Tonight's picture was taken in July of 2009. Mattie was outside on our deck and playing in his sandbox. Keep in mind that Mattie had a broviac. This was a central venous catheter inserted into the large vein leading directly into Mattie's heart. But the catheter had two tubes hanging from Mattie's chest. Any time Mattie was playing or near water and sand, I worried about these catheters. Because if pulled hard, Mattie would instantly bleed out and die. Of course if the catheters got dirty, that was also a breeding ground for an infection. Of course any infection would have an impact on the timing of chemotherapy administration. So it was a fine balancing act for us to monitor Mattie versus us allowing Mattie to be a child with moments of normal and fun.
Quote of the day: A hero is someone who has given his or her life to something bigger than oneself. ~ Joseph Campbell
This week, Peter came across an article that was being promoted on-line. The article was in Scientific American. What caught Peter's attention was the title of the article. So naturally he read it and then forwarded it along to me. When Peter emailed it to me, he wrote...... "we need to follow up on this!"
With that note, I was inspired to quickly read the article and to determine what Peter saw that needed to be corrected. He did not even have to tell me, that's how blatant the oversight was. What was missing from the article? There was not even a mention of our evidence based Psychosocial Standards of Care for Children with Cancer and Their Families. Which is a problem because the article charges its readers to advocate for psychosocial care as a Standard of Care. Which one can only conclude means that this is NO STANDARD currently exists.
I encourage you to read the article, Understanding the Psychological Effects of Childhood Cancer. It can be found by clicking on this link:
https://www.scientificamerican.com/article/understanding-the-psychological-effects-of-childhood-cancer1/
This is a table generated by the American Cancer Society that specifies the five year survival rate for different forms of childhood cancer. What you will immediately notice is that ONLY a few childhood cancers have a high survival rate. Cancers like Mattie's, have a 71% survival rate, which means that 29% of children don't survive.
I truly wish we could get scientists and clinicians to converse about the REALITY!!! Putting that aside, at the end of the article the author states, "In addition to pushing for cures for cancer, we should also advocate for psychological support as a standard of care for childhood cancer. This means having social workers, therapists, and Child Life advocates as a part of the treatment team, and with the family every step of the way."
As soon as I read the article, I googled the author, Dr. Hilary Marusak, who is a neuroscientist and a frequent contributor to Scientific American, and obtained her email address. Within minutes, I wrote this to her:
Dear Dr. Marusak,
I wanted to write to you today to let you know that I was very pleased to see your article entitled, Understanding the Psychological Effects of Childhood Cancer in Scientific American. You brought up excellent points, particularly regarding childhood cancer being more than a medical disease.
My husband and I lost our only child, Mattie, to osteosarcoma in 2009. Two months after he died we established the Mattie Miracle Cancer Foundation. The mission of Mattie Miracle is to enhance awareness of the psychosocial impact of childhood cancer and increase access to psychosocial services for children and their family members. As our tagline indicates, we learned first hand that childhood cancer "IS NOT JUST ABOUT THE MEDICINE." Mattie developed clinical depression, anxiety, and medical traumatic stress while on treatment, and had no mental health issues prior to his cancer diagnosis.
We live in Washington, DC and support direct psychosocial services, by funding child life professionals at two local hospitals. In addition to our local work, we have been working with a team of psycho-oncologists from around the US, Canada, and the Netherlands since 2012. Mattie Miracle had the vision to create evidence based psychosocial standards of care and with Dr. Lori Wiener's leadership at NCI, the Standards were published in a dedicated supplement of Pediatric Blood & Cancer in December of 2015. I wanted to write to you today because I know you mentioned the following in the article..... "in addition to pushing for cures for cancer, we should also advocate for psychological support as a standard of care for childhood cancer." I am happy to tell you that what you are suggesting already exists and like you, Mattie Miracle wholeheartedly supports this initiative to expand the message about comprehensive cancer care including psychosocial support.
The Psychosocial Standards of Care for Children with Cancer and Their Families were developed over a three year time frame, involved 85 health care professionals from 44 institutions across the U.S., Canada, and the Netherlands. The project resulted in the largest and most comprehensive psychosocial standards research study to date in which 1,217 journal articles were reviewed. These historic evidence-based standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, through survivorship, or end of life and bereavement care. The Standards have been endorsed by 16 professional organizations: 1) American Academy of Child & Adolescent Psychiatry (AACAP), 2) American Childhood Cancer Organization (ACCO), 3) American Psychological Association's Society of Pediatric Psychology (SPP - Division 54), 4) American Psychosocial Oncology Society (APOS), 5) Association of Pediatric Hematology/Oncology Educational Specialists (APHOES), 6) Association of Pediatric Hematology/Oncology Nurses (APHON), 7) Association for Pediatric Oncology Social Workers (APOSW). 8) American Society of Pediatric Hematology/Oncology (ASPHO), 9) B+ Foundation, 10) Canadian Association of Psychosocial Oncology (CAPO), 11) Cancer Support Community, 12) Children's Cause for Cancer Advocacy (CCCA), 13) Children's Oncology Group (COG), 14) CURE Childhood Cancer, 15) National Children's Cancer Society, and 16) St. Baldrick's Foundation.
Currently the team is working on strategies to implement these Standards around the Country. We welcome any questions you may have about the Standards. Given your own work to help children cope with cognitive late effects, I thought you would appreciate having access to the Standards. Mattie Miracle has paid for indefinite open access to the Standards because we are passionate about changing the way cancer care is delivered to children and their families. For we know all too well that the psychosocial issues DO NOT end when the treatment does. Below you will find some links to the Standards that you may find helpful. Thank you for all the work that you do and for calling attention to the psychosocial aspects of cancer care. In appreciation, Vicki
Helpful Links:
Standards
History
Read Them
Endorsements
Standards Update
Implementation
---------------------------------------------------------------
Hilary wrote me back the next day and was very gracious. She let me know that she knew about the Psychosocial Standards of Care and was sorry for our loss. She then asked how she could help with the implementation process of the Standards. So I asked her whether she could write a follow up article for Scientific American highlighting the Standards and letting her audience know that Psychosocial Care is part of a Standard of Care and how advocates can ensure this by promoting these evidence based Standards. Hilary replied that she would be happy to, but that we had to check with the magazine's editor. So with that, I wrote the below email to the editor:
Dear Mr. Cook,
I received your email address from Dr. Hilary Marusak. You published a great article of hers entitled, Understanding the Psychological Effects of Childhood Cancer in Scientific American. As I said to Hilary, it is wonderful to see the psychological impact of cancer highlighted in such a well read and prestigious publication.
I included my email trail with Hilary below so that it would help you put what I am writing into context. In a nutshell, my husband and I are childhood cancer advocates and run a non-profit called the Mattie Miracle Cancer Foundation. The Foundation was created two months after our only child, Mattie, lost his battle with Osteosarcoma. What we learned from Mattie is that "Childhood Cancer is NOT just about the medicine." In fact, there are real life psychological issues that arise from the treatment and the cancer experience in general. Which is why Mattie Miracle's mission is to enhance awareness of the psychosocial issues associated with childhood cancer and increase access to psychosocial support for children with cancer and their families.
Naturally Hilary's article captured us as soon as we saw its title. In the article Hilary mentions....."in addition to pushing for cures for cancer, we should also advocate for psychological support as a standard of care for childhood cancer." The reason I reached out to Hilary was I wanted to make sure she was aware of the Psychosocial Standards of Care for Children with Cancer and Their Families which were published in Pediatric Blood & Cancer in December of 2015. These historic evidence based Standards were the vision of Mattie Miracle and their development was led by Dr. Lori Wiener at NCI. I have included links and more information about the Standards below.
It is my hope that you will consider Hilary writing a follow up piece to her article highlighting the Standards, Standards which she is advocating for as being part of comprehensive cancer care. Psychosocial support as a Standard of Care is exactly why these Standards were created. It would be wonderful to share this amazing three year long research project involving over 85 psycho-oncology professionals from the US, Canada, and the Netherlands to develop Standards that will ensure optimal psychosocial care for children with cancer and their families from the time of diagnosis, throughout treatment, and into survivorship or end of life and bereavement care.
It is an honor to e-mail a Pulitzer prize winner and we thank you for your time and consideration to this request. We believe that highlighting the Standards in your publication will enable us to reach a much larger audience to spread awareness of the importance of these Standards of Care and how the Standards can change the direction of cancer care in our Country. In appreciation, Vicki
--------------------------------------------------------------
The editor did write me back in a very timely fashion, but here was the response:
Dear Vicki,
Thank you for your kind note and for your important work on this issue. Unfortunately, it is not going to work to have a follow up post, but I wish you luck and appreciate your efforts.
I am not sure your reaction to the above response, but mine was wow! I just explained that I lost my child to cancer and the work we are doing with the Foundation. Yet there was NO acknowledgment to either. Which to me is very telling. But what surprises me is that as the editor of his publication he isn't interested in correcting this oversight in any way. Which means to me that he truly has no interest in the content he was publishing in the first place. Why aren't facts of a story important anymore? This is a rhetorical question! But what this tells me very BOLDLY is that the advocacy work Peter and I do is needed if we ever are going to make any headway with psychosocial support being incorporated into comprehensive cancer care.
No comments:
Post a Comment