rhabdomyosarcoma Archives

When Your Tumour Leaves You With a Disability – by Noah Severino

Posted on April 4, 2018 by Kelly Zorzi

Noah Severino

I was 9 years old when I was diagnosed with late stage rhabdomyosarcoma. I had been experiencing chronic fatigue, migraines and tingling in my face for over two months, but none of the doctors could find anything wrong. Then one morning I woke up and I was completely blind in my right eye.

The ophthalmologist found no reason for me to lose my sight so he ordered an emergency CT scan. I remember the pediatrician on call coming out of the viewing room and saying to my mom, “You need to get to SickKids Hospital right now; they are waiting for you.”

A tumour had basically encapsulated my brain and was moving; the doctors thought I was 24 – 48 hours away from dying. They started me on emergency chemo and radiation before they could even put a name to what I had. All in all, I had a total of 50 rounds of chemo and 30 rounds of radiation over the course of a year. Radiation caused third-degree burns on my cheek, head, in my mouth and down my esophagus, so eating was a real challenge. I used to drink coffee creamers to keep my weight up and because my mouth was so raw.

My tumour was so aggressive and advanced when I was diagnosed, that doctors wondered whether I would be able to overcome it. They wondered if I would be functional or articulate after such intense treatment, but here I am, 13 years later, a university graduate and am thankfully cancer-free.

Anyone who knows a childhood cancer survivor knows that life doesn’t just return to normal when you are declared cured. The tumour severed my optic nerve and I am completely blind in one eye. The radiation permanently damaged my thyroid and my pituitary gland, and for a long time my tear ducts and salivary glands were not functional. I still live with daily headaches that range from two to nine on the pain scale.

I have annual checkups at my POGO AfterCare Clinic. They are monitoring me for secondary cancers (because of all the radiation) and cardiac issues that may arise due to the type of chemotherapy I had. I get regular MRIs to look for brain tumours and I am thankful that my results have been clear.

As you can imagine, a brain tumour, radiation to the head and a year out of school can put a kid at a disadvantage academically.

I was luckier than other childhood cancer survivors in the same situation in that a neighbour who was a retired teacher offered to be my private tutor to help me catch up—I was actually working at a higher level than my peers at one point. Still, I find school challenging (albeit a welcome one) and use special accommodations, like a note taker to help supplement my own notes in case I experience writing fatigue or a migraine.

Watch Straight Talk: Assistive Technology after Childhood Cancer

Counsellors in POGO’s Successful Academic and Vocational Transition Initiative (SAVTI for short) work one-on-one with survivors like me to help us achieve our academic and employment goals. A HUGE challenge for me has been disclosing my disability when applying for a job. No one wants to hear that a potential employee isn’t going to be able to type quickly, or won’t show up for work some days because of the headaches and chronic pain he has to deal with.

SAVTI is funded entirely by donations from the private sector. DONATE TODAY.

Between some of the workshops I have attended, help from my family and talking one-on-one with my counsellor, I have the tools I need to advocate for myself. It is very intimidating to put yourself out there, but I have gained the confidence I need to say, “I’m a childhood cancer survivor and as a result of my treatments this is what I have to deal with, but I promise you I’m a hard worker and you will be happy with what I can do.”

I can honestly say that if I could go back in time and take away my cancer experience, I don’t think I would. It has shaped my goals and made me who I am. My hope is to one day work with other childhood cancer survivors or kids with serious illnesses to help them grow and be the best they can be.

Through his work with his POGO Counsellor, Noah received a number of post-secondary scholarships and graduated with a (Honours) Bachelor of Humanities from Carleton University. Noah was recently accepted into the Masters of Management program at the Schulich School of Business at York University.

Pediatric Synoptic Pathology Reporting Webinars

Posted on May 30, 2017 by admin

As part of POGO’s long-range plan for childhood cancer in Ontario, a task force was initiated to determine reporting protocols currently in use, to review/generate/approve reporting templates and conventions, and to recommend future practice in Ontario. The POGO Pathology and Molecular Diagnostics task force identified and endorsed the College of American Pathologists’ (CAP) existing pediatric protocols as the expert consensus-based approach to reporting and is recommending their adoption in Ontario.

To date, there have been three Pediatric Synoptic Pathology Reporting webinars, hosted by POGO, the Canadian Partnership Against Cancer (CPAC) and Canadian Association of Pathologists (CAP-ACP), to educate the pathology community on these protocols and encourage their adoption. These webinars provide expert advice for advancing pediatric oncology toward standardized reporting of pathology specimens; optimal pathology investigation; incremental clarity of clinical implications; and unprecedented analytics.

Learning Objectives:

To review the College of American Pathologists’ (CAP) protocols related to pediatric oncology and their use by pathologists.
To understand changes in the latest revision of the CAP cancer protocols and electronic cancer checklists.

Audience:
Pathologists, Pathology Fellows and Residents;
Pediatric Oncologists, Surgeons, Radiation Oncologists;
Clinical Research Associates (CRA’s)

2017: Synoptic Pathology Reporting for Pediatric Patients with Ewing Sarcoma

Speaker: Dr. Dina El Demellawy, MD, PhD, FRCPC
Pediatric Pathologist, Children’s Hospital of Eastern Ontario (CHEO) Associate Professor, University of Ottawa and the University of Northern Ontario School of Medicine

(Presented March 22, 2017)

DOWNLOAD THE 2017 WEBINAR

NOTE: Select “Ewing Sarcoma” from the section entitled “CAP cancer protocol education sessions” to download and watch the webinar. A password is not required

2016: Synoptic Pathology Reporting for Pediatric Patients with Rhabdomyosarcoma

Speaker: Dr. Gino Somers, MBBS PhD FRCPA
Head, Division of Pathology, Hospital for Sick Children, Toronto, ON
Associate Professor, Department of Laboratory Medicine & Pathology, University of Toronto
Co-Chair, POGO’s Pathology & Molecular Diagnostics Task Force

(Presented May 11, 2016)

DOWNLOAD THE 2016 WEBINAR

NOTE: Select “Synoptic Pathology Reporting for Pediatric Patients with Rhabdomyosarcoma” from the section entitled “CAP cancer protocol education sessions” to download and watch the webinar. A password is not required .

2015: Synoptic Pathology Reporting for Pediatric Patients with Neuroblastoma

Speaker: Dr. Joseph de Nanassy, MD, FRCPC, CCPE, MCHM
Division Chief, Anatomical Pathology, Children’s Hospital of Eastern Ontario, Ottawa, ON
Associate Professor, University of Ottawa
Member, POGO’s Pathology & Molecular Diagnostics Task Force

(Presented June 18, 2015)

DOWNLOAD THE 2015 WEBINAR

NOTE: Select “Synoptic Pathology Reporting for Pediatric Patients with Neuroblastoma” from the section entitled “CAP cancer protocol education sessions” to download and watch the webinar. A password is not required .

2014: Synoptic Pathology Reporting for Pediatric Patients with Wilms Tumour

DOWNLOAD THE 2014 WEBINAR

NOTE: Select “Synoptic Pathology Reporting for Pediatric Patients with Wilms Tumour” from the section entitled “Past CAP cancer protocol education sessions” to download and watch the webinar. A password is not required .

Local Control – Pelvic Surgery for Genitourinary Rhabdomyosarcoma Maximizing Success and Minimizing Morbidity

Posted on September 4, 2014 by admin

Presentation Description: This presentation offered a visual review of the remarkable surgical options available in skilled hands to preserve and restore the best possible function of the genitor-urinary tract after local control of sarcomas of this anatomical site.

Speaker:

Antoine E. Khoury, MD, FRCSC, FAAPProfessor
Department of Urology, University of California Irvine and Chief of Pediatric Urology Children’s Hospital of Orange County
University of California, Irvine
Pediatric Urologist
Children’s Hospital of Orange County and University of California, Irvine Medical Center, Orange County, CA

Spotlight on Solid Tumours

Posted on March 4, 2014 by admin

Presentation Description:
Children with solid tumors often present a diagnostic challenge to the oncology team. Identifying the tissue of origin and final pathology assignment is a multi step process. Molecular pathogenesis has improved and refined the diagnostic process of many solid tumors. Tumor-specific genetic aberrations provide diagnostic precision and play a role in prognosticating staging as well as potential response to therapy. This presentation focused on the diagnostic process from initial presentation through identification and final treatment assignment of patients with Rhabdomyosarcoma.

Speaker:
Hanna Tseitlin, RN(EC), MN, PNP
Pediatric Oncology Nurse Practitioner
McMaster Children’s Hospital, Hamilton

2010 POGO Symposium on Childhood Cancer

Posted on February 1, 2013 by admin

The 2010 POGO Multi-Disciplinary Symposium on Childhood Cancer – Pediatric Sarcomas: Biology to Impact – explored advances in biology, diagnosis and therapy of rhabdomyosarcoma and osteosarcoma in particular, and examined the impacts of sarcomas and their treatment on the daily lives of the patient and family both during and after treatment. The related domains of rehabilitation, developmental aspects including sexuality, and cultural and developmental impacts on decision making were also targeted. This material is relevant to all professional disciplines that manage these patients.

VIEW THE PROGRAM

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.

POGO

Blog

Tag: rhabdomyosarcoma