Pediatric Patient Care, with Retired PA Nancy Robey

Nancy Robey spent 34 years as a Physicians Assistant at Johns Hopkins in Maryland.  Now retired, she has a wealth of experience with pediatric transplant patients. She's here today to offer her tips and best practices to care for them.

In the pediatric transplant world, the procedure may be for something other than cancer, and many patients and families don't have the knowledge base that cancer patients do.   Education is so important.

Speaking of education, how do you navigate a patient being out of school for so long?  Nancy talks about different strategies she's seen, from private tutors, to virtual classrooms, and more - running through the pros and cons of each.

One key is interaction with other children and peers.  Unfortunately, some friends will fade away, but social interaction is vital to a patient in isolation.  This can be achieved through handwritten notes, Zoom and Facetime calls, and even now through video games and social media.

Nancy also talks about the hospital room itself.  While each facility has its own rules, she talks about ways to brighten up patients' rooms with pictures, decorations, personal items, and more.

At Johns Hopkins in particular, they have a Child Life Services team, offering support to children of all ages.  Your hospital may have something similar.  You can learn more here: https://www.hopkinsmedicine.org/johns-hopkins-childrens-center/patients-and-families/child-life/

Nancy walks us through various aspects of the hospital stay, as well as the isolation period that follows.  It's important not to be disheartened if your patient is re-admitted.  That's often a minor setback and just part of the process.  After all, that's why you're close by!

We wrap up with a couple of Nancy's book recommendations, for kids of various ages and their families.

For the younger set and families: More Than You Can Handle: A Rare Disease, A Family in Crisis, and The Cutting-Edge Medicine That Cured The Uncureable - https://www.amazon.com/More-Than-You-Can-Handle/dp/0593085914

For older kids and young adults: Between Two Kingdoms, a Memoir of a Life Interrupted: https://www.amazon.com/Between-Two-Kingdoms-Suleika-Jaouad/dp/0399588582

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to this season's sponsors:

The Leukemia & Lymphoma Society, www.lls.org

Sanofi: https://www.sanofi.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd