Caring for a Child with Neuroblastoma

September 5, 2022
Janelle Thomas MSN, RN
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There is no doubt that neuroblastoma is a life-changing diagnosis. But, this doesn’t mean that life doesn’t go on. Like other forms of cancer, in recent years treatment for neuroblastoma has come a long way, leading to increased survival rates and quality of life. While this is certainly good news, long-term care for a child with neuroblastoma can still come with an array of questions, challenges, and obstacles.

To ensure the best possible results for your child and family, it’s important to stay engaged and educated about this condition, treatment options, and how to meet care needs. We’re sharing the following overview and tips to help make this process as smooth and effective as possible.

Neuroblastoma Explained

Neuroblastoma is a form of cancer where a tumor develops from still-developing nerve cells commonly known as neurons. This condition can affect people of all ages but is frequently diagnosed in children because the cancer spreads in nerve cells that are present before birth. Neuroblastoma commonly grows in and around adrenal glands near the kidneys, chest, abdomen, and areas near the spinal column.

Symptoms of neuroblastoma include:

  • Abdominal pain
  • Chest pain
  • Back pain
  • Feeding problems
  • Developmental delays
  • Weight loss
  • Bowel problems
  • Breathing problems.

After diagnosing blastoma at birth or with the development of symptoms, treatment will usually include:

  •  Surgery to remove growths
  • Chemotherapy
  • Radiation therapy
  • Bone marrow transplant
  • Stem cell transplants.

7 Tips for Caring for a Child with Neuroblastoma

Treatment for neuroblastoma is extensive and can bring many new considerations for your family. This can include everything from scheduling appointments to feeding, to managing pain and side effects. While no two situations are the same, many families have used and benefited from taking the following steps during their child’s neuroblastoma care journey:

1. Take Notes and Keep a Journal

During the treatment process and after, the amount of information you get can be overwhelming. Whether you’re jotting it down on a piece of paper or dictating notes into your phone, use tools to help you keep track. Take time during quieter moments to review your notes and help yourself develop treatment and care strategies. It’s also just as important to keep track of your child’s symptoms. Progress isn’t always linear, and sometimes your child can be improving even if it doesn’t feel that way. Keeping track and logging data can help prove this and help you communicate more effectively with doctors and caregivers.

2. Commit to Physical Therapy and Rehabilitation

Whether your child is recovering from surgery, chemo, or the disease itself, physical therapy and rehabilitation can help your little one develop strength and regain energy. Many therapists specialize in treating children with cancer and understand the unique needs and problems these patients can face. Over the long haul, physical therapy and rehabilitation can help your child overcome developmental issues and enjoy a more normal activity level.

3. Mental and Emotional Health Matter

Neuroblastoma care should treat the entire patient, not just the disease. Learning that you are dealing with a life-altering condition can take a huge toll on the emotional and behavioral wellness of a child. It can be a lot to deal with, and it’s ok if it’s more than you’re equipped to deal with. Counseling can help you and your child cope with this new normal in a healthy way that allows for growth and resilience. By dealing with this key aspect of neuroblastoma care head-on, you can help your child come through on the other side with a healthier body and mind.

4. The Importance of Good Nutrition

Drinking plenty of water and eating the healthiest possible diet is another fundamental tool in the cancer-fighting toolbox. Although the disease and treatment can be associated with eating and nutrition problems, ensuring your child gets the nutrients they need can help the body be healthier and fight the disease. Use communication to find out when your child is hungriest and make sure that is when they are eating the most. Serve snacks throughout the day to encourage consistent eating and serve a balanced, nutrient-rich diet. Your doctor or a registered dietician can help you develop a personalized nutrition plan that is right for your specific situation and diagnosis.

5. Let Your Kid Be a Kid

No matter how mild or severe your child’s neuroblastoma diagnosis is, do not let it consume their life. Having fun, playing with toys and games, enjoying time with friends and family, and watching their favorite shows and movies are part of what being a kid is all about. Not only can these things help take their mind off their problems, but they can also improve mental health and physical resiliency.

6. Take Time for Yourself

The above tips apply just as much to parents and other caregivers as it does to patients. If you are worn out and burnt out from meeting your child’s needs in addition to your other responsibilities, it can have a negative impact on the long-term care journey. Try to consistently make time for yourself as much as you possibly can. Whether it’s recruiting another family member or a friend to help out, or seeking professional assistance, never feel like you don’t have options for getting the you-time you deserve. It will pay off in the long run.

7. Don’t be Afraid to Get the Help You Need

When caring for a child with neuroblastoma, getting just a little help can make a huge difference. Many families find that pediatric home health is an essential part of their long-term care plan for a wide range of complex diagnoses, including neuroblastoma. Home health professionals can provide respite care, accompany your child to appointments, assist with nutritional needs, and administer medication as needed. Often, a home health aide or nurse can become an extended part of the family and a key member of the care team.

Contact Care Options for Kids For Pediatric Home Health Care

It can be hard to balance your time between work, home, and caring for a child. That’s why our team of skilled professionals at Care Options for Kids is here to help.

Our home health care services offer support in the comfort of your home. We refer loving and competent nurses to provide customized care for families — from a few hours a day to around-the-clock supervision. Contact us directly to speak with a home health care professional or request a free in-home assessment. Together we can determine the best plan of action to keep your loved ones happy and healthy.

If you are considering pediatric home health care services, contact the caring staff at Care Options for Kids. Call today at (888) 592-5855.