Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 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: 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

Random Shots of Mattie, Family and Friends

July 12, 2016

Tuesday, July 12, 2016

Tuesday, July 12, 2016 -- Mattie died 356 weeks ago today. 

Tonight's picture was taken in July of 2005. It was our tradition.... when we drove down to the Outer Banks of North Carolina, we would stop at Morris Farms along the way. There are many wonderful farm stands on the side of the road, but the one that is the most memorable to me is Morris Farms. Just amazing produce and other goodies! In addition, they have all sorts of farm equipment out front, and naturally Mattie gravitated to the red tractor!

Quote of the day: Of pain you could wish only one thing: that it should stop. Nothing in the world was so bad as physical pain. In the face of pain there are no heroes. George Orwell

I went to see a rheumatologist today, because my physical therapist had encouraged me to get checked out for fibromyalgia. My therapist has been working with me since early March. Though there are slight improvements, I still have many issues. I have never seen a rheumatologist before, but I went armed today with a complete history (that I filled out at home, so I would have more time), and I also had copies of my blood work and MRIs. All things I had completed in February when very ill. 

It was an interesting visit, in which he asked me many questions and seemed to be honed in on two things.... do I have a family history of any kind of arthritis (which I have), and have I ever experienced any traumatic event. A childhood cancer diagnosis is one trauma, but then there were NUMEROUS traumas throughout Mattie's 15 months of treatment and beyond. Once I told him that Mattie died from cancer, he said he was sorry and then really looked for no other explanations after that!

He gave me an examination and once he did (based on all my other testing data which ruled other things out), he felt confident that I have fibromyalgia. He took five vials of blood from me today for further testing and also wants me to do a sleep study. As Peter can attest to...... post-Mattie's death, I have become a horrible sleeper and am up constantly during the night and tossing and turning. This doctor has ordered me a sleep test because he wants to know if there are any other explanations OTHER than fibromyalgia for my poor sleep. According to him sleep is very necessary to manage this disease, along with aerobic exercise. He already gets that I refuse to take medication, given my sensitivity and typically bad side effects to it!

Our society (and I should emphasize our medical community) believes that it is impossible to get a physical illness from stress and trauma. All I can say is look no further than me! I am a walking case study of what transpires when under an inordinate amount of stress. My mind and body kept it together for 15 harrowing months in the hospital caring for Mattie 24/7, but after Mattie died, everything fell apart. I think the conditions we lived under while caring for Mattie were horrible, and in a way I always say we were living on a medical battlefield. I feel this gave me some insight into how traumatized our military members must be when they come back from overseas. I still remember sitting next to Kevin on my flight to Los Angeles one year. He served in Afghanistan and literally we talked throughout the whole flight five hour flight. He was coming home to see his wife and children and had many concerns about this. He did not think I would get it, but then I told him my story. In many ways, we had many of the same symptoms, fears, and concerns. Despite our experiences being totally different. Different traumas, yet we related to each other perfectly.  

Therefore I am quite certain that stress and emotional concerns can produce physical illness, as well as physical illness (such as childhood cancer) can cause mental health issues and problems. It goes both ways and it is my hope at some point in my life time that the field of medicine truly embraces this reality and integrates both the medicine and psychosocial care into practice. 

Here is some information on Fibromyalgia.....................

Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles, or other tissues. Like arthritis, however, fibromyalgia can cause significant pain and fatigue, and it can interfere with a person’s ability to carry on daily activities. Also like arthritis, fibromyalgia is considered a rheumatic condition, a medical condition that impairs the joints and/or soft tissues and causes chronic pain.

The causes of fibromyalgia are unknown, but there are probably a number of factors involved. Many people associate the development of fibromyalgia with a physically or emotionally stressful or traumatic event, such as an automobile accident. Research shows that people with fibromyalgia typically see many doctors before receiving the diagnosis. One reason for this may be that pain and fatigue, the main symptoms of fibromyalgia, overlap with those of many other conditions. Therefore, doctors often have to rule out other potential causes of these symptoms before making a diagnosis of fibromyalgia. 

Another reason is that there are currently no diagnostic laboratory tests for fibromyalgia; standard laboratory tests fail to reveal a physiologic reason for pain. Because there is no generally accepted, objective test for fibromyalgia, some doctors unfortunately may conclude a patient’s pain is not real, or they may tell the patient there is little they can do. Criteria established by the American College of Rheumatology (ACR) for a fibromyalgia diagnosis include: a history of widespread pain lasting more than 3 months, and other general physical symptoms including fatigue, waking unrefreshed, and cognitive (memory or thought) problems. 

No comments: