Pediatric Cancer Services

For parents

In addition to the child, cancer affects parents, siblings, grandparents and an entire circle of friends. This section answers common questions family and friends may have and shares the experiences of other families whose children have been treated at Yale-New Haven Children's Hospital.

	Questions parents frequently ask
	Questions to ask the doctor
	One mom's story
	Meet Courtney, a cancer survivor

Questions parents frequently ask

Cancer
1. What causes cancer? Should I have caught this sooner?
In recent years, medicine has made tremendous strides in treating and understanding cancer and its causes, but much more remains to be learned in the coming years. We do know that in adults, cancers are most likely caused by genetic factors and environmental or lifestyle factors, such as smoking and diet. However, this is not the case with childhood cancer, where the causes are largely unknown. A few conditions, such as Down syndrome, other specific chromosomal and genetic abnormalities and therapeutic doses of radiation, explain only a small percentage of cases.

Parents sometimes feel tremendous guilt because they did not notice symptoms sooner and have them diagnosed. Please be reassured that cancer in children is very rare and should not be the first thing parents—or pediatricians—usually regard as the cause of problems. Indeed, many pediatricians will practice for years without ever diagnosing a single case of pediatric cancer. We often hear about the growing percentage of adult cancers now diagnosed in their early stages. This is largely due to increased awareness and available screening tests. Because cancer in children is so rare, screening is not practical. Compounding the problem is the fact that the symptoms of some cancers resemble those caused by common childhood illnesses. Some children have no symptoms at all. Therefore, many children are not diagnosed in the earliest stages.

Keep in mind that it's very important to bring infants, toddlers and children for well-child visits as recommended by your pediatrician or health care provider.

2. Is cancer contagious? Are my other children at risk?

Childhood cancers are not contagious. That's an important point to share with other children in the family and other children and families in your child's life, whether at school or in the neighborhood. Whether other children are at risk depends on the type of cancer. Genetics are believed to play a role in certain childhood cancers, such as a small percentage of Wilms' tumors. Discuss with your pediatric oncologist the type of cancer your child has and if other children in your family should be screened.

3. How do I tell my child she or he has cancer? Should I use the word “cancer?”

We believe children have a right to know what is going on and should be told in a way that is, of course, appropriate to their age. This is not to say this will be an easy thing for parents to do.

Please know that the doctors, nurses, social workers and other staff at Yale-New Haven can help give you the right words to use, or be the ones to tell your child, with you at your child's side.

Avoiding use of the word cancer can cause even more anxiety because the child will certainly hear the word at some point, whether while in the hospital or at home or at school. It's much better for the child to hear the truth from people he or she trusts, rather than overhear the word cancer and not be offered any explanation.

It may be especially hard for parents to discuss cancer if a grandparent or other relative or friend has died of the disease. But this makes it all the more important to point out to children that cancer in children is a very different disease than it is in adults and that it can often be treated successfully.

Children need to believe they will get well. They need to be told the doctors believe they will be able to cure the cancer and that the doctors will try to lessen any side effects the medication might cause. Children need to hear that the doctors expect the child to eventually be able to return to school, play soccer, go to dance class—do all the things they were doing before the diagnosis.

Children sometimes feel guilty or at fault because they sense their parents are upset. It is important to reassure the child that he or she has not done anything wrong. A lot depends on the attitude of parents. If parents are not optimistic, the child will adopt that attitude. However, if parents are hopeful, the child will share that hope.

Hospital and treatment

4. Is my child being treated at the right place?

While most adult cancer patients can be treated in their own community, children with cancer are best treated by the kind of specialized pediatric cancer teams found at major medical centers, such as Yale-New Haven Children's Hospital. Our pediatric cancer team has the expertise to correctly diagnose and manage childhood cancers. Through our affiliation with the Yale Cancer Center, we have access to the latest treatment methods and medications. In addition, we offer extensive support services for patients and families.

5. What is the hospital like? Can I stay with my child?

Yale-New Haven Children's Hospital was built with the special needs of children and families in mind. Children who stay in the hospital as well as those who come for outpatient care have access to a wide range of specialized services, such as child life specialists, specially trained pediatric staff, playrooms, arts and crafts, televisions, videos and computers. Parents are welcome to visit at any time and one parent can stay overnight. Showers are available for parents and there are family rooms with kitchens and some washing machines available for families to use. In addition, counseling, support groups and help with tutoring are available. We have tried to anticipate many of your needs, but if a special need arises, please don't hesitate to ask.

6. How and what do I tell my other children?

Again, honesty and hope are very important when discussing your child's condition with family members and friends.

For very young children, simple but clear explanations are best. Say that Johnny has sick blood and give the name of the disease. He will need special medication to get better. The medication may make him sick and make his hair fall out, but the doctors expect him to get better.

For those five and older, use the words leukemia and cancer and chemotherapy in your explanations because they will hear those words being used in your own house and at the hospital. Be honest and be sure to explain what the words mean. We're Special Too! is a program designed to meet the needs of siblings of children with chronic or terminal illness or special healthcare needs.

7. What is a research trial? Should my child participate?

Deciding whether a child should participate in a clinical or research trial depends on many factors and a decision should be made only after parents understand all that is involved. These factors can include the type of cancer the child has, the stage, whether this is the first time the cancer has been treated, the doctor's recommendations, the family's ability to adhere to the requirements of participating and finally the parent's and child's wishes. Please be sure to discuss participation in clinical trials (also called a protocol) thoroughly with your child's doctor before agreeing to participate. Feel free to ask questions as treatment progresses.

8. How do we cope with hair loss?

One of the most dreaded side effects of cancer treatment is hair loss. It's important to know there are options available. Around the age of five, children begin to have opinions about hair loss. But for older children, dealing with hair loss can be as difficult as dealing with the cancer itself.

For young boys, especially after age 8, it's a good idea to offer options, such as wearing a baseball cap. To welcome one boy back to school, one school adopted cap day every Friday, where all the kids in school were allowed to wear baseball caps.

Girls under 12 generally won't wear a wig. They prefer bandanas or scarves. Girls 12 and older may prefer a wig. It's best to shop for the wig in person instead of ordering one through a magazine. The staff at Yale-New Haven Children's Hospital can help you locate a wig shop that offers a wide selection. Do this before the child's hair falls out so you can best match the color and texture of the hair. Have the child try on the wig and make sure it feels comfortable.

9. When should we call the doctor? Are there warning signs we should watch for?

Children who are receiving cancer treatments will be monitored very closely for any side effects of treatment. In addition, children may be very susceptible to catching colds, viruses and other illnesses. Ask your doctor about what to expect. When to call the doctor

10. How can I keep track of all the tests and procedures?

We recommend parents keep a journal during the time their child is being treated. In the journal, record treatments, tests, blood counts, reactions to medication and other medical information. Some parents do this while waiting during tests or procedures at the hospital. By writing in the journal every day, it soon becomes a habit. (A formal medical record of all treatments, tests and procedures is kept at the hospital). Considering all that the family is going through, it becomes impossible to remember every thing you'd like to remember, so the journal becomes an easy reference tool for the family.

Equally as important, the journal can be used as a place to express feelings, hopes, fears, questions to ask the doctor—whatever purpose you need it to serve.

As always, feel free to ask us questions about a procedure, test or anything on your mind. We will be happy to provide an explanation.

11. My child's treatments are going to end soon and I'm feeling very anxious about this. Is this normal?

Yes, this is a very normal reaction. When a child is newly diagnosed, parents dread the long weeks or months of treatment ahead. However, as time passes, coming to the hospital for treatment becomes the routine. Parents take comfort in knowing their child is still receiving the cancer-fighting medication and is being monitored closely. During this time, children and parents have easy access to doctors and nurses so their questions and concerns can be addressed. Other parents are nearby for support.

When treatment ends, however, parents may feel cut loose from this support. It's important to discuss your concerns with your pediatric oncologist or social worker. We will still monitor your child at regular intervals based on what our past experience has shown to be appropriate in your child's situation. Between those visits, if you have questions or concerns, don't sit and worry. Instead, call us and we will be happy to answer your questions. In addition, consider coming to one of the many support groups we offer or ask the social worker for help finding one closer to home. Support services

Lodging, insurance and financial assistance

12. What does insurance cover?

There are people at the hospital who can assist you with questions about insurance coverage related to your hospital stay. Care coordinators can help direct you to where you can find more information. They can also assist with questions related to post-discharge needs.

13. Is financial assistance available?

Yes. Because assistance depends on many factors, it's best to discuss this issue with the pediatric social worker.

14. We live two hours away. Where can we stay when we come for treatment?

Families who do not live nearby may find a number of helpful links under Patient & Visitor Services. Many families enjoy the comfort and convenience of staying at the Ronald McDonald House, which is located only blocks from Yale-New Haven Children's Hospital. Rooms are available for a small fee and cooking facilities are provided. In addition, many families find support in talking with and getting to know others who are living through the same experiences. For information about New Haven's Ronald McDonald House, call (203) 777-5683.

15. Are there organizations that grant wishes for children with cancer?

Yes, there are several organizations and they have granted wishes both small and large. Some children wish for trips to Disney World while others would like a chance to go to their senior prom or a baseball game. Support depends on your child's diagnosis, age, town or state of residency, as well other factors. Please talk with either the pediatric oncology social worker or child life specialist for a complete list of organizations available to help.

Schools and camps

16. When can my child return to school? What do we tell the teachers? How can we prepare the classmates?

When your child returns to school depends on many things, including the type of cancer, the type of treatment and how well your child progresses with treatment. The expectation is that your child should return to school whenever possible.

The pediatric social worker and/or physician's assistant is available to call the school at the time of diagnosis as well as when a child is ready to return to the classroom. When returning to school, some children find it makes sense to go back for just a few hours at first. If a child requires a home tutor, hospital staff will provide families with a letter stating this need. The letter should be presented to the child's school system, which is then responsible for providing a tutor.

Each school is unique in its own resources and experiences. Some schools are very comfortable because they have already had children with cancer attend classes. The pediatric social worker and/or physician assistant are available to visit the school, meet with the principal and/or teachers to answer questions and address concerns.

Returning to school is a milestone for a child with cancer as important as returning to work is for adults. School is the place where they learn and where they see their friends. Maintaining contact with peers is very important for children during this uncertain time.

17. The doctor suggested my child attend a special camp for children with cancer this summer. Is this a good idea?

For many children with cancer, it's a tremendous idea. Going to camp allows children to participate in the normal fun of a camp setting. Beyond that, going to such a camp allows children to make friends with other children who are going through the same things they are, sharing successes and concerns in a way other children cannot understand. It allows them to relax and be themselves, even joke about their treatments and gain new insights into what it means to be a child who has cancer. Camps

Coping with cancer as a family

18. My spouse seems to be coping differently than I am. Is this normal?

Yes. Everyone copes differently. There is no easy way and no right way to get through this difficult time. Many times we find that women cope differently than men. They are often the ones who stay the most nights at the hospital and are the most involved in their child's day-to-day care in the hospital and at home. They often have a keen understanding of all that is going on. At the same time, because they are more involved, they may be more emotional. Dads may be continuing to work full-time and may be more able to take a step back and offer a different perspective.

Many times, one parent has stopped working to stay at the hospital with the child. Maintaining contact with family and friends is very important. Don't try and think you have to cope with this all alone. Parents who isolate themselves are more likely to become depressed.

No matter how much parents try and keep things normal, the world for siblings of a child with cancer changes dramatically. They may have to curtail or stop activities they enjoy. Parents are making frequent trips to the hospital. Siblings often worry about their brother or sister who is ill, but may not be able to adequately express their concerns or fully understand what the cancer or treatment is all about.

Do your best to keep the lives of siblings as normal as possible. It's better to have a relative stay with siblings in their own house rather than shuffle them from house to house. Accept help from friends and relatives who offer to drive siblings to sports practices or other social events.

For more information on helping siblings cope, read about We're Special Too!. It's a program designed to meet the needs of siblings of children with chronic or termial illness or special healthcare needs.

Recurrence and hospice care

20. What if treatment does not work? What do we say if the cancer comes back?
Success in treating cancer in children is influenced by the type of cancer present and the extent to which the cancer has spread at the time of diagnosis, as well as treatments available.

Though tremendous progress has been made in treating childhood cancer, it's true that not every child will be cured. Nevertheless, we begin by making every effort to treat the cancer. Stem cell transplants are increasingly used as an option for difficult cases or for cancers that have relapsed or come back.

But at some point, the cancer may not respond to treatment. Throughout your child's care, you will be fully informed of all treatment options and test results. Your decisions can be made carefully and with the involvement of medical experts, family and your child. The medical staff is available to help explain what is happening with your child. Discussion will often include mention of the quality of life.

21. Is home care available?

Yes, home care programs for children with cancer are available in many areas. The pediatric oncology social worker can describe the programs, what they offer and other important details.

Questions to ask your child's doctor

	What kind of cancer does my child have?
	Is the histology or type of cancer favorable or unfavorable?
	Has my child's tumor spread to other parts of the body?
	What is the stage of my child's cancer and what does that mean?
	What treatment options are available?
	What do you recommend and why?
	Based on what you've learned about my child's cancer, what is the outlook for a cure?
	What risks or side effects are there to the treatments you suggest?
	What are the chances of my child's cancer recurring with these treatment plans?
	What should we do to be ready for treatment?
	What clinical trials are suitable options for my child?

Last revised: May 10, 2007 (dh)

Home page URL: http://www.ynhh.org

All information is intended for your general knowledge and is not a substitute for medical advice or treatment for specific medical conditions. You should seek prompt medical care for any specific health issues and consult your physician before starting a new fitness regimen.