Jacob ringing the bell alongside his family and hospital team as hard
as he can to celebrate his 100th day post-transplant!
as he can to celebrate his 100th day post-transplant!
Adjusting to life post-transplant
Now that you are on the other side of transplant, you are likely finding that there are new things to consider as you adjust to life after transplant. Getting through transplant is not an easy task for any family, especially if your family had to make sudden, life-changing decisions regarding your child’s treatment. It may have been difficult to place your trust and your child’s future in someone else’s hands. You may worry if you made the right choice for your child. These feelings are normal and common, but remember that as your child's biggest advocate, you have done everything you can to make an informed decision about their health.
The transplant process can take a toll on the whole family, and you will likely face new and different stressors while caring for your child post-transplant. For many families, there are long periods of social isolation after transplant to minimize risks of infection. While these protocols are necessary, it can be very difficult to repeatedly miss out on opportunities to celebrate holidays, birthdays, and other fun events with friends and family. Your affected child may miss being in school, playing outside with friends, and living a “normal life.” Your other children may feel it is unfair that they cannot see their friends or attend school even though they are not sick. Social isolation may contribute to feelings of depression, loneliness, and despair. As a parent, you may find that you have to constantly think about the risks and rewards of doing certain activities for your child’s physical and psychological wellbeing. Accordingly, you will have to make many tough decisions about what level of risk you and your family are willing to tolerate. You know your family best and will have a good understanding of what level of support and interaction is needed to allow your family to thrive.
Also, because there are different treatment approaches for cerebral ALD (i.e., transplant from a donor and gene therapy), some recommendations and aspects of your family’s experience after treatment may differ from the experience of other families. Your child’s care team is available to help you assess the level of risk associated with different activities given your child’s treatment history. They can also refer you to different mental health resources if you or any of your family members feel it may be helpful. It is good to remember that as you navigate this new post-treatment phase of your child’s ALD journey, there are other families and professionals that you can lean on to help support you and your family.
Now that you are on the other side of transplant, you are likely finding that there are new things to consider as you adjust to life after transplant. Getting through transplant is not an easy task for any family, especially if your family had to make sudden, life-changing decisions regarding your child’s treatment. It may have been difficult to place your trust and your child’s future in someone else’s hands. You may worry if you made the right choice for your child. These feelings are normal and common, but remember that as your child's biggest advocate, you have done everything you can to make an informed decision about their health.
The transplant process can take a toll on the whole family, and you will likely face new and different stressors while caring for your child post-transplant. For many families, there are long periods of social isolation after transplant to minimize risks of infection. While these protocols are necessary, it can be very difficult to repeatedly miss out on opportunities to celebrate holidays, birthdays, and other fun events with friends and family. Your affected child may miss being in school, playing outside with friends, and living a “normal life.” Your other children may feel it is unfair that they cannot see their friends or attend school even though they are not sick. Social isolation may contribute to feelings of depression, loneliness, and despair. As a parent, you may find that you have to constantly think about the risks and rewards of doing certain activities for your child’s physical and psychological wellbeing. Accordingly, you will have to make many tough decisions about what level of risk you and your family are willing to tolerate. You know your family best and will have a good understanding of what level of support and interaction is needed to allow your family to thrive.
Also, because there are different treatment approaches for cerebral ALD (i.e., transplant from a donor and gene therapy), some recommendations and aspects of your family’s experience after treatment may differ from the experience of other families. Your child’s care team is available to help you assess the level of risk associated with different activities given your child’s treatment history. They can also refer you to different mental health resources if you or any of your family members feel it may be helpful. It is good to remember that as you navigate this new post-treatment phase of your child’s ALD journey, there are other families and professionals that you can lean on to help support you and your family.
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Just a few of the amazing warriors in our community who have been treated for cerebral ALD. A rebirthday is known as the date that a donor’s stem cells enter the patient's body and begin populating in place of the patient’s, a momentous time in the life-saving procedure that is a bone marrow transplant.
