CureSearch for Children's Cancer funds and supportstargeted and innovative children's cancer research with measurableresults, and is the authoritative source of information and resourcesfor all those affected by children's cancer.
After a few weeks off treatment, most children have normal blood counts which reduced the potential complications from low platelets, low red blood cells, and low white counts. Immune system recovery is progressing, but may not yet be back to normal.
During active treatment, patients and families regularly see health care professionals and other parents at the hospital. The healthcare team offers reassurance that your child is doing well, and they are on hand to answer questions or discuss concerns. Other parents can be a comforting source of information. Yet, when treatment is done, you have less contact with these sources of support.
Parents sometimes find that even people who seemed to understand what they were going through during treatment are not available as they were. Teens may feel that many of their friends have abandoned them. It can be particularly hard at this time to find people who realize the pressures and fears that may accompany the post-treatment phase.
With a little explanation, friends and relatives can come to better understand your feelings. Some parents create a new support system with online parent groups, or keep in touch with other hospital families via e-mail.
Check with your child’s healthcare provider to determine a plan for management of fevers and minor illnesses. Once your child has a normal blood count and the central line or port has been removed, the risk of infection diminishes. Your child’s cancer team will guide you to whom you should contact for medical care and if your child needs to go to the hospital.
Yes, if your child has been taking BactrimTM (Septra®), this medicine is usually continued 2 to 3 days per week for several months after treatment ends. Your health care team may stop this medicine after your child has been off treatment for 3 to 6 months.
Once your child’s central line or port has been removed and the incision has healed, there are usually no restrictions on swimming. Exercise is important for health, and unless there are any specific reasons why your child cannot be physically active, daily exercise should be encouraged. Check with your healthcare team to make sure there are no restrictions on activities. Remember that it often takes time for stamina and strength to return to full levels.
Hair loss, also known as alopecia, is a side effect of some chemotherapy medicines and/or radiation that your child received. Hair will usually grow back when cancer treatment has ended. The hair may be a slightly different color or texture (curlier, thicker, or thinner) than before cancer treatment. In some cases, when a child receives high doses of radiation, as is used for brain tumor therapy, hair may not re-grow within the radiation site. Please talk with your healthcare team about any questions or concerns you may have.
Coming back to the clinic for checkups can be stressful. Some parents say that they feel increasingly anxious as the day of the appointment gets closer, and then feel much more relaxed afterwards and are able to forget about the disease for a while.
Some parents do not want to come back to the hospital because it will be upsetting to the child. However, it is important that your child continues to be monitored. You can help relieve your child’s anxiety by remaining calm and relaxed, and finding ways to enjoy your time together. These visits are important in helping your child transition to being a long-term survivor and developing skills to take care of him or herself in wellness.
Returning to the clinic can bring other stresses as well. It can be hard to see children who are still receiving treatment. This may bring back difficult memories of your own child’s treatment. Returning to the clinic can also mean that parents hear news of children that they knew during treatment. If this news is bad, it is natural that parents will be sad for that child and family. Bad news can also cause some parents to become very fearful for their own child. It is always important to remember that even when children have the same diagnosis, each child’s illness is unique.
Parents often tell us that the end of treatment feels like losing the child’s safety net. During treatment families feel that everything possible is being done to beat the disease. Parents sometimes feel that they would prefer their child remain on low dose chemotherapy for life, if it could guarantee that the disease would not return. It is important to speak with your child’s oncology team to understand why treatment is ending.
If you are struggling with fears about relapse, it can be helpful to remember that:
Your child’s nutrition and diet may have been affected by cancer treatment. If your child was treated with steroid medicines, he or she may have developed a craving for salty, unhealthy foods and gained excess weight. Children who received treatment that caused mouth sores or nausea may have experienced weight loss and developed food aversions (avoiding certain foods). This is especially true for infants and young toddlers who are just learning to eat different tastes and textures.
A gradual return to a healthy, normal diet should be the goal. After treatment is the time to stop high calorie snacking and high sodium foods that may have been eaten during steroid treatment. Your child should be encouraged to eat a variety of foods from all food groups each day. Resist the urge to offer high calorie, empty nutrition foods to children who are underweight. Your clinical dietician is able to help with meal suggestions and menu planning. A healthy diet, including a healthy balance of protein, carbohydrates, fats, vitamins, and minerals is an important part of helping your child’s body to grow, heal, and work well. Of course, this is the best way for the whole family to eat!
Vitamin supplements are not a replacement for good eating habits. They may be used for children who are unable to tolerate certain food groups, like milk, or who have low levels of nutrients, such as vitamin D. Some healthcare providers recommend a daily multivitamin. Check with your healthcare provider before beginning any vitamin use. Healthy eating and taking supplements when medically needed helps ensure children and adolescents have a wide range of the nutrients and vitamins needed to remain healthy and function properly.
During the first six months after treatment ends, it is very important that you talk with your healthcare provider before giving your child:
The First Month off TreatmentSix to Twelve Months off TreatmentOne Year off Treatment and BeyondYoung Adults Transitioning to Adult-Focused CareLong-Term Follow-Up Care