Surviving a blood and marrow transplant (BMT) can be life-changing for many children. Many of the late-term social and emotional effects on your child depend on your child’s condition before the transplant. For example, many children may have received treatment for a life-threatening illness before the transplant, such as leukemia. Some children may have relapsed or received years of treatment before undergoing a BMT. Not surprisingly, these children may need more social and emotional support in the long run.
Nonetheless, surviving a BMT is an extraordinary experience for both your child and the rest of the family.
Although you and your child may not completely forget the experience, it can become a small part of their life as they move forward.
Many childhood survivors feel "different" from their peers. Your child may feel like they have reached a maturity greater than others their age. As a transplant survivor, they may have a better sense of the purpose of life. They may find more meaning in day-to-day activities and interactions, and appreciate the moment more. This can be the way to forming new, positive values, and priorities. For example, survivors may adopt a healthier lifestyle or show more appreciation for family and friends.
Age makes a difference
Depending on your child’s age at diagnosis, current age, gender, and the life transitions they experience as a survivor, they may respond in different ways at different times throughout their life after surviving a BMT.
Young children
Because younger children may understand the implications of their disease to a lesser extent than adolescents, they tend to adjust better. However, they can still become socially withdrawn. When children miss time at school because they are in hospital, their existing relationships with friends or ability to make new friends may be compromised. The same holds true if they cannot participate in similar activities as their friends. Classmates may also feel uncomfortable around peers with medical conditions, and may treat them differently if they do not understand their condition.
Adolescents
Adolescents can understand the implications of their disease and may experience a variety of thoughts and emotions. For example, they may desire to move beyond the cancer experience, or may become depressed or anxious after treatment. Adolescents are also learning many skills that are important for their development. One such important skill is learning to become more independent. Being a survivor of paediatric cancer can influence how prepared and how well equipped teens are to learn these skills. For example, your child will have to become more dependent on you or other caregivers during treatment. Your child's experience may make it difficult for them to become more independent after finishing treatment.
Dealing with uncertainty
Despite having survived a BMT, many childhood survivors do not feel they are completely "free" from their illness. For both survivors and families, the fear of relapse is common. They may be so worried about the future that they are unable to enjoy the present. Your child’s uneasiness may be less apparent than other physical symptoms. It is important to talk to your doctor about your child's distress during follow-up appointments. For many transplant survivors, this fear tends to subside as time goes by.
Feelings of stress and anxiety
Some children feel anxious and stressed after surviving a transplant. Dealing with medical procedures, hospitalizations, and separation from family and friends can be difficult. Both your family and your child may experience upsetting thoughts and feelings.
If you or your child are having trouble coping with feelings of stress or anxiety, talk to any member of your health care team so you can connect with a mental health professional such as a psychologist or social worker. They can help you or your child learn to manage these complicated feelings.
What can you do to help?
Watch your own reaction
A lot of research suggests that the way you respond to your child’s illness can influence how your child responds. Adopt a positive attitude and try not to focus on the fear of the cancer returning. This will allow both you and your child to focus on the present and move forward.
Promote independence and social interaction
Encourage your child to spend time with friends, exploring interests or hobbies. Support them in developing interests and joining clubs to meet others. Teach your child how to discuss any late effects they are experiencing with others, if they want peers, educators, or teammates to know about them. What is important is that your child accepts that their transplant is part of their identity -- not the defining feature.
Encourage a strong sense of self and place in the world
A sense of self refers to those character traits (hardworking, sensitive), occupations (teacher, nurse), and social relationships (sister, brother) we consider most important about ourselves. A childhood transplant survivor with a strong self-identity sees their experience with a positive perspective. They think thoughts like "I am a fighter" and "I can cope." They can incorporate this sense of mastery or strength into a strong sense of identity.
Set goals for the future
Being committed to reaching productive life goals your child sets for themselves gives them something to work towards.
Making use of social support
Building a strong network of social relationships, consisting of family and peers, is a key source of support for many childhood transplant survivors. This support network will give your child a chance to share common experiences and resources.