; one, three. I know that probably doesn’t mean anything to you, but Jonah needs to go to the hospital right now, do you understand?” I said that I did and he said, “Go now” and hung up.

Not even 30 seconds later Jonah walked into my bedroom and said, “Mum, I can’t take this sweating anymore.”  It was pouring from his arms like an open faucet. I said, “It’s okay babe, we are going to go to the hospital right now.”

Everything shifted that night, even our family dynamic. It became all about taking care of Jonah. John is stepdad to Jonah and his brother Beaudin and we have a little girl, Maeve. The boys would typically spend every weekend in Kingston with their dad George, his wife Charlotte and her daughter Brooklyn. Jonah couldn’t do that anymore, we didn’t want to separate the boys and we were not willing to let any relationships slide, so George, Charlotte and Brooklyn often stayed at our house in Ottawa.

The usual daily routine quickly became more complicated. We adjusted our schedules and took time off work to accommodate caring for Jonah, school drop off and pick up for Beaudin, and childcare for Maeve. All day treatment meant all day parking and meals at the hospital, gas back and forth, and unexpected daycare costs. And having three new people in the house made mealtime and housework chaotic.

It was definitely a challenge blending the two families, but we had to or it just wouldn’t have worked for the kids. Everybody had their own stressor. For me it was fear of the unknown all of the time; George became obsessed with staying on top of the laundry; Beaudin had to deal with lots of questions at school; and Maeve went from one day in daycare to five because we needed the security of knowing the baby was safe and taken care of.  It was the hardest thing our family has ever gone through—emotionally, physically and financially—but it has brought the eight of us closer together, especially the kids, and Jonah is the hub. He knows he has a couple of years left of treatment but he never seems defeated. He is so mature for his age. This experience has made him wise beyond his years.

—Satara Stephens

Satara Stephens and family

Left to right: Jonah, Satara, John, Beaudin, Maeve

 

P.S. I would like to thank Marilyn, our POGO Interlink Nurse for being such a huge support to our family. Marilyn even spoke to Jonah’s class to help them understand what was going on and make things easier for Beaudin at school. I would also like to thank POGO and everyone who donates to the financial assistance program—it lifted a huge burden at a time when we needed all the help we could get.

 

 

 

 

Learn more about POGO programs that help children, families, survivors and others affected by childhood cancer.

Posted in In the News | Tagged CHEO, family story, POGO Interlink Nurses

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