Tonight's picture was taken on September 30, 2007. Mattie was five years old and had just completed his first month of kindergarten. I would have to say that by 5, everything started coming together for Mattie. By that point his sensory integration issues were well managed, his speech issues had resolved themselves and he was happy at school and making friends. Unfortunately this was short lived, because by that summer, Mattie was diagnosed with cancer.
Quote of the day: Time is a free resource. ~ Sunday Adelaja
Last night, I was contacted by the president of a larger childhood cancer non-profit. She alerted me that her organization was going to host a webinar today about the vincristine shortage that I reported about in last Thursday's blog. Keep in mind that vincristine is part of the standard of medical treatment for lymphoma, leukemia, and brain tumors. As you can imagine, with parents reading in the NY Times that this chemo drug is in short supply, panic, fear, and medical trauma has ensued. Rightfully so! I would say the fear goes beyond just the vincristine shortage, as parents begin to connect the dots.... if this can happen with one drug what prevents it from happening with another? A valid question.
In any case, the president of this organization reached out to Mattie Miracle, because she views us as the authority on psychosocial issues. I did not pay much attention to that notion last night, as I really was focused on answering her question. But wow, no? Look at how far we have come in ten years! In essence people wrote in questions to hear that they wanted answered today on the webinar. She floated the psychosocial question by me and wanted me to write a response and also provide resources.
The question posed was....This situation (the vincristine shortage) is very stressful for me and my family. Are there psychosocial resources that might help us to cope? My response:
I think parents and caregivers should consult the child's health care team about this issue. The team is the appropriate first place to start. As it is vital that the team hear all family concerns and observations about the child. No one knows the child better than the family and medical personnel rely on this knowledge to help direct care. Since you are looking for specific resources to help children and families cope, I want to introduce you to the Center for Pediatric Traumatic Stress (CPTS). The Center for Pediatric Traumatic Stress (CPTS) was founded in 2002 to address medical trauma in the lives of children and families. CPTS is located at two of the premier children’s hospitals in the country: The Children’s Hospital of Philadelphia and Nemours A.I. du Pont Hospital for Children. Your community already knows one of the founders of this Center, Dr. Anne Kazak (who sits on the Mattie Miracle Scientific Advisory Group). CPTS offers an excellent evidence based website that provides outstanding psychosocial materials and resources for the entire healthcare team, including families.
I shared multiple website links that I thought would be of value! I heard back today that these links will be circulated to everyone on the call and perhaps will also go into an on-line repository. I was pleased to hear that we could help. If interested, the links are below. CPTS is an excellent resource and Mattie Miracle is honored to serve on the family advisory committee of CPTS.
Website for CPTS: https://www.chop.edu/centers-programs/center-pediatric-traumatic-stress
Coping with Stress Reactions: https://www.healthcaretoolbox.org/for-parents-and-children.html
Managing worries and fears: https://www.healthcaretoolbox.org/for-parents-and-children.html
Helping your child cope, what parents can do: https://www.healthcaretoolbox.org/images/pdf/AttheHospitalHelpingMyChildCope.pdf
Rate your child's reactions (though the word "injury" is used on this rating form, this form is applicable to identifying traumatic stress in a child with cancer): https://www.aftertheinjury.org/quick-quiz
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