There are a variety of external resources available to help children and families prepare for transplant. Remember that there are many ALD parents who have walked in your shoes. You may find it helpful to connect with other parents who have gone through the transplant process as you’re packing and getting ready. Organizations like ALD Alliance and ALD Connect are great resources for connecting with other families to hear about their experiences.
In addition, Cincinnati Children’s has several helpful videos that show you what to expect during a bone marrow transplant. Stanford Children’s Health also has information on their website to help parents understand more about the transplant process. Read one parent's tips for preparing for ALD transplant by clicking here:
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Preparing for Transplant as a Family
Before your child receives their transplant, it will be important to sit down as a family and discuss how family life will change. For many families, there is a major shift in roles and responsibilities in the household during treatment. In some cases, family members are separated for extended periods of time so that one parent/caregiver can continue to work or fulfill other responsibilities while the other parent/caregiver supports the child going through transplant. In other cases, both parents/caregivers may choose to remain with the child who is receiving the transplant while the child’s siblings are cared for by relatives or family friends. These decisions are challenging for families to make, and they are made more difficult when families must travel long distances away from home for their child’s treatment. It is important to have ongoing conversations as a family to process any feelings about changes in family dynamics related to your child’s treatment.
Caring for your other child(ren)
Your other child or children are likely feeling a wide range of emotions about their sibling’s health: guilt, anger, sadness, worry, protectiveness over their sibling, love, and concern. They may also feel stress and guilt if they are healthy, unlike their sibling. It is important to remember that this is also a very confusing and difficult time for them. Meet them where they are at mentally and emotionally, and find ways to build and maintain positive relationships with all of your children throughout the treatment process. Your other child or children might also feel lonely since their sibling requires a lot of your care and attention. Try to make an effort to ensure their well-being is not neglected and let them know they are supported during this time too. One way to do this is spend one-on-one time with them when the opportunity is available. You can also look into support programs for siblings such as Sibshops. Sibshops includes activities, games, and discussions about common experiences, joys, and concerns in a group setting with other children and teens who have a sibling with a disability or chronic health condition. Lastly, be transparent and honest when answering questions about their sibling’s condition to reduce any feelings of confusion and/or concern. Giving them a role or age-appropriate tasks during your family’s ALD journey could also help them feel empowered and included. If your other child or children assists with care-taking, be sure to include them in all conversations with doctors and medical professionals related to caring for your affected child.
Caring for your marital/romantic relationship
You are likely experiencing parenting stress like never before while caring for your child during your family’s ALD journey. This stress, along with other stressors, could lead to marital or relationship strain. Finding time and energy to maintain your relationship might be more difficult than ever before, but there are solutions to persevere as a couple through these challenging times.
Boston Children’s Hospital interviewed parents who were navigating their children’s illnesses and provided tips on how they maintained their relationships. Some of their “lessons learned” include: celebrating small wins, being flexible with each other, talking about “normal” things, laughing together, supporting each other “judgment free”, showing grace, practicing forgiveness, taking breaks, having patience, and remembering this long journey should be conquered as a family.
Another way to strengthen your relationship is to utilize respite care. Respite care gives caregivers a break and a chance to relax and recharge. It provides short-term care that can be in-home or community-based. Research has shown parents caring for children with chronic illnesses and disabilities who use respite care services may experience improved marital quality and/or reduced stress (Harper et al., 2013; Roberston et al., 2011; Strunk, 2010). Taking a break and putting some of your time and energy into caring for yourself and maintaining relationships is critical. Whether you spend respite care time with your partner or alone, having the opportunity to indulge in “typical” activities (e.g., a workout, date night, grocery shopping) can positively affect your marriage. To find respite care near you, visit the National Respite Network And Resource Center.
Other ways to improve your relationship include having consistent communication, remembering that you are on the same team and have the same goal, attending couples counseling, changing negative habits, giving each other space when needed, and finding ways to have fun together.
Seeking support from your community
At some point, you will want to share the news about your child’s diagnosis and treatment with those around you. This may involve having a number of conversations, including with your child’s school, friends, employers, and other support networks such as religious groups or organizations with whom you are affiliated. Having to tell a lot of people the news, sometimes in a short amount of time, can be draining. You may consider creating a brief email, letter, or video to share relevant information to reduce the number of face-to-face conversations. One website, Caring Bridge, allows families to document their health journey so that friends and family can follow along and get important updates. Alternatively, you may instead choose to ask a close family member or friend to help communicate the news to your social network.
In some cases, direct conversations are necessary to ensure that plans and arrangements can be made to support your child and/or your family. For example, you may have to share information with your employer about the timing and duration of your child’s treatment and discuss any options for medical leave that your company may offer. Similarly, you will want to let your child’s school know about your child’s treatment and discuss options for educational programming during and after transplant. For those receiving treatment out of state, you may want to discuss what options may be available for your child while they are hospitalized, such as hospital-based tutoring programs. A social worker at the hospital can provide additional information about these programs and help assist your family in arranging for these services.
Once others know what you and your family are going through, they may ask you how they can help. It may be helpful to come up with a list of ways that your family can be supported. For example, you can ask someone to bring in your mail every day or drop off a meal each week. There will also be items that you and your family need that you may not have time to shop for or purchase. For instance, there may be certain essentials you need when traveling or during a long stay in the hospital. Consider starting an Amazon Wish List of essentials that you can share with those who ask. Your child may also appreciate getting care packages or cards from friends and family, which will brighten their day while they are in the hospital. Finally, consider asking a friend to help you create a social media page to provide regular updates about your child during their transplant journey or to start a community-based fundraising campaign (like Go Fund Me or HelpHopeLive) to provide coverage for medical and travel expenses.
Additional considerations prior to treatment