Mattie Miracle 9th Annual Walk & Family Festival -- Raised over $97,000

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

August 2, 2016

Tuesday, August 2, 2016

Tuesday, August 2, 2016 -- Mattie died 359 weeks ago today. 

Tonight's picture was taken in August of 2004. Every August we would visit my parents in Los Angeles, it was a tradition. We all knew Mattie LOVED trains, so we introduced him to Travel Town in Griffith Park. Travel Town is a real experience for train lovers of ALL ages. The history of railroad transportation in the western United States from 1880 to the 1930's is the primary focus of the museum's collection, with an emphasis on railroading in Southern California and the Los Angeles area. The wonderful part about this is the trains are very accessible and children are allowed to walk inside, ring bells, sit in seats, walk on railroad ties, and so forth. Mattie absolutely loved it and despite living in Los Angeles during my high school years, I never visited Griffith Park until Mattie came into my life. 

Quote of the day: Idealism increases in direct proportion to one's distance from the problem. ~ John Galsworthy

I went back today for my follow up appointment with my rheumatologist. The doctor reminds me of my friend Dave from college. They look alike and their mannerisms are the same. Dave too is a doctor, but an anesthesiologist. The doctor went over all my blood test results with me, which were all negative. Remember that fibromyalgia is a condition in which everything else has to be ruled out first before it is diagnosed. We then discussed going to the sleep doctor. Understanding sleep is very important because I don't sleep well, and not sleeping exacerbates fibromyalgia symptoms. In any case, he could see the electronic notes that the sleep doctor sent him and noticed that the doctor already diagnosed me with sleep apnea. So he naturally assumed I did the sleep study! Funny, no? I was thrilled to see that this doctor is as perplexed as I am! He confirmed my suspicions about this sleep center. I do not care for doctors who already make their minds up about you without DATA! 

All I know is this sleep doctor has made me edgy and anxious since I saw him last Friday, and I don't sleep well to begin with, but now in addition to that I am worried that I am not breathing while I am sleeping. I really did not need that added worry on my plate. 

It wasn't like the rheumatologist spent a lot of time with me today, but it was what he said during our time together that made sense to me. He is cautious about medications and understands I don't want to take them anyway, so he is working with me on an exercise routine and other lifestyle changes to help manage pain. Though I agree with him, my sleep has to get under better control. I have to believe that there are times with fibromyalgia when the pain is tolerable and other times when things flair up, because I would say this summer has been a pip full of pain. Yesterday and today the exhaustion was so noticeable that I needed to take a nap. I DO NOT nap! My legs have felt like I am carrying twenty pound weighs on each and even walking seems very tiring. Mind you, I am a person who can typically walk several miles multiple times a day on average. 

The rheumatologist gave me some information about fibromyalgia today which does sum it up. It says people with fibromyalgia feel an amplification of normal pain signals. As if the volume control is set too high in the nerves, so things that wouldn't cause pain in most people, do cause pain in people with fibromyalgia. In addition, people with fibromyalgia have fatigue, and a kind of exhaustion that feels like the flu, and at times the exhaustion can be worse than the pain. Absolutely, I have hit that point this week! 

Tomorrow Peter and I head to Boston to visit his parents. That of course means that Indie has to be boarded while we are away. I have great concern about leaving Indie home alone, even if someone comes in periodically to check on her. I just never know if something will happen in the building and I don't want to take any chances. Thankfully we know our vet and are familiar with their kittery. Patches spent over a year living in that kittery when Mattie was battling cancer. They took good care of her, and though Indie was LESS THAN pleased with me today, it is ultimately in her best interest. Not unlike parenting a child, caring for animals also involves difficult decisions.....with the hopes of making them in the best interest of the living being you are caring for!

1 comment:

Margy Jost said...

I am glad you found this Rheumatologist! It is so important to find the right Dr. and all too often, we settle for less than the best for us.
I am sorry about the fibromyalgia diagnosis but at the same time I feel grateful there is a name to all the symptoms, you have. Far too often, when the answer is not simple, Drs. quit looking and try to make us feel that what we are experiencing Just doesn't exist. Those symptoms sound hard especially with the level of activity, you try to have!!!!! Hoping they can find ways for you to manage them.
Indie has moved herself into your heart & home. She is a beautiful Cat!!!!