When Your Child’s Treatment Ends: A Guide for Families
Adjusting to normal life after treatment
Today, most childhood cancers can be cured. This means more and more families have gone through the changes that come with a cancer diagnosis, and have learned to readjust to normal life after treatment is over. There are many challenges, fears, and stresses to deal with during treatment. You may not know it yet, but when your child is done with treatment, you’ll still have strong emotions to deal with. Your family, as well as your circle of friends, will probably go through more changes as you learn to cope with life after cancer. But there are things you can do to work through these changes and help your child live as normal a life as possible. The most important thing you can do at this time is learn as much as you can to help your child with this new phase of life.
In this booklet we will talk about some of the challenges, fears, and stresses family members may face as they make the transition from active treatment to being off treatment. We hope this information will give you some comfort and reassurance that these feelings and this time of change can be managed in a positive way.
Why am I so worried?
As your child gets close to the end of treatment, you may have many mixed feelings. Over the past few months or years, you have dealt with the shock of diagnosis, the reality of treatment, and the uncertainty of your child’s future. You have also changed your life to fit in clinic visits, treatment plans, and trips to the hospital. You’ve probably formed relationships with the health care professionals who have cared for your child. Things that may have been very strange and disruptive in the beginning became everyday happenings. So now, while your loved ones are celebrating the end of this long ordeal, you may be finding it hard to express the way you’re feeling. Others see the end of treatment as a victory – so why are you feeling so anxious, scared, and unsure?
Active treatment may seem like protection against the cancer. How can you know it’s safe to stop? Can you be sure the cancer is all gone? You may be afraid the cancer will come back if your child stops treatment. Telling your health care team about your concerns is the first step to understanding and getting control over your feelings. The team can give you the reassurance you need. They are there to help you and your family get through this time, too. Even though your child is no longer getting active treatment, he still will be closely watched and regular follow-up visits and testing will be done.
Parents who had become comfortable with life during treatment may find that routine follow-up visits may lead to even higher levels of anxiety. Social support is very important for your family now. Talking to other parents who already have been through this can be comforting. As time passes, most parents find that their fear becomes less intense, and although it never completely goes away, it becomes easier to live with.
While parents struggle with the worries about the cancer coming back, the child may look at this time in a different way. A younger child is not usually troubled with these thoughts. But teens may worry about the possibility of the cancer coming back and the choices they may have to face. Although all children are glad to move past the pain and discomfort that may be part of cancer treatment, many will miss their health care team members and the bonds they’ve formed with people who helped them through this time.
Where did everybody go?
During regular hospital or clinic visits, the child and family get to see staff and other families. The relationships they develop become a community of support, where people understand, questions are answered, and no concern is too small. With fewer visits to the treatment center, there is less contact with this circle of friends and caretakers. Still, these supportive relationships are important and can be kept up through phone calls, support groups, and social get-togethers. The hospital staff understands this separation might cause anxiety and can help you and your child through this time.
Issues that come up when treatment ends
It is normal to feel anxious about your child’s treatment ending. Your child may feel the same way. How that anxiety is expressed depends on your child’s age and stage of development. Keep in mind that any child, no matter what age, may regress or act much younger than his age when feeling upset.
Babies have little understanding of what is happening while undergoing treatment for cancer. Parents and staff members cannot explain what is being done and why the baby must go through painful procedures or be separated from his parents. Because of the cancer and/or cancer treatment, your baby’s mental, emotional, and social development may not progress as it normally would if there were no cancer.
After completing treatment, your baby will probably begin to catch up developmentally. One of a baby’s main tasks in growing up is to learn to separate from his parents. You may find that he can do this at home or in other comfortable places, but a clinic visit may trigger the need to cling to and stay close to you. Help your baby through these times. Try cuddling him in your lap during physical exams; be reassuring when staff members need to do an exam or procedure.
As with babies, young toddlers do not understand what cancer is and why they must have painful procedures. These things can slow down your toddler as he works to become more independent. Many toddlers regress during treatment. They may refuse to continue toilet training, have a hard time separating from you, and temper tantrums may increase.
It may have been hard to be consistent in guiding and disciplining your child during treatment, but try to be consistent now. It’s never too late!
Your toddler may enjoy fantasy play, acting out painful procedures, or playing doctor with a toy medical kit. This kind of play helps children work through what they have undergone during their treatment and may help them prepare for future visits. Return visits to the clinic may not always go smoothly at first. But over time, as the number of painful procedures lessens, your toddler may actually look forward to visiting “old friends” at the clinic.
Now is a good time to allow your toddler to be as independent as possible and support his need to explore the world. Remember to make things safe by using things like childproof cabinet locks and electrical outlet covers.
Preschoolers are busy figuring out who they are. And cancer and its treatment completely change their world. Preschoolers may throw toys, bite parents and caregivers, have temper tantrums, and regress to toddlerhood, seeking safety after painful procedures. They may even think of their treatment as a punishment for being “bad.”
The end of treatment takes away a lot of the physical trauma your preschooler went through. As with toddlers, you should take a consistent approach with limit-setting during this time of change. Maybe extra toys or other presents became the norm during treatment. If this kind of attention goes away after treatment, your preschooler may feel he is being punished in a different way. It will take time for him to adjust to being a normal kid. Encourage play and art activities as ways for him to express some of his feelings after treatment.
Your preschooler may ask questions about treatment and why it has stopped. Be prepared to answer those questions as honestly as you can in a way he can understand. Follow-up visits to the clinic may bring about tears when blood is being taken or during other painful procedures, but chances are your preschooler will enjoy seeing clinic friends again!
Treatment for cancer will change your school-age child’s body image. At a time when children are very aware of their bodies and how they fit in with friends, hair loss, weight gain, or other changes in the way they look are likely to make them feel insecure. Peer relationships are becoming more and more important at this age. And maybe old friends stopped playing with your child because they were scared by how he looked or were afraid of “catching” cancer.
Ending treatment often means getting back to normal for the school-age child. With time, they will look like their friends again and re-establish relationships. Activities may no longer be off-limits.
If your child has been out of school for a long time, you may want to talk to your health care team about a school re-entry program. Teachers and students can benefit from learning what cancer is, how it is treated, and why your child may have looked different during treatment.
School-age children may ask questions about why treatment is ending and what will happen in the future. Be honest and answer questions as completely as you can. Encourage them to talk to the health care team, too.
If strong friendships were made with team members during treatment, expect big reunions during follow-up visits. Your child may even look forward to returning to the clinic, asking when the next appointment will be. And try to be patient – he may be slow to leave once he gets there.
When it comes to cancer, teens are unique. While young people are facing cancer and its aftermath, they’re also dealing with all the usual issues of adolescence. Teenagers faced with a cancer diagnosis may withdraw or even become depressed. Realizing they have cancer and need to go through treatment “rocks their world.” Anger and rebellion are normal adolescent behaviors, and there may be more of these behaviors in the teen with cancer. On the other hand, he may deny the seriousness of his illness by taking risks, refusing treatment, and bargaining about hospital stays.
When coming off treatment, many teens may want to put the entire experience behind them and not look back. They may downplay the importance of regular follow-up visits and try to delay or cancel them. Facing the future without looking back may be their main goal.
Your teen needs your help as he works toward his future, but he also needs to be reminded that follow-up visits are important to his long-term health. As one teen said, “I’ve been coming here for 5 years now. Isn’t that long enough?” Help your teen understand that ending treatment does not end his need for health care. Ongoing visits and follow-up tests will be needed. It may help to make it clear up-front that these visits and tests are not optional. His health care team can support you in this.
Adolescents face many tough issues, such as trying to get a job and developing a career, making college choices, or getting health insurance. All of these issues may be affected by their past treatment for cancer. And although teens may want to put their cancer in the past, society may not allow them to forget it.
If your teen plans to go to college, follow-up visits may need to be set up through a pediatric oncologist near the college. Visits can then be made to the “home center” on school breaks. As with school-age children, strong ties with staff members and other survivors may remain long after treatment is completed, and routine visits may turn into happy reunions.
An 18-year-old patient described the feeling of stopping treatment like this: “To me it was like being released from prison. I had the freedom to do what I wanted, when I wanted. No more answering to doctors, although I did have to report back to my ‘parole officer’ every couple of months.”
All childhood cancer survivors are changed by cancer.
No matter what their age, all children who have survived cancer will face physical, emotional, and social delays. But because of their illness, kids who have dealt with cancer tend to value life and recognize that the challenges they’ve faced and survived have made them strong. Children often come away from a cancer experience with an appreciation of and sensitivity to life that is not shared by their peers. They often express feelings of pride and achievement at having faced this crisis and handled it with success.
After bone marrow transplant
For some children, bone marrow transplant is the best treatment option. This often means intense chemotherapy with very serious side effects. It also can mean isolation – sometimes at a treatment center miles from home. During the transplant phase, the child and family get a lot of supportive care. The child often goes home with pages of instructions after being in the hospital for many weeks or even months. The instructions may cover things like activity limits, how long the child needs to wear a mask, and guidelines about staying away from others. Each transplant center has its own post-transplant protocol.
A major issue after bone marrow transplant is body image changes. Bone marrow transplant can cause many changes in the way a child or teen looks. These changes may include hair loss, nail changes, skin changes, and weight loss or gain. The patient often feels weak, and there may be limits on what he can do as a result of the time spent in bed after the transplant.
Readjustment to home life, other family members, and new expectations may take time after the months spent away at a transplant center. Although the child is no longer on active treatment, he may experience anger and isolation both during and after the transplant. These feelings may become stronger when he goes home to even more isolation and loneliness. Going back to school may be delayed up to a year, leaving the child with a lot of free time. During this time, you may want to contact your child’s school to request cards, letters, videotapes of classmates, or phone calls. Neighborhood children may want to offer this kind of support to your child, too. Cell phones and Internet access may also help him keep in touch with friends while he recovers at home.
Insurance and employment challenges
The Americans with Disabilities Act (ADA) protects teens with cancer from discrimination when applying for a job. The main enforcement agency for the ADA is the Equal Employment Opportunity Commission (EEOC). There are 3 ways for a person with a disability to file a complaint about job discrimination:
- File a complaint with the local office of the EEOC. A charge of discrimination must be filed within 180 days of the discrimination. There is no charge for the services of this agency. The number is listed in the phone book under “US Government.”
- File a private lawsuit through a lawyer. This may cost a lot of money, depending on the lawyer. To find a lawyer with a special interest in employment and disabilities, contact any local organization of persons with disabilities or your local bar association.
- Do both of the above.
The ADA does not affect pre-existing condition clauses that may be in health insurance policies. But other laws may protect employees with pre-existing conditions. The ADA does require that an employer provide employees with disabilities equal access to whatever health insurance coverage is offered to other employees.
Going back to the pediatrician
It is our hope that children with cancer maintain a relationship with their regular pediatrician during cancer treatment. These children still get the usual childhood illnesses, which in most cases would be treated by a pediatrician. Keeping your pediatrician informed of what is going on during treatment will help him help your family and your child as you make the transition back to normal life after treatment.
If there are other children in the family, a visit to the pediatrician not only means visits to the doctor when they are sick, but check-ups when they are well, too. Some children enjoy these visits. The visits also remind children who had cancer that they are “regular kids” and give them a common connection with their brothers and sisters.
Your pediatrician probably has been getting information about your child during his illness. Communication between the pediatric oncologist and pediatrician continues after treatment is completed.
Issues like chicken pox, routine immunizations, lab work, and late effects of treatment are important concerns for your child’s doctors to discuss.
Getting back to normal
During a child’s treatment, the goal is to keep life as normal as possible, but this is often hard to do. The effects of chemo, trips to the hospital or clinic, and disruptions of family routines can make a family forget what “normal” used to be.
So how do you, your child, and your family get back to a normal life? The staff at your treatment center can be a big help in transitioning from active treatment to being done with treatment. Aware that treatment is often seen as a safety net, staff can reassure parents and patients that their feelings of insecurity, fear, and uncertainty are understandable and normal. Many people go through these emotions when active treatment ends.
While friends and family are congratulating you on your freedom from chemo drugs and trips to the hospital, you and your child may be feeling more and more insecure and lost. You may miss the routine contact with the health care team that you’ve grown used to. Talk to your health care team about your concerns. Learn what to expect and what you can do about it. Get answers to your questions and complete information. Some concerns that you may want to ask about are:
- Your child’s follow-up plan
- Long-term effects of treatment
- Emotional effects on your child, siblings, and parents
- Other people’s views of your child as a former cancer patient and what to do about it
- School and employment opportunities for your child in the future
- Health and life insurance issues
- Siblings’ needs
- Your child’s ability to go back to normal family life
During treatment it is normal for the parents’ attention to be focused on the child with cancer. Now it may be time to refocus. Brothers and sisters of the cancer patient may need help to cope with their feelings, too. The goal is to bring your child back into the thick of family life, as well as into school and the community. He should be a part of family functions, be assigned chores, be given a reasonable amount of attention, and be encouraged to experience life to the fullest.
The end of treatment may be a difficult time for your child. He will need opportunities to talk about how hard it is to be out of the spotlight and back in the real world. This can be a time of “withdrawal” for him – he will probably not get as much attention and special consideration as he did when he was sick. He will need time to adjust emotionally and physically. If your child is having a hard time, you may want to talk to friends and teachers about what he is going through.
Sometimes, a special counselor can help your child express feelings that he might otherwise not share with you because he wants to protect you. Get a referral to a counselor from your doctor or a trusted friend. Kids also love being with other kids who have been through the same kind of things. Camps and support groups allow kids with similar health backgrounds to socialize and talk about their experiences. This can help them put the end of treatment into perspective and be ready to go back to the real world.
While the end of treatment may not be a stress-free time, your health care team can help you and your family get through it. The good news is that most children treated for cancer, and children who are long-term survivors of cancer, have few serious psychological problems. And children who have a lot of family support are less likely to have problems adjusting – this is where you can make a difference.
Last Revised: 02/01/2011