Friday, February 3, 2017

Friday, February 3, 2017

Tonight's picture was taken in February of 2009. On Valentine's Day to be specific. My last Valentine's Day with Mattie. It was an unforgettable day. Mattie worked on several creations for me with his art therapists. I was literally thrown out of the child life playroom so Mattie could surprise me. When I came back in, I was greeted with a box filled with cards, cutouts and this magnificent heart crown. I put it on my head and Mattie decided to touch noses. This was a typical Mattie move with me.... touching noses and staring into each other's eyes. I am very grateful that Mattie's art therapist, Jenny, captured this precious and priceless photo. A photo that turns out to be one of my favorites. 


Quote of the day: There was a young man walking down a deserted beach just before dawn. In the distance he saw a frail old man. As he approached the old man, he saw him picking up stranded starfish and throwing them back into the sea. The young man gazed in wonder as the old man again and again threw the small starfish from the sand to the water. He asked, “Old man, why do you spend so much energy doing what seems to be a waste of time.” The old man explained that the stranded starfish would die if left in the morning sun. “But there must be thousands of beaches and millions of starfish!” exclaimed the young man. “How can you make any difference?” The old man looked at the small starfish in his hand and as he threw it to the safety of the sea, he said, “It makes a difference to this one!” ~ Author unknown


I had the opportunity to talk to the Coalition in Virginia that helps to craft the State Cancer Plan. We spoke for about an hour and I actually got frustrated! I have to decide whether to sign Mattie Miracle up for this task. At the moment, there is NO mention to childhood cancer in the plan and there seems to be a mind set that only certain things can be added to the plan. Translation.... there isn't room for psychosocial care and support. For various reasons, which I won't go into here. However, I don't take no for an answer and said I was going to comb through every State plan in our union to see how or if psychosocial care was addressed. Thankfully I was referred to this incredible website that interestingly enough is run by the George Washington University (my alma mater). The website is called the Goal Bank, and literally I can put in all the keywords I want to search and up pops the information for EVERY state. I can't tell you how much time that saved me!!! What would have taken me hours, took me minutes. 

GWU's Cancer Goal Bank:
http://smhs.gwu.edu/cancercontroltap/goalbank?title=&field_when_value2%5Bvalue%5D%5Bdate%5D=&field_patient_population_value%5B%5D=children&=Search

To look up the actual cancer plans by State:
https://www.cdc.gov/cancer/ncccp/ccc_plans.htm


So what did I learn!? I learned that ONLY, I mean ONLY FIVE states in our Country have cancer plans that address childhood cancer. In the other states there is NO mention, as if children don't get cancer. When I did a search using the Goal Bank and plugged in the keyword, "children," I found 12 states covering children's issues. But these are broad health issues like the exposure to secondary smoke, the importance of sunscreen for UV protection, and nutrition and exercise concerns. Here are the five states below that make mention in their goals to anything childhood cancer related. 

DC: 

1. Improve the policy and regulatory environment affecting access to pediatric and adult palliative care services in the District

NC: 

1. Enhance the early diagnosis, treatment, and quality of life for those individuals diagnosed with childhood cancer and their families 

NJ: 

1. To enhance the quality of life of the child, adolescent, and/or young adult patient with cancer from diagnosis through treatment to survivorship across the life span
2. To foster the psychosocial health of the child with cancer and the family
3. To improve care for adolescents and young adults diagnosed with cancer through encouraging participation in clinical trials
4. To promote awareness of palliative care strategies for the child with cancer among healthcare professionals, patients, and families. Pain management can be used as an example of how these strategies can be implemented successfully
5. To reduce/eliminate suffering and death due to childhood/adolescent cancers and to provide survivors and families the services needed to live meaningful and productive lives

TN: 

1. To reduce/eliminate suffering and death due to childhood/adolescent cancers and to provide survivors and families the services needed to live meaningful and productive lives

WY: 

1. Foster the psychosocial and physical health of the child with cancer and the family
2. Facilitate and monitor pediatric cancer needs in Wyoming
3. Increase education related to appropriate end-of-life care for childhood cancer patients

I am truly enthralled with New Jersey's Cancer Plan. In fact, they have a dedicated chapter to childhood cancer and a whole section to psychosocial care and quality of life. If one state can put psychosocial care in its plan, then the rest need to evolve with the 21st century! NJ to me stands as an excellent model and it should be easier to sell this to another state when someone else has already invented the wheel (in this case the wheel is in NJ). I wrote to the NJ coalition tonight because I noticed in their state cancer plan there were goals to create evidence based psychosocial standards of care. What they want to do at the state level, we have done on the national level. Therefore, I wrote the note below and sent it tonight!

New Jersey's Plan:
ftp://ftp.cdc.gov/pub/Publications/Cancer/ccc/new_jersey_ccc_plan_2008_2012.pdf

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Dear................

I am contacting you as a childhood cancer advocate and the President of the Mattie Miracle Cancer Foundation to commend you and the Coalition for the comprehensive State Plan that you created. I am beyond thrilled to see that Childhood Cancer has its own chapter, and for the inclusion of screening, and psychosocial care for the entire family system. I have been searching through many State plan goals by using the George Washington University's Goal Bank and I am stunned that only five states in our union even mention childhood cancer in their plans. I think NJ's plan is a beautiful model for other states to emulate. 

I am writing to you because I noticed on p.112 of the plan it says......

CC-4.2.1 Conduct a literature review to investigate psychosocial standards of care.

CC-4.2.2 Collaborate on a consensus statement for psychosocial standards of care with key stakeholders.

I wanted to alert you that the Mattie Miracle Cancer Foundation had the vision in 2012 to create evidence based psychosocial standards of care for children with cancer and their families. We funded a three year long project that pulled in over 80 health care providers around the Country, Canada and the Netherlands to methodically develop standards. I want you to know that these standards were published in Pediatric Blood & Cancer in December of 2015. We are now in the process of working on implementing the standards at treatment sites around the Country. The reason why I am alerting you to this is because these exact goals were mentioned in your State plan, and I am so happy to see your group felt they were needed. What the plan is recommending on the State level, we have accomplished on the National level and I wanted to make sure you and your team had access to these historic standards. We paid for open access to the Standards indefinitely. They can be found at www.mattiemiracle.com/standards.

My husband and I created the Foundation in 2009, two months after we lost our only child, Mattie, to bone cancer. We learned through Mattie's battle that childhood cancer is not just about the medicine, which is why the focus of our foundation is to enhance awareness of the psychosocial issues and needs of children with cancer and their families and to increase access to psychosocial care services. We set out to develop evidence based Standards so that children and their families would be ensured optimal psychosocial care throughout the cancer trajectory. Thank you so much for your time and all your incredible efforts on the State Plan. Vicki