Leukemia is the most common cancer in children and accounts for approximately one-third of all pediatric cancers. Leukemias are blood cancers that start in cells that would normally develop into different types of blood cells.
Timely diagnosis and advanced treatment modalities have significantly improved the survival rates in children with leukemia. However, the survivors need to be closely monitored for recurrence and long-term outcomes.
Parenting a child with leukemia
When a child is diagnosed with leukemia, it not only affects the child, but also the family. It can cause a jumble of emotions including shock, confusion, denial, fear, anxiety, anger, grief and sadness.
Numerous hospital visits, multiple treatment schedules and uncertainty about the child’s health can make the parents anxious and emotionally drained.
However, the parents must stay strong during the diagnosis and treatment. Usually, the child may become anxious seeing her parents worrying about her, which can eventually have an indirect impact on her treatment outcomes.
Therefore, it is important for the parents to stay optimistic and hopeful and motivate their child to be strong.
The parents can help their child overcome this difficult time by gaining enough knowledge about the disease, maintaining a positive attitude during the treatment, setting a daily routine, taking care of their mental and physical health.
Deal with the diagnosis of your child
A parent is never prepared to hear that their child is diagnosed with cancer. Your initial thoughts might be “How this could have happened to my child?” and “Why does my child have to suffer this?”
Each parent will express their emotions differently. However, parents need to learn to handle their emotions and make appropriate decisions about the treatment plan.
Trying to get educated about the disease could be the starting point.
The following measures may help the parents deal with their emotions in a better way:
- Take a moment to let the information about the diagnosis sink in.
- Accept that some things cannot be controlled.
- Believe that you can handle the situation.
- Realize that you must be strong yourself to support your child well.
- Seek support from your loved ones or other cancer survivors.
- Seek help from professionals.
Gain as much knowledge as possible about leukemia and its treatment, from reliable sources. You will find that gaining knowledge about the condition would make it less intimidating to you, and you may feel more prepared to support your child.
Parents can clarify their doubts and concerns by asking the following questions to the cancer care team:
- What type of leukemia does my child have?
- What are the treatment choices?
- What will the duration of the treatment be?
- What are the risks and side effects associated with this treatment?
- What would the cost of the treatment be? Will my health insurance cover it?
- Will the treatment affect my child’s ability to grow and develop?
- Will cancer recur?
Consider going for a second opinion
Seeking a second opinion can help get a better understanding of the disease and its prognosis, and gain confidence about the treatment options. During the consultation, it is important to give exact details of your child’s diagnostic reports and other documents to the new doctor.
Based on the second opinion, you may be in a better position to make decisions about the best treatment for your child.
Manage and organise your child’s medical records
The healthcare team and insurance companies have paper-intensive processes of payments and reimbursements.
Keeping an organized file with copies of all hospital bills and medical reports would be of great help in several ways. It would help the treating doctors to understand the treatment course, the insurance companies to reimburse the bills without delay, and finally, it will help you to understand the whole process.
A complete organized medical record should include the following:
- Medical prescriptions
- Investigation reports including blood tests
- A summary of your doctor’s current treatment plan or the plan that has been given to you as an option
- Hospital discharge orders/ documents
- Contact information about the healthcare providers who treated your child’s leukemia
- Medical bills received from healthcare providers, labs, and hospitals
- Insurance claims filed by you or the hospital
Manage your finances
Treatment for leukemia is expensive. For this reason, parents are likely to feel a financial burden during ongoing cancer treatment.
A basic health insurance policy can help in covering the costs associated with cancer diagnosis and treatment, including hospitalization.
Seek support from family and support groups
Being a caregiver to a child suffering from leukemia can be overwhelming. Cancer care is a team effort, and finding the right support can help you to stay strong and focused on providing appropriate care for your child.
Sharing your thoughts and feelings with your loved ones and your family will give you the strength to cope with the situation. Learn to accept help from them.
A healthy conversation with other parents in a similar situation will also help to reduce your stress and anxiety. There are also several support groups that support cancer patients and their family with mental and emotional support.
Go for follow-up visits
Follow-up is important as it ensures that the long-term side effects of the treatment are diagnosed and treated on time, and the child is screened for the recurrence of leukemia. The follow-up visits are usually scheduled as follows:
- In the first 6 to 12 months after treatment: one follow-up visit per month
- For the next 4 years: one follow-up visit every 3 to 6 months
- After 4 years: one follow-up visit every year
Take care of the child’s nutrition
Providing adequate nutrition to a child undergoing treatment for leukemia is a big challenge for parents, as the child may lose their taste, and experience nausea and vomiting, resulting in altered appetite. They may become dehydrated because of loss of water due to vomiting and diarrhea.
To withstand the treatment, children with leukemia should have a diet rich in proteins, carbohydrates, and healthy fats. Parents should ensure that the child is drinking plenty of fluids, especially water, to stay hydrated.
Take care of yourselves
As a parent, your primary focus is on your child’s health, but to offer your child the best possible care, you must be physically and emotionally healthy. Here are some ways in which parents can practice self-care:
- Get good sleep at night.
- Take a break by revisiting your favourite hobbies.
- Eat healthily and get some form of exercise.
- Practice relaxation techniques and stress-relief exercises to reduce anxiety and stress.
- Create a support system by contacting your friends or family members.
Parents are the child’s most reliable support system and can have a huge impact on their child’s treatment outcome. Parents must try to have a positive outlook towards treatment outcomes so that their child can reflect the same.