was successfully added to your cart.

Adult and Pediatric Blood Cancer Updates and Advances

SPECIAL THANKS TO OUR SPONSORS:

The Leukemia & Lymphoma Society, Incyte Corporation, Pharmacyclics & Janssen, Omeros Corporation

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 adults and children. Dr. Maria Luisa Sulis is an oncologist specializing in lymphomas and leukemias at Memorial Sloan Kettering Cancer Center who will share her expertise. As well, a parent to a pediatric patient will share his/her experience, best tips and coping skills. The nbmtLINK’s licensed staff social worker, Jennifer Gillette will facilitate the program. There will also be plenty of time for live questions.

Notes for 9/15/2021 Lunch & learn with the LINK 

Coping with Pediatric and Young Adult Cancers 

Helping Kids cope with cancer, Parents you are the captain of this care team 

  1. Cope yourself- Children can take on your emotions. 
  2. 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. 
  3. Recognize needs of siblings too- extra frustration can result from their feelings and effect all. 
  4. Honest and age- appropriate communication usually works best.  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. 
  5. 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. 
  6. 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. 
  7. Learn how to communicate effectively with each other and set times aside often to check in.  As questions and encourage them to express themselves. 
  8. Try to give choices where you can give them a sense of control.  Medicine with or without the fruit roll up? 
  9. Try to make things fun when you can.  For example, water app to stay hydrated, etc. Plant nanny. 
  10. Keep them posted on treatments and things that change because of this. 
  11. 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. 
  12. Find ways for them to maybe connect with other kids who have cancer that “get it”. 
  13. Consider support from a therapist, pastor, etc. 
  14. Don’t be shy about asking for support- ex John and parade 
  15. Find ways to help them vent physically, verbally, and activities that calm and distract. 
  16. Set realistic expectations but still encourage your child to do their best.  Also keep limits.  They feel better supported with them. 
  17.  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. 

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/ 

  1. 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. 
  2. Finances are strained deeply as they often are not very far in their careers yet. 
  3. 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. 
  4. 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. 
  5. Psychosocial distress is usually higher in this group as they have not had as much time to build life skills yet. 
  6. They face challenges with reintegration into work or school. 
  7. Body Image issues 
  8. Perhaps added stress of finding help with young children. 
  9. Often feel isolated and responses from friends are usually void since they cannot relate to what they are going through. 
  10. Insurance issues. 
  11. Physical abilities can change and affect career paths. 

Over ½ of the AYA population feel their needs are not met. 

Strategies 

  1. Ask your center about AYA programs and specialists, (nurses, social workers, doctors). 
  2. Ask for face to face meetings with psychological support. 
  3. 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. 
  4. Blog to communicate and to family and friends or to connect via social media. 
  5. Look for the easiest way to communicate with your health team.  Perhaps direct messaging through your electronic file? 
  6. Tell providers who you want involved in your care. 
  7. Find ways to discuss your experiences with peers/family.  Could even invite a friend to go with you to treatment. 
  8. Don’t be shy about discussing sexual or psychological issues with your doctor.  There are often treatments available to help. 
  9. 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. 
  10. Be aware that there are scholarships available to help the AYA community with college. 
  11. Remember that survivorship is about your whole life.