My daughter Adaejah has always been a happy little girl—active, curious and very lovable. The fact that she was born with Down syndrome did not affect that. The fact that she had cancer did not change that.
The events that led to her diagnosis took place over a few months. Adaejah started at a school for children with disabilities when she was two years old. She developed a cold in September that had not subsided by December. She stopped eating and a cut over her forehead just would not heal. Multiple visits to our local hospital didn’t get us any closer to understanding what was going on, but within 45 minutes into an emergency visit at The Hospital for Sick Children, we found out she had leukemia. Adaejah was admitted immediately.
I was completely disoriented for a few days. The hospital connected me to a social worker to help me understand what was going on. My beautiful baby girl needed to go through several rounds of chemotherapy; she would not be coming home for six months; I could not go back to work because I needed to be at the hospital full-time; and I had to figure out how to manage as a single mother with two other kids at home.
I got a leave of absence from my job and received Employment Insurance (EI) benefits for parents of critically ill children. It wasn’t even the same as my salary when I was working, but I still had to buy food for myself and pay the bills at home. My 17-year old daughter became the caregiver to my seven-year old daughter while I lived at the hospital with Adaejah. When a child gets cancer, it impacts the whole family and how you go about things day to day. It was a huge adjustment for my kids and me.
We thought we were out of the woods when they finally sent us home. But complications of all kinds followed. Adaejah developed septic shock and kidney failure and had to receive dialysis. She relapsed and received a bone marrow transplant from a cord donor. During her second hospital stay, everything we owned was destroyed by a house fire and smoke damage. For several months after we were released from the hospital, we lived in transitional housing because we could not return home while Adaejah’s immune system was so compromised.
While I have family in Toronto, I did not get a lot of support from them during this time. I don’t even know if I can call them family anymore. I am very grateful to the friends who helped me when they could, to the hospital, and to Tina, my POGO Interlink Nurse, who has gone above and beyond. Tina connected me to so many resources, including donations during the holidays, special subsidies that helped pay the rent, and the POGO Financial Assistance Program that helped me with food and childcare. She has worked through my EI applications with me and helped to reintegrate Adaejah back into her special school.
We are not out of the woods yet. Adaejah is being monitored closely because her blood count is low. When she is able to travel, my hope is that we can all make a trip to Jamaica to see where I am from.
Ashmara was married recently and gave birth to her fourth child, Jeremiah. She is looking forward to going back to work and wants to move into a different neighbourhood to provide a better home for her family.
In a survey supported by POGO, chemotherapy-induced nausea and vomiting was identified as one of the top concerns of parents of children receiving chemotherapy. The antiemetic aprepitant—a relatively new and effective drug used to prevent these distressing side-effects in patients receiving chemotherapy—is only available in capsule format in Canada, so children who cannot swallow capsules cannot benefit from this medicine in its current form.
When a liquid form of a drug is not commercially available, pharmacists often manipulate dosage forms that are made for adults so that children can take those drugs. They do this by breaking up capsules or crushing tablets to make a liquid formula that children can swallow. This is called extemporaneous compounding. Some drugs become unstable as soon as you mix them with a liquid. In other words, they degrade so rapidly that the liquid forms are not useful; others might get absorbed into the bloodstream too quickly or not at all. Ideally when a pharmacist makes an extemporaneous compound, they use a formula or a recipe which has been studied so we know the drug’s stability. Even better is to understand how the extemporaneous liquid formulation is absorbed from the stomach into the bloodstream compared to the original tablet or capsule made by the pharmaceutical manufacturer.
In 2016, POGO awarded Dr. Priya Patel, RPh, PharmD, a MSc student with a Clinician Scholar Fellowship for her project: Relative Bioavailability of an Extemporaneous Oral Suspension of Aprepitant in Healthy Adult Volunteers. Priya, her supervisor Dr. Lee Dupuis, and their co-investigators Dr. Paul Nathan, Ms. Sue Zupanec, Ms. Jocelyne Volpe and Mr. Scott Walker, will be studying a liquid form of aprepitant designed for use in pediatric cancer patients to determine how well it is absorbed from the stomach into the bloodstream compared to the original capsule. This study will either give the current “recipe” a stamp of approval or help define what needs to be done to ensure that its performance is comparable to what we see in patients who are able to take a capsule format.
POGO is recognized as a world leader with regards to the topic of chemotherapy-induced nausea and vomiting in children. In addition to supporting research studies like Priya’s and creating new evidence around the topic, POGO leads in the development of clinical practice guidelines* to help physicians make informed decisions to optimize control of chemotherapy-induced nausea and vomiting for their pediatric patients. Until recently there were no clinical practice guidelines that focused on children for this purpose.
It’s all about creating new evidence-based information so it can be incorporated into the current practice guidelines and then implementing those guidelines so that children don’t experience nausea and vomiting due to chemotherapy. We are trying to get better at that.
*Endorsed by the Children’s Oncology Group, the world’s largest organization devoted exclusively to childhood and adolescent cancer research.
Sylvie Kozlowskyj is the Pediatric Oncology Satellite Nurse Coordinator in the POGO Pediatric Oncology Satellite Clinic at the Northeast Cancer Centre, Health Sciences North, Sudbury. She shares her insights on the importance to her practice of the POGO Satellite Manual. POGO Satellite Clinics are located in seven Ontario communities and provide some aspects of a child’s cancer care closer to home.
Q. How does the Satellite Manual impact patient care?
Sylvie: The POGO Satellite Manual directs Satellites in the day-to-day care of our patients/families by providing clear, best-practice documents in such areas as chemotherapy delivery, management of supportive care issues and palliative care. It guides health care professionals (HCPs), ensuring that families who are eligible for some of their care in the Satellite setting can safely receive high-quality care in their community comparable to that received in tertiary hospitals. The POGO Satellite Manual is a great tool for both for in-patient units and outpatient clinics.
Q. What difference does the Satellite Manual make in your job?
Sylvie: The Northeast Cancer Centre uses the POGO Satellite Manual as a reference in the development of our hospital guidelines, standards of care, and policies and procedures. The Manual also provides standard communication tools that can be downloaded for use between Satellites and tertiary centres so that all required information is shared between institutions in a timely, organized manner. Again, this facilitates the seamless, comprehensive delivery of services to our patients. The Manual also includes tools for Satellites to use in their annual report to POGO. This ensures that POGO receives the required data from the Satellites for its reporting to the Ministry of Health and Long-Term Care, for data collection and research.
Q. What should families know about the necessity of the POGO Satellite Manual in the delivery of pediatric cancer care in the community?
Sylvie: The POGO Satellite Manual is an important tool that enables HCPs to keep pace with the rapidly advancing field of pediatric oncology. The content is regularly reviewed and updated in collaboration with HCPs in tertiary and Satellite centres to ensure that care in both settings is guided by the same principles. Families can be reassured that best-practice guidelines are being followed in their Satellite, much like in their tertiary centre, and that the standard of care is equivalent.
Q. How has the change from a binder and downloadable PDF to a web-based format improved the Satellite Manual?
Sylvie: This new format, including the removal of password protection, has made the information more accessible to HCPs in all settings, outpatient as well as in-patient. Physicians can now refer to the Manual from home, on any device, whenever they need to find information on a particular topic. The online Manual is easy to locate on the POGO website, user-friendly and the information is clear and well organized. This format also allows for easy updating of individual sections of the Manual.
When I was in grade four, my sister and I were watching the Kentucky Derby (we’re both big horse people!) and there was a feature on a girl named Alex—she was battling cancer and decided to start her own lemonade stand to raise funds for pediatric oncology. We were immediately drawn to it. We thought, “Hey, why not try this at our school,” and over the course of two years we raised $300! After a bit of research online, we decided on POGO as our charity of choice and we were able to present a cheque to one of POGO’s founders, Dr. Mark Greenberg himself, which was really cool.
I continued to donate and follow POGO over the years, so when I received an email from the kinesiology department at school outlining an opportunity to join Team POGO for the Scotiabank Toronto Waterfront Marathon, I jumped on it. It felt like destiny was bringing me back to the charity I started volunteering with at a young age.
I signed up to be a POGO Team Captain because I felt that my fundraising experience would give me an edge. Although $1,000 seems like a big number, we have several months to get to that goal. Erika, our POGO contact, is very helpful and motivating. She sends us weekly emails with stories that make us feel connected to the cause and coaches us on how to get the word out and raise money. A lot of students wouldn’t know how to go about it if they haven’t fundraised before.
I have never run a marathon but I am passionate about athletics. My university friends are also coming on board and we have a bit of a competition going. Of course if anyone wants to join our team, please sign up here; the more the merrier! You can run the full or half marathon or even just the 5K. All funds raised will go to support POGO and the work they do for kids with cancer.
I can see myself continuing to volunteer with POGO beyond the race. I love the values of the organization—that they support the whole family when a child is affected by cancer and they continue to support survivors later in life. The scope of what POGO does is so broad, I feel like the reasons I am committed to the cause today will change and grow as I learn more about everything they do.
Emily Hamilton is 22 years old. She recently graduated from The School of Kinesiology at Western University in London, Ontario and is working part-time in a physiotherapy clinic.
The 2017 POGO Satellite Education Day – Over 90 pediatric oncologists, nurses, social workers, and other health care professionals gathered to enhance their knowledge of clinical issues common to paediatric cancer patients and learn new strategies to improve care for this unique patient population.
Scroll down to view individual presentations.
NOTE: The content of each presentation below captures the unedited information and opinions presented by the speakers. Please note that the information contained in the presentations was current at the time it was presented – there may be further information in subsequent literature. Listed speaker credentials were current at the time of presentation.
Outpatient Fever & Neutropenia Protocol Use in the Satellite Centres: Benefits and Challenges
Angela Punnett, MD; Charmaine van Schaik, HBSc, MSc, MD, FRCPC
Clinical Trials and Adverse Effects in the Satellite Setting: Toxicity Grading, OCREB, and More
Sarah Alexander, MD; Paul Gibson, MD, FRCPC
Strategies for Optimizing Community Resources to Address Mental Health Issues
Jane Cassano, MSW, RSW; Danielle Cataudella, PsyD, CPsych
More Smiles, Fewer Tears: Adaptable Child Life Strategies to Improve the Patient Experience
Ruth Cull (Molly Penny), Therapeutic Clown; Alexandra Frankel, BSc, CLSt Dipl, CCLS; Todd Wharton, CRPO, OATA, CACPT
Hands-On Training for Inpatient Staff: Central Line Care and How to Access Ports
Patti Bambury, RN, BScN; Monica Kaczycki, RN, CPHON; Kaniska Young Tai, BScN, RN, CPHON
Quick Hit-Brentuximab: A New Treatment Approach for Hodgkin Lymphoma
Serina Patel, MD, FRCPC
Quick Hit-Approach to Immunization in Off Therapy Patients
Jeffrey Pernica, MD, FRCPC, DTMH
Quick Hit-Dasatinib and High Risk ALL
Vicky Breakey, BSc, MD, MEd, FRCPC
Quick Hit-CAR-T / Blinotumomab
Sue Zupanec, MN, NP-Pediatrics
Cannabis Use – What Do Satellite Practitioners Need to Know?
Michael Verbora, MBA, MD, CCFP