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

September 21, 2011

Tuesday, September 20, 2011

Tuesday, September 20, 2011 -- Mattie died 106 weeks ago today.

Tonight's picture was taken in September of 2008. Mattie was home from the hospital and his closest preschool buddy, Zachary came over to visit. Zachary was into Indiana Jones at the time, and wanted to introduce the character to Mattie. Zachary brought Mattie an Indiana Jones hat, and as you can see Mattie put it right on. I had both boys pose for me that day and to me this captures their friendship quite well. These boys were inseparable, full of adventure, and loyal to each other. To this day, I still have the Indiana Jones hat and it remains in the living room, just where Mattie left it.

Childhood Cancer Fact of the Day: Pharmaceutical companies fund over 50% of adult cancer research, but virtually nothing for children (American Association of Cancer Research)

After our walking routine this morning, and of course seeing deer, we then visited the Getty Center Museum. This museum opened up 14 years ago, but I have never had the opportunity to visit it. Keep in mind as you read about my experience below, that this museum is FREE to the public. I believe that the Getty family left Los Angeles a very special gift, because I have been to museums all over the world, but today's visit captured me. The use of light, outdoor space, water, and greenery were captivating! We literally saw four exhibits and because the gallery space is small and intimate, exhibits are easy to walk through and enjoy.

A picture of my mom and I in front of the Getty Center! The Center is built from travertine stone, which came from Rome, Italy. These stones range in age from 8000 to 80,000 years old.
On the south side of the museum, there is a very realistic re-creation of a desert landscape. The cactus were incredible, and because the museum is situated high on the hill, you can also get amazing vistas of Los Angeles.
Fountains are an integral part of the museum grounds. They are everywhere! In the museum courtyard a 120 foot linear fountain is featured. My mom was standing in front of this fountain. The tranquil and peaceful sounds of water were beautifully integrated into this incredible space. The architect of this museum (Richard Meier) was very cognizant of "elevating people out of their day to day experience." This is immensely evident as soon as you arrive at the museum. After you park your car at the base of the mountain, you then have to board an electric tram which transports you 3/4 of a mile uphill. A very unique experience, and one that helps you get into the mood of being transported to a unique and beautiful place.

My mom took a picture of me in the sculpture gardens. I am standing next to Alexander Calder's "Spiny top, Curly bottom" sculpture. I am a Calder fan, which is why she captured me near this red cutie.
Exhibit entitled...In focus: The sky. With its immensity, immateriality, and variability, the sky has been an enduring subject in art history, fascinating and challenging generations of artists. As soon as the medium of photography was introduced in 1839, photographers attempted to represent the sky and its natural phenomena. My favorite photo from this exhibit was entitled the Lost Cloud. I loved how the artist captured the isolation sometimes found within nature, but also captured within one's self. The Lost Cloud (Kertesz, 1937).........Soon after arriving in New York in October 1936, André Kertész spent time searching the city streets for fresh material, just as he had done in Paris for a decade. One afternoon he observed a solitary white cloud in a vast blue sky, dwarfed by the monolithic presence of the Rockefeller Center. Kertész later recounted that he was "very touched when he saw the cloud, as it "didn't know which way to go" (Bela Ugrin, Dialogues with Kertész, " 1978–85, the Getty Research Institute) — a sentiment he strongly identified with as a new immigrant.


Exhibit entitled, British watercolors and drawings. Durham Cathedral and Castle (Girtin, 1800)
Watercolor is regarded as one of the most challenging artistic techniques. Its liquid nature is capable of extraordinary effects of luminosity, but is often challenging for an artist to control.Thomas Girtin painted a dramatic view of a medieval cathedral and castle (a cathedral Peter and I saw on our honeymoon) from the bank of the River Wear in northeastern England. He famously used a wide palette with many more tints and subtints than other artists, visible here in the range of blues and greys of the river.


The next four paintings were part of the French Paintings exhibit at the museum. My faithful readers know I LOVE Monet, and most of the French Impressionists. So naturally I had to capture these photos today. I hope you enjoy them too.


Sunrise (Monet, 1873) The sketchy execution of works such as Sunrise shocked critics of the time, who considered them unfinished impressions rather than completed compositions. The remarkably pristine condition of Sunrise preserves the movement of Monet's brush as it captured the effect of morning light, diffused by fog shimmering on the water.
Irises (van Gogh, 1889) van Gogh painted irises in the garden of the asylum where he was recuperating from a severe attack of mental illness. Although he considered it more a study than a finished picture, it was exhibited at the Salon des Independants in 1889. Irises exemplifies van Gogh's practice of working directly from life. Its energy and theme - the regenerative powers of the earth - express the artist's deeply personal belief in the divinity of art and nature.

The Portal of Rouen Cathedral in Morning Light (Monet, 1894) Monet turned away from his landscape subjects and painted thirty views of the Cathedral with a methodical intensity that was unparalleled in his career. For Monet, the gothic monument was less important as a religious symbol than as a permanent, richly textured surface on which light and atmosphere could play with infinite and colorful variation.
Wheatstacks, Snow Effect, Morning (Monet, 1891) Wheatstacks was the first of Monet's series paintings. He painted 30 variations of this motif. This picture reveals his singular ability to model form and capture light exclusively through strokes and dabs of color.
The gardens and landscaping at the Getty Center provide a counterpoint of color and texture to the complex of buildings. Most notable is the Central Garden. The garden was created by the artist Robert Irwin, who has called it a "sculpture in the form of a garden aspiring to be art." In the center of this amazing garden is a maze comprised of 400 azalea plants.
An absolutely enchanting garden!!!! Visiting The Getty Center is an unique treat. I have never been to a museum that even comes close to it. The outside of the museum is just as aesthetically pleasing and captivating as the art found within the buildings.
From a distance these look like flowering trees. As you get closer to them, you realize these are bougainvillea vines that have been trained to grow up through this metal tree like structure.

Today marks another Tuesday, or 106 weeks Mattie has been gone from our lives. Time marches on, but the grief remains. In honor of each Tuesday, Mattie's oncologist, Kristen always writes to us. She is a very special physician and human being, and we are honored to have her as a friend. Kristen sent me this very informative and fascinating video clip. The clip is short and discusses a MAJOR problem in the US. More than 180 critical drugs are in short supply across the United States. Even drugs to treat adult cancers. Imagine having cancer and being unable to get treatment because the drug isn't being manufactured!!!! Dealing with cancer is stressful enough for patients and families, but hearing this news is simply unacceptable! To listen to the interview, click on this link: http://www.pbs.org/newshour/bb/health/july-dec11/drugshortage_08-29.html

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I hope you are both doing well. Vicki, I hope you are finding relief from your headaches while out in California although it didn't seem the case from the blog.   wanted to also let you know that there have actually been four approvals for childhood cancer indications. One, as you mentioned is clofarabine, the others are imatinib (also known as Gleevec) for chronic myelogenous leukemia, nelarabine for T-cell leukemia/lymphoma, and everolimus for a very rare tumor in children associated with tuberous sclerosis called subependymal giant cell tumors (SEGA) just approved October 2010. However, as you note, the vast majority of the drugs used to cure pediatric cancers were never approved for use in children and are actually very old drugs. More worrisome, as we are hearing on the nightly news, some of those drugs are in shortage...both adults and pediatric patients depend on these drugs for their therapy. Thank you for reminding all of us of the facts of Pediatric Cancer this September! Thinking of you both, this Tuesday and every day."

No comments: