Parents of children newly diagnosed with a bone marrow failure disease have days filled with tests, doctor visits, and worrying. You might find yourself asking why this happened to your child. These feelings are normal. It is important to know you are not alone. This section helps parents understand how to take control of their child’s care.
Find a Specialist
The first thing you should do is to find a pediatric hematologist/oncologist who specializes in treating bone marrow failure diseases. The doctor should work at a facility that uses a team approach to treatment. A treatment team might include the following:
- Specialized Surgeons
- Specialized Pathologists
- Pediatric Nurse Practitioners
- Pediatric Radiologists
- Rehabilitation Specialists
- Education Specialists
- Social Workers
The team approach ensures your child receives the best care available. A strong care plan provides the best chance for remission (disappearance of the disease in response to treatment) and hopefully a cure.
If you need a referral to a specialist, call AAMDS and ask to speak with a patient educator at (800) 747-2820, option 1.
It's normal to shocked and confused by your child’s initial diagnosis. It might even have been difficult to concentrate after hearing the words "rare disease". Hard as it may be, you need to ask your doctor questions to understand how to proceed.
- Prepare written lists of questions before going to the doctor. Go to Questions to Ask Your Healthcare Team for more information.
- Take someone with your to appointments to write down answers, ask questions and provide support.
- Keep asking questions until you understand the answers.
- Learn everything you can about your child’s disease. Go to Education for more information.
Get Support from Others
You can't do it alone. Don't be afraid or too proud to receive help, support and encouragement from friends or family members. In fact, you should ask for it.
Surround yourself with people who care and are willing to pitch in by babysitting, doing housework, grocery shopping or simply listening. You may even want to talk to a professional who can help you deal with the stressful issues you are facing. The social worker at your child’s treatment facility can offer support and help connect you with other counselors in your area. Go to Patient Networks for ways to get support within the community.
Take Care of Yourself
Any parent of a sick child knows this is a real dilemma. On one hand, you are focused on your child and helping him or her to get healthy. On the other hand, your child needs you to be healthy, strong and in control. Make the time to eat right, exercise and get plenty of sleep.
Find Time to Have Fun
Your child's illness is serious. You may feel like every second of your life revolves around it. That's why it's vital for you to find relief. Make time to do things you enjoy – even if you need to sandwich fun times between appointments. This could be as simple as taking a walk, playing cards with a friend, doing a craft project or going to the park. Take a minute now to make a list of 5 things you have fun doing – and commit to doing one this week. You will find you feel more refreshed when you do.
Supporting Your Student
Sending your child back to school after their diagnosis can be scary. In order to make this easier, AAMDS created Supporting Students with Bone Marrow Failure Diseases: A Guide for Parents & School Personnel. This guide provides what you and other school personnel need to create a safe school setting for your child. It includes basic disease information, an overview of the challenges your student may face, and tips for supporting your child’s re-entry into school. Share this guide with your child’s teacher, school nurse, school administrator, and other school staff.
Becoming an Adult
Growing up and becoming an adult is challenging, especially for young people with bone marrow failure. At some point, young adults should prepare to take complete control of their care. The American Academy of Pediatrics says that a well-timed transition from child to adult-oriented health care depends on the person; however, the transition would occur ideally between the ages of 18 and 21 years. Preparing for that transition should begin much earlier. Some hospitals start the transition process in the early teen years. Talk to your child’s doctor about what you can do to help transition your teen's care management without health risks.
Tips for Parents to Help Transitioning Teens
- Help your teen understand his/her diagnosis and treatment options.
- Give your teen skills and support to manage his/her condition and adhere to treatment requirements.
- Help your teen learn how to communicate effectively with health care providers.
- Understand your teen’s unique needs and abilities and put strategies in place to promote self-care early on
- Prepare your young adult to manage his/her own care, live independently and seek the resources they need for successful transition.
- Teach your teen to advocate for his/herself, navigate adult health care systems,and remain confident about pursuing their adult life goals.
Resources for Transitioning Control of Care
AAMDSIF has many resources for parents to use during this period. Refer to the Caregiver Resources section for more information.