If your child was recently diagnosed with aplastic anemia, MDS or PNH, it's likely your days have all of a sudden become filled with medical tests, doctor visits and, no doubt, worrying. This process can be confusing and overwhelming. You might feel depressed or even angry, and ask "Why did this happen to us?" While those feelings are normal, it's important to know that you're not alone. There are things you can do to take control of your child's care and get the support you need.
Follow these tips for taking control or your child's care and getting the support you need:
Find a Specialist. The first thing you need to do is to find a pediatric hematologist/oncologist who specializes in treating bone marrow failure diseases. It is also important that your child is treated at a facility that uses a team approach, including specialized surgeons and pathologists, pediatric nurse practitioners, pediatric radiologists, rehabilitation specialists, education specialists, and social workers. This will ensure that your child receives the best care and treatment available, offering him/her the best chance for remission (disappearance of the disease in response to treatment) and ultimately, cure. If you need a referral to a specialist, call us and ask to speak with a patient educator at (800) 747-2820, option 1.
Ask Questions. You undoubtedly experienced confusion and shock upon hearing your child's initial diagnosis. This meant that a lot of what your doctor told you went in one ear and out the other. It is now important that you ask questions of your doctor and treatment team until you really understand what they are saying. Here are a few tips that can help:
- Prepare for every doctor visit. Write down your questions. To create a customized question list, visit Questions are the Answer, a site provided by the Agency for Health Research and Quality.
- Always take a spouse, family member or friend with you to the appointment. The other person can write answers, help remind you of questions you have forgotten, and provide emotional and moral support.
- Keep asking until you are satisfied that you understand the answers.
Educate Yourself. Learn everything you can about your child's disease and treatment options. This will put you in the driver's seat when you talk with your doctors. You will be able to better understand treatment options and evaluate the risks and benefits. Here are some tips for educating yourself:
- Read the relevant disease information on the AA&MDSIF Web site
- Watch the Bone Marrow Garden with your child to learn more about bone marrow failure diseases.
- Read the transcript and watch the interview with Dr. David Margolis entitled Issues for Parents of Pediatric Bone Marrow Failure Patients
- Visit our Online Learning Center for other videos, interviews with experts, and live webinars.
- Be careful when researching on the Internet. Not all the information you read comes from a reliable source. As a general rule, stick to Web sites that end in .gov and .org. Read more about finding reliable information on the Web.
Lean on Others and Get Support. 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, helping with housework, shopping for groceries, or simply offering a listening ear. Sometimes, it can also be beneficial to talk with an objective person who can help you deal with the issues you're facing. So don't be afraid to get professional help and counseling. You can always talk to the social worker at your child's treatment facility for assistance. They can offer support and help you connect with other counselors in your area.
It may also be helpful to connect with other parents who have gone through what you are. If you are comfortable using the Web, you can connect with other parents through Marrowforums, an online discussion forum for patients and their families dealing with bone marrow failure diseases. If you are interested in talking to a parent over the phone, you can get connected with a volunteer through the AA&MDSIF Support Connection.
Take Care of Yourself. As any parent of a sick child knows, this is a very real dilemma. On the one hand, your focus needs to be on your child and helping him or her get healthy. On the other hand, your child needs you to be healthy, strong and in control. And you can only be this kind of model for your child if you take care of yourself by eating right, exercising and getting plenty of sleep. If you feel you don't have time to do this, eliminate other things from your life and make the time. Your mental, physical and spiritual health is critical to your child's health.
Find Time to Have Fun. Your child's illness is serious. Sometimes, you may feel like every second of your life revolves around medication schedules and trips to the doctor. That's why it's vital for you to find relief by not taking every moment of the day too seriously. 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.