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

August 28, 2015

Friday, August 28, 2015

Friday, August 28, 2015

Tonight's picture was taken in August of 2007. We took Mattie to San Diego that summer. Behind us is the famous Coronado Bridge. In the afternoon, Mattie enjoyed watching the boats on the water and the cars traveling over the Bridge. There was always something to capture Mattie's attention in San Diego.


Quote of the day: If you want your children to turn out well, spend twice as much time with them, and half as much money. ~ Abigail Van Buren



It was another scorching day in Los Angeles! Try 103 degrees to be exact. It feels as it you are walking in an oven! With this incredible heat and water restrictions, it is really amazing to see the transformation in the vegetation all around us. The foothills, lawns, and trees look very brown. To give you some feeling for the severity of the problem, I wanted to share with you some visuals and facts........... in the LA reservoir, 96 million shade balls were dumped into the water to help conserve water and people are beginning to create grassless yards. Check it out!

Los Angeles Water and Power is the first to use shade balls on a large scale. The idea came from now-retired LA Department of Water and Power biologist Brian White, who was inspired by the “bird balls” used to deter birds in ponds along runways. Shade balls are made of black polyethylene and are filled with water so they don’t blow away. The coating on the shade balls resists ultraviolet light and degradation. The shade balls are one way Los Angeles has cut its water use by 15 percent in the past two years, in addition to restrictions on irrigation and other measures.

The plastic balls, which can save water and protect water quality, are an attempt to cope with California’s severe drought. Los Angeles has turned its main reservoir into a giant ball pit. City officials hope millions of “shade balls” released into the Los Angeles Reservoir will save water in the midst of the worst drought in California history.


The city says the balls will shade and cool the water, reducing evaporation from the reservoir and making it less susceptible to algae, bacterial growth, and chemical reactions that can produce harmful substances. It is said that the shade balls reduce evaporation by 85 to 90 percent, which equates to saving nearly 300 million gallons a year (enough to provide drinking water for 8,100 people).


Grassless Lawns catching on during California drought:

https://www.youtube.com/watch?v=ELAutJpNj9w

August 27, 2015

Thursday, August 27, 2015

Thursday, August 27, 2015

Tonight's picture was taken in August of 2007. Mattie had a ton of energy! Even after a full day of sight seeing in San Diego, he was raring to go in the late afternoon. Which was when we typically took him to the pool. That summer Mattie was coming into his own with learning how to swim. He was taking lessons and progressing quite well. Mattie was in the pool working with Peter on the things he was learning in class as well as having fun spending time together as a family. 

Quote of the day: It is not what you do for your children, but what you have taught them to do for themselves, that will make them successful human beings.  ~ Ann Landers

We had every intention today to go to a museum near the campus of UCLA. This meant traversing a canyon road to get there. As you can see the vegetation along this road is extremely dry! It is dry because Los Angeles is experiencing over 100 degree temperatures and hasn't had any rain. In fact water is being restricted and people can only water their gardens with sprinklers twice a week for 15 minutes, as well as water each day after 6pm. But I do not see many people out there hand watering! We never made it to the museum because we were caught in the midst of a brush fire. 

It probably comes as no surprise that the slightest spark would cause a fire, given the dryness of this terrain!!!











Traffic was backed up quite a ways on this windy canyon road! As you can see firetrucks blocked the road so no one could pass. In fact, firefighters came on a loud speaker and told us the road was NO PASSABLE!


So in lieu of the museum, we headed back to the movie theater. In this heat there are really few alternatives because it is like walking through an oven outside. 


The film we saw today was called, Phoenix. It is a foreign film and in my opinion is a must see. The content is heavy and a bit dark, but it explores the complexity of war, deep betrayal, finding one's self, and trying to deal with the painful and horrific realities that human beings perpetrate against one another. 

The film follows Nelly, a Holocaust survivor and a former cabaret singer, who returns to Berlin after undergoing facial reconstruction surgery for damage caused by a bullet wound. She locates her husband Johnny. Johnny fails to recognize her, yet thinks she has an uncanny resemblance to his wife. In order to obtain his wife's inheritance, he asks her to impersonate his wife and he slowly transforms her into an image of his wife before her arrest. Nelly, though warned by Lene (her friend) that Johnny was possibly complicit in her arrest, maintains a romantic view of their relationship. She withholds her identity from him and struggles to understand his feelings for her and his behavior at the time of her arrest. Lene gives Nelly a copy of a divorce that Johnny was granted from Nelly, right before her arrest. Nelly struggles with her romantic feelings for Johnny, but keeps her knowledge of the divorce a secret. Johnny continues the inheritance scheme with a plan for Nelly to get off a train and make an orchestrated re-appearance in front of Johnny's relatives. Later, at the home of Johnny's relatives, Nelly begins to sing, accompanied by Johnny on Piano. Johnny has feelings of shock come across his face. He realizes his impostor is the real Nelly.

As the Boston Globe says, "The keynote song of “Phoenix” is “Speak Low,” the haunting 1943 Kurt Weill composition (with lyrics by Ogden Nash) about how quickly “the curtain descends” on love. Nelly listens to the tune obsessively but can’t bring herself to sing it until a certain point in the film. The effect is hair-raising. Like its heroine, “Phoenix” speaks low but with bitter clarity."

Trailer to the Movie:


August 26, 2015

Wednesday, August 26, 2015

Wednesday, August 26, 2015

Tonight's picture was taken in August of 2007. We took Mattie to San Diego and when he saw these adorable bicycle surreys, he wanted the opportunity to ride on one. We figured how difficult could that be? Well did we ever find out! These things are impossible to move! But we did it and I am not sure what Mattie found more entertaining.... the sights we passed while bicycle riding or our commentary about how hard it was to navigate this thing!


Quote of the day: It is never too late to be what you might have been. ~ George Eliot

It was over 96 degrees outside today and with intense heat and sun. Our original intention was to visit and walk around the Descanso Gardens. I haven't been to these Gardens since Mattie was alive. However, given the weather, we made other plans. We went to the movies. For those of you who know we well, then you know I rarely go to the movies. There are many reasons for this. One of which is I typically do not like the content of the movies playing, but the other issue is I do not like being in a dark space, crowded with people, that have loud sounds.  


The movie we saw was, Ricki and the Flash. Being a Meryl Streep fan, I knew that something in this movie would be worth seeing, and as usual I was not disappointed. Here is a  synopsis of the film:

It's been a roller-coaster ride for Ricki Rendazzo (Meryl Streep), a one-time wife and mother of three who left her family behind to follow her dreams of rock 'n' roll stardom in California. Now, the singer and guitarist must face the music when she returns home to Indiana to reconnect with ex-husband Pete (Kevin Kline), troubled daughter Julie, engaged son Josh and younger son Adam. Filled with regret, Ricki hopes to find redemption for all of the bad choices that she made in the past.

There was a lot that could intrigue a movie goer to this movie. First of all, we have the music from the 60s, 70s, and 80s. Which Meryl Streep does a great job with.... if you don't know this, Meryl Streep can sing and performs in live theatre, most recently in her in the Broadway show, Into the Woods. Second the woman who plays her daughter in the movie, is also her daughter in real life. So there is a chemistry between them that shines through in the movie. 

In the movie, her daughter is dealing with a bitter divorce and from that is suffering from depression and an attempted suicide. Anyone who has experienced depression and its ramifications knows what this feels like and just how important it is to have someone with you who can help support you out and through it, if it is possible. Sometimes it isn't always possible. But the bond and connection between two women in this movie, and the love of music capture the moviegoer. If you look at the NY Times review of the movie below, they take issue with the fact that the director of the movie did not provide dialogue and substance around the fact that there was a potential race issue in the movie. Meryl Streep's ex-husband in the movie remarries, and he marries an African American woman. This woman in essence raises Meryl Streep's children as she abandoned her family to have a music career. The NY Times critic felt the racial issues and tensions between these two women needed to be explored. 

I personally am happy that the director left the movie just as it was. I do not think this movie was about race, it is was being a woman, the struggles of motherhood, and having a female identity. This is a universal WOMAN issue which I think was explored well, and compounding it was racial tension would have taken away from the substance of what was being portrayed. So I really disagree with The NY Times. I came away from this movie really understanding each character's struggles, feelings, perspective, and by the end how they all developed a tolerance and appreciation for one another. To me that is a great success and as uplifting as one can get. 

http://www.nytimes.com/2015/08/07/movies/review-ricki-and-the-flash-puts-meryl-streep-behind-a-telecaster.html?referrer=google_kp&_r=0

Tuesday, August 25, 2015

Tuesday, August 25, 2015 -- Mattie died 311 weeks ago today.

Tonight's picture was taken in August of 2007. Mattie was working away on one of his favorite things... digging through sand, clay, and pebbles to reveal a plastic dinosaur. Mattie loved the whole notion of being an archaeologist! He started his love for digging when he was well but this activity even continued during his battle with cancer in the hospital. His hospital room would be transformed with a sheet on the floor, Mattie on top of the sheet digging, with goggles on and all his tools beside him. 


Quote of the day: A person who never made a mistake never tried anything new. ~ Albert Einstein

Today we visited The Autry Museum. This museum is dedicated to exploring and sharing the stories, experiences, and perceptions of the diverse people of the American West, connecting the past to the present to inspire our shared future. This is an incredibly rich and historical place to visit and each time I visit the Autry I am thoroughly impressed with their special exhibits and the level of detail that goes into assembling each gallery as well as the signage created to explain each and every item on view. The last time I was in Los Angeles and attended the Autry, I attended an exhibit that enlightened me on the Dust Bowl. Today's exhibit was on the Civil war and the role the West played during that time period. I have to admit that when I think of the Civil War, I isolate the battles and issues to the North and the South. But today I learned that so much more was going on. As the West was expanding the same issues with human rights and freedoms that the North and South were fighting about carried over into the West.  Every state and individual to some extent was involved in this conflict, including Native Americans, who interestingly enough fought on the side of the Confederacy. 

Below is a description of Today's exhibit in more detail!

The West is seldom considered in the context of the Civil War, yet Westward expansion shaped the issues that ignited that tumultuous conflict. Westerners fought in the war for both the Union and the Confederacy, felt its impact at home, and struggled with its civil rights legacy in the Reconstruction era. Empire and Liberty: The Civil War and the West investigates how Westward expansion repeatedly tested the meaning of freedom and the rights of individuals.

Empire and Liberty is presented in four sections. The first section was entitled, The Fire Bell in the Night (1803-1820)Taking its title from Thomas Jefferson’s pronouncement on the Missouri Compromise, the exhibition opens with the Louisiana Purchase and early Westward expansion, using artifacts and narratives to demonstrate that slavery reached beyond the chattel slavery of the American South to include debt slavery repaid with labor, and captive slavery, a frequent practice in Native American cultures. The Louisiana Purchase in 1803 incited fierce arguments and led to the Missouri Compromise of 1820 that divided the Western Territories into slave and non-slave sectors. In this section, an 1801 peace medal and a contemporary beaded peace medal box by Dyanni Hamilton-Youngbird (Navajo) further convey Westward expansion's complexities.

The second section of the exhibit was entitled, The Western Powder Keg (1820-1860). The West became even more explosive as the nineteenth century progressed. This section described aggressive campaigns to expel Native people from the South to the West, a move motivated by Southern cotton growers, whose profit-making ambitions snowballed with the invention of the cotton gin. The entry of Texas into the Union as a slave state proved a heated flashpoint, and the U.S.-Mexican War vastly increased the American empire and served as a training ground for future Civil War leaders Robert E. Lee, Ulysses S. Grant, and Jefferson Davis. The California Gold Rush exposed many versions of forced labor. Gold Rush greed was also devastating to Native populations, who were enslaved and murdered in genocidal numbers. A Californian, John Charles Fremont, (pictured is John Fremont's expedition flag, circa 1841) was the nation’s first “Free Soil, Free Men” presidential candidate in 1856, the same year the pro and anti-slavery forces fought in “bloody” Kansas.

The third section of the exhibit was entitled, Blue and Grey (1861-1865). Empire and Liberty depicts Westerners’ participation in the Civil War alongside its impact on life in the West. The war splintered communities as Westerners flocked to both armies. When Texan Confederates invaded the New Mexico territory, they were repelled by a small cadre of Army regulars reinforced by volunteers from California and Colorado. Numerous wars flared in Indian country, with the Dakota in Minnesota; Apache and DinĂ© (Navajo) in Arizona and New Mexico; and Cheyenne, Arapaho, Kiowa, and Comanche in Kansas, Colorado, and Texas. Lincoln’s Emancipation Proclamation of 1863 and the Thirteenth Amendment triggered questions about unfree labor in the West, including Native slaves, indentured servitude in California, and debt slavery in New Mexico.

The final section of the exhibit was entitled, The West and Reconstruction (1865-present). Through a combination of artifacts and narratives, this section explored how post-war Westward expansion continued to spawn battles over who could enjoy the rights of American citizenship. While the Transcontinental Railroad symbolized the reunited nation, it put new pressures on Native homelands and brought thousands of Chinese, Irish, African Americans, and war veterans to the West. The Civil War escalated other wars against Native people that continued into the Reconstruction period. 

August 24, 2015

Monday, August 24, 2015

Monday, August 24, 2015

Tonight's picture was taken in August of 2007. This is a follow up photo to the one I posted last night. We took Mattie to the La Brea Tar Pits and after exploring the Museum and Tar Pits, Mattie loved to walk around and climb on the prehistoric creatures they had outside. These creatures were designed for just these purposes, for kids to climb and interact with them, as well as appreciate their impressive size.


Quote of the day:  I have been impressed with the urgency of doing. Knowing is not enough; we must apply. Being willing is not enough; we must do. ~ Leonardo da Vinci

This spring, Peter and I were invited to serve on the Family Advisory Board for The Center for Pediatric Traumatic Stress: http://www.chop.edu/centers-programs/center-pediatric-traumatic-stress. The Center for Pediatric Traumatic Stress (CPTS) at The Children's Hospital of Philadelphia addresses medical trauma in the lives of children and families. Founded in 2002 as a multidisciplinary intervention development center within the National Child Traumatic Stress Network, CPTS has recently received additional funding by the Substance Abuse Mental Health Services Administration (SAMHSA) to further its work in preventing and treating medical traumatic stress in healthcare settings.

Peter and I are NO STRANGERS to Medical Traumatic Stress. This was something Mattie dealt with as a result of his treatment. In fact, Peter and I still contend with aspects of these issues, especially when walking through the hallways of Georgetown University Hospital or during scans and procedures for ourselves. 

Pediatric medical traumatic stress is a set of psychological and physiological responses children and their families have to:

  • Pain
  • Injury
  • Serious illness
  • Medical procedures
  • Invasive or frightening treatment experiences in medical settings


These responses may include symptoms of arousal, re-experiencing and avoidance. Symptoms can vary in intensity and are often related to the child's or family member's subjective experience.

Recently, the Center contacted Peter and asked him whether he would submit an article for their blog. Peter has a reputation in our psychosocial circle for being the social media guru. So it was no surprise to me that these professionals reached out to Peter. He can effectively write and he is technologically savvy, so I am happy Peter had the opportunity to promote and chat on the blog about the National Psychosocial Standards of Care that will be published this Fall in the journal of Pediatric Blood and Cancer! Mattie Miracle had the vision to establish such Standards back in 2012. Standards which we felt needed to be created to ensure that all children with cancer and their families would have access to a minimum level of psychological, social, and emotional care from the time of diagnosis, through survivorship or end of life and bereavement care. 

To see the blog posting hosted by Children's Hospital of Philadelphia, go to:

https://www.healthcaretoolbox.org/latest-news/22-e-emotional-support/383-psychosocial-care-for-children-with-cancer-and-their-families.html

Sunday, August 23, 2015

Sunday, August 23, 2015

Tonight's picture was taken in August of 2007. We took Mattie to one of his favorite museums in Los Angeles, the George C. Page Museum at the La Brea Tar Pits. The Tar Pits is one of the world's most famous ice age fossil excavation sites, and the museum then houses the fossils which are unearthed. There is even an active pit in which archaeologists are still actively digging up fossils. As you can see, Mattie was standing in front of a tar pit and as we all know very well.... tar has an awful smell! Which was why Mattie was trying to cover his nose and mouth and was making a funny face! The stench from behind him was remarkable! You can also see the models of prehistoric creatures they placed in the tar pits, to give visitors an understanding for how these creatures may have wandered into the pits looking for water, but then got stuck in the tar unable to move. Which is how these prehistoric creatures died and were preserved throughout time in the pits. 


Quote of the day: We must believe that we are gifted for something, and that this thing, at whatever cost, must be attained. ~ Marie Curie



Today we went to see a play/musical/comedy at a local theatre called The Fabulous Lipitones. The name of the play catches you immediately because you really want to know what is a lipitone? Is it a growth, a disease, a name or what??? Then you look at the playbill and see the four cast of characters on the front and you quickly surmise this is a very interesting quartet. 

In its California premiere The Fabulous Lipitones by John Markus (who is well known for his comedy script writing of the Cosby Show and A Different World) and Mark St. Germain sounds like a silly promo for an overrated medical ("lipitor") product and with its initially corny lines could easily fall into the category of 'sitcom onstage' comedy. Lipitones is a funny and substantially reflective take on what might happen if a traditional barbershop quartet inducted a culturally "un...suitable replacement."


As the play opens up you understand that longtime tenor Andy (a member of the original quartet) has passed away and the group is considering the possibility of closing up shop. After all, they say...who sings barbershop anymore? It's a dying art. They were a barbershop quartet - four men with perfect harmony. But the songs they sang are by and large very old: "Wait 'Til the Sun Shines, Nellie." "After You've Gone" or "Grand Old Flag." Anyway, remaining members Howard (John Racca), Wally (Steve Gunderson) and Phil (Dennis Holland) admire Bob or Baba Mati Singh's (Asante Gunewardena) vocal ability, it's just that he's from Afghanistan, or India (they aren't sure!)? To avoid the label "illegal," his auto-shop boss has been resigning him up for employment every 6 months under a different alias and country. If anyone squeals, he'll be deported, and Phil might just have dropped the bomb, as he's the most opposed to Bob joining the group. Each of the three guys has an issue of his own to contend with. Phil owns a fitness gym and is about to be ousted by younger co-management, who find more mature men sexually unappealing; Wally is a pharmacist more into getting a date with his female "pharmacettes" than into filling prescriptions; only Howard is the most devoted, as he is taking care of a sick wife who once left him for another man. Hardly saints, these men must learn to compromise and adapt their feelings to Indian Bob.

Bob, by the way, does not at all understand their choice of songs. "I'm Only a Bird in a Gilded Cage" or "I Want a Girl, Just Like the Girl That Married Dear Old Dad" give him a horrible image of Americans as he interprets the lyrics literally. His culture will not allow him to accept anyone or anything caged and certainly not a woman who marries her father. Funny, funny misunderstandings concocted by Markus and St. Germain! Bob admires Howard for his devotion to his wife, and when she dies, everyone rallies ... even Bob, who still has not been arrested by the feds. One terribly amusing sight gag is Bob's turban that he somehow manages to reduce in size to fit under the boys' costumed straw hats. In the midst of this hilarious comedy, is great meaning! The show enables four men to find themselves and to develop tolerance, appreciation, and cultural sensitivity for one another. Which through this special bond is what ultimately produced their great harmony and music together!

Here is a clip of the last song they performed together ("The Little Bunny") and after the song, the actor who portrayed "Bob" did a short interview:

https://www.youtube.com/watch?v=tt-qepQk_T4