Misc | POGO

COVID-19 Update: What Hospitals are Doing

Posted on March 26, 2020 by admin

Childhood cancer centres and POGO Satellite Clinics across Ontario are working diligently to ensure the safety and best outcomes for children with cancer during the COVID-19 pandemic.

For children with cancer, survivors and their families, the best way to reduce the risk of COVID-19 infection is to follow the recommendations outlined by the Ontario Ministry of Health, which can be found here. If you have questions about any specific precautions for your child or yourself, contact your oncologist or nurse.

Throughout Ontario, children with a new cancer diagnosis continue to be evaluated, undergo tests and start treatment with high priority and minimal disruption. POGO Satellite Clinics remain open and are an important component of keeping patients safe and the pediatric cancer system running. The childhood cancer treating centres are taking strong action to reduce the risk for cancer patients by limiting the requirement for well patients to attend the hospital by:

Connecting through telephone or videoconferencing and rescheduling hospital appointments
Deferring imaging and blood tests when possible
Utilizing community-based laboratories for blood tests when possible

This is particularly true for childhood cancer survivors who have been off treatment for several months or more.

If you attend a childhood cancer clinic, extra precautions may cause some inconvenience, for example:

Symptom screening is occurring at the hospital and clinic entrances
There may be limitations on the number of adults/family members allowed to accompany a child in the hospital
Playrooms may be closed

It is important to recognize that these measures are taken to protect survivors, your child and other children, family members, and staff in the hospital.

Your medical team understands that this a very stressful time for children, survivors, parents and families. Please talk to your team about your questions and concerns during this time.

David Hodgson, MD, FRCPC – POGO Medical Director

Paul Gibson, MD, FRCPC – POGO Associate Medical Director

Denise Mills, MN, RN(EC), NP Pediatrics – POGO Clinical Lead, Pediatric Oncology Nursing

Click here for more COVID-19 information.

Coronavirus (COVID-19) Information

Posted on March 16, 2020 by admin

POGO is actively monitoring the Coronavirus (COVID-19) situation. We are doing our best to keep our teams healthy and informed, and to ensure continuity of our work on behalf of children with cancer, their families, survivors and the childhood cancer care system. Healthcare teams working in our partner hospitals and within POGO Satellite Clinics, POGO AfterCare Clinics and in the POGO Interlink Program are following the guidelines of their respective institutions and keeping POGO updated about any modifications to their practice. Families registered in the P OGO Financial Assistance Program should continue to submit their claims as usual. While the precautionary measures being made at this time may not be convenient, we appreciate everyone’s patience, understanding and cooperation.

For the latest information about the Coronavirus:
– Toronto Public Health
– Ministry of Health – Ontario
– Public Health Agency of Canada

POGO Office Staff Now Working Remotely
In line with the advice of public health authorities in response to COVID-19, and to ensure a safe and secure environment for POGO staff, clients and partners, all POGO staff have now shifted to remote work and POGO’s office at 480 University Avenue will remain closed until further notice. Alternative arrangements will be made to replace in-person meetings. During this time, POGO staff can be reached by email. Please refer to the POGO Staff List.

POGO School and Work Transitions Program Continues to Operate
POGO Counsellors are dedicated to supporting their clients through this challenging time and The POGO School and Work Transitions Program is continuing to operate with some modifications. POGO Counsellors are available by phone or email as follows:

In most cases, POGO Counsellors will not be travelling to their offices so will not have immediate access to all of their resources. This may mean a delay in getting information to you.
To practice social distancing, in-person meetings will be temporarily unavailable. However, POGO Counsellors will continue to be available by phone and email in addition to Skype or FaceTime, as available (counsellor/client dependent).
In keeping with hospital directives, POGO Counsellors may not be in attendance at POGO AfterCare Clinics. We ask that you please be patient when awaiting a response and know that your POGO Counsellor will get back to you as soon as possible.

Donations
The need to raise funds in support of our programs and services is no less great during this challenging time. As always, it is possible to make a secure, online donation to Pediatric Oncology Group of Ontario at this link. Thank you for your consideration.

Click here for more COVID-19 information.

MY CHILD SURVIVED CANCER, SO WHY AM I DISTRESSED?

Posted on January 29, 2020 by Claire Slaughter

At 10 years old, Tyler Doloroso was diagnosed with an aggressive cancer called acute myeloid leukemia. His only chance for survival was a stem cell transplant. With no full match on the horizon, his brother Jahni (a partial match) eventually became his donor. Read the full story: How Jahni Saved His Brother’s Life.

By: Melody Doloroso

It was only five months between Tyler’s diagnosis and his last cancer treatment, but every moment during that period was so intense and foreign to anything I’d ever experienced; it actually felt like years.

When we were in the hospital, my friends and family would comment on how admirable it was that I could stay calm and strong through it all. Looking back, I really don’t know how I managed. Two years later, my anxiety is still overwhelming and at times I find it hard to cope with the normal things. For example, if my son comes home tired from school, I panic and look for other symptoms like a temperature. The thought of him going on an overnight school trip will trigger my anxiety and “what ifs”. My mind thinks of worst-case scenarios and I get overwhelmed. The post-traumatic stress is very real.

What it takes to be a “strong mom” changes when your child is a cancer survivor.

Sometimes people ask why I’m stressed—after all, Tyler is in remission and doing exceptionally well. I can’t explain it except to say that when your child is diagnosed with cancer, your body and mind go into survival mode; you have no other choice. I did what I needed to do to get through it one day at a time. I wasn’t able to fully process everything that was happening at the time, so I guess this is what I’m doing now—processing it.

POGO-supported research explores the mental health of mothers and siblings of children with cancer.

Tyler has crossed many milestones which I’m grateful for, but there are days when I dwell on uncertainty. Vivid memories randomly pop up when I do normal things, like run errands or when I’m driving. Some good, some not so good. Sometimes memories make me cry. When I have these days, I can get sad, irritable or worried. It’s a unique thing to go through, to say the least, but talking through it with other cancer moms who can relate is very helpful.

Perhaps I’ll feel better when he hits the third-year remission mark, or fourth, or fifth—I don’t know. For now, if I’m feeling crappy, I won’t suppress it. I acknowledge that I’m still healing and let myself feel my way through my emotions one day at a time.

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

The Ups and Downs of Disclosing That You Are a Childhood Cancer Survivor

Posted on November 27, 2019 by admin

Jessica Wright is a brain tumour survivor. In 2018, she applied and was selected as one of four Survivor to Survivor (S2S) Network Facilitators. POGO’s S2S Network is a special series of interactive workshops where survivor facilitators present helpful information, lead discussions and share personal experiences about a variety of survivorship topics. During the course of their engagement, facilitators build skills and then use these skills to conduct interactive workshops throughout Ontario which provide helpful information and an opportunity for sharing with fellow survivors.

By Jessica Wright

By the time I was 10 years old, I was having lots of migraines and struggling at school.

My family brought me to the doctor several times, but I wasn’t diagnosed until my teacher—a childhood cancer survivor herself—convinced my parents to insist I get an MRI. I remember all of us were in shock when they told us I had a pilocytic astrocytoma tumour, which is essentially a slow growing brain tumour.

The tumour is smack in the middle of my brain so chemo would not have been effective, and surgery was not an option. I was treated with radiation for six weeks, but I still live with the tumour today; I liken it to a dead mouse behind a wall. I also live with several side effects. I struggle with balance; I move a bit slower than the average person and my strength is very poor. I have a strong sensitivity to smells and I still suffer from migraines. I am also blind in one eye. None of these things are significantly noticeable so I blend in with the rest of the world and look like a healthy person. That’s the thing with childhood cancer survivors; many of us live with disabilities long after we survived our illness. For some people, like me, these disabilities are invisible so we can be perceived as lazy, especially in a school or work environment.

That is why I am so grateful to POGO for creating a program where survivors can learn from each other about how to deal with things like employment, school, advocacy and disclosure. I need special accommodations to compensate for my disabilities and I have learned firsthand that how and when you choose to disclose these things can contribute to your success at work.

There was the time I was hired to work at a store, and I chose not to disclose my disability. My job was to stock the shelves and set up for the store’s grand opening, after which, perhaps, I would be hired permanently once the store opened. It went well for the first couple of days until I got stuck in the aisle with cleaning products. I tried to tough it out, but I got light-headed and felt faint. I asked my supervisor if I could be moved to another area of the store and she was accommodating, but my co-workers didn’t know why; they just felt I was getting special treatment. I think if I had said something at the beginning, I would never have been put in that aisle to begin with and maybe things would have turned out differently.

I have another story where I disclosed my disabilities during the hiring process because part of my job was going to be accepting deliveries. I let them know that I cannot manage with very heavy lifting and about some of my other challenges because of my brain tumour. My supervisor was very understanding and even supportive. After a few weeks, when she saw me struggling at the end of a long day, she asked if I wanted to work shorter shifts. She tried to work around my limitations as best she could.

Being a POGO S2S facilitator has enabled me to share my experiences with other survivors and hopefully help them cope with their own struggles. It has also been very uplifting and empowering for me. Everyone understands what I am going through. No matter what I say or what I do, they don’t judge me, and they don’t complain. I have never been anywhere where I felt so accepted. It has truly been the best experience of my life.

This story was featured in POGO’s 2019 Community Impact Report.

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What is it like to be a stem cell donor to your little brother?