Tonight's picture was taken in October of 2008. That week we took Mattie to NYC to be evaluated by doctors at Memorial Sloan Kettering. In between hospital visits, we tried to take Mattie on several adventures. To the natural history museum for example. Here we snapped a photo of us together in front of the museum. As you may surmise from Mattie's expression...... he was not happy!
Quote of the day: As soon as anyone starts telling you to be “realistic,” cross that person off your invitation list. ~ John Eliot
While at Curefest on Sunday, I mentioned we met many families who visited us under our Foundation tent. Typically at past events the parents we have spoken to experienced the death of a child. This year was a bit different. Instead, we were visited by many families whose child is a survivor of cancer. Great no? Yes of course, but with survivorship comes a host of not only long term physical effects, but numerous psychosocial issues. Issues that not only lie with the child, but typically impact the whole family.
What am I taking about? Well here is an example. One mom explained that her daughter was diagnosed at two years of age. While undergoing treatment, the treatment team advised the child's parents NOT to discipline her. In addition, with every procedure, scan, needle stick, or other unpleasantness, the child was given a toy or gift as a reward. I was absolutely tracking her, since Mattie received so many items in any given week at the hospital that after about a year of this, our home looked like a warehouse. In any case, now that the child is off treatment and older, she has become a behavioral problem at home and at school. The mom explained that her child is not used to be disciplined and therefore doesn't listen. In addition, the child expects a toy or prize with everything she does, and without these incentives will not comply with directions. The mom was exasperated by this, unsure how to manage the dynamics between siblings, and was concerned that this is also affecting her marriage. In essence she was telling me that every member of the household is traumatized and unable to function, come together, and move forward. Meanwhile the school wants to diagnose the child with ADHD, but the mom is quite sure this isn't the correct diagnosis. Instead, those in the community discount the role that cancer played in the development of these issues!
If I did not experience Mattie's cancer for myself, I probably would also assume that once medical treatment is over and you are deemed "cured," that this is a celebration! That things return back to normal, the way they used to be. However, I personally know this couldn't be further from the truth. Instead, as we say at Mattie Miracle..... the psychosocial issues do not end when the medical treatment does.
In any case, the stories I heard have been rolling around in my head for two days now. I continue to be perplexed by the scarcity of mental health resources in the community for childhood cancer families. Sure there are therapists who specialize in trauma care, in helping people cope with life threatening and chronic illnesses, and the list goes on. Of course the big difference is that most therapists have little to NO experience working with childhood cancer survivors and their family members. Which is why so many families are floundering. They turn to the community for help and in many cases become frustrated and then disengage from therapists and from seeking help.
So I spent time digging around national websites today to see if there were therapist referral networks that specialize in supporting cancer patients and their families. This is crucial, because parents contact me from all over the country, looking for mental health referrals. I would love to be able to direct them to a well researched database of qualified providers! However, to my knowledge no such comprehensive database exists. There is a great need, but putting together such a database is a major undertaking. None the less, I threw the thought out there to our core research group tonight, because either they will locate a resource and share it with me, or perhaps will even bring such an idea back to one of their institutions or professional associations. It is hard to believe that we live in the era of technology, and yet such an on-line referral network doesn't already exist.
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