Thursday, October 23, 2014

Thursday, October 23, 2014

Tonight's picture was taken in October of 2004. Mattie and I posed by a pumpkin cut out at one of the fall festivals we took him to that weekend. Our weekends back then were busy. We always tried to keep Mattie occupied, engaged, and outside. Outside was KEY to Mattie's happiness. He really thrived on open space and fresh air. The irony is after spending time raising him, he conditioned me to needing the same thing! In the background of this photo, I can see big cut out displays of Dora the Explorer, Boots, and Blues Clues. All characters Mattie loved to watch on TV and to read about in books. I remember how excited he was to see all these sightings that day and of course seeing the familiar encourages the child to want to engage in the activity attached to the picture!


Quote of the day: At first, the drudgery of mastering your craft is a prison—boring, slow, and with an awareness of how much time you’ll have to put in. But somewhere along your prison sentence, you come to see the time you put into your work not as dull and meager, but as meaningful—and you realize that your prison has become your palace, your place of escape. ~ Jarod Kintz



This is an enormous conference! In addition to being enormous there are too many professional groups mixed in with each other. If these groups mingled I suppose that would work out okay, but like ALL groups, they turn inwards and stay within their own enclaves! So doctors stay with doctors, parents with parents, and mental health providers with themselves. Unfortunately in a hospital setting we all have to work together! Which is why training opportunities really should in a way give us a way to hear and learn from one another. But it doesn't work out that way! FOR many reasons, which I won't elaborate on here! 


Mid-day, Peter and I went walking around the exhibit hall. For such an enormous conference, I was actually stunned to see the lack of exhibitors in the hall. I am used to counseling conferences in which there are so many exhibitors, with booths for as far as the eye can see. NOT here!!! As we were walking around, I was hit by this scene!!!! I use the word HIT in shock!!! The scientific name maybe mifamurtide or Mepact, but in our day we called the drug MTP-PE. This was a form of immunotherapy that Mattie started at Memorial Sloan Kettering in January of 2009. This drug is used for metastatic osteosarcoma children. When I saw this display with ALL the faces of the children on it, I wanted to scream. Clearly they were promoting this drug as effective and saving the lives of every child on display! But of course it did not save Mattie. In my book, it only made him sicker. In fact, with every administration, he got intense fever and chills. I saw NO benefits to it! Of course scientifically one could say Mattie would have died with MTP-PE or without it, which is most likely true. But as Mattie's mom, this drug served no purpose and seeing it today incensed me, as did hearing their reps talking about it with people!

We then went to see several of the psychosocial poster sessions. There were hundreds of posters on display. But the psychosocial presentations and posters are what we truly gravitate to. Clearly treating childhood cancer is of importance in the overall picture, but to me this is a long time endeavor with no end in sight. Whereas psychosocial support is something tangible, it is something that children and families need NOW, each day, into the future, and they are skills and support which can be directly provided now. Not something that has to be magically hoped for and created or promised in some distant future! Putting that all aside, the reality is that childhood cancer has devastating psychological effects on a child and the family and support has to be provided in order for the medical treatment to actually be effective. 

Two posters which resonated with me are below. We always hear about the impact of childhood cancer on a marital relationship, but this poster below intrigued me. Mainly because instead of the typical judgmental lecture or advice that can sometimes be dished out by support staff, this poster assessed feedback from parents directly. In reality the research is all over the place. Childhood cancer can affect a marriage and at the same time it can strengthen a marriage! Well these are two opposite and opposing statements! It can't do both, or can it?! 

The second poster talks about the existential challenges of childhood cancer for children and the benefits of creative therapy. I saw this first hand with Mattie. When Peter and I saw this poster, it caught our attention immediately!!! It reminded us of Mattie.

This study investigated the effects of childhood cancer on the parents' relationship. Some past studies report that childhood cancer can have a negative effect on the relationship and others that it can even strengthen it. Though it may not ever be known whether or not the relationship suffers or strengthens as a result. What is little understood is how the cancer experience affects the relationship between the parents and what might health care professionals do to support the relationship. The state of the relationship prior to cancer had, in many situations, important implications on how the relationship fared during and after the cancer experience. This cannot be the only predictor however, as some challenged relationships thrived and repaired as a result of the experience. The strongest finding in this study is that the relationship can be affected in intense ways, even to the surprise of the couples and they offered advice to other couples facing this experience. The participants also had advice to offer health care professionals about things that are helpful and not helpful to say and do regarding supporting them as a couple. The relationship between the parents has profound effects on the health and well being of the child and any support that can be offered in this area is preventative healthcare.

To date, there has been minimal research that details the experience of children diagnosed with cancer in their existential predicament. The purpose of this poster was to describe findings that speak to the existential challenges experienced by children living with cancer. Within the cancer world children moved between feelings of anxiety (generated by existential worry, existential longing, and the existential vacuum) and existential growth. As children worked within the drawing tool, a portal to their inner worlds was opened, which allowed them to explore their anxiety through drawings. In many of the children's drawings the intimate connection between the physical symptoms and the emotions that defined their existential challenges were clearly evident. Connection between the physical symptoms and the emotions that defined their existential challenges were clearly evident. This research provides evidence that the active engagement of children's imaginations through the use of a computer-drawing tool may have significant therapeutic value for assisting children with cancer to explore, understand, and manage their physical suffering, as well as the associated anxiety they live with. The use of symbolic forms of communication including drawing, offer health-care professionals new possibilities for enhancing the therapeutic conversations and interactions they have with ill children and their families.