Project Update - Spring 2012
The Hospital for Sick Children, fondly known as SickKids, is grateful to be the first Canadian pediatric hospital to benefit from an Alex’s Lemonade Stand Foundation grant. The generous grant of more than $230,000 will support the creation of a Patient Navigator role, the first of its kind in a pediatric hospital north of the U.S. border, enabling a SickKids social worker to administer the program. This new collaboration enables SickKids patient families to benefit from Alex’s Lemonade Stand Foundation’s Travel For Care Program which helps patients get to the medical treatment they need.
The cancer program at SickKids is one of the largest in North America, with about 375 new cancer diagnoses each year. SickKids is a participant in early-phase childhood cancer clinical trials through the COG Phase I program, the New Approaches to Neuroblastoma Therapy (NANT) consortium and the Therapeutic Advances in Childhood Leukemia (TACL) network.
Dr. James Whitlock, who joined SickKids in 2010 as the division head of hematology/oncology, is a clinical researcher focused on the development of new treatments for childhood leukemia. One of his goals in coming to SickKids was to expand the scope of the New Agent and Innovative Therapy (NAIT) program at the Hospital to include more innovative treatment options for children with leukemia, thus providing children in Canada better access to cutting-edge treatments closer to home.
SickKids will soon have one of the first Metaiodobenzylguanidine (MIBG) suites at a Canadian pediatric hospital. This will mean improved access to more effective, targeted radiation therapy for children with neuroblastoma. The hematology/oncology program at SickKids will be able to accept referrals for children who are currently traveling outside Canada for this treatment. The Patient Navigator program will provide expertise and assistance in linking non-medical resources to patients and families who will need to travel to Toronto for this specialized treatment or for early-phase clinical trials already available at SickKids.
New Patient Navigator:
Karen Fung has been a social worker in the solid tumor program at SickKids since 1996 and, in March 2012, began dedicating half of her time to her new role as Patient Navigator. In the Patient Navigator role, she will identify obstacles faced by families across Canada who need to travel to Toronto for innovative clinical trials and provide solutions and resources for their non-medical needs. This may include arranging and coordinating some costs for travel, accommodations, meals and other necessities; in addition to providing psychosocial support and helping families navigate a new city, the Ontario health system and the environment of family-centered care at SickKids.
“I am excited about the opportunity to be a part of this initiative and helping to establish the patient navigation service for children and families who are at a challenging phase in their child’s illness,” Fung says. “Funding from Alex’s Lemonade Stand Foundation will allow us to provide improved health care to patients with recurrent and refractory cancer who live across Canada and beyond, through their participation in clinical trials. With the support of ALSF’s Travel For Care Program and other local and national organizations we can enhance the existing network of resources and services available to these families.”
“Providing additional innovative clinical trials at SickKids is an important step in improving access for Canadian children to these potentially life-saving treatments,” says Dr. Whitlock. “However, a number of practical obstacles can still prevent families from being able to take advantage of these important opportunities. Our goal in creating the Patient Navigator role and in partnering with Alex’s Lemonade Stand Foundation was to help families in need of these trials to more easily gain access to them, both here in Toronto and wherever the most appropriate treatment options may exist.”
Making a Difference for Families:
Although the program is in its early days, the partnership between Alex’s Lemonade Stand Foundation and SickKids has already made an impact on families such as the Doull-Hoffman family from Ottawa, Ontario. After participating in a phase I trial for relapsed Acute Lymphoblastic Leukemia (ALL) at SickKids, their 19-month-old daughter Phoebe needed additional treatment available at St. Jude Children’s Research Hospital in Memphis to fight infant ALL. The family traveled to Memphis for Phoebe’s second bone marrow transplant, following a previous transplant at SickKids, and hasn’t been home to Ottawa since August 2011.
“Alex’s Lemonade was able to provide assistance with flights from Toronto to Memphis, but travel had already been arranged, so they provided us with gift cards to help with groceries and gas for our temporary home in Memphis,” says Jenny Doull, mom to Phoebe and her three-year-old sister Mae. “We left home last summer and have come all the way to Memphis with what we brought with us from Toronto. We made a decision for all of us to be here together for the duration of Phoebe’s treatment, so every little bit helps. Alex’s Lemonade made sure the gift cards were mailed here and that made settling in a little easier for us.”
Phoebe, Jenny, Mae
Thank you to Liz and Jay Scott at Alex’s Lemonade Stand Foundation for believing in SickKids and expanding your support to Canada. Not only is your generosity going to help many of our patients, you have already inspired others to support this new program at SickKids.
The Hospital for Sick Children (SickKids) is Canada's leading centre dedicated to advancing children's health through the integration of patient care, research and education. The cancer program at SickKids is one of the largest in North America, with about 375 new cancer diagnoses each year. SickKids has a strong legacy of participation in early-phase childhood cancer clinical trials through the COG Phase I program. Early phase clinical trials activities are coordinated through the New Agents and Investigational Therapies (NAIT) Program. In addition to membership in the COG Phase I program, SickKids is the only active Canadian member of the New Approaches to Neuroblastoma Therapy (NANT) consortium, and is opening an increasing number of multi-institutional investigator-initiated and industry-sponsored phase I trials. Participation in phase I trials to date has occurred primarily in the sections of Solid Tumors and Neuro-Oncology; the section of Leukemia/Lymphoma does not have a record of participation in phase I leukemia trials. The arrival of Dr. James Whitlock as the new Division Head of Haematology/Oncology this year has led to an expansion of the phase I/II leukemia clinical trials portfolio.
