Survivorship Matters Blog By CAC2 Member Mary Beth Collins
“Your child has to be alive to experience side effects.” It’s a statement commonly heard by parents reviewing treatment protocol for a child newly diagnosed with a pediatric cancer. At that moment, one is only focused on desperately keeping a child alive and achieving No Evidence of Disease, or ”NED” as is commonly referenced. At that time, it’s almost impossible to consider quality of life factors when parents are terrified that without treatment they will lose their child. According to the Coalition Against Childhood Cancer (CAC2) Fact Library, more than 95% of childhood cancer survivors will have at least one significant health related issue by the time they are 45 years of age. 1/3 will suffer slight to moderate side effects, 1/3 more moderate level issues, and 1/3 of survivors are left struggling with numerous, severe and chronic concerns. Some survivors begin to experience side effects from treatment soon after it ends, and often problems exponentially get worse during puberty and adulthood. Many of these health issues impact quality of life and the learning process, especially issues affecting the senses and cognitive development. Many parents are not prepared to immediately shift gears from medical caregiver to academic advocate; it is a much slower process to shift the core emotional axis. Yet it is so important to do so, especially for parents of children in their formative years. Understanding the critical need for parental academic advocacy is vital for academic success – and sometimes more importantly, helping a child achieve a higher quality of life – with appropriate accommodations made available through the school system.
I remember all of the “firsts” when my little boy began pre-school: receiving the index card with his teacher’s name on it, purchasing his backpack, and the rush of excitement when I dropped him off on his first day of preschool. I remember how giddy I was bringing in cupcakes and his special Batman napkins on his birthday. These were major events, as nothing was taken for granted. They were dreams I dared to dream only after he had been declared NED and we approached the age. For a mother new to survivorship, living in the present is not a mantra, it is harsh reality. Staying in the present and not looking too far ahead is a conditioning after a year or more of treatment ups and downs, where sometimes just getting through one day can feel like a lifetime. After treatment ends, with threats of continued health issues, relapse, or a secondary cancer, staying in the present is a way of life that lasts long after a child leaves the hospital. Medical concerns like heart and lung issues, problems with the liver, limb loss, loss of a sense like eyesight or hearing, or digestive issues can be all-consuming, and assuming your child to be alive in six months, let alone two years, is more than a parent’s heart can muster when the world has already proven that your child’s life is precarious. I beamed with emotional intoxication during each “first” as if I won the lotto: my windfall to be like other Moms and Dads enjoying things that “regular” families get to do with their kids. A childhood cancer survivor attending school feels like the ultimate proclamation that prayers have been answered; your child now privileged to be healthy enough to do what he or she would be – should be– doing at that age.
Support Services for Young Children
The reality is that this may not be the first interaction with instruction and academia, it simply may be the firsts of “normal” moments. Many toddler survivors are actually involved with the school system before preschool, attending to side effects from treatments immediately once they are identified at follow up appointments. The Child Find Mandate, part of IDEA (Individuals with Disabilities Education Act) requires schools to locate, identify and evaluate all children with disabilities from birth through age 21. It applies to all children who reside within a state, including infants and toddlers, those attending private school, or those kids who are homeless or wards of the state. Child Find requires school districts to have a process for identifying and evaluating children who may need special education and related services, such as counseling or speech therapy. Once challenges are identified, children then can receive support for learning disabilities and developmental delays through the area’s early intervention programs. So, if a child has hearing or vision issues, or maybe struggling with speech regression resulting from the trauma from his/her treatment, the child has the ability to begin working with the school system, meeting with specialists regularly, and practicing strategies to strengthen skills to prepare for school.
Early intervention is critical during the formative years, especially for children who have already endured so much and have a higher hurdle to clear in order to begin school successfully. Each family views this differently because of the child’s age when treatment is over, or the ease in the ability to modulate from the role of treatment caregiver to academic advocate. For some families, the impact of side effects is so overwhelming that it is a challenge to imagine adding anything else to what is already expected of exhausted parents just trying to get through each day. Some children have six or seven specialists, all requiring separate follow up visits, testing and routine management at home. For a mother or father of a survivor, still surviving from the emotional roller coaster of treatment themselves, the challenge becomes how to incorporate additional appointments with more specialists and working on skills at home with a child, as well as juggling the management of the home, hospital visits, doctors’ appointments, and insurance challenges, as well as other children. It is a difficult bridge to cross when parents realize that in addition to the childhood cancer community they must now connect with the pediatric cardiac community, hard-of-hearing/deaf community, ADHD community, thyroid community etc. The need to understand and master medical issues exponentially increases, while maintaining the solid footing in the childhood cancer community and working with survivorship clinics.
Support for School-Aged Children: the IEP and 504
There are two different types of support within the school system for children with academic challenges: the Individualized Education Program (IEP) and the 504Plan.* Both plans provide support for children in the academic setting, but goals are very different. Simply put, the IEP provides special education for children who need support and services in order to achieve academic success. An IEP is available to those determined in need, and terminates at graduation or when a child ages out of the public school arena at 21 years old. The 504 Plan is a civil right contract that equalizes access to education for a child disadvantaged in some way. It remains active throughout an individual’s lifetime and must be adhered to by any company or service provider who receives federal funding, such as TSA (Transportation Security Administration) at airports and national parks. There is a wealth of information available about both plans and understanding the fundamental differences between them is very important when determining what is best suited for your child.** In many disability arenas, parents can find support about how to create the best plan of accommodation to support your child in school, what testing may need to be completed by the school system, which school system support staff need to be involved in the meetings, how to partner with teachers in order to successfully provide this support, and what parents can do at home to find the balance between providing rest to children after challenged days in the classroom and preparing them for the next day’s expected instruction. Additionally, there are organizations such as Wrightslaw and Understood who educate and provide support to parent advocates.
Many survivors, especially those with a central nervous system cancer, or those who received cancer-directed therapy to the central nervous system (like leukemia) benefit from neuropsychological testing. This should be arranged by the medical team rather than the school system, as being evaluated by someone who is well-spoken on how the cancer-related therapies impact the developing brain is vital. According to the abstract Standard of Care for Neuropsychological monitoring in pediatric neuro-oncology: Lessons from the Children’s Oncology Group (COG): “Neuropsychological evaluation is a sensitive metric used to identify disruptions in brain-behavior relationships resulting from primary disease or associated treatment. … Changes in scores over time can be indicative of emerging late effects or early signs of disease recurrence.” The battery of tests evaluates the comprehensive functionality of the brain. For young children, it may be divided into multiple testing appointments, while teenagers may be able to complete it in one day. A baseline needs to be taken, and typically testing is redone every three years. It is one of the best ways to examine and monitor neurological strengths and challenges as issues can be revealed that are otherwise undetected, or weaknesses could be mistaken as laziness, intentional disobedience, or misunderstood as different issues altogether. By identifying these challenges in a detailed report that follows the evaluation, recommendations for accommodations and strategies to strengthen challenged skillsets are included for parents. This report often is indisputable evidence in IEP and 504 meetings of diagnosed issues that hinder academic success.
Partnering with Schools for Support Services
The benefits of a child who has a strong parental advocate cannot be overstated, as it is with that voice that parents work with special education teams to identify issues and carve out an effective support structure needed for their children in school. Most parents learn quickly that managing issues and working with the team in the school environment, regardless of which plan is needed, is extremely different than the medical community. It is yet one more world for a parent to acclimate themselves; one where parent advocates need to learn another language, figure out who the team players are, and master the policies and procedures required to carve out strong success for your child. Some schools are wonderful, and teachers, assistant principals, and support staff are approachable, sympathetic and willing to do whatever it takes. Some school systems provide a directory of specialists accessible to families and encourage connecting to them when needed. Parents find teachers easy to communicate about day-to-day concerns and form effective partnerships where academic goals are supported both at school and home. One of my son’s most supportive teachers found pictures that matched locations referenced when reading his first chapter book in middle school. For young readers dependent upon the visuals to help better understand the text being read, this was a Godsend only provided by a caring, dedicated teacher. Unfortunately, when talking to parents navigating the special education journey, some share horror stories that echo a soldier suiting up for battle. Often schools are overwhelmed with diversified expectations, testing priorities, and a larger classroom size. It seems that our school systems are simply not funded properly to provide what is needed in order to customize support for children, despite the claim that “no child will be left behind.” It is an imperfect system responding to the most emotionally-charged desire to protect and support children. Parents struggle to set meetings, debate that some health issues actually do have an academic impact, and fight to keep a plan when the school team determines that accommodations are unnecessary. I personally had an educator tell me that my son passed her own impromptu hearing test in the classroom and certainly did not need what was appropriate for a child experiencing moderate-to-severe hearing loss. An adversarial environment becomes the newest mountain to climb and conquer for frenzied parents determined to provide the best they can for their child.
Challenges Increase During Puberty
It is important to maintain the evaluation routine as children mature into adolescence. Puberty can spawn the onset of new health issues and learning disabilities, exacerbate challenges like chemo-induced ADHD, or spotlight issues not yet detected. The accommodations provided in middle and high school provide critical support for survivors during this challenging time. But when both teen and parent are overwhelmed with too many issues, increased academic expectations and homework, and the standard drive for independence that emerges during puberty, parents and survivors are often left isolated, confused, and overwhelmed. This is the time when healthy teens are developing study habits better suited for college or independent life skills. Instead a survivor may be on home/hospital care for two or three years with multiple health issues tackling so much more than algebra, English and AP history. The divide widens between a healthy and successful transitioning youth and the survivor struggling to get through the day, leaving both parents and teens stressed, worried, and afraid.
Academia Vs. Quality of Life
For parents of childhood cancer survivors, school-related challenges were not part of the dream they painted when they prayed for their child to survive. For kids with significant issues, these academic concerns are layered on top of so many health and psychosocial issues that many parents can be paralyzed about how to determine priorities in the evening. So often parents are torn between giving children the breaks that are so deserving after eight hours of concerted effort in the classroom, and reviewing vocabulary, strengthening math skills, or keeping up with the piles of homework brought home every evening. Expectations of day-to-day academics for some kids can simply be overwhelming for the best of parent advocates. Some may even decide that the struggle with academics is not worth sacrificing a balanced life. Music, athletics, playtime with siblings, walks in the woods or other activities of interest builds confidence and celebrates life; a more deserving use of precious hours after school. The sacrifice made when choosing the break, however, is an even greater challenge with the mountain of schoolwork, and more pronounced impairment of life skills. It is often a tug-of-war in the parents’ psyche: “what is best for my child at the moment,” or “what is best for my child longer term.”
What many parents often realize is that while children attending school is a gift for a child post-treatment that provides a feeling of “normalcy,” these kids may endure a school-based experience very different from their classmates. Once again, parents are reminded that life is forever changed by childhood cancer. How that life is lived, despite academic challenges, and how parents decide to support their children with emerging and evolving challenges, deserves to be supported for the good of their children. More detailed support needs to be provided to school systems to better understand the unique challenges of childhood cancer survivors. Customized support needs to be created to help parents, and survivors, especially transitioning youth, if we truly wish to support our childhood cancer survivors properly and provide for them the quality of life they deserve.
* Later blogs will address these plans in greater detail.
**Regardless of which plan a child has while in school, it is important to ensure a child who benefits from accommodations has a 504 at the end of his/her senior year. Schedule a meeting near the end of the school year for a senior with an IEP to terminate on his/her last day of school and activate a 504 Plan, a lifelong document.
- CAC2 Childhood Cancer Community News Digest (January 30-February 5)
- CAC2 Childhood Cancer Community News Digest (January 23-29)
- CAC2 Childhood Cancer Community News Digest (January 16-22)
- CAC2 Executive Director Position Now Open!
- CAC2 Webinar–Not For Profit Financial Matters: A Deep Dive into the 990