Thursday, August 9, 2018

Thursday, August 9, 2018

Tonight's picture was taken on August 8, 2009. Three days after we learned about Mattie's terminal diagnosis. One of Mattie's wishes was to get a ride-on vehicle. This was actually something Mattie always wanted, even when he was well. However, when Mattie was healthy, my response was always NO. This toy vehicle was costly and I figured it would be a novelty that Mattie would only appreciate for a short time. My tune changed when we learned that Mattie was going to die. My parents bought this vehicle for Mattie and Peter and I went to the store to pick it out and brought it home. What you see in this photo was Mattie's surprise as Peter wheeled him out to the deck to see the ride on vehicle in its box. Mattie greeted the box with a big smile. 


Quote of the day: We can do no great things – only small things with great love. ~  Mother Teresa



Peter sent me a link to an article today entitled, Interventions crucial to offset negative impact of psychosocial symptoms on childhood cancer survivors, which was published on-line in Hem/Onc Today. When Peter sent it to me, he encouraged me to read it because he said something was missing! I knew exactly what he was talking about even before reading the article. What was missing??? Any mention of the Psychosocial Standards of Care. We are on a mission to bring these Standards to the attention of all researchers. Ironically what I find when I contact authors about their oversight, they do admit to knowing about the Standards. Interesting! So why not mention them in the first place, especially when charging the childhood cancer community to advocate and demand a standard of care. 

In any case, the article highlighted the psychosocial issues childhood cancer survivors face. As I always say, the psychosocial issues DO NOT end when the treatment does and I strongly believe this is the case for patients and their families. Here are some highlights from the article:

1. There are approximately 420,000 survivors of childhood cancer living in the United States. Although a majority of survivors are deemed psychologically healthy, multiple factors can affect quality of life and can increase risk for difficulties.
2. Studies have found that survivors of childhood cancer are likely to develop mental health symptoms including anxiety, depression and suicidal thoughts. Several factors, including low income, lower education and unmarried status, could also contribute to poor physical and mental health.
3. These adverse outcomes are more prevalent among survivors who had disease or treatment involving the central nervous system, this includes brain tumor survivors and survivors who received intrathecal or high-dose IV chemotherapies, such as methotrexate.
4. Late effects have been found to be associated with psychological adjustment. Survivors of CNS tumors are at high risk for poor adjustment related to CNS-directed therapy. In addition, survivors of bone tumors are at risk for psychosocial problems linked to physical immobility and pain on adjustment.
5. If not appropriately treated, psychological symptoms in childhood and adolescence can place survivors at risk for continued or worsened mental health symptoms and engagement in risky health behaviors later in life.

When I wrote to the author of this article today, I pointed out that she mentioned..... "For psychological disorders such as anxiety and depression, standard of care often includes psychotherapy, such as cognitive behavioral therapy with a licensed professional, and/or medication management under the supervision of a physician." I was happy that a standard of care was mentioned and wanted to alert her that such Standards already exist. Specifically Standard 3 addresses the necessary psychosocial followup that is needed for survivors in order to enhance their quality of life.

I felt it was important to bring these Standards to her attention and I await her response! However, what did catch my eye was her mention that children who receive high-dose IV chemotherapies, such as methotrexate, can have cognitive effects. Cognitive effects may look like... an inability to concentrate, to focus, and to remember information. All of which impact the ability to learn. 

Why I am mentioning this is because I have argued with other researchers about the negative cognitive effects on all children treated for cancer, not just children treated for cancers of the central nervous system (brain cancer). So I was happy this researcher highlighted this reality as well as the reality that children treated for bone cancers are at risk for psychosocial problems. Though Mattie never made it to survivorship, I always saw how cancer treatment effected him with constant pain and the inability to walk and be physically independent. Bone cancer treatment is horrific and it has real psychosocial consequences, consequences that are RARELY mentioned by our healthcare community. So when they are mentioned, it is noteworthy!