Family Orientation Checklist

A quick reference guide for families whose children have been diagnosed with cancer and are being treated at Sick Kids.

Financial assistance Practical services at the hospital Support programs and groups Summer and day camps Wish granting organizations Childhood cancer organizations And helpful parent tips!!

Developed by

oncology families

for families

Our important contact numbers:

Notes and follow-ups:

The Family Orientation Checklist brochure was developed by the families and support of SickKids sta� of the Haematology/Oncology Family Advisory Council, established in November 2012Co-chairs, Dr. Sarah Alexander and Caroline White.

Questions? Comments? Ideas for future revisions ?Email haematologyoncologyfamilyadvisory@gmail.com

For more general information about navigating through your SickKids experience, please ask your health-care team for a copy of the SickKids’ Family Guidebook.

Sources:POGO’s Money Matters Booklet * SickKids’ Family Guidebook * organization websites

Special thanks to: Peter Zhang, MBA Student, Ryerson University and James Tiessen, Director, Health Services Management, Ryerson University SickKids sta�: Dr. Sarah Alexander, Jillian Bates, Averill Clark, Melina Cheong

Version 1 product # xxxxxx

This Checklist belongs to: _________________________

Financial resources and programs Coping with your child’s diagnosis is di�cult enough never mind thinking about the costs of parking , getting to and from your appointments , meals and drugs. Here are some �nancial assistance programs you may be eligible for.

PARKING

Regular daily parent rate: $20Parent multi-use parking passes: 5-use pass: $80 10-use pass: $160

Where to buy: from the pay stations in elevator lobbies of the Atrium parking garage.Parent long-stay passes:

One week: $62.50 Two weeks: $125 One month: $200

Where to buy: Purchase from the Parking O�ce on Parking Level 1. The o�ce is open daily from 6 a.m. to 9 p.m.

ACCOMMODATIONS

Ronald McDonald House, Toronto:O�ers a place to stay for out-of-town families with children being treated for serious illnesses. For more information, call 416-977-0458 or visit www.rmhtoronto.org

Talk to your Social Worker or Social Work at 416-813-6805 about a referal to Ronald McDonald House.

Parent Tip: The following resources are general information. We encourage you to speak with your health care team about your family’s specific financial needs.

Nearby Hotels:Contact these hotels to ask about special hospital rates OR speak to your Interlink Nurse if you need help in �nding a�ordable accommodations. Courtyard Marriott, 475 Yonge St. at College 1-800-847-5705; www.marriott.com

Eaton Chelsea , 33 Gerrard St. West, 1-800-243-5732

Super 8 Hotel, 222 Spadina Ave., south of Dundas Street, 1-888-561-7666, www.super8downtowntoronto.com

FINANCIAL ASSISTANCE Pediatric oncology Financial Assistance Program (POFAP)Pediatric Oncology Group of Ontario’s (POGO) POFAP is available to assist Ontario families with out-of-pocket expenses for food and accommodation, as well as child care for siblings under the age of 12. Your child needs a valid OHIP number to qualify. For more on eligibility requirements and allowanc-es, visit www.pogo.ca.

To apply for POFAP, speak to your Interlink Nurse or Social Worker. Once registered, you will be provided a POFAP number to be used on your claims.

Parent Tip: There may be more �nancial assistance available to you. Ask your Interlink Nurse or Social Worker for a copy of POGO’s Money Matters booklet. It explains eligibility requirements and how to apply for these programs:

Northern Health Travel Grant

Assistance for Children with severe disabilities (ACSD)

Disability Tax Credit (DTC)

Medical Expenses Tax Credit

Child Disability Bene�t (CDB)

Check it. Customize it. Keep it. We hope this Checklist helps your family more easily �nd and access the people, places, information and support available at SickKids and beyond in local communities.

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CANADIAN CANCER SOCIETY’S TRANSPORTATION PROGRAM

If you are having di�culty getting your child to treatment on your own. The Canadian Cancer Society, Ontario Division o�ers three transportation options.

1. Travel expenses subsidized when parents/guardians drive their child.2. Rides to treatment provided by volunteer drivers.3. Public transportation assistance provides the equivalent of the lowest fare of public transportation for the child and one return adult fare for the adult.

Your Social Worker or Interlink Nurse will help families complete the Society’s registration form.

To be eligible, families must declare their �nancial need for this service and meet other requirements. To �nd out all the eligibility requirements, contact your local Canadian Cancer Society o�ce or call toll-free 1-888-939-333 or visit www.cancer.ca.

Assistance for outpatient drug costs:

Workplace Drug Plans

The Ontario Drug Bene�t (ODB) Program

Trillium Drug Program (TDP)

Government Insurance Programs

Employment Insurance (EI) Sickness Bene�ts

EI Compassionate Care Bene�ts

Private Insurance Programs

Short-term Disability Bene�ts

Long-term Compassionate Care Bene�ts

CLINIC MAP

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What is it How it helps

SickKids’ FREE wireless network (WiFi)

Use your email and the Internet.

Parent meals deliveredYou can eat meals without leaving

your child’s room.

Last night restaurant at SickKids’ is The Fountain

The Fountain take-out restaurant is

open until midnight daily, and

serves chicken nuggets, grilled

sandwiches and more. All other

SickKids’ restaurants close hours

earlier.

Parent fridges and microwaves on 8A and

6E

You can bring (nut-free) food from home.

24-hour, FREE laundry facilities

When you’re staying in the hospital,

you can wash and dry your clothes.

Child and Family Relations

service

Child and Family Relations provides

you an opportunity to discuss any

concerns or share any compliments

you may have about your child’s

care experience.

Practical services to help you when you’re at SickKids

How to get itA mobile device with IEEE 802.11 or 802.11g Wi-Fi with web

browsing capability can connect to SickKidsWiFi.

Available in the Atrium, patient rooms, Main floor of Black, Burton

and Hill wings.

Ask for the Welcome to SickKids WiFi info sheet available in your nursing station.

Call the hospital’s Meal Train office at ext. 6622 for a guest tray

menu. Fill out your menu choices and go to the Main floor Terrace

Café to pre-pay for your meals.

The Fountain is located on the main floor Atrium Wing between

Subway and the Terrace Café entrance.

Store your food in the fridge and it can be heated in microwaves

You can pick up takeout to bring back to the hospital room OR have it delivered and meet the driver in the hospital lobby. . . Many websites allow you to search online by address. SickKids is located at 500 University Ave.

You can pick up takeout to bring back to the hospital room OR have it delivered and meet the driver in the hospital lobby. . . Many websites allow you to search online by address. SickKids is located at 500 University Ave.

available on in-patient units. Parent Tip: The fridges can be quite

full.

4th floor, room 4308.

Room M223, Black Wing, Main Floor

Tel: 416-813-6181

email:cfr.experience@sickkids.ca

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Parent Tip: You can pick up takeout to bring back to the hospital room OR have it delivered and meet the driver in the hospital lobby... Many websites allow you to search online by address. SickKids is located at 500 University Ave.

Try these: www.justeat.ca www.Toronto.com ww.torontolife.comwww.urbanspoon.com/c/10/Toronto-restaurants.html

Coming to the 8D Sears Cancer Clinic Chances are that if you aren’t staying in the hospital, you will be coming to the 8D Sears Cancer Clinic for your child’s doctor appointments and treatment. The Clinic is a busy place!

Parent Tip: What to prepare for and expect on Clinic visit days:

ARRIVE A FEW MINUTES EARLY TO REGISTER and remember to bring your OHIP Health Card. Depending what you are at Clinic for, you might need to register at one of the following areas: the Clinic’s main registration desk in 8D on the 8th �oor in the Burton Wing the Clinic’s Express Chemotherapy line at the main registration desk the Day Hospital on 8D Cujo’s Room on 8D

COME PREPARED to spend a few hours on the day of your appoint-ment—depending what’s scheduled for your child that day. You’ll be happy to know that Camp Oochigeas is on-site daily with crafts and activities for your child. You’ll also �nd computers, games and a play kitchen.

REMEMBER to bring food and snacks with you. You may also want to bring along a family or friend to help you out and keep you company.

LISTEN CAREFULLY for your child’s name over the Clinic’s PA system. When you hear your child’s name, you may also hear, “go to the Orange Pod or maybe to the Yellow Pod”.A “Pod” is simply a circular area enclosed by brightly coloured plexi-glass where your child’s height and weight and other vital signs are taken prior to be seen by your doctor or nurse.

RECORD THESE important phone numbers:

Clinic phone number Sta�ed 8:00 am-4:00 pm, Monday to Friday: 416-813-5859

After hours on-call doctor for medical emergencies.

The doctor will be paged and will return your phone call. 416-813-7500

Parent Tip: If your child is scheduled for treatment at Princess Margaret Hospital and you are going there from SickKids, you can take the underground tunnel instead of walking outside. Go to Black Wing elevators on the main �oor and press the elevator button labeled PMH Tunnel. When you exit the elevator walk xxxxxTBD

Contact Nurse: When you are at home and have any questions about treatment or concerns about your child, call your Contact Nurse because they are an expert in your child’s disease, treatment, and its problems, or side e�ects.

YOUR CONTACT NURSE IS: _______________________________

THEIR NUMBER IS: 416-813-5859_ext. ______________

Key people to meet in the early days after diagnosis

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Interlink Nurse:Your Interlink Nurse has expert knowledge of community programs and services to help you and your child. The nurse may visit you at home and may schedule a visit to your child’s school to educate them about what they need to know about childhood cancer.

YOUR INTERLINK NURSE IS: __________________________

THEIR NUMBER IS: __________________________

Social Worker:Social Workers can help you deal with the social, emotional, and �nancial e�ects of your child’s illness and treatment.

They can also give you information about �nding hospital services, money, community groups and bene�ts for people with disabilities.

YOUR SOCIAL WORKER IS: __________________________

THEIR NUMBER IS: __________________________

Child Life specialist:Child Life specialists have special training in how children grow and how they react to illness and being in the hospital.

They can meet up with you in Clinic prior to a �nger poke, port access etc., to help make the procedure easier on your child.

YOUR CHILD LIFE SPECIALIST IS: __________________________

HOW TO CONTACT THEM: __________________________

Parent Liaison:Ontario Parents Advocating for Children with Cancer (OPACC) runs the Parent Liaison Program. Chances are that if you aren’t staying in the hospital, you will be coming to the 8D Sears Cancer Clinic for your child’s doctor appoint-ments and treatment. The Clinic is a busy place!

HOW TO CONTACT THEM: Tel: 416-813-7654, ext. 2878 email: liaison@opacc.org www.opacc.org

Clinic Pharmacist: A pharmacist knows how medicine works and what problems, or side e�ects these medications may cause. They can provide you information and often, medical schedules or calendars

Dietician: The dietician is specially trained to deal with the problems that your child may have with food because of the cancer and treatment for cancer.

Other SickKids people available to your family

Getting care closer to homeThrough POGO’s Provincial Oncology Satellite Program, you may be o�ered care closer to home during your child’s treatment at one of these clinics in Ontario:

Satellite Clinic LocationCredit Valley Mississauga

Grand River Hospital Kitchener-Waterloo

Orillia Soldiers’ Memorial Hospital Orillia

Sudbury Regional Hospital Sudbury

Windsor Regional Hospital Windsor

Rouge Valley Centenary ScarboroughSouthlake Regional Health

Centre Newmarket

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Support services at SickKids and beyond…

For parents and caregivers:

What is it What it o ers How to get it

About Kids Health website

A SickKids website you can trust for information about illnesses and details about prescription drugs. O ered in English and several other languages.

www.aboutkidshealth.ca

Access to interpreter and accessibility services at

SickKids

Languages services are available if you have limited English pro ciency or are deaf or hard of hearing. It can help you with medical appointments..

Let a member of your health-care team know you need an interpreter. Or advise Child and Family Relations at: Room M223, Black Wing, Main Floor Tel: 416-813-6181 email: cfr.experience@sickkids.ca

YMCA 20 Grosvenor Street

Fitness and recreation facilities at a nearby YMCA.

Get FREE passes through the Child and Family Relations service. Tel: 416-813-6181

OPACC online tools, including a list of supports families

need from friends and family when their child is diagnosed

hosts family events and helps families connect with local parent groups.

OPACC distributes information about community resources,

www.opacc.org

Carepages

Private, personalized web pages that allow you and your child to share information and keep in touch with your support network. Everyone is automatically emailed when you post a new update, so you spend less time on the phone.

Visit www.carepages.com/sickkids to set up a page before, during or after your stay.

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CaringBridge

An online space where you can connect, share news and receive support. It o ers: CaringBridge, personal, protected sites and SupportPlanner, an online tool where you can help families and friends coordinate care and organize helpful tasks.

www.caringbridge.org

Camp Quality’s Puppet ShowFor more information and how to contact the Camp Quality Puppet Teams www.campquality.com

Camp Quality o�ers a Puppet Program where life- sized puppets visit schools to encourage sensitivity about cancer and its e�ects.

Parent and Family Support Groups

Parent Support Groups at SickKids

Get support from other parents and caregivers who are facing a similar experience. Support group is co-facilitated by a parent and professional.

OPACC hosts weekly evening co ee hours and support group meetings. For dates and times: Tel: 416-813-7654, ext. 28781 email: liaison@opacc.org Website: www.opacc.org

Pediatric Cancer Family Support Programme, Hearth Place Cancer

Support Centre, Oshawa, Ont.

The facilitated Pediatric Cancer Family Support Programme meets the 4th Thursday of every month for families in Durham Region..

Contact Carolyn at Hearth Place Cancer Support Centre: Tel: 905-579-4833 email: Carolyn@hearthplace.org Website: www.hearthplace.org

Wellspring Cancer Support Network

The Halton-Peel location o ers a variety of support programs for caregivers, Children’s programs and Parents Support Groups. Other GTA Wellspring locations o er a variety of support programs for caregivers.

Website: www.wellspring.ca To register, contact a Wellspring Centre near you: Birmingham Gilgan House (Halton-Peel): Tel: 905-257-1988 Chinguacousy (Brampton): Tel: 905-792-6480 Downtown Toronto: Tel: 416-961-1928 Westkirk House at Sunnybrook: Tel: 416-480-4440

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Candlelighters Simcoe, Parents of children with

cancer Barrie, ON

Monthly support group meeting rst Monday of the month September to June. Family Care Package including comfort packs, co ee cards and information. Teen Group, one-on-one Parent support and Bereavement Support.

www.candlelighterssimcoe.ca Tel: 705-737-4296

Gilda’s Club Adult, children and teen support and networking programs.

Gilda’s Club Greater Toronto Tel: 416-214-9898 Website: www.gildasclubtoronto.org Gilda’s Club Simcoe Muskoka, Barrie Tel: 705-726-5199 Website: www.gildasclubsimcoemuskoka.org Gilda’s Club Southeastern Ontario, Kingston Tel: 613-507-3333 Website: www.gildasclubsoutheasternontario.org

Bear Theatre’s Tails production

Tails, runs for FREE every Thursday night at 6 p.m. This musical performance by SickKids sta and volunteers helps ease the anxiety of hospitalization and treatment.

Thursdays at 6 p.m. on the 4th Floor

Marnie’s PlaceA comfortable room for patients to play computer games, watch TV, play pool or board games.

4th Floor, Room 4318

Starlight Room

Only for Haematology/Oncology patients, this bright room is lled with fun activities, video games, crafts and movies. A nurse watches the children playing in the Starlight Room.

Open to Clinic patients only (brothers and sisters are not allows in the Starlight Room): Mon-Fri from 9 a.m. to 12:45 p.m. and Tues and Thurs from 2 p.m. to 4 p.m. 9th Floor

For Children

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Camp Oochigeas in-hospital program

-in 8D Clinic -in-patient activities

Ooch on the 8th o ers crafts and activities for children Mon to Fri in the Clinic. It also o ers activity nights on the in-patient 8th oor.

Camp Ooch is set up each morning in the 8D Clinic.

Playrooms Playrooms are available for patients on most units. If your child cannot leave the room, ask for the Child Life specialist.

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Having the opportunity to connect your child with other children facing a similar experience or the chance for the entire family to ‘get away from it all’ and just have fun—may be just what the doctor ordered!

Wish granting organizations Children’s Wish Foundation of Canada www.childrenswish.ca or call 1-800-267-WISH (9474). Make-A-Wish Foundation of Canada www.makeawish.ca or call 1-888-822-9474.

Recreational activities or events Million Dollar Smiles’ Holiday Bear Drive with Toys r us Gift card and its other programs www.milliondollarsmiles.ca Starlight Children’s Foundation Canada’ s Starlight Escapes events may include, movie screenings, harbour cruises, sports events and more www.starlightcanada.org or call 1-800-880-1004.

Children and family camps Camp Oochigeas, Muskoka or downtown Toronto events, residential camp for kids. www.ooch.org or call 416-961-6624 ext. 250 or to register email sgillian@ooch.org Camp Trillium, Garratt’s Island or Rainbow Lake, residential camp for kids or family camps and day events www.camptrillium.com or call 1-888-999-2267 info@camptrillium.com Camp Quality Canada, week-long camps for kids and their families www.campquality.com 1-866-738-8011 or info@campquality.com

Camps, Wish Granting Organizations and Recreational Programs

Information Sources

Here are just some of the reliable websites available. Some of these organizations o�er information for schools and educators as well as for

Childhood Cancer and Cancer Information Organizations

Childhood Cancer Canada www.childhoodcancer.ca

Leukemia Lymphoma Society www.llscanada.org

Canadian Cancer Society www.cancer.ca

Pediatric Oncology Group of Ontario (POGO) www.pogo.ca

SickKids About Kids Health www.kidshealth.ca

Ontario Parents Advocating Against Cancer (OPACC) www.opacc.org

Cancer Care Ontario www.cancercare.on.ca

Health Canada www.hc-sc.gc.ca

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