Tonight's picture was taken around this time of year in 2008. How do I know this? Because on July 23 of 2008, Mattie was diagnosed with cancer. This is a day Peter nor I will ever forget. I will share with you how Mattie was diagnosed tomorrow. It is like a movie reel playing over and over in my mind. I can picture everything quite vividly! In any case, once we found out Mattie had cancer, Mattie felt like decorating with Christmas lights. So though it was July, out came the lights! It is funny how cancer put everything in perspective! Meaning that NOTHING really mattered at that point... we lived in that absolute moment.
Quote of the day: I've been making a list of the things they don't teach you at school. They don't teach you how to love somebody. They don't teach you how to be famous. They don't teach you how to be rich or how to be poor. They don't teach you how to walk away from someone you don't love any longer. They don't teach you how to know what's going on in someone else's mind. They don't teach you what to say to someone who's dying. They don't teach you anything worth knowing. ~ Neil Gaiman
Though I am not in total agreement with tonight's quote, I do get the sentiment and do appreciate the overall gist of what it is saying. I do think schools today are missing the boat! They are rewarding all the wrong things and parents are right up there promoting and pushing their kids to an absolute extreme. With grades and sports! It is no wonder the mental health profession will be alive and well for a very long time. I of course have a very perverse view of the world, because I saw my son develop cancer and die. But I can honestly say, whether he I got all straight A's in my lifetime, graduated with honors, and so forth, in the long run really made NO DIFFERENCE. It had NO IMPACT on whether I could save my son and he could have a healthy and happy life. For you see there is more to living than grades, excelling in sports, and sheer competition. I wish most of the women I associate with could understand this, but this falls on deaf ears!
Today I continued writing. I realize I am burning out quickly. I apparently snapped one person's head off today, and another person on the phone said I sounded very down. So fortunately I am getting away for two days this week. I need time away from the computer. I know I am brain dead, because I am reading things and I can't even process what I am reading.
I continued to write case examples from Mattie's cancer journey today. I am still on the patient advocacy section of the chapter. One of the examples I highlighted focused on the advocacy strategy of limiting! Limiting interactions between health care providers and the child, or in our case not only with Mattie but with ourselves. Research has shown that parents have to advocate at times to limit such interactions for their own sanity and for the effectiveness of care. Mattie's first oncologist was not a good match for our family. Peter knew this right off the bat, but I tolerated him for quite some time only because he was referred to us by Mattie's surgeon. But it was a mistake on my part to have put up with this doctor for so long, because it caused great tension between Peter and I. This oncologist was greatly insensitive.
I could make a list of all the things he did, and you most likely would say, are you kidding???!! He once told me he was going to have a worse day than me, and you have to understand while he was telling me this, Mattie was getting a chemo infusion. Then one day, he told me he was taking his family to see the Lion King over Labor Day weekend. He was very excited by this, and then wished me a good Labor Day weekend. This was our first weekend holiday in the hospital! Weekends in the hospital are very isolating, but holiday weekends are like ghost towns! Get the picture? It only got worse! On one occasion, he even told me that he longed for the days when parents did not question doctors (my mom and Mattie's art therapist overheard this one!!!), or how about the time when he gave Mattie a placebo of saline solution because he did not believe he was really in pain. So he denied him pain meds. Only to find out minutes later that pain meds were absolutely necessary because Mattie was actually in pain (Mattie's nurse was LIVID)! Are these not bad enough? Then how about the time when he and a PICU nurse isolated me outside in the PICU hallway from Mattie because they believed that I was the reason Mattie claimed to be in pain. They believed that Mattie acted up around me for attention and without my presence would not have any issues with pain! Of course they were WRONG and if it weren't for Tricia (our HEM/ONC nurse extraordinaire), there would have been ONE dead PICU nurse and doctor in the hallway that day. The lesson learned is that parents need to advocate to switch providers and find oncologists who are better personality fits for their family. This is a very important part of the treatment process. It is not just a nicety, it part of the therapeutic alliance. If we couldn't connect, engage, and dialogue with the doctor in a meaningful manner about Mattie's care, then it was hard for us to trust him about medical decisions.
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