Tonight's picture was taken in October of 2004. To welcome in the Fall, we took Mattie to several Fall festivals around our region. Practically one every weekend. The particular festival pictured here was in Leesburg, VA, and what I loved about it was that they had a petting zoo for kids. As you can see Mattie was very curious about this sheep! Animals, especially large ones, can be intimidating to children. Mattie was cautious, loved observing them, and really wanted to get to know these animals.
Quote of the day: Tired, tired with nothing, tired with everything, tired with the world’s weight he had never chosen to bear. ~ F. Scott Fitzgerald
For the past several weeks, I have been very busy with Sunny. He keeps me up, outside, and walking. However, this past Friday, I had a caucus to attend and luncheon. Which meant that I had to sit for several hours in air conditioning and then stand for the luncheon.... in more air conditioning. This is problematic for me. Many of the intense pains I had been experiencing for months prior to getting Sunny had begun to subside thanks to my walking routine and moving away from constantly sitting at a desk. I am not sure how one day away from this routine could impact how I feel, but it has! I am back to feeling achy all over, unable to find a comfortable position, and as such it affects my ability to concentrate and focus on anything.
That is just the physical result of Friday, but of course there is a psychological component to Friday as well. It is hard at times for me to see that only the biomedical components of care are discussed and these issues SOLELY get the ears of legislators. In addition to that frustration, I find that each year we attend the caucus the message is always the same. There is an update on the medicine, with a discussion of the hope for a medical break through and the elusive CURE. A word I can't stand, because once cancer is a part of your life, it isn't going away. There is always the threat of recurrence, not to mention secondary side effects and psychosocial concerns. Part of the issues that the medicine faces is that there isn't just one type of childhood cancer, there are hundreds and because the biology of childhood cancer isn't well understood, two children could have the same type of cancer, but respond differently to treatment. It makes for finding better treatments elusive if not impossible. After all, we have made very little progress from year to year. Keep in mind the FDA approved ZERO new drugs for childhood cancer this year, and only three new drugs in the last twenty years. Drugs that aren't targeted to all forms of childhood cancer either!
So why don't people advocate for strategies and services that can help in the here and now? I HAVE NO IDEA. It makes sense to discuss psychosocial care and invest in this care because it is this support that helps sustain the medicine and enhances the quality of life of children with cancer and their families. Psychosocial care isn't only needed during treatment, it is needed post treatment in survivorship, it is needed if there is a recurrence, and it is certainly needed at end of life and bereavement care. My running joke is that I will always have a job, because my job is to change a societal mindset and that kind of change moves at GLACIER speed.
This coming week, Peter and I have been invited to Indiana to receive an award at a National nursing conference. We are very honored to be the proud recipient of this award from the Association of Pediatric Hematology/Oncology Nursing, an organization that was our first professional endorser of the psychosocial standards of care. It is very generous of them to finance our travel and hotel stay as part of this award package and we look forward to meeting the Association leaders and thanking them in person for their support of the historical psychosocial standards of care!
1 comment:
Dear Vicki,
I understand completely every part of your blog. I too, am tired and I haven't tried to implement the importantance psychosocial effects on as large a scale as MATTIE MIRACLE HAS. I have, however, seen the difference a well run program can make in the world of cancer, now!!
It befuddles me that so much time is spent discussing the elusive cures for all the reasons, you stated. That is not to say, I want research to discontinue. Quite the contrary, I want Childhoid Cancer research made a priority. The reality though is there are so many Cancers that affect kids and very true that no two kids with the same diagnosis, receiving the same protocol, will respond the same. I have watched kids with a good prognosis at diagnosis and all the cards stacked in their favor for response, relapse on treatment and die. I have been a part of the world of Pediatric Cancer since 1993, and it is disheartening to know of the slow progress for better drugs, to watch kids die when they have hardly begun to live, to see a child return after years off treatment with a secondary cancer, & hard to watch survivors handle all the devastating late effects. There are so many ways in the area of psychosocial support that all these kids/teens/young adults could be helped.
Many people underestimate or discount the strong correlation of response a patient will have in both physical & emotional ways when a good program happens. I wish for MATTIE MIRACLE to make this care a true standard that no one can ignore.
I am sorry that one day out of your routine, returned all the pain. I am hoping, it is better at least to the point of tolerating it.
Your blog is a wonderful gift of honesty about so many things. Thank you!!!
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