Mattie Miracle 15th Anniversary Video

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

March 28, 2017

Tuesday, March 28, 2017

Tuesday, March 28, 2017 -- Mattie died 393 weeks ago today.

Tonight's picture was taken in April of 2002. Days after Mattie was born. Pictured with us is my dad. My mom and dad came into town for this milestone moment. What I remember about pregnancy with Mattie was that I looked pregnant for about 6-8 months after I gave birth to Mattie. This isn't just me being self conscious, I literally had people asking me was I expecting a baby?! I attribute this long term pregnancy look to the challenge I had delivering Mattie and then my bladder surgery following my c-section. I was a very sick mom, but was happy that Mattie was healthy. Or so I thought.

Quote of the day: The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient's hopes are the physician's secret weapon. They are the hidden ingredients in any prescription. ~ Norman Cousins


I LOVE Norman Cousins' quote! There is a lot that can be said for having HOPE. This is NOT a term or feeling a majority of medical doctors are familiar with, nor do they get the power of this word. Yet the words physicians choose can either instill it or squash it completely in their patients. 

My dad had surgery today. Keep in mind that my dad has been ill since JANUARY. Yet according to his urologist, could only be scheduled today (two months later) for surgery. After waiting months for this doctor to perform the surgery, he told my mom today that there are no guarantees that the surgery would correct the problem! ARE YOU KIDDING ME!? All I can say is this doctor should consider himself lucky that I wasn't in the room. Besides having no bedside manner and being particularly insensitive to my dad's symptoms (which have caused negative consequences on his quality of life), I feel we can now also add HOPE hater to his resume. Who on earth wants to hear that your loved one underwent surgery for naught?! Honestly!!! What was he thinking? Whether that is true or not true, there are ways to convey information while also providing hope. I also have learned that what patients want is doctor buy in. Buy in to working together to find solutions and it is a powerful feeling to know that if something doesn't work, the physician is in it for the long term with you. That alone is healing! In either case, this urologist and I could never work together. I would have given him his walking papers on day one. Having gone through three urologists myself, I speak from experience. No doctor should be allowed to treat a patient this way, and if he doesn't like to be challenged..... well that is too bad. He can take his God complex somewhere else. 

I turned to the internet today and literally googled..... why are medical doctors insensitive? A whole list of articles popped up (I included two links below as examples). Articles trying to explore how such a quality has evolved and has been nutured. Some articles claim that medical students are selected based on being bright and the top of their class, but they aren't being admitted based on personality. No KIDDING! What I noticed though is that articles are all over the map on the issue of sensitivity and compassion. Some say that these qualities aren't rewarded and nurtured in medical school, or that doctors have to protect themselves from patients and identifying with their feelings in order to make difficult decisions, or better yet that doctors are regulated by the economy and health insurers and therefore can't afford to spend the time listening and talking through issues. Whatever the explanation, all I can say is WOW! If they were treating a robot or an inanimate object, I could appreciate this, but human beings have feelings and thoughts and both need to be considered especially when diagnosing and treating a medical condition. 

What particularly irritates me is that some doctors feel that they know better. My dad's urologist is this way and doesn't like to be questioned. Mattie's first oncologist was like this as well. I remember him once saying to me in front of my mom and Mattie's art therapists...... GONE ARE THE DAYS when patients just listened to their doctors! If you want to pet me backward, you just say that to me! I snapped his head off in front of a group of people. At the end of the day, if a doctor doesn't treat you as part of the team to get you better, then they really are missing the boat. 

It is my hope that tomorrow is a better day for my dad and my mom. 


Why Are Doctors Such Jerks? 
http://www.chicagoreader.com/chicago/why-are-doctors-such-jerks/Content?oid=880047

Why Your Doctor Is Such an Insensitive Jerk
http://www.cnbc.com/id/48845789


1 comment:

Margy Jost said...

Vicki, It is my hope too, that tomorrow is a better day for your Dad & Mom. I also wish, they could fire this Dr. and find one that better fits the needs your Dad has along with a compassion that both your parents need.

I, personally, now look for Drs. that are excellent in their Specialty & and have a kind heart. I have not been 100% successful but have eliminated any who could not at least engage in a conversation, remembering, I am the patient.

I truly believe you can't teach the kind of kindness & compassion, we both feel is necessary for a Dr.to have along with excellence in his Specialty. People are just born with this capacity. Medical school can teach or give guidelines for good bedside manner, the importance to have a good listening ear and learning to respect your patients, thoughts and questions but the can't teach the compassion and kindness, I want. I say this because in my life, I have had a handful of Drs. who truly embodied naturally these traits. Right now I have a few in particular who go above and beyond in giving me care. Having these Physicians care makes it even more impossible to not notice what is missing with the rest. It begins with looking at your patient as a real person! The best Physiciaans have caring hearts! It is not as hard to find a qualified expert in the medical Field. It is much harder to find one with all the medical expertise who combines that with compassion, kindness, good listening, partnership with their patients and one who remembers at the end of the day, we all need HOPE!