Upcoming Wednesday, September 21, 2022
Noon to 1 pm EST
This month, as we recognize Pediatric Cancer and Blood Cancer Awareness Month, this call-in educational support program will focus on updates and innovative treatments as they relate to blood cancer diagnoses in children. Dr. Rayne Rouce is physician at Texas Children’s Cancer Center where she is a member of the Bone Marrow Transplant/Stem Cell Transplant Program. Her clinical time is spent seeing leukemia and lymphoma patients. As well, the nbmtLINK’s licensed staff social worker and program facilitator, Jennifer Gillette will share coping skills and best tips from parents. There will also be plenty of time for live questions.
If you have any technical issues related to registering, please contact firstname.lastname@example.org or call (248) 770-5172. The call-in information is contained in the form you use to register.
Note: YOU call in to participate. (We do not call you.) This program is recorded and available on our website one week after airing live. (www.nbmtlink.org)
This FREE program is intended to provide psychosocial and emotional support along with health information from national experts regarding critical topics surrounding cancer and treatments.
SPECIAL THANKS TO OUR SPONSORS:
We acknowledge and thank the following Link Partners for their ongoing support.
American Society for Transplantation and Cellular Therapy (ASTCT) • Barbara Ann Karmanos Cancer Center • Blood Marrow Transplant Program at Northside Hospital • Center for International Blood & Marrow Transplant Research (CIBMTR) • City of Hope • Dana-Farber Brigham Cancer Center • DKMS • Froedtert & the Medical College of Wisconsin Cancer Network • Henry Ford Cancer Institute-Stem Cell Transplant and Cellular Therapy Program • Incyte Corporation • Memorial Sloan Kettering Cancer Center • Meredith A. Cowden Foundation • Nebraska Medicine • Oregon Health & Science University Knight Cancer Center • Roswell Park Comprehensive Cancer Center • Seattle Cancer Care Alliance • Siteman Cancer Center at Barnes-Jewish Hospital/Washington University School of Medicine • Spectrum Health Cancer Center • Stem Cell Transplantation and Cellular Therapy Program, John Theurer Cancer Center at Hackensack University Medical Center • The Leukemia & Lymphoma Society • University Hospitals Seidman Cancer Center • Vanderbilt-Ingram Cancer Center
Dr. Rayne Rouce, MD Texas Children’s Cancer Center
We keep developing better treatments and patient outcomes because of research. 90% of childhood leukemias can be treated/cured. However, the goal is to get this to 100% with less toxicity. Personalized and targeted medicine is the way we are making gains. Chemo is still the normal treatment, but we have gotten better at symptom management and personalizing it. Genetic tests are done on the tumors to figure out the best course of treatment. We are using more immune therapies like Car T Cell therapy which is like attaching a GPS on the cancer for your immune system to fight it. There are currently 6 FDA approved Car T therapies approved and these are much less toxic. Precision medicine involves testing cells to find targeting agents. This therapy leads to less toxicity, better outcomes, better doses, more specific sites and we can better protect healthy parts of your body. The further out you are from cancer, the less likely it will come back. It is important to follow up with your guidelines for wellness checks after treatment. More work is being done to help kids deal with cognitive issues after treatment. Access is being increased to bone marrow transplant. You don’t always have to have a perfect match. The goals are to help kids increase their ability to be kids.
Coping Tips from Jennifer Gillette, nbmtLINK Staff Social Worker
As the staff social worker at nbmtLINK, I want you to know the coping strategies I bring come from 25 years of working as a social worker in oncology, 5 of which have been directly with nbmtLINK, and I also bring a perspective of a child that grew up in children’s hospital waiting rooms with my own sister as she embarked on her lifelong health challenges. I have also learned greatly from my parents who modeled to me what true love and advocacy look like when you are willing to do whatever it takes to help your child survive. I would like to start with a few quotes from other parents on this journey, After countless tests and exhaustion, you are told your child’s diagnosis. You begin to learn how to live in the hospital. You experienced the inevitable ups and downs of childhood cancer. Cancer can be beat, but you will have scars and learn a new world of survivorship. You celebrate it being gone but there is this nagging fear of long-term complications or even relapse. I hold on to hope after hearing about new possibilities spoken about today.
Today, my child plays sports and is active. I am so much more grateful for those busy mom moments and watching her get to be “as normal” as she can with all that has happened.
Another, We have now learned to let the petty stuff go. We know we can’t control tomorrow, but we appreciate what we have today. So, here’s my advice: Use your resources. Educate yourself. Advocate for your child, even in school with accommodations for new needs. Find the best medical team. Don’t be afraid to ask for help. Keep a positive attitude and try to laugh. Vent when you need to. Connect with others who have been through it. And finally, have hope that there is incredible innovation on the horizon. Another Our whole family was in therapy while my son was in treatment and afterwards. Talking about it really helped. Venting and finding ways to relax was crucial. For kids, art, or athletics could help decrease anxiety. There are many resources available, but don’t be afraid to experiment and find what works for your family. Another
When your child gets diagnosed, they enter superstar status. Empathy for others can change and outside of cancer, every picture, every effort becomes the “best thing ever”. At the time of crisis it helps, but as we entered a time of long-term survivorship, I had to consciously transform that mindset for her to be more mindful of others, to share the attention, and to not have the cancer become her identity. She had long lasting changes, even losing her fertility afterward. It is normal to grieve these changes, but we are encouraging her to channel more energy into her abilities and not her losses.. This change came within a few years post-transplant.
Coping with Pediatric and Young Adult Cancers Helping Kids cope with cancer, Parents you are the captain of this care team Cope yourself- Children can take on your emotions. Breakdowns are ok but model that moment by moment we are choosing to get through this.
Realize what an important member of the team you are. No one knows your child like you, and you will be the first to notice changes in behavior that may require changes in treatment or changes in management of symptoms. Recognize needs of siblings too- extra frustration can result from their feelings and effect all. My story Have honest and age- appropriate communication with your child. Kids are magical thinkers and can fill gaps when they are missing information it. They need to know that nothing they did caused this. Some kids may do better with play techniques, books, or art to explain concepts. Be positive but foster trust.
Re-Mission2: Nanobot’s Revenge (iOS only)
You are a super-powerful microscopic robot battling evil cancer cells inside the human body. Your mission: destroy a growing tumor before the cancer baddies escape into the blood stream. Fight cancer and win in Re-Mission 2: Nanobot’s Revenge. Scientific research shows that playing Re-Mission 2 games can boost positive emotions, increase self-efficacy, and shift attitudes about cancer and cancer treatments, which can lead to better adherence to prescribed treatments.
Learn more about the research behind Re-Mission 2 games, designed with the input of more than 120 young cancer patients, at www.re-mission2.org.
Medical Terminology for kids
Simply Sayin (iOS and Android) https://play.google.com/store/apps/details?id=com.mediakube.pch.simplysayin&hl=e
The Simply Sayin’™ app from Phoenix Children’s Hospital uses pictures, sounds, and a child friendly glossary of terms to facilitate clear conversations between the healthcare provider, child, and family. Parents can also use this information to promote positive health care experiences for their children.
LLS Kids coloring and education
Try to keep routines, it keeps a sense of normalcy and helps keep kids grounded. This goes for siblings too. This may involve asking others to help but it can help. Know your child’s love language and what comforts them when they are nervous. If you have not heard of loves languages, check out this link https://www.parents.com/parenting/better-parenting/advice/love-languages-of-children/. If they are old enough, ask. Find ways to distract and calm them. Learn how to communicate effectively with each other and set times aside often to check in. As questions and encourage them to express themselves. Try to give choices where you can give them a sense of control. Medicine with or without the fruit roll up? Try to make things fun when you can. For example, water app to stay hydrated, etc. Plant nanny. Keep them posted on treatments and things that change because of this. Find ways to keep them connected with friends- Ex video games. Help them prepare ways to share this information with friends. Find ways to connect with family during hospitalizations etc. Skype, Face Time, Kids messenger (you can talk while playing with games and filters), and the Caribu app can help. Find ways for them to maybe connect with other kids who have cancer that “get it”. Consider support from a therapist, pastor, etc. Don’t be shy about asking for support find ways to help them vent physically, verbally, and activities that calm and distract. Set realistic expectations but still encourage your child to do their best. Also keep limits. They feel better supported with them. Find ways to relax. This is an exhausting journey that effects body, mind, and spirit. Tend to all these parts while learning how everyone recharges. Find support for them through peers, giving ideas to your community who may just not know what support looks like right now. John story.
Talk to your health care team. Here is what one health system has done Dr. Lilibeth Torno’s research indicated 44% of pediatric cancer survivors identified a need for greater mental health care. “Considering what we know about pediatric survivors and their mental health challenges, we wanted an application to implement a concept of mindfulness-based stress reduction,” Dr. Morales says. “It’s been shown to work at decreasing depression and chronic pain.” Dr. Morales was invited to collaborate with the team working on the existing Healthy Minds Programs app. Originally developed at the onset of the pandemic, the app offers a variety of guided meditations. Using community-based research practices for the unique pediatric population, Dr. Morales has expanded the app to include resources for childhood cancer survivors in need. Participants will be linked with community resources and tools, including medical transport; social security and disability assistance; mental health providers in the community. As for you young adults or teens, I encourage you to connect with your community via organizations like Stupid Cancer or Elephants and Tea. You have your own set of needs that are unique to your age group. GRYT APP- Support in your pocket grythealth.com/the-app
LIVESTRONG – Support for young adults with cancer www.livestrong.org/
Can check out our Lunch & Learn with the LINK on AYA cancer https://www.nbmtlink.org/ongoing-programs/lunch-learn/the-unique-needs-of-adolescent-young-adult-aya-oncology-patients/
Major life changes- this is a time of transition in so many ways. For example, patients may be stepping away in independence and then being thrown backwards to have parents care for them. Finances are strained deeply as they often are not very far in their careers yet.
They have started building a life and often have that changed. For example, maybe a first apartment that they need to leave since they cannot work. They are in a natural time of social transitioning where they might have had their core group go in different directions and they might not have established deeper friendships with people who stand by them through this. Psychosocial distress is usually higher in this group as they have not had as much time to build life skills yet. They face challenges with reintegration into work or school. Body Image issues perhaps added stress of finding help with young children or infertility. Often feel isolated and responses from friends are usually void since they cannot relate to what they are going through. Insurance issues. Physical abilities can change and affect career paths. Over ½ of the AYA population feel their needs are not met.
Ask your center about AYA programs and specialists, (nurses, social workers, doctors).
Ask for face-to-face meetings with psychological support.
Reach out to places like nbmtLINK, Imerman’s Angels, or other organizations to get a peer mentor. This is someone who has gone through this process before you.
Blog to communicate to family and friends or to connect via social media.
Look for the easiest way to communicate with your health team. Perhaps direct messaging through your electronic file?
Tell providers who you want involved in your care.
Find ways to discuss your experiences with peers/family. Could even invite a friend to go with you to treatment.
Don’t be shy about discussing sexual or psychological issues with your doctor. There are often treatments available to help.
Often, people 6 months out or more try to rush into their old life activities. You can set yourself up for failure this way. It is best to start slow and steady. For example, perhaps start with online classes and part time if going back to school. Be aware that there are scholarships available to help the AYA community with college. Remember that survivorship is about your whole life.