Mattie Miracle Walk 2023 was a $131,249 success!

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 15, 2018

Thursday, March 15, 2018

Thursday, March 15, 2018

Tonight's picture was taken in March of 2005. I entitle this photo.... The Eclectic Look! I just love how Mattie was wearing his Easter sunglasses all around the living room and putting stickers on himself. This was a boy on a mission, who knew how to have fun and how to get all of us to laugh. 



Quote of the day: I spend half my time comforting the afflicted, and the other half afflicting the comfortable.Wess Stafford


When I came across this quote tonight, I knew it had to go on the blog. Today is the Ides of March, which is typically an ominous day, synonymous with bad omens. It was that kind of day today for me, with one thing after the other happening. 

Let's start off at my urologist's office. Last Tuesday, I had an appointment scheduled with the doctor. I always see her at her DC location. However, last Tuesday, when I showed up at the doctor's office, I was told she was in her McLean, VA office. Therefore my appointment was in McLean but I was in DC. I have never seen my doctor in Virginia, so I was perplexed with how I got assigned to that office. Needless to say, I chalked it up to a computer error and came back to the office today.

When I arrived today, I signed in and paid my co-pay. I then went to sit in the waiting area. While sitting I learn from other patients that the doctor was running behind. I don't mean by 15 minutes, try 90 minutes! Some ladies were sitting in this waiting area for over an hour already! Meanwhile, I noticed a small office adjacent to the waiting area. When I say small office, it was more like a small cubical space with its own sliding door. In that small space was a woman who was talking VERY loudly as she was helping patients. Patients who needed procedures and surgeries scheduled. Literally I could see the patient's face and hear exactly what was needed regarding their medical care. It was blatantly a HIPAA violation as everyone in the waiting room could hear and therefore access other patients' personal health care information. Observing this for several minutes absolutely infuriated me. Especially since I could tell there were many anxious people in the waiting room worried about their own health. 

At that point, I marched up to the office receptionist. She remembered me from last week. Which helped. I told her I wanted to make a formal compliant about the HIPAA violation I was watching unfold. I told her I wanted to speak to the office manager. Guess what? The person in the small office divulging personal health information to the rest of us WAS THE OFFICE MANAGER. So I then asked to speak to her boss. While I was waiting his arrival, I put my observation and complaint in writing.    

I then asked the receptionist how delayed the doctor actually was. When she told me I probably wouldn't be seen until 1pm (I came at 11:30am), I told her I wanted to reschedule my appointment. She wanted to try to accommodate me but because the computer system is antiquated there was NO WAY to reimburse me for my co-pay. So I had to suck it up and wait to be seen. However, by that time, I had all the office staff hopping. I also spoke with the office manager's boss and gave him a mouthful about computer glitches making erroneous appointments, overbooking of the doctor, and the most egregious...... sharing of personal health information in an open forum. 

I finally did get to see the doctor and I shared with her the dysfunction she may not be aware of outside of the exam room. If I hadn't been seeing this doctor for 8 years, I would NEVER return after today's experience. Fortunately the doctor knows me and took what I said seriously. However, when I left the exam room, and went back out into the waiting area, the same patients were still waiting to be seen. I chatted with several of them and they explained to me that they are leary to complain because they felt no one would care and they feared this would impact the type of care received. At one time I may have been more timid in a health care setting as these ladies. But here's the thing..... what I learned from Mattie's cancer battle was that the most assertive and persistent patient/family member, gets access to the most effective care. A sad commentary, but it is true. 

I could have gone through this appointment today and only looked after myself. It would have been easier that way, but because I live with the constant lens of the patient/family, I felt I couldn't keep quiet. That changes in the system needed to be made to make the experience more patient friendly. The boss of the office manager told me that space is a commodity on that floor. In essence he was trying to give me an excuse for why the office manager is relegated to that small office space and divulging information. He also tried to tell me that the reason the doctor was running so behind was because she talks to her patients and sends a lot of time with them. I accepted NEITHER excuse and pushed back on him. First of all, space maybe a commodity, but it is his responsibility that the office is HIPAA compliant. So put someone else in that space! In addition, I view it as an administrative/managerial error that patients are overbooked. So I said.... don't blame it on the doctor for doing her job. This was only part of my day, but you get the picture!

1 comment:

Margy Jost said...

GOOD FOR YOU VICKI!!!!!!