Mattie Miracle 15th Anniversary Video

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

February 17, 2021

Wednesday, February 17, 2021

Wednesday, February 17, 2021

Tonight's picture was taken in February of 2009. Notice that Mattie was holding a cupcake! At that point in time, cupcakes were the food of choice. Mattie was hardly eating or drinking anything, so when he requested a particular food, WE GOT IT! In fact, I used these homemade cupcakes as incentives for Mattie to comply with his physical therapy routine. In between cancer treatments, we would be sent home for a few days. Mattie would inevitably get sick, and he would need to be readmitted. While home though, I would bake dozens of cupcakes and then package them up to bring to the hospital. 


Quote of the day: Today's coronavirus update from Johns Hopkins.

  • Number of people diagnosed with the virus: 27,811,617
  • Number of people who died from the virus: 489,933

Yesterday I was contacted by a physician who is interested in investigating healthcare burnout and the impact it has on professionals, patients, and the health care system. I certainly know a lot about "family caregiver burnout" but not that much about professional caregiver burnout. So I started doing some  research into the literature before I talk with this doctor next week. 

So what is professional burnout? Apparently it is "a pathological response to work-related stress," which is running rampant in medicine and impacts all facets of healthcare, including patients, physicians, and the health care system itself. 

The concept of “critical incident stress” refers to the psychological response of individuals or groups after exposure to a traumatic experience. Many types of critical incidents happen within hospitals and impact the well-being of health care staff.  Examples that commonly occur include angry or threatening confrontations with parents, patient relapses, patient deaths, and medical errors. The health care culture may lead to inappropriate internal scripts that tell professionals (nurses, doctors, psychosocial providers) to accept parents’ anger, that if they had just worked a little harder, they could have prevented the patient’s relapse or death, or that the medical error occurred because of their own ineptitude. Critical incidents, and the response to them, can profoundly detract from well-being and consequently impact professional performance. Critical incidents are not the only contributing factor to burnout among medical professionals but they are one element influencing it. Therefore many hospitals are designing peer support programs to help employees manage and cope with stress in order to improve well-being, and reduce burden. 

I know about five years ago, Mattie Miracle tried to fund a support program like this at Mattie's hospital. The reason we decided to do this was there were several critical incidents within the inpatient pediatric units that triggered the need. In that particular case, the incidents I am referring to were several pediatric patient deaths. When Mattie died in 2009, I distinctly remember many of Mattie's nurses telling me that the psychiatrist and chaplain held a debriefing session for Mattie's treatment team. Honestly back then I may have heard this but it did not really register with me, most likely because I was too traumatized myself. 

Yet over time, I realized that Mattie's team most likely needed support and opportunities to safely talk about their experiences caring for my six year old, dealing with Peter and me, and of course having to cope with his death, only six weeks off of chemotherapy. I really had HIGH hopes for our lunch time support program at the hospital. As Mattie Miracle is not only committed to meeting the psychosocial needs of children but that of health care providers as well. 

What I quickly learned about our support program after about two years, was it wasn't working. Why? I am sure I don't know all the reasons, but first and foremost, it is very hard to ask nurses and other staff to stop their jobs and attend a support group meeting at noon (a time picked by the group's co-leaders). Even if nurses did attend, it is hard to transition from a high intense, life and death job, to a closed room to discuss feelings with your colleagues. In addition after each support session, nurses would return back to the units. Where they needed to be able to function, concentrate, and focus on their patients needs. I also wondered about how confidentiality was maintained in these group settings? Needless to say, the support program folded. Which is why I am very interested in reading some of the evidence based research I found on burnout and learn how other institutions have made these peer support programs work.

In my readings today, I came across this diagram outlining common stress responses. It resonated with me because I would have to say medical stress (or probably stress in general) is experienced in all ways (cognitive, behavioral, physical, emotional, and spiritual). Unfortunately with Mattie's diagnosis, there were constant "critical incidents" that I experienced daily. Sometimes multiple times in a given day. Which is why I feel like I could have been the poster kid for this pentagon model, a model which illustrated my stress level for many years to come.  















No comments: