Friday, March 2, 2012Tonight's picture was taken in August of 2002. Mattie was four months old and truly loved rice cereal. In fact he loved the notion of eating and like all babies had his favorite tastes. The things he did not care for (anything with apples in it!!) came right out of his mouth and then he would make an hysterical facial expression. Almost like he was sucking on a lemon. Peter and I would crack up from laughter seeing that lemony face. What I want you to notice was Mattie was eating in Peter's lap. Mattie wasn't wild about his high chair, and particularly disliked being confined and strapped down into it. I would say that Mattie taught us one thing as parents.... the importance of creativity and that there are always multiple solutions to a problem.
Quote of the day: I would rather make mistakes in kindness and compassion than work miracles in unkindness and hardness. ~ Mother Teresa
Over the course of Mattie's battle with Osteosarcoma, my faithful readers know that Peter and I switched oncologists. I am not sure my readers know the full extent of why I switched, but one day, when I write my book, you will learn in detail about this decision. However, the doctor we switched to managing Mattie's case was Kristen. When Kristen took over Mattie's case, she already knew Peter and I by reputation and had several interactions with us in clinic. One may say that you pick a doctor because he/she is competent and is highly skilled. Yes I agree with that, but especially in oncology, you need skill, but you also need to find the right personality match to work with that respects your whole family system. Kristen was that match for us. What Kristen was able to achieve, was our TRUST! Kristen was always honest with us, yet hopeful, but also included us on decision making and treatment plans.
I overnighted my scans to Kristen at Vanderbilt University. She met with the head of the oncology department today to review my scans and discuss next steps. Kristen called me today and we spoke for about 40 minutes about the consultation and she referred me to my next doctor visit in Bethesda. To a person who has skills with a flexible scope, who may potentially be able to get a deep tissue scraping near my mass. The ironic part is Kristen said after seeing my scans, she can see why I have bladder issues. I stopped her and asked her why. Because you have to understand that the last four people I consulted with said there is no connection between this mass and my bladder issues. Kristen let me know that the scans indicate that my bladder is being pressed on by this mass, which explains why I am running to the bathroom and feel pressure all the time. Finally SOMEONE who is making sense to me!
So next week, I will be adding the sixth person into my treatment plan, with hopes that he can actually shed some light on being able to get a tissue sample. At first Kristen thought the doctor in Bethesda who I am being referred to may be retired, but then she said if anyone can convince someone to reverse his retirement decision and come back to work, it would be me. Fortunately that won't be necessary since he does have a private practice in Bethesda and is associated with Georgetown Hospital.
As Kristen knows, dealing with me medically, when there is a serious issue, is challenging. I am a force to be reckoned with, and not every doctor can handle me. Not because I am emotional, which I can be, but because I ask a lot of questions, and I remember everything you say to me. If I find you tell me one thing about my condition, and then later sing a different tune, I am going to call you out on it. I don't accept what a medical doctor tells me outright (assuming we are talking about a serious medical issue), and frankly no one should. What I do know is that a good doctor can handle the criticism and is open to exploring options and questions with you. As my doctor friend, Dave, in Washington State said to me.... "Vicki you have every right to ask as many questions as you want and to seek as many opinions that make you comfortable." Yes Dave is my friend, but in essence to me that is the response of a competent and effective doctor. As I told Kristen, she had no idea that signing up to care for Mattie was really a package deal, and now she is dealing with me. However, her response was that there is nothing she wouldn't do for me. See why I love her? Competent, capable, and compassionate!
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