Burlington, Vt. - Research on Leukemia at the University of Vermont could change treatment options for patients.
Dr. Jessica Heath says the hardest part of her job is telling a parent their child has cancer.
"You know that that whole family's life is going to change like that," she said.
Health works at the Children's Specialty Clinic at the University of Vermont Medical Center in pediatric oncology. She says the clinic sees about 30 new cases of childhood cancer each year.
"Their life story becomes what happened before cancer and what happened after cancer," she said.
Dr. Heath has some patients with Leukemia, a blood cancer. Chemotherapy treatment for these children could take months, depending on the patient.
Research being done just a few buildings away could soon help kids who are fighting Leukemia.
Heath is working with UVM professor Seth Frietze on research to identify different types of proteins in Acute Lymophoblastic Leukemia, also known as ALL. It's a higher risk form of the disease. They're partnering up with researchers from the University of Minnesota to do the work.
"Even something like Leukemia, there's many different types and even every patient is different from on to the next," Frietze, an Assistant Professor at the University of Vermont, said.
Frietze considers himself a 'gene jock,' looking deep into the cancer cell's DNA.
"You look at them under a microscope and they look the same," Frietze said.
Frietze helped to find one key protein, the 'needle in the hay stack,' as he put it. The protein, STAT5, causes competition between other proteins, driving the cancer.
"If we have a lot of that one protein and none of this other protein, it leads to a bad prognosis and a bad outcome," Frietze said.
The key difference in the DNA's protein sequence.
"Those differences are very relevant for our treatment options," he said.
In the future, this means doctors, like Jessica Health, will be able to create more specific treatment plans for high risk Leukemia patients, cutting down on long term or permanent side effects.
"We know that 50 to 60 percent of children who are treated for Leukemia will suffer long term or even permanent side effects from their treatment," Heath said. "These include things like developmental delay, toxicity to the heart, to the kidney."
Researchers are still a long way from this study making its way to clinics.
"Ultimately this research will lead to something that will impact patients," Freitze said.
"Children are so resilient and so tough, which you might not imagine looking at this tiny little two or three year old," Heath said.
The research is a ray of hope for the littlest ones putting up a big fight.
San Antonio resident Brittany Galan was diagnosed with leukemia when she was 6 weeks old. She underwent chemotherapy for two years and has had several health problems as a result of the treatment. (Tamir Kalifa for The Washington Post)
The rate of second malignancies in survivors of childhood cancer is declining — an improvement linked to reduced radiation treatment of the first disease, according to a new study.
The research, published Tuesday in the Journal of the American Medical Association, focused on new cancers — not recurrences — that occurred within 15 years of the original ones. The rate for such cancers fell from 2.1 percent for survivors diagnosed in the 1970s to 1.3 percent for those diagnosed in the 1990s.
For the same period, the percentage of pediatric cancer patients treated with radiation therapy fell from 77 percent to 33 percent, and the doses were ratcheted back.
The study was the latest to suggest that efforts to modify potentially toxic cancer treatments — including radiation and chemotherapy — are paying off in reduced “late effects.” These are serious and sometimes life-threatening complications, such as second cancers, heart problems and infertility, that can affect cancer survivors years later.
The research was based on data from the National Cancer Institute-sponsored Childhood Cancer Survivor Study, which tracks more than 30,000 survivors. The new analysis included more than 23,000 people treated over three decades.
Oncologists and researchers had long assumed that reducing radiation would benefit pediatric cancer survivors, said Gregory Armstrong, an oncologist at St. Jude’s Children’s Research Hospital in Memphis and the principal investigator of the CCSS. But the new paper demonstrates the link, said Armstrong, one of the authors of the study.
“We reduced radiation therapy and that reduced the risk,” he said.
Even so, childhood cancer survivors remain at risk for later malignancies. Survivors from the 1990s are four times as likely to be diagnosed with another cancer than their peers who were never sick with cancer. Those treated in the 1970s are six times as likely to develop another cancer. The most common second malignancies are breast and thyroid cancers.
Courtesy of The Washington Post
http://www.internationalchildhoodcancerday.org/About.html for more information!
What is International Childhood Cancer Day?
International Childhood Cancer Day is a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families. The day promotes increased appreciation and deeper understanding of issues and challenges relevant to childhood cancer and impacting on children/adolescents with cancer, the survivors, their families and the society as a whole. It also spotlights the need for more equitable and better access to treatment and care for all children with cancer, everywhere.
Who is behind International Childhood Cancer Day?
This annual event was created by Childhood Cancer International (CCI), a global network of 183 grassroots and national networks of parent organizations in 93 countries, spanning 5 continents. CCI is the largest childhood cancer patient support and advocy network.
International Childhood Cancer Day is based on Childhood Cancer International’s (CCI) core belief that every child with cancer deserves the best possible medical and psychosocial care, regardless of country of origin, race, financial status or social class. It is also anchored on the premise that childhood cancer deaths are avoidable, with timely and accurate diagnosis , availability and access to proper treatment and care as well as affordable, good quality essential medicines.
ICCD was first launched in 2002. Since then, the annual ICCD has generated the support of global networks and leading institutions including: SIOP (International Society of Pediatric Oncology, with 1500 plus members), SIOP Europe (European Society of Pediatric Oncologists), UICC (Union for International Cancer Control with 770 member organizations in 155 countries), St. Jude Children’s Research Hospital, and IARC (International Agency for Research on Cancer), among others. This year the coalition has further expanded to include international child focused organizations such as ICPCN (International Childrens Palliative Care Network ) and CLAN (Caring and Living Among Neighbours).
Why it is important for you/your organization to show support and solidarity for International Childhood Cancer Day?
Children and adolescents are the heart of every community and nation. It is our responsibility to ensure that they are able to live life to the fullest and to reach their full potentials.
Sadly, childhood cancer robs our kids of their childhood and youth. It threatens and puts at risk their very survival. A cancer diagnosis shatters every sense of “normal life” for children, adolescents and their families. But even more heart wrenching than the effects of cancer on the families, siblings and parents, are the effects of cancer on the children and adolescents themselves. At the age of supposed innocence, enjoyment and pure joy, kids with cancer are faced with difficult and demanding situations, isolating them for long periods of time, from peers and friends. Most often, the cancer journey is marked by tremendous pain and stress. Thus, we believe that no child or family should go through the cancer journey alone.
Today, we encourage you to STAND UP and SPEAK OUT for kids with cancer, the survivors and their families. Our challenge is to ACT NOW, because we all know that for children and adolescents with cancer, today is sometimes all that they have!
Alone, we can make a difference. Together, we will create change. Together, we can help make life better for children and adolescents with cancer, the survivors and their families.
courtesy of Register-Herald.com, by Wendy Holdren 2/7/2017
In an effort to help thousands of children who undergo cancer treatment each year, U.S. Sens. Shelley Moore Capito, R-W.Va., and Jack Reed, D-R.I., last week introduced the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2017. The bipartisan legislation aims to advance pediatric cancer research and child-focused cancer treatments, while improving childhood cancer surveillance and providing resources for survivors and those impacted by childhood cancer. Capito and Reed were joined in introducing the bill by Sens. Chris Van Hollen, D-Md., and Johnny Isakson, R-Ga.
“We must continue making advancements that can help save the lives of those battling childhood cancers. The Childhood Cancer STAR Act will contribute to new developments in research and treatment, and has the potential to positively impact tens of thousands of lives. I’m proud to reintroduce this very important legislation for patients and families in West Virginia and across the country,” Capito said.
Childhood cancer research has progressed in recent years, but cancer is still the leading cause of death by disease past infancy among children in the U.S., according to NIH’s National Cancer Institute (NCI). NCI estimates 10,380 children and adolescents up to 14 years of age nationwide were diagnosed with cancer within the last year and 1,250 will die of the disease. U.S. Reps. Michael McCaul, R-Texas; Jackie Speier, D-Calif.; Mike Kelly, R-Pa.; and G.K. Butterfield, D-N.C., introduced the legislation in the U.S. House of Representatives.
A summary of the bill follows:
- Expanding Opportunities for Childhood Cancer Research: Due to the relatively small population of children with cancer and the geographic distance between these children, researching childhood cancer can be challenging. As such, the Childhood Cancer STAR Act would authorize the National Cancer Institute (NCI) to expand existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials to collect and maintain relevant clinical, biological, and demographic information on all children, adolescents and young adults with cancer.
- Improving Childhood Cancer Surveillance: Building upon previous efforts, this bill would authorize grants to state cancer registries to identify and track incidences of child, adolescent and young adult cancer. This funding would be used to identify and train reporters of childhood cancer cases, secure infrastructure to ensure early reporting and capture of child cancer incidences, and support the collection of cases into a national childhood cancer registry.
- Improving Quality of Life for Childhood Cancer Survivors: Unfortunately, even after beating cancer, as many as two-thirds of survivors suffer from late effects of their disease or treatment, including secondary cancers and organ damage. This legislation would enhance research on the late effects of childhood cancers, including a study on insurance coverage and payment of care for childhood cancer survivors; improve collaboration among providers so that doctors are better able to care for this population as they age; and establish a new pilot program to begin to explore innovative models of care for childhood cancer survivors.
-Ensuring Pediatric Expertise at the National Institutes of Health (NIH): The Childhood Cancer STAR Act would require the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer.
With the infusion of $10 million in philanthropic support, two of the region’s largest medical centers have established four high-level research positions aimed at making Kansas City an international hub in the fight against pediatric cancers.
Children’s Mercy Hospital and The University of Kansas Cancer Center announced the new endowed chairs Monday evening at the Stowers Institute for Medical Research.
“There are very few causes in our community that touch people’s hearts like children and cancer,” said Dr. Roy Jensen, director of the cancer center.
Each position has an individual focus: immunotherapy, health outcomes, genomics and hematologic malignancies.
Establishment of the endowed chairs came through donations from area foundations and individuals, including the Hall Family Foundation. The Hall money is part of a previously announced $8 million gift the foundation made to cancer center last year.
The funding will go toward luring top-notch pediatric research scientists to the two institutions, outfitting lab space and offering other facilities and staff arrangements.
Recruitment is expected to begin immediately, with no definite timetable on filling the positions. The endowed chairs are a “bold step in creating a better future for children with cancer and ultimately a future where cancer doesn’t exist,” said Dr. Michael Artman, chairman of Children’s Mercy pediatrics department.
Monday’s announcement came about two weeks before a review team from the National Cancer Institute is scheduled to visit the cancer center, which is seeking NCI certification as a “comprehensive” cancer cancer. The center submitted its application in September and NCI is expected to make a decision this summer.
If the application is approved, KU would become the nation’s 48th comprehensive cancer center.
“You can’t be a comprehensive cancer center if you are ignoring pediatric patients,” Jensen said.
William F. Bradley Jr., and his wife, Robbie Harding, helped underwrite the chair in genomic research. The Overland Park, Kansas, couple’s daughter, Lauren, has undergone treatment there for leukemia.
“Our experience with Lauren,” Bradley said, “has taught us that no child deserves the condition that brings them to Children’s Mercy.”
Mike Sherry is online news editor at KCPT’s Flatland. Email him at email@example.com or follow him on Twitter @MikeSherryKCPT.
Courtesy of news-medical.net and www.connecticutchildrens.org
Quality of life of patients doing yoga improved, according to the conclusions of “Results of a Pilot Yoga Intervention to Improve Pediatric Cancer Patients’ Quality of Life and Physical Activity and Parents' Well-being”.
This study, published in the January 2017 issue of “Rehabilitation Oncology”, concluded: “Our findings support the notion that yoga for pediatric cancer patients during active treatment is feasible and potentially helpful in improving both patients' and parents' well-being.” It was undertaken by Dr. Andrea D. Orsey and her researcher-colleagues from Connecticut Children's Medical Center, University of Connecticut Hartford School of Medicine, University of Connecticut Storrs, Denmark's LEGO Foundation and Connecticut's Center for Public Health and Health Policy.
The yoga sessions in the study were reportedly designed to teach yoga as a form of integrative therapy for pain management, fatigue, stress, anxiety, and overall helpfulness to improve the quality of life. These included breathing, yoga asanas, relaxation, meditation and savasana.
The authors wrote: We found preliminary evidence that participating in yoga was associated with increased social and emotional health-related quality of life. Yoga is desired by many patients and their parents, and it appears that it may be helpful. Our study contributes to the growing body of literature suggesting the helpfulness of yoga in the context of pediatric cancer patients.
Meanwhile, Hindu statesman Rajan Zed, in a statement in Nevada today, called this study, undertaken by Connecticut and Denmark researchers looking into the possible usage of yoga for pediatric cancer patients, “a step in the positive direction”. Zed urged all major world schools of medicine to explore various benefits yoga offered.
Yoga, referred as “a living fossil”, was a mental and physical discipline, for everybody to share and benefit from, whose traces went back to around 2,000 BCE to Indus Valley civilization, Zed, who is President of Universal Society of Hinduism, noted.
Rajan Zed further said that yoga, although introduced and nourished by Hinduism, was a world heritage and liberation powerhouse to be utilized by all. According to Patanjali who codified it in Yoga Sutra, yoga was a methodical effort to attain perfection, through the control of the different elements of human nature, physical and psychical.
According to US National Institutes of Health, yoga may help one to feel more relaxed, be more flexible, improve posture, breathe deeply, and get rid of stress. According to a “2016 Yoga in America Study”, about 37 million Americans (which included many celebrities) now practice yoga; and yoga is strongly correlated with having a positive self image. Yoga was the repository of something basic in the human soul and psyche, Zed added.
Writing about the purpose of this study, authors wrote: Yoga is increasingly proving beneficial in improving distress, pain, physical activity, and health-related quality of life in adult patients with cancer. We aimed to study the feasibility and preliminary efficacy of a yoga intervention for pediatric cancer patients in active treatment and for their families.
Authors also wrote: According to the American Cancer Society, approximately 10,380 children living in the United States younger than 15 years receive a diagnosis of cancer annually. Yoga may be especially helpful for cancer patients, given that it can be practiced anywhere and is easily modifiable to physical limitations by accommodating yoga in a hospital bed, chair, or wheelchair. The growing body of literature suggests that yoga may be helpful for pediatric cancer patients in active treatment.
Courtesy of CURESEARCH For Children's Cancer
After “what can we do?” the question schools will raise is whether your child can do schoolwork. Sometimes parents are surprised by that question, thinking, “My child has just been diagnosed with cancer, why are you asking about schoolwork?!”
The answer to this question is that everyone — you, your family and your health care team — believes your child will become a cancer survivor. Maintaining your expectations about doing schoolwork from the beginning increases the likelihood that your child will be able to return to his or her grade and continue to pass through school without losing a year. By doing homework and by getting extra help or tutoring in the hospital or at home, your child will feel prepared to return to the classroom. Taking exams, including finals, state exams or even college entrance exams such as the SATs or ACTs, in the hospital can often be arranged depending on your child’s condition. Tests and projects can also be postponed if necessary. The key to helping your child succeed academically is excellent communication between you and your child’s school, and maintaining the same high expectations for your child’s performance and behavior as you had before cancer came into your life.
Most cancer centers that treat children provide hospital teachers who can help students keep up with schoolwork during hospitalization. In many districts, a child who is in the hospital for five days or more will qualify for in-hospital teaching. Hospital teachers usually provide one hour a day of private instruction; additional group instruction may be available if medically approved. If the hospital does not have a full-time teacher, the hospital social worker, child life specialist, or nurse coordinator can help you contact your school district to arrange for a teacher to work with your child. Smaller districts that do not have designated hospital teachers often recruit teachers from schools near the hospital.
When a child will be in the hospital for an extended stay, parents are encouraged to make sure their child has been referred for hospital teaching and to consider meeting with the hospital teacher to review the teaching plan. Once your child is enrolled in the hospital school program, the hospital teacher will contact your child’s regular school and set up a plan to get homework assignments and to turn in completed work. The hospital teacher will arrange regular teaching times that accommodate your child’s medical needs, ability to concentrate and the hospital schedule.
Hospital teachers may not be able to cover every subject, especially for middle- and high-school students who are taking advanced courses. However, school credits may still be earned for in-hospital instruction and your child can remain connected to the regular school program. When your child is ready to be discharged, hospital teachers can help arrange for a Home Teacher or your child’s return to regular school.
For advanced students there are a number of options. First, the school may be able to supply a tutor with knowledge in the advanced subjects. In some school districts such skilled teachers are not available for tutoring. In this case, the family can sometimes work with the school to hire tutors from local universities, community colleges or from other high schools. If the school district is not able to accommodate your child’s education needs, the district should reimburse the family for the tutoring. Lastly, in some cases where the student would benefit from a reduced class load, he or she can drop a class (for instance chemistry or AP British Literature) and then make up the additional class at a community college during the summer.
Home Bound Schooling
When your child is discharged from the hospital but unable to return to school because of health concerns, the school district must provide a teacher who comes to your home regularly to instruct your child. Typically, a student must be out of school for 3 to 4 weeks to qualify for a home teacher.
Once your child is enrolled in home teaching, the home teacher will contact your child’s regular school teachers to make sure that your child is getting the homework assignments needed to prepare for returning to school when medically appropriate. As the parent, you should meet with the home teacher to review the plan for home teaching and to provide clear information about your child’s illness and treatment so lessons can be planned accordingly. It may be helpful to have the home teacher communicate directly with your child’s oncology nurse or social worker so they can answer any specific questions and also serve as an ongoing resource when needed.
Home instruction usually occurs two or three times per week for an hour or more each visit and is scheduled around medical appointments or treatments. The teacher will provide instruction, review homework and make assignments or other work such as projects. A home teacher may continue to work with a student during ongoing hospitalizations, especially if the hospital is nearby. If the child has special learning needs, the home teacher can assist in accessing appropriate school services (see Learning Problems During or After Treatment) for any child requiring special education accommodations.
While home teaching provides less actual teaching time than school, most students will be able to earn the credits needed to stay current with regular classes and grade placement. When a child is scheduled to return to regular school, the home teacher can also facilitate re-entry.
Courtesy of CURESEARCH for Children's Cancer
Educational Difficulties Associated with Illness or Treatment
Treatments for cancer during childhood or adolescence can affect educational progress due to prolonged absences or reduced energy levels. In addition, some types of cancer may require therapy to control or prevent spread of the disease to the brain or spinal cord (central nervous system). This therapy can sometimes affect learning abilities. Parents and teachers should be aware of potential educational problems that may be related to cancer treatment so that children and teens at risk can be monitored closely and given extra help if needed.
Types of Educational Difficulties that May Be Experienced
The brain is a complex structure that continues to grow and develop throughout childhood and adolescence. Some problems may not become apparent until years after therapy is completed. Common problem areas include:
*Social situations, especially with children who are not aware of a child’s cancer
Factors that May Place Children and Teens at Increased Risk for Difficulties in School Include:
*Diagnosis of cancer at a very young age
*Numerous or prolonged school absences
*A history of learning problems before being diagnosed with cancer
*Reduced energy level
*Cancer treatment that affects hearing or vision
*Physical disabilities resulting from treatment
*Cancer therapy that includes treatment to the central nervous system
Who is at Risk for Developing Educational Difficulties?
Children treated for brain tumors are the most likely to have received treatments such as surgery and cranial radiation therapy that may affect academic abilities. Since treatments vary widely, not everyone who was treated for a brain tumor is at increased risk.
Cranial radiation is sometimes given to children with cancers other than brain tumors, such as some leukemias. Total body radiation, which includes the brain, is a common treatment for children undergoing certain types of bone marrow or stem cell transplantation. Cranial radiation treatment, especially at high doses, is a risk factor for educational difficulties.
There is some evidence that children treated with chemotherapy directly to the brain, such as intrathecal methotrexate or triple intrathecal therapy regimens, may be at increased risk, although the likelihood is less than for a child with a brain tumor.
Recommended Psychological Evaluation and Testing
The ideal recommendation is that any young person who is having difficulties in school should undergo a specialized evaluation by a child psychologist experienced in the types of issues faced by children with cancer. Children, who are doing well but are at risk for later educational difficulties because of their type of illness or treatment (any brain tumor), should also be evaluated to obtain baseline scores that can be compared to findings later. Parents and teachers should carefully monitor the educational progress of all children treated for cancer. Further evaluations may be necessary if the child begins having trouble in school or develops any of the problems listed above. In addition, repeat testing is often recommended at times when academic challenges are more likely to occur, such as at entry into elementary school, middle school, high school and during pre-college planning. The Children's Oncology Group recommends that children with brain tumors be evaluated.
Help with Educational Difficulties
If a problem is identified, special accommodations or services can be requested to help maximize the student's learning potential. The first step is usually to schedule a meeting with the school in order to develop a modification in the child's educational plan. This may be done in an informal manner, or it can be more formalized for public school students as a Section 504 Modification (504 Plan), which is covered by civil rights law. The more formal approach requires the public school to follow-through with the plan and allows for legal recourse if it is not adhered to. Private schools are not compelled to comply with such modifications, but are usually very helpful in making appropriate accommodations as needed.
Examples of strategies that are often helpful for children and teens with educational problems related to cancer treatment include:
*Seating near the front of the classroom
*Minimizing the amount of written work required
*Use of tape-recorded textbooks and lectures
*Use of a computer keyboard instead of handwriting
*Use of a calculator for math
*Modification of test requirements (extra time, oral instead of written exams)
*Assignment of a classroom aide
*Extra help with math, spelling, reading and organizational skills
*Duplicate set of textbooks to keep at home (should be done for any child with cancer during treatment)
Special Educational Services for Children with Cancer
Free, special educational services are available through public schools for all children, three years old through high school graduation, who have unique educational needs that interfere significantly with the child's ability to learn and make progress. These educational needs include children who are gifted, have special health care needs, children with special learning needs or children with developmental delay. These special educational services are mandated by federal and state educational law for students in every school district in the United States, and are delivered through the Department of Special Education in each district. Children in private schools may also receive these public special educational services at local public schools. Services may vary from modifications in the regular program to assistance by educational specialists at school for one or more periods to a special self-contained class or special school for the most intensive needs. Children with cancer may qualify for special education services under the category of "Other Health Impaired (OHI)."
In order to receive special education services, the parent and child need to go through the following steps.
Parents must formally request an Evaluation for Special Educational Services at the office of their child's public school. Parents must provide an explanation for why they are making the request. For private school students, this request is made at the office of the local public school the child would attend if he or she were in public school. This request should be made in writing to the school principal, vice principal or campus representative of special education services for the school district. The evaluation is to determine if your child will qualify for an Individualized Educational Plan (IEP) and special educational services.
Once the Request for Evaluation is received, it will be forwarded to the school district's Department of Special Education, which is responsible for all special educational services within the district. The school district must schedule an evaluation promptly (usually within 90 days). Evaluations include personal interviews with you and your child, psychological testing, direct observations, reviewing records, etc. The evaluation is typically conducted by a school psychologist employed by the school district, along with other relevant health specialists (e.g., occupational therapist, speech therapist, physical therapist, etc.). You may request that private psychological or neuropsychological test information from your child's medical center or a private evaluation also be included in the evaluation process.
Once the evaluation is completed, a meeting is scheduled at the school for parents, the student (depending on age and local approach), and the evaluation team from the school district. At this IEP Meeting, the entire group will determine if the child is in need of educational assistance and qualifies for special services. If the child qualifies for services, an IEP document will be prepared that clearly states exactly what services the child needs and what the concrete goals are for these services.
An IEP typically includes the following components:
*Assessment of the child's current level of educational performance
*Impact of the illness on learning, thinking, energy/fatigue
*Medical precautions and special needs (if any). For example: extra bathroom breaks, drinking water during class, snacks, limited sun exposure, modified physical education, monitoring of central venous access device, etc.
Statement of goals to be achieved under the IEP:
*Statement of educational services that the child needs
*Date the educational services will begin
*Description of the extent to which the child will participate in regular education programs
*Justification for the type of educational placement the child will have
*List of individuals responsible for the implementation of the IEP
*Objective criteria and evaluation procedures
If parents agree with the conclusions and the IEP, they may sign the document and it becomes a binding document that is reviewed at the end of each school year or whenever the parents or school feel something has changed.
If parents disagree with the findings and recommendations of the IEP meeting, they do not have to sign the document and they may appeal the process (called a Due Process Review). The appeal is a formal process that is designed to help resolve the dispute and make sure the child will receive whatever educational services he or she requires and is entitled to.
An annual IEP meeting is held to evaluate the child's progress and determine what services are needed for the coming school year. As needs change, services may be increased, decreased or stopped altogether.
Anytime the child's need have changed, or the parent does not feel the services are meeting the child's needs, the parent may request that the IEP team meet to evaluate these concerns further. Parents can bring people to the meeting, such as a hospital staff member or an educational advocate. This may be done any time during the school year.
If a child was receiving special education assistance prior to their medical diagnosis of cancer for any reason, such as a learning disability, their existing IEP may be updated to now account for new educational needs due to the illness. An IEP may also be useful for children who have been out of regular school for an extended time and need extra educational support so they are caught up with the other students in the class.
Courtesy of CURESEARCH For Children's Cancer
If your child has been able to keep in touch through texting, phone calls, Skype or Facebook, then many classmates will have at least some idea of what your child has experienced since diagnosis. However, relying on children’s — and even teenager’s — understanding from such contacts alone is usually not sufficient. If possible, ask someone from your child’s oncology team (e.g., nurse, social worker, child life specialist) to talk with the school. At the least, a medical person should talk with the school nurse. It is best, however, if someone can talk with the nurse, involved administrators, key teachers and, most importantly, your child’s classmates. Some children enjoy participating in this process while others would rather have it occur before they return to school. The hospital professional can answer questions and help reduce any anxiety in staff and students about how to treat your child and dispel myths about what causes cancer and whether or not cancer is contagious. The speaker should also have students brainstorm how to welcome your child back into the classroom.
If no member of the team can provide this service, then we urge you to talk with your child’s classmates. Of course, it is important to get your child’s permission to do this, and even better if your child will join you in presenting to the class. However, you need to be respectful of your child’s anxieties and be prepared to meet with the class alone. Occasionally, a child, especially a younger teen, will say no to any communication with the class, at least initially. After getting back to school, however, the child’s anxiety about being perceived as “different” because of the cancer begins to lessen. Sometimes children are surprised to learn that their illness has actually given them celebrity status and their willingness to discuss experiences may increase.
Children in the classroom will be interested in the fact that your child had to take medication and they often want to know if hair that has fallen out will grow back. Typically, classmates do not know about catheters and what having one means in terms of activities. Young classmates’ major concerns are often about whether they can catch cancer (like a cold) from your child. Students of all ages need to know that getting cancer is no one’s fault; in fact, we really do not yet understand why some children or teens get cancer at all.
Courtesy of: CURESEARCH for Children's Cancer
Before your child returns to school, you will need to meet with school staff and administrators (the principal, your child’s teachers, the school nurse and others who will be working with your child) in order to explain any special needs or supervision your child may require while at school.
The school’s major concern will be what to do if your child has an “event,” a medical issue like a catheter becoming dislodged, nausea and vomiting, fainting or passing out. Whom do they call? What immediate measures should they be prepared to take? How likely is any specific event to occur at all? We suggest that parents provide school personnel with emergency contact information for their child’s oncology team in case any urgent medical needs arise. Schools should also be informed that they should immediately notify parents and/or a child’s healthcare team for the following issues:
*A fever of greater than 101F.
*Exposure to chickenpox.
*Active bleeding that includes nosebleeds, bruising, pink, red or brown urine, red or black “tarry” stools, or “coffee ground” vomit.
*Central line problems, which include any pus, swelling or redness around the site. If you notice leaking or a break in the external tubing, clamp the tubing between the leak and the child.
Staff will need to be made aware of the physical and psychological challenges that children with cancer can face, including hair loss, decreased energy, and increased risk for bruising and nosebleeds. Some temporary changes include weight gain or loss, mood swings, facial fullness, problems with coordination, difficulties with fine and gross motor control, muscle weakness and body marks resembling tattoos, which identify sites of radiation. The child may also have a central line which will be closed off and protected and should be covered by clothing when the child is dressed.
Many children undergoing cancer treatment become fatigued easily. Your child’s ability to participate in activities may be limited, although we recommend allowing your child to do as much as he or she feels able to do. The fatigue may be severe enough that naps during school time or attending for only half days is necessary. At times, the fatigue may also make it difficult for your child to complete assignments. You should ask teachers to consider allowing extra time on those occasions when your child is especially tired. However, teachers should still have as high expectations for your child as for any student in the classroom.
Some medications, such as steroids, can make children more energetic and challenging to handle. Teachers should be aware of your child’s medication schedule, particularly when drugs that might alter your child’s mood are being used. At the same time, you should let teachers know you expect your child to be respectful and follow the same rules as the other children in the classroom. Ask to be notified if your child is not able to meet these expectations.
While your child is receiving treatment, none of your children should be exposed to chicken pox or measles. If someone in any of your children’s class has either of these illnesses, a letter should be sent to parents reminding them to keep their sick children at home. This is standard practice in some school districts whether a child in the classroom has cancer or not, but it is wise to check to be sure that this will be done especially in your child’s case.
Just as teachers already do with their classes, children in the classroom should be reminded to wash their hands regularly and not to share food or water bottles with one another in order to minimize transmission of illnesses.
Discuss any particular issues related to taking medications, needing to eat more frequently or on a schedule, or the likelihood of needing increased bathroom breaks.
Ask teachers to include your child in all activities, regardless of whether or not your child misses a class or even a whole day of school. If there is a field trip coming up, ask the teacher to let you know far enough in advance that you can make plans to include your child. If the class works on a group project, ask the teacher to assign your child to a group, even if your child is not present when assignments are made. When calling attendance, ask the teacher to read your child’s name, even when the teacher knows your child will be absent. All of these actions by the teacher show that your child is part of the class despite frequent or prolonged absences.
You should also talk with the school about “accommodations,” or changes in certain rules that make it easier for your child to remain in school and do well. Common accommodations include:
*Attending half days
*Having extra time to move from room to room when classes change
*Being able to go to the nurse’s office or bathroom without having to ask permission each time
*Being able to use the elevator
*Being excused from physical education or recess
*Permission to wear a hat or scarf if your child has lost hair
*Providing an extra set of textbooks that can remain at home so they do not need to be carried back and forth and are available if your child cannot attend school
In most schools, the principal or other administrators can approve these simple changes in routine. Occasionally, schools will request a physician’s recommendation. Less common accommodations include allowing extra time to take a test, taking a test in a separate room to minimize distraction, or having someone read the test to your child. These kinds of changes often require that the school develop a 504 Plan with you and your child’s teachers.