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: 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

Random Shots of Mattie, Family and Friends

August 22, 2015

Saturday, August 22, 2015

Saturday, August 22, 2015

Tonight's picture was taken in August of 2007. Mattie was five years old, and in a way it is hard to believe that the following summer Mattie was diagnosed with cancer. When this photo was taken, we had no idea what was ahead of us. We took Mattie to the LA Zoo and I remember that we bought this purple fan and spray bottle that he was holding. He wanted it because it was an incredibly hot day. The irony is we still have this purple fan and bottle, and Peter uses it on hot days. It always reminds of that moment in time with Mattie.
Quote of the day: Teach thy tongue to say, “I do not know,” and thous shalt progress. ~ Maimonides



Today we went to visit the LA County Arboretum. This is a very special place to spend the day and I remember taking Mattie here many times! He loved it for so MANY reasons. 

The arboretum's plants are grouped by geography with gardens for South American, Mediterranean, South African, Australian and Asiatic-North American plants. Other displays include the Aquatic Garden, Meadowbrook, Demonstration Home Gardens, Garden for All Seasons, Prehistoric and Jungle Garden, Native Oaks, Herb Garden, and the Palm and Bamboo collection. The gardens also serve as the home for summer concerts featuring the Pasadena POPS.

The Arboretum is sited on a remaining portion of the Rancho Santa Anita, one of the Mexican land grants of Southern California. Rancho Santa Anita was unusual in that it was located above a large part of the Raymond Basin aquifer. Three sag ponds and numerous springs were found in the area and the only remaining one is now called Baldwin Lake. Lacy Park in the city of San Marino once was another sag pond and the precise location of the third is not known but may have been on the grounds of the Huntington Library and Botanic Garden. As a consequence of the relative abundance of water, it was important area in prehistory as a year round source of water, the body of water known as Baldwin Lake and the other sag ponds attracted both waterfowl and other animals as well as Native Americans. Not surprisingly the presence of water and game created a permanent Native American habitation in the area and is believed to have been the location of the Tongva village of Aleupkigna. The exact location of the village is unknown. The close proximity to the nearby San Gabriel Mission may have led to the construction of a small seasonal dwelling at the Arboretum site for shepherds or hunters which ultimately led to the construction of a modest adobe structure.

The site's modern history began in 1875 when Elias Jackson "Lucky" Baldwin purchased Rancho Santa Anita and constructed its buildings and grounds. Baldwin's influence was a strong presence on the site. A certain flamboyance was evident in the creation of a showcase at Santa Anita. Baldwin in some ways anticipated the development of Las Vegas creating Arcadia as a kind of prototype destination resort. The arboretum itself began in 1947 with California and Los Angeles jointly purchasing 111 acres to create an arboretum around the Baldwin site.

In addition, the arboretum is home to a flock of some 200 peafowl, which are descendants of original birds imported by Elias Jackson Baldwin from India. The peafowl is a symbol of the city of Arcadia.
















The Arboretum was featuring a new exhibit... an outdoor gallery which displayed the work of more than 80 artists from Arcadia, Pasadena, Altadena, the San Gabriel Valley and northern and southern California. The artists selected the exact spot in the garden they wanted to showcase their work.  



The Herb Garden showcases herbs and shrubs that contribute to human cultures around the world. The garden reveals the botanical sources for medicines, spices, textiles and other basics of living. What intrigued us and captured our noses while walking through that garden was this wonderful vine like structure of jasmine. It was SO large it looked like a tree covering a bench. 

This portion of the garden maybe the most famous. It is used as a set for many motion pictures. The rose garden was designed by noted landscape architect Edward Huntsmen Trout. The Rose Garden features heritage varieties with elegant pergolas and arbors, all in a setting of citrus and swaying Mexican fan palms.

On the property still stands Elias Jackson (“Lucky”) Baldwin’s Queen Anne Cottage, which was constructed in 1885-86, probably as a honeymoon gift for his fourth wife, sixteen-year-old Lillie Bennett. “For a year after she married Baldwin (May, 1884), this little girl was queen of the ranch,” wrote the Los Angeles Times. Lillie’s father, architect Albert A. Bennett, designed the cottage, but the honeymooners apparently never enjoyed its beauty. Lillie and E.J. separated in 1885, and the fanciful house was converted by its owner into a memorial to the third Mrs. Baldwin, Jennie Dexter, who had died in 1881. A stained glass portrait of Jennie stood welcome in the front door and an almost life-size oil painting of her was hung in the Cottage parlor. Both items remain today.

When I tell you it was HOT out, that would be an understatement. It was even too hot for me to walk! My mom and I walked a bit, but then we had to stop because it was oppressive. Only Mr. Lizard was out sunning himself. But most people were undercover! The lizard would have been a sight Mattie would have appreciated!




As we were leaving the garden, I spotted this... a wonderful butterfly. Butterflies are very symbolic to me of Mattie. When I see them fluttering around me, they remind me that Mattie is always with me. 

Friday, August 21, 2015

Friday, August 21, 2015

Tonight's picture was taken in August of 2006. We took Mattie to Griffith Park in Los Angeles. This park is a gem for children of all ages. It is filled with playgrounds, pony rides, an amazing old world carousel, and all sorts of train rides. Mattie loved going on the trains! This was something I never experienced when I lived in Los Angeles as a teenager. In fact, I never visited Griffith Park in general. But when Mattie came into our lives, he introduced us to all sorts of adventures. 


Quote of the day: Certain things catch your eye, but pursue only those that capture the heart. ~ Ancient Indian Proverb



On social media the other day, Mattie Miracle was advertised as being a sponsor for Curefest held on September 19 and 20 in Washington, DC. Curefest is the largest advocacy and awareness event that the childhood cancer community organizes each year. Organizations and individuals unite together on the National Mall to walk three miles and call attention to childhood cancer. This event draws thousands of people from all over the Country and enhances the public's awareness of this disease. Here was the ad that went out on social media about Mattie Miracle:


We are just one month away from the CureFest walk and festival! Dozens of amazing organizations, including MattieMiracle CancerFoundation will come together on the National Mall!

"The Mattie Miracle Cancer Foundation is a 501(c)(3) Public Charity founded by Peter Brown and Victoria Sardi-Brown, in loving memory of their seven-year-old son Mattie, who died in 2009 from Osteosarcoma, a form of bone... cancer. Mattie Miracle is dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families, and medical personnel. Mattie Miracle had the vision and is funding a National psychosocial standard of care project for childhood cancer, so that children and families around the Country will be ensured a minimum level of psychosocial care from the time of diagnosis throughout treatment, and into survivorship or end of life and bereavement care.

"Mattie Miracle attended Curefest in 2014, and found it to be a true psychosocial experience! Children, parents, and caregivers who are passionate about childhood cancer have the opportunity to gather on the Mall to unite, share stories and information with one another, and collectively advocate to make our voices heard. Given our Foundation's psychosocial mission, we are proud to be able to sponsor an event which enables the childhood cancer community to network and advocate with one voice."



This morning through Facebook my cousin Maria sent me this photo. I met Maria when we were both children. Maria grew up in Switzerland and Italy and her native language is Italian. When we met each other as children, Maria did not speak English and I did not speak Italian. Yet the beauty of children, is we found a way to understand each other. After Mattie died, Maria and I got reconnected again and with the power of Facebook, Maria has now connected me with my cousins in Italy. Rather remarkable what technology can do. This photo was taken around my seventh birthday. I was celebrating it with my paternal grandparents, my dad, and cousin Battista, who was visiting from Italy. It is a rather sobering reality to know that I was the same age in this photo that Mattie died at, age 7.

Maria also sent me this photo! It is a picture of my great grandparents home in Cassano. When I was a child I visited Cassano several times. This was the town my paternal grandmother was born and raised in and it is remarkable now to be able to see these photos that Maria is sending me through an adult eye and lens. As I told Maria she is sharing photogenic gifts with me. 











This morning my mom and I went on a walk in my parent's neighborhood. I have to take some photos of the terrain now, which is greatly browned due to the severe drought! California doesn't look so GREEN. It is almost hard to recognize, and I would like to share this perspective with you. But on our walk we passed this wonderful pomegranate trees. It was very tempting to want to pluck several fruit right off the vine!










Near the pomegranate tree was a bank of oleanders. I honestly do not know how any thing is growing with such a lack of water. There are watering restrictions enforced here and if you are caught violating them you could be fined $500. You are allowed to use sprinklers only on tuesday and saturday for 15 minutes only. You can also hand water after 6pm every day if you wish. But I have noticed FEW people do this. I am not sure if it is time factor, laziness factor, or what. However, what is abundantly evident is the lack of water is effecting everything.... grass, flowers, trees, bushes, you name it. 

August 21, 2015

Thursday, August 20, 2015

Thursday, August 20, 2015

Tonight's picture was taken in August of 2003. Mattie was 16 months old and was visiting my parents in Los Angeles. Mattie was intrigued by the piano. He loved sitting on a lap and playing away on the keyboard. The sound fascinated him and it was like watching science in motion with him as he tested the white and black keys, the sound of the keys which made high pitched sounds versus low pitched ones, and of course the overall noise level based on how much pressure and force he put into the keys. 


Quote of the day:  People often say that motivation doesn’t last. Well, neither does bathing.  That’s why we recommend it daily. ~ Zig Ziglar


Today we visited The Norton Simon Museum in Pasadena. The Norton Simon Museum is known around the world as one of the most remarkable private art collections ever assembled. Over a thirty-year period 20th-century industrialist Norton Simon (1907–1993) amassed an astonishing collection of European art from the Renaissance to the 20th century and a stellar collection of South and Southeast Asian art spanning 2,000 years. Among the most celebrated works he collected are Branchini Madonna, 1427, by Giovanni di Paolo; Madonna and Child with Book, c. 1502-03, by Raphael; Still Life with Lemons, Oranges and a Rose, 1633, by Francisco de Zurbarán; Portrait of a Boy, c. 1655-60, by Rembrandt van Rijn; Mulberry Tree, 1889, by Vincent van Gogh; Little Dancer Aged Fourteen, 1878-81, by Edgar Degas; and Woman with a Book, 1932, by Pablo Picasso. 

Sculpture Garden
In the 1990s, the Norton Simon Museum underwent an extensive remodel; its interiors were redesigned by celebrated architect Frank O. Gehry, and its exteriors by landscape designer Nancy Goslee Power. Jennifer Jones Simon, widow of Norton Simon and then Chairman of the Museum’s Board of Trustees, asked Power to create a garden “just like Monet’s Giverny.”
While the garden is not an exact replica of Monet’s, the lush texture and rambling spirit of Giverny is evident. With a special request from Mrs. Simon, attention was given to ensure that the flowering of plants and trees continued during all seasons of the year. Finally, in the fall of 1999, the re-imagined garden opened, and it has grown more spectacular ever since.

This Monet themed garden is lined with bronze sculptures at every turn. They are amazingly well integrated into the gardens. Here is Henry Moore's Sculpture entitled, "Relief No. 1."







Within the gardens is this HUGE Cockspur Coral Tree. This is one noteworthy tree. The limbs of the tree look gnarled and braided together and when in bloom, the tree has a beautiful coral colored flower. 














We saw two different exhibits today! The first one was on Fragonard's beautiful drawings or in essence copies of great Italian works that he created along a two year journey he took with his Patron, Jean-Claude Richard de Saint-Non. Saint-Non eventually used these drawings that Fragonard created to produce a travel book. Such a book was sought after because it highlighted and captured all the great works all over Italy, and the sign of a well cultured individual back then was being familiar with such great works of art. The second exhibit we saw had to do with the addition of blue to the color palate. The exhibit highlighted why blue was hard to manufacture, the stages involved in the evolution of different blue tones and colors, how this revolutionized art. So much so that by the end of the 1800's, when blue oil paint was more easily produced and available in tubes, the birth of the impressionist movement occurred. 


Fragonard’s Enterprise: The Artist and the Literature of Travel


Before Jean-Honoré Fragonard ascended to the rank of one of the 18th century’s most popular painters, he studied at the French Academy in Rome, where he practiced the fundamental art of drawing as a method to hone his skills and to establish his own unique style. In Rome, he encountered his first patron, Jean-Claude Richard de Saint-Non (1727–1791). A passionate advocate of the arts, Saint-Non was an eager participant in the Grand Tour, the educational pilgrimage to Italy then in vogue throughout Europe. His voyage, made from 1759 to 1761, inspired him to chronicle this experience for an audience that shared his fascination with the peninsula. Saint-Non invited the young Fragonard to join in his tour through Italy’s illustrious cities. In exchange, Fragonard was tasked
with making copies after the important paintings and monuments to be seen in the churches and palazzi. The black chalk drawings Fragonard produced for his sponsor served as source material for Saint-Non’s engravings and aquatints, which were published in suites, and in his illustrated travel book Voyage de Naples et de Sicile (1781–86). These immensely popular publications served as barometers of taste for the arts, and as beloved reminders of the masterpieces visited.

The painting in color (above) was the original masterpiece. Fragonard would study it and then draw it, producing what you see here on the left. In essence he was the master of copying great works and his copies were then seen by many people through Saint-Non's travel book. If people couldn't go to Italy, he brought the great works of Italy to them through the travel book. 



A Revolution of the Palette: The First Synthetic Blues and their Impact on French Artists

"Happy Lovers" by Fragonard

The exhibit traced the effects of three synthetic blue pigments on French artists. The accidental discovery of Prussian blue in an alchemist’s laboratory around 1704 helped open up new possibilities for artistic expression at the dawn of the Enlightenment. As revolutionary as this new greenish-blue color proved to be, Prussian blue was a mere precursor to the explosion of available colors brought about by the Industrial Revolution. The French government played an active role in catalyzing innovation at the dawn of the 19th century, as the country emerged from the Revolution with its economy in disarray. The next synthetic blue, a vivid cobalt blue pigment, was inspired by the traditional cobalt oxide blue glazes seen on 18th-century Sèvres porcelain.

The third synthetic blue to emerge was the culmination of centuries of searching for a cheap, plentiful, high-quality replacement for the most valuable of all pigments: natural ultramarine. This was a color derived from lapis lazuli, a rare, semiprecious gemstone mined almost exclusively in Afghanistan since the 6th century, and imported to Europe through Venice. It is famously known to have been more costly than gold during the Renaissance. Natural ultramarine provided a brilliant, royal blue hue, but only if coarsely ground and applied in a comparatively translucent glaze over a light-reflecting ground. Other blue colors, such as smalt, which was essentially composed of particles of colored glass, were available to help achieve the lovely hues of ultramarine, but the poor covering ability of the paint and the difficulty of its preparation and use were familiar limitations.
In 1824, the French government announced a competition among chemists to develop a true synthetic ultramarine. The prize was finally awarded in 1828 to Jean-Baptiste Guimet. Painters at last had an affordable, fully balanced palette of cool and warm colors spanning the full spectrum. This fact, combined with the innovation of ready-mixed tube oil colors, greatly facilitated the direct representation of nature. Which was what enabled the birth of the Impressionist movement. This painting, Canoe on the Yerres River by Gustave Caillebotte illustrated the beginning of that movement in this exhibit. 

August 20, 2015

Wednesday, August 19, 2015

Wednesday, August 19, 2015

Tonight's picture was taken in August of 2003. We took Mattie to the Los Angeles Zoo for the first time. The Zoo has a wonderful children's section, that provides many hands on opportunities for children to pet and get to learn about sea creatures and farm animals. As you can see Mattie was bending over to try to touch the rays in the pools. He was so tiny though that we needed to hold onto him, otherwise he could have easily landed up right in the water. 


Quote of the day: The two most important days in your life are the day you are born and the day you find out why. ~ Mark Twain


One of the first things I received this morning in an email, was a wonderful three minute video clip that was taken at the IPOS/APOS conference we attended in Washington, DC in July. At the conference, leaders in the psychosocial field were interviewed, and Dr. Andrea Patenaude, a member of our Standards Core development team and the Director of Psychology Research and Clinical Services at Dana-Farber Cancer Institute (Boston, Massachusetts) was selected to talk about the Standards initiative. Andrea forwarded me this clip today, which Peter and I were thrilled to receive it. The video was recorded by the American Society of Clinical Oncology (a professional organization representing physicians of all oncology subspecialties who care for people with cancer).  




The $1.3 billion Center opened to the public on December 16, 1997The Getty Center sits on a hilltop in the Santa Monica Mountains, just off the San Diego Freeway. From there, visitors can take in the aspects of Los Angeles's landscape—the Pacific Ocean, the San Gabriel Mountains, and the vast street—grid of the city. Inspired by the relationship between these elements, architect Richard Meier designed the complex to highlight both nature and culture.

When approached from the south, the modernist complex appears to grow from the 110-acre hillside. Two computer-operated trams elevate visitors from a street-level parking facility to the top of the hill. Clad in Italian travertine, the campus is organized around a central arrival plaza, and offers framed panoramic views of the city. Curvilinear design elements and natural gardens soften the grid created by the travertine squares.

Natural light is one of the Getty Center's most important architectural elements. The many exterior walls of glass allow sunshine to illuminate the interiors. A computer-assisted system of louvers and shades adjusts the light indoors. The paintings galleries on the Museum's upper level are all naturally lit, with special filters to prevent damage to the artworks.


The view from on top of the Getty Center!











There are many wonderful water elements at the Getty Center (like this big stone structure you see here). But because California is undergoing a severe drought, all fountains have been drained of water. It was very sad to see these features barren. It throws off the serene and peaceful atmosphere of the space. 



We had the opportunity to see two wonderful exhibits today. One featured the chalk drawings, the cartoon transfer process of these drawings onto wood, and the paintings of the Renaissance master, Andrea Del Sarto. I really learned a lot about the painstaking work of cartoon transfers and I provided you with a SHORT clip of the technique below if you are interested. But in essence Del Sarto was ahead of his time, because the technique he used was equivalent to carbon copying things, or in essence the xerox! 

Del Sarto always drew his material FIRST before painting it! This was quite typical for Renaissance artists and though his subject matter was religious, his subjects were always that of family and friends. For example his wife was always his model for when he wanted to paint the Virgin Mary. 


Andrea Del Sarto: The Renaissance Workshop in Action

This major loan exhibition celebrates the transformation of the art of drawing by Andrea del Sarto (1486–1530), one of the great Florentine Renaissance artists. Moving beyond the graceful harmony and elegance of his elders and peers, such as Leonardo da Vinci, Raphael, and Fra Bartolommeo, Andrea brought unprecedented realism and immediacy to his art through the rough and rustic use of red chalk and the creation of powerful life and compositional studies. Comprising rare drawings and panel paintings from key international collections, the exhibition fully illuminated Andrea del Sarto's inventiveness, creative process, and workshop practice. 





Almost Invisible: The Cartoon Transfer Process (a short video clip that shows you this process)

https://www.youtube.com/watch?t=177&v=46_wiOboDk4



Edgar Degas: Russian Dancers and the Art of Pastels

"Dancer taking a bow"

We actually participated in a tour of this exhibit. The docent gave us a fascinating psychological portrayal of Degas. I have always known him to paint dancers and clearly I figured he was fascinated with form, shape, and the precision of capturing these elements. However, I never really gave much thought to why there was so much negative space (empty space) in his pieces or why his subjects never seem to be interacting with one another. In many ways, Degas painted subjects in the same way he lived his life. Which was in isolation and devoid of connecting with people. So it makes perfect sense that we see a dancer in isolation here, separated from the rest of the corp de ballet. He painted through his own lens and I think it revealed a lot about his own inner turmoil. 

This pastel (which is chalk and oil media combined) is entitled, "Waiting." One could ask themselves, waiting for what? Our docent had us all speculate and we all had different interpretations of what the dancer was doing versus the woman in black next to her. Some people thought the dancer was waiting for an audition, or was waiting for results of the audition, and some of us thought the dance just got injured and was waiting and rubbing her foot to determine what would happen next. Needless to say the tell tale Degas sign were..... NO interaction between the subjects and a lot of negative space! Also notice the contrast between these two people, one in vibrant clothes and appears to be young, and the other more mature and wearing dark and rather solemn clothes. 

Yet as Degas aged, he developed cataracts. With that his color palate changed. Our docent explained to us that apparently the last two very clear colors someone with cataracts can see are orange and yellow, which is why these colors were so prominent here. But what stands out tremendously in this pastel piece entitled, "Russian Dancers" was that there was no negative space and the dancers are actually interacting with one another. 


There is great controversy not only around Degas' art work but also around the way he lived his life. He has been accused of being anti-Semitic and over the course of history lost many of his close impressionist buddies due to disagreements around the Dreyfus Affair (The scandal began in December 1894, with the treason conviction of Captain Alfred Dreyfus, a young French artillery officer of Alsatian and Jewish descent. Sentenced to life imprisonment for allegedly communicating French military secrets to the German Embassy in Paris, Dreyfus was imprisoned on Devil's Island in French Guiana, where he spent nearly five years). In addition to that, I learned Degas had issues that fell somewhere along the Autism spectrum. Or at least that is how we would describe them in today's day and age. I have to say I learned a great deal about the man behind the pastels (of which he did OVER 700 of them besides oil paintings), which helps to give me further insights into his works. 

August 19, 2015

Tuesday, August 18, 2015

Tuesday, August 18, 2015 -- Mattie died 310 Weeks ago today.

Tonight's picture was taken in August of 2003. This was Mattie's second trip on an airplane and out to Los Angeles to visit my parents. Mattie loved adventure and seemed to be fascinated with plane travel. So much so that he always remained awake and alert for the entire plane trip! I happen to love this photo of Mattie and Peter testing the pool waters together and dressed in matching suits.


Quote of the day: Whether you think you can or you think you can’t, you’re right. ~ Henry Ford

It has been a very long day of travel to get to Los Angeles. A five hour flight seemed like 10. I have been on turbulent flights before, but this one was bumpy throughout almost the entire flight. So much so that there was practically mutiny to get access to the restrooms on the plane. Every time there was a break in the choppiness and the pilot took off the fasten seat belt sign, people then tried desperately to use the restrooms.  However, as soon as they got to the door of the restroom, they were sent right back to their seats because we hit more choppy weather and the requirements of seat belts were rightfully enforced. It almost became physically unmanageable! So we had to contend with constant turbulence, lack of access to restrooms, and being confined to a tight and VERY FULL space. It wasn't a recipe for happiness, and I honesty don't know how the crew works in these conditions. Because they have to manage the tensions of hundreds of people.  

Now that was only part one of the problem, part two of the issue were my row mates. I had a mother and son team sitting next to me, and the husband/father of this team sitting in the row in front of me. This three some was noteworthy. The mom, who sat next to me, wouldn't disengage from her carry-on luggage at ANY TIME. What I mean by this is, she had bags and bags ON TOP OF HER LAP. I am not talking a purse or small bag. I am talking about back pack size bags and try two of them on her lap and one at her feet! I was certain a flight attendant would flag her, but it NEVER happened. This woman flew with these bags on top of her, and in essence on top of me at take off, throughout the flight, and even during the landing!!! If it were only that, it would be bad enough, but there was more. Her and her son had anxiety about the window shade. They HAD to have it DOWN, so no one could see outside. I have the exact opposite issue as they do, I NEED TO SEE OUT! It helps with my motion sickness and my level of anxiety about flying. So what made them at ease, drove me absolutely BATTY! Then it was there nonstop talking and the passing of notes to her husband in the row in front of us. It was an absolute side show and some how I felt like I was in center ring. TRAPPED in a dark plane cabin, unable to leave my seat, and dealing with turbulence.


By the time I landed in LA, I was very ready to get off the plane. I had developed a violent headache and was feeling ill. Yet don't you know it, we remained parked on the runway for 25 minutes after we landed since there was a plane at our gate. I naturally can put all of this into context, since I am happy to have gotten here in one piece and am alive to tell this tale. But United truly had me laughing. Their safety video has moved from being serious in nature to that of pure entertainment value. I felt like I was watching a commercial plugging all the places they fly to, rather than something that was going to inform me about my safety. I also think it is interesting that this video now replaces the attendant having to walk you through these steps. You can see the video for yourself:

https://www.youtube.com/watch?v=WqAAQ0ZZMyw

The other issue that had me and countless other passengers were the seat back TVs. Not the fact that they had them, but the fact that there is close to an $8 charge if you want to view anything on them. I assure you that even if you bring your own headphones, the system shuts off after two minutes in the air unless you pay to use it with a credit card. You can't even see a map of your flight without paying for that perk. Given that other airlines give you access to this form of entertainment for free, this to me was very distasteful especially when you reflect on the fact that you are migrating across the Country in what feels like a cattle car.

August 17, 2015

Monday, August 17, 2015

Monday, August 17, 2015

Tonight's picture was taken in August of 2009. By this point in time we knew that Mattie's cancer battle was coming to an end. Yet despite Mattie's grave situation, he still managed to the best of his ability to try to get up and about when he could. That day we took him into the child life playroom, which was a room he appreciated and enjoyed. Things were all a buzz in the room that day. Mattie's art therapists came to visit him, and Liz (who was sitting beside him) also came and was working on creating poetry with Mattie. Mattie and Liz created wonderful pieces together during his year in the hospital, some of which I still have! Then behind Mattie on the left was Jey. Jey was considered Mattie's big brother at the hospital. We met Jey at the beginning of Mattie's cancer journey while Mattie was undergoing a CT scan. From that point forward Mattie and Jey became instant buddies. Jey really looked out for Mattie and whenever we were in the hospital, which was often, he visited Mattie.  The irony is to this day, whenever I am on Georgetown's campus and bump into Jey, Jey gives me a big greeting. Jey always reflects on Mattie's life to me, and it is clear that Mattie made a huge impact on him. Jey is one of memory keepers!



Quote of the day: To find the universal elements enough; to find the air and the water exhilarating; to be refreshed by a morning walk or an evening saunter... to be thrilled by the stars at night; to be elated over a bird's nest or a wildflower in spring — these are some of the rewards of the simple life. John Burroughs


Today was a busy day filled with chores and last minute things to do before I head to Los Angeles tomorrow. I wasn't sure what I was doing first. But in the midst of everything else I had going on, I decided to email Eleanor Holmes Norton. As a resident of the District, I wanted to encourage her to declare September National Childhood Cancer Awareness Month. Believe it or NOT, DC still hasn't signed on board with this, despite the fact that this is a nationally recognized cause. Of course only 12 States in our Union (Utah, California, Wisconsin, Connecticut, Texas, West Virginia, Pennsylvania, New Jersey, Indiana, Colorado, New Hampshire, and Iowa) have governors who have officially declared September as National Childhood Cancer Awareness Month in their State. The childhood cancer community is really trying hard to get more and more States to sign on and raise awareness. For it is only through raising awareness that change (better treatments, access to treatment, more research funding, and comprehensive cancer care which includes psychosocial care) can be achieved. 

I am signing off for today. The next time you hear from me I will hopefully be in Los Angeles. 

August 16, 2015

Sunday, August 16, 2015

video

Sunday, August 16, 2015

Tonight's video was taken in August of 2007. We took Mattie to San Diego with my parents. Each afternoon, after a full day of touring around Mattie still had enough energy for about four people. So Peter and I would take him to the hotel pool to burn more energy off. That summer Mattie was taking swimming lessons and was really beginning to become comfortable in the water. Overall I would say that Mattie had a healthy respect for the water and was cautious. In this video you can see that Mattie finally gained enough courage to dog paddle to Peter and was showing us this fine achievement! 


Quote of the day: They always say time changes things, but you actually have to change them yourself. ~ Andy Warhol


As September approaches, the childhood cancer community ALL AROUND the WORLD mobilizes into action. It does so every year because September is National Childhood Cancer Awareness Month. With each year, advocates make MORE and MORE of a difference with regard to enhancing community awareness and promoting the color.... GOLD (the official color of childhood cancer). This isn't easy since childhood cancer is not an easy topic to discuss with the public. For the most part it is an immediate conversation stopper. 

Childhood cancer is the #1 killer by disease of kids in our country. The incidence of childhood cancer is steadily increasing, with 16,000 children a year being diagnosed. Although there has been progress in the most common types of childhood cancers, such as leukemia and lymphoma, many types of childhood cancer continue to have a grim prognosis, with some being a guaranteed death sentence. In fact, four children a day die from cancer. Childhood cancer is in dire need of greater funding and research, and the way to help this get accomplished is through public awareness and making this a national priority. 

I have included two lists below that are very applicable to the GOLD campaign. A campaign that is actually world wide, in which landmarks of States and Countries are lit up with GOLD lights for the month of September to bring awareness to childhood cancer. Each year, advocates are able to ADD MORE AND MORE landmarks to the list below. Our hope of course is one day to have a landmark in each State and Country lit in GOLD in the  month of September. 

Perhaps as you read this, the notion of shining GOLD lights on monuments, bridges, and buildings may seem trite. But on the contrary, the symbolism of seeing something in our city and State shining in GOLD is important. It is an important step to making the public aware of the seriousness of this disease, the dire need for more research and funding, and it is only through public awareness that great change happens. Similar to the pink campaign with breast cancer. One just needs to see pink and knows exactly what we are talking about. 

It is impressive how many other States around the Country acknowledge childhood cancer awareness month and yet our Nation's capital does NOTHING. Nothing is lit in GOLD. Advocates have tried asking the White House MANY times. I think it isn't right that Washington, DC remains silent on this issue and this year I decided to write to several officials to encourage them to light certain non-governmental landmarks GOLD. I am not holding my breath, but I also realize I have to start somewhere.


States that have declared September is Childhood Cancer Awareness Month:

Utah, California, Wisconsin, Connecticut, Texas, West Virginia, Pennsylvania, New Jersey, Indiana, Colorado, New Hampshire, and Iowa.


Landmarks in other States which light up in GOLD in honor of Childhood Cancer Awareness Month (some select a day, a week, or the whole month to light up in GOLD):










Oklahoma City's Landmark SkyDance Bridge
Merchandise Mart Building; Chicago, IL
The Seattle Great Wheel; Seattle, WA
The Bank of America Tower and  The Omni Hotel; Dallas, TX  
Sundance Square and The Pier One Tower;  Ft Worth, TX
The Indianapolis Power & Light Company, Indianapolis, IN
The Terminal Tower; Cleveland, OH
Woodman Life Tower; Omaha, NE
Stewart Street Bridge; Dayton, OH
The Electric Tower; Buffalo, NY
Niagara Falls; Niagara Falls, NY
The Peace Bridge; Buffalo, NY
The Trade Center 128; Woburn, MA
Zakim Bridge; Boston, MA
The Prudential Tower and The Atlantic Wharf; Boston, MA
The Empire State Building; New York City, NY
The Indianapolis IPL Building; Indiana