Cognitive Late Effects: We Are Failing Our Children
By Cyndi MacKinlay
The book, In An Instant
, by ABC reporter Bob Woodruff and his wife, Lee, is a story that parents of children diagnosed with cancer, who had their lives changed “in that instant,” can relate to well. In learning about Woodruff’s long road back from his injuries, I was struck by the issue of his traumatic brain injury (TBI). Bob Woodruff is truly blessed to be on this earth today; he had so many grave injuries. The most serious was the severe impact his brain received from the bomb blast that shattered the left side of his skull. The point of injury was to the part of the brain that controls speech/language, thus causing deep cognitive injury. Neurosurgeons stressed to his family that healing from brain injuries can easily take two years time.
While the injury that Woodruff sustained was a severe, concussive injury, the similarity of the long-term cognitive impact was strikingly similar to those of children treated for brain tumors and leukemia (the segment of the childhood cancer population most at risk for cognitive late effects). The difference, however, is Woodruff received extensive cognitive therapy as part of his care. Currently, a standard of care does not exist for at-risk children receiving brain radiation as well as chemotherapy. This type of rehabilitation exists, but only for families who unilaterally seek it. It is limited in its availability because it is not incorporated as a standard of care to address this well known and documented late effect.
Some of the issues Woodruff faced pertained to loss of executive function (organization), concentration, memory, attention, and information retrieval. My son, Andrew, struggled with these issues following treatment for his leukemia, which included whole brain radiation and chemotherapy. It unfolded before us one day when Andrew was asked to grab his backpack, coat and wait by the door. We would find him standing by the door wondering what else he was supposed to do. Multiple directives just fell away.
At the conclusion of Andrew’s two-year protocol, he underwent neuropsychological testing to assess the cognitive impact of his treatment. The results painted a bleak picture, and it felt as painful as diagnosis, with one exception. His treatment lasted two years; his compromised ability to learn would be for life.
Andrew’s cognitive deficits pertained to information retrieval and processing, memory and attention. This smart child would not be able to portray what he knew so clearly in his head out to the rest of the world in verbal or written form. He required the use of a scribe to dictate his answers to when he took park in our state’s standardized testing. As the curriculum intensified in advancing grades, especially middle school, he would struggle academically. We were encouraged to have our sports-loving son participate in singular sports, like golf and tennis, as team sports would require far too many directives for him to process and retain. We were simply dumbstruck after years of debilitating treatment, this was to be his fate. Well, not while I had a breath left in me would I stand by and watch him endure this.
Andrew received his treatment at the Dana-Farber Cancer Institute in Boston when he was five years old. His leukemia protocol was very aggressive requiring cranial radiation and interthecal therapy (chemotherapy injected into the spinal fluid).The prognosis for his leukemia was excellent, and our goal was to cure him. Cure came with a steep price. After enduring two years of painful, life-threatening complications from this therapy, we discover he will be faced with life-long learning challenges. Our son, and every child treated for cancer, has earned the right to have optimal quality of life. Cancer’s youngest patients should not have to suffer in their classrooms, where school becomes the battlefield. They have lived that already.
So after learning all we could about his leukemia, we set out on yet another learning curve. This time, however, we were on our own. We researched and talked to every one we could on the subject of cognitive late effects, which led us to a multi-site cognitive remediation study funded by the National Cancer Institute (NCI) and developed by Dr. Robert Butler of the Oregon Health and Science University Doernbecher Children's Hospital and Dr. Donna Copeland of MD Anderson in Texas. This study began in 1996 as a pilot program, and the NCI refunded it again in 2001. Well-known pediatric cancer centers such as St. Jude’s, the Children’s Hospital of Philadelphia, and MD Anderson were participants.
During 20 two-hour sessions, children are given strategies to strengthen their attention, organization, memory, and information processing through a series of exercises administered by a trained remediation therapist. As children master strategies parents are provided key techniques to reinforce at home. This program has made an enormous difference in how my son learns, which has translated into success and confidence in the classroom. This program was an answer to my prayers. However, the only site we could participate in was located at the University of Rochester in upstate New York. It necessitated traveling over 900 miles more than a dozen times over the course of a year.
Parents should not have to navigate this quagmire on their own. A formalized program must be in place to transition at-risk children, as well as the majority of children treated for cancer. A number of treatment centers are tone deaf in their response to cognitive late effects in the pediatric cancer patients they treat. Research, like cognitive rehabilitation is one of a few interventions that has shown promise for children treated for cancer. Parents need to advocate for their children when aggressive treatment places their child at risk for cognitive late effects, then there needs to be in place support, services and access to cognitive repair.
Today Andrew is 15 and a freshman at Boston College High School, a school he dreamed of attending. We never did heed the advice to avoid team sports. Andrew played competitive football and basketball team at a Division 1 school. Sports and school does not come easy for him, but despite his struggles, he continues to move obstacles out of his way to achieve his dreams.
Bob Woodruff came back from his injury to shine a bright light on the traumatic brain injuries in our military men and women. He has been a tireless advocate on their behalf. As parents we are our children’s best advocate. Like Woodruff, we need to aim that light in just the right direction. They deserve no less.
Inform Parents - The process of identifying “at risk” children and working in supportive services should begin before children finish treatment return to school and adopt their own “coping” strategies. The Children’s Oncology Group (COG) recommends that the majority of children receiving cancer treatment be screened for cognitive late effects.
Neuropsychological testing must be incorporated into a child’s treatment plan. Parents should not have to search for appropriate pediatric testing services. These results are critical for parents to obtain necessary school services for their child. Some parents do not pursue because they are not aware of its importance, and many parents have paid thousands, because it is not recognized as a late of effect from their child’s treatment. Feedback from this testing can be devastating to parents, and support must be provided at this difficult time. Parents should not feel that they are navigating this complicated phase on their own.
School Liaison Programs are an important support service for parents in working with their child’s school and advocating for services they are entitled to. It should be noted that these programs are not available at all pediatric cancer centers, are not a standard of care, and do not address the issue of cognitive repair.
Develop and implement cognitive repair as part of the treatment plan for children receiving cancer treatment.
Educating the Child with Cancer, 2nd edition. This book should be given to every parent soon after diagnosis. A free copy is provided to families and the child’s teachers from Candlelighters. I have repeatedly copied excerpts from this book for every new teacher my child had. It is disease specific and a tremendous resource for parents.:
http://www.candlelighters.org/bookscandle.stm or call (800)-366-2223.
Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult from the Children’s Oncology Group(COG)– More than 200 leading children’s hospitals, university hospitals and cancer center in North America centers make up COG. Guidelines for follow-up care are disease and treatment specific. Click on the Educational Issues Health Link:
Late Effects Directory – Find a COG follow-up care facility:
Cognitive Remediation Study Provides background on this pioneering work to address the widespread issue of cognitive repair.
Follow the lead of Minnesota parents in advocating for insurance coverage of neuropsychological testing and support for cognitive late effects: The Healthy Living After Treatment of Childhood Cancer Act of 2008:
Neurocognitive Interventions for Children and Adolescents Surviving Cancer from the Journal of Pediatric Psychology, by Robert Butler and Raymond Mulhern:
Office of Cancer Survivorship Neurocognitive Effects of Cancer Treatment in the Pediatric Population – Cyndi MacKinlay, advocate:
Advocating for your child’s learning needs through treatment and beyond. Dr. Daniel Armstrong provides timely information on the issue of cognitive late effects. Discussion includes what contributes to late effects; what is being studied and interventions. Available as part of the Leukemia and Lymphoma Education series: Download at: http://www.leukemia-lymphoma.org/all_page?item_id=161418#
To order a written transcript call the information resource center at (800) 955-4572
The Role of Cognitive Remediation in Childhood Cancer Survivors Experiencing Neurocognitive Late Effects, written by pediatric oncology nurse and advocate, Jennifer Spencer, MSN, RN, CPON:
Cyndi MacKinlay is the mother of a 15-year old cancer survivor. Her son, Andrew, was diagnosed in 1998 with acute lymphoblastic leukemia (ALL) when he was five years old. He concluded treatment in 2000 and remains in remission.
In 1999 Cyndi became a founding member of the Pediatric Patient and Family Advisory Council representing the oncology floors of Boston’s Children’s Hospital and Dana-Farber Cancer Institute’s Jimmy Fund Clinic. Her work includes advocating for greater awareness and services to address cognitive late effects in children and education for parents. She is the pediatric co-editor of Side by Side, a quarterly newsletter by and for patients and family members of Dana-Farber and its affiliates in cancer care. In 2003 Cyndi was awarded a scholarship in the Survivorship-Researcher Mentor Program through the National Cancer Institute’s Office of Cancer Survivorship, and in 2006 she was a delegate at the first Lance Armstrong Foundation Summit in Austin, Texas. She created the Kids Cancer Stamp Project, an effort to establish a semipostal stamp, which, if approved by the United States Postal Service, would raise desperately needed research dollars for pediatric oncology.
Cyndi resides in Norwell, Massachusetts, with her husband, Glenn, and children, Andrew, Meredith, and Harrison. Together with her husband, Cyndi is a six-year rider in the Pan-Massachusetts Challenge riding for the Perini Family Survivorship Center, a long-term follow-up clinic, where Andrew is currently a patient. Cyndi and Andrew have spoken many times on behalf of the Jimmy Fund, and other childhood cancer organizations, to educate the public on what it is like to be a kid with cancer and the toll it takes on a family.