Thursday, October 12, 2017Tonight's picture was taken in October of 2008. Mattie was in the hospital managing treatment and that evening was a music night. I naturally can tell because our incredible musical duo of volunteers allowed Mattie to play with their keyboard. Jerry and Nancy were volunteers we met during Mattie's first week of chemotherapy. In fact, they showed up at a time when we really needed to forget our troubles and sing a long. They always came in the evening hours after work, so Peter got to experience their fun and antics. In fact, they were so fond of Mattie that they donated a keyboard to him while he was battling cancer. Of course after Mattie died, I donated it to the hospital so other children could experience the power and gift of music. To this day, Peter and I meet up with Jerry and Nancy for dinner on a periodic basis. I will never forget their kindness, good spirit, and games they played with Mattie. They always played a 'name that tune' game with Mattie. However, Jerry would email me before their visit to make sure whatever songs we was planning on playing, Mattie could identify. Speaks to his character, no?
Quote of the day: To say nothing is saying something. You must denounce things you are against or one might believe that you support things you really do not. ~ Germany Kent
SIOP is an interesting conference because at least two or three conferences are going on simultaneously. The majority of attendees are oncologists, and most of the sessions are medically related. However, the other two components are a parent track and a mental health track. The problem however with all of this is the three tracks don't necessarily interact with each other and hear one another's perspectives. The doctors stays with the doctors, the parents with the parents, and the mental health folks with the mental health folks.
I attended two sessions in the morning. I frankly did not go in with the mindset of challenging anyone. After all, in this audience I am not the clinician, just the parent. But in some cases, as tonight's quote points out..... you can't stay silent.
One researcher presented her study on the long term fate of parents, parents of children who survived cancer. She was very clear that soon after treatment ends these parents return to normal, or in some cases better than normal. Meaning in comparison to parents of healthy children, these parents reported lower mental health concerns. That was deeply troubling to me, since this has NOT been my experience with any parents of a survivor that I have talked to, throughout the Country!
But then she presented socio-economic data, and this bar graph. She wanted to let us know that she looked at employment status of mothers and fathers, both those with healthy children and those who had a child cancer survivor. Overall, the employment situation of parents of survivors was significantly different from control parents. In both populations the majority of mothers was employed part-time. However, overall, more mothers of survivors were not employed compared to control mothers. She truly had no comprehensive way to explain this other than perhaps it is because Switzerland (where the study was conducted) doesn't have medical leave policies like we do in the USA. When it came time to ask her questions, I couldn't help myself. To me there were so many blaring issues. So I first told her that I couldn't understand her data which indicated that the trauma experienced by parents is not significant at predicting issues into the future. That I was perplexed by what she was reporting, given our practical experience working with families. This is NOT what we are seeing and hearing. But then I asked her whether she thought there was a psychosocial link as to why mothers of childhood cancer survivors couldn't go back to work when treatment ended. To me this is a no brainer. She couldn't accept what I was saying, as she was adamant that psychosocial issues aren't a factor and also dissipate over time for parents of survivors. She lost me and the more I kept at her the more she pushed back at me. Mind you this discussion was in front of an entire audience of researchers/clinicians.
When I removed myself from the microphone, two other parents stood up and wholeheartedly agreed with me and also challenged her. During the break, we convened and the parents really thanked me for standing up and speaking the reality. It is my hope that this researcher has learned one important lesson from this. The lesson is it is always important to run her findings passed parents, or at least be open to possibilities in her interpretation of the findings.
1 comment:
Vicki, Since I ranted two long text messages back to you about what this researcher reported with erroneous date to support, I will spare you a repeat. Suffice to say, my experience in being in the lives of families who have a child fighting Chikdhood Cancer, does not resonate with what she reported. Parents of survivors wait always for the other shoe to drop. Years after their child has finished treatment, they are still dealing with their child's late effects from chemo received, receiving news of secondary cancers or burying their child who is now a teen or young adult whose body was so damaged during treatment, that death from heart attacks or organ failure occur. Are there any statistic to predict which children, will experience this - no. A diagnosis of Childhood Cancers changes forever the life of a family. Parents grieve forever when their child dies after suffering terribly and survivor parents worry constantly. It is not surprising more moms of survivors work part time as even when treatment finishes, the schedule of follow up would be very hard to keep if one had a full time job. Why have an open mike for parents to comment if you are going to disagree rather than listen and take in what a parent offers. After all, they lived the life.
I loved seeing Mattie at the keyboard. Every once in awhile, you post a picture of Mattie doing something, I did when I worked. I bought a keyboard for the kids to play and for us to sing. That couple sound like special people! I am glad to know Mattie had this experience. Also Inalways like his different pajamas. I think it is so special when kids wear their own clothes when they can in the hospital. While, it is not always possible when it is, it is good to see.
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