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

June 15, 2013

Saturday, June 15, 2013

Saturday, June 15, 2013

Tonight's picture was taken in June of 2007. This photo, not unlike the blog photos from the past two nights, was taken in Lancaster, PA. We stopped at a farm in the middle of no where that had many things to entertain children. As you can see the trampoline that I featured in last night's photo is in the background of this photo. After Mattie jumped around on the trampoline, he then moved onto all the interesting wooden structures they had for children to play with and explore.


Quote of the day: We pass through this world but once. Few tragedies can be more extensive than the stunting of life, few injustices deeper than the denial of an opportunity to strive or even to hope, by a limit imposed from without, but falsely identified as lying within. ~ Stephen Jay Gould


Last night Peter and I went to Wolf Trap. Wolf Trap is basically an outdoor amphitheater in Virginia that features musical arts from concerts (all genres) to ballets! The first and last time we went to Wolf Trap was in the summer of 2009. Mattie was alive and we took him to see a revival band's rendition of ABBA. Mattie had a good time that evening. When we took Mattie, we sat on the grass but not in the crowd you see here. Instead he sat further back on a grassy knoll. Mattie did not like crowds even when he was well, so fortunately we had space that night and he enjoyed going with Ann's children. Now four years later, we decided to venture back to this outdoor concert hall. I usually steer away from Wolf Trap specifically because I do not like crowds, and between the amphitheater seats and lawn space, Wolf Trap can hold around 7000 people. That is TOO many people in one space for my comfort.

With that said, I wanted to see Celtic Woman, and typically like so many performers, they perform in much bigger arenas. When I heard they were coming to Wolf Trap, I figured I would find a way to manage the crowd because it was an outdoor space! For those of you not familiar with Celtic Woman, they are an all-female Irish musical ensemble conceived and assembled by Sharon Browne and David Downes, a former musical director of the Irish stage show Riverdance. In 2004, he recruited five Irish female musicians who had not previously performed together and shaped them into the first lineup of the group that he named Celtic Woman. Downes chose a repertoire that ranged from traditional Celtic tunes to modern songs. Celtic Woman has been called the "Riverdance for the voice!"

Peter and I sat in the actual amphitheater last night, which was a lovely experience. With the beautiful back drop of trees and a wonderfully warm night, it was ideal to hear music. During intermission, we had this Mattie Moon sighting. I have seen Celtic Woman perform numerous times on PBS, but I would say they were even more enchanting and energetic in person if that is possible. There is a fiddler within this group who is a show unto herself. Her talent with a fiddle is remarkable and she plays while jumping and running around! It was a total musical experience including bagpipes, Irish dancing, and angelic voices. As soon as they open up their mouths it is hard to believe such sounds can come from a human body. A simply beautiful musical experience and people even came up to Peter last night to thank him for screaming.... MORE. If you haven't heard Peter scream, I assure you he does it quite well. Not only did he do it well, the Celtic Woman heard him and kept on performing! They were very generous with their time last night and did about three encore numbers since they could see the crowd was still standing and applauding and not going away any time soon! What was clear to me, is these ladies seem to value and appreciate America, and made their feelings known throughout the show. I found that touching, and considering we just visited Ireland last summer, I feel like I have a better understanding and appreciation for where they grew up and for their cultural heritage.

Peter and I spent a good portion of our day today outside on our deck. Working on our flowers and our space. Peter pulled down one of our perennials, which we always call our "Father's Day Lilies!" These lilies have been blooming for us around Father's Day for over 15 years. In fact, when we first moved to DC, we went to Sears to buy something. While passing through the store, I saw these lilies and bought them. We planted them and each year the bulbs produce an amazing display for Father's Day. Mattie got a kick out of the lilies and together we would point out to Peter that the lilies were our visual appreciation we have for him. I don't have Mattie around to help me celebrate Father's Day, so it is up to me to showcase these beauties to Peter in memory of Mattie!

Here is a close up of our Father's Day lilies!!! To all our readers who are dads, we wish you a very happy day with your family on Sunday.


 

June 14, 2013

Friday, June 14, 2013

Friday, June 14, 2013

Tonight's picture was taken in June of 2007. As I mentioned last night, while driving through Lancaster, PA, we came across a beautiful farm. The farm was very kid friendly and had all sorts of playground type things featured, which we could see from the road! What we did not expect though was this amazing trampoline. This thing was rainbow colored and flat on the grass, not elevated. However, it was great fun for Mattie because he ran all over it and jumped around! The irony is that NO one else was around us. Mattie had the whole trampoline to himself and it was like finding a little nugget of gold in the midst of a field of green.


Quote of the day: If you need something from somebody always give that person a way to hand it to you. ~ Sue Monk Kidd


I had my monthly licensure board meeting today, which always has a way of taking up half or more of my day. Typically my Foundation work and my board work do not interfere with each other. However, one of the licensed professionals who is coming before our board for ethical violations happened to make a contribution to Mattie Miracle in May. I will spare you the details on this! However, fortunately I flagged the contribution and returned the money because of the conflict of interest. I can not try this person for a violation and also accept money at the same time. Needless to say, after dialoguing with my board today, I have decided to recuse myself from this ethical hearing for various reasons. One of my primary reasons is to protect Mattie Miracle, because it only takes one questionable act to cloud an organization's reputation. Funny isn't it how my worlds do collide.

My friend Debbie sent me a link to an article today. I had read this article on Wednesday, but I am happy Debbie sent to me so I can share it on the blog. The article highlights the long term effects of children receiving cancer treatment. A recent study was conducted at St. Jude Children's Research Hospital. Researchers followed a group of 1700 adults who were patients at the Hospital when they were children. All the participants were at least 10 years past their childhood cancer diagnosis. However, more than 95% of these adults now suffer from chronic health conditions such as pulmonary disease, hearing loss, cardiac issues, and the list goes on. One chart from the study fascinated me, because Mattie received the drug, Cisplatin. It was found that almost 100% of adults who received Cisplatin as a child had hearing loss of some kind by age 60! The sad part in all of this is there are only two new FDA approved drugs to treat children with cancer (within the last 20 years), so what does the medical community do instead? They increase the dosages of these antiquated chemotherapies resulting in children being exposed to toxic levels of these drugs. It is no wonder that children who are lucky enough to survive treatment are later afflicted with all sorts of complications and diseases, and yet as the article points out, "there is a paucity of training and doctors to take care of people with these specialized needs." What do you say to this?! It almost leaves you speechless.

Childhood Cancer Health Woes Persist
http://online.wsj.com/article/SB10001424127887324904004578539611296432752.html

Out of the blue today, I received two emails from cancer professionals asking Mattie Miracle to promote their cancer related products. In fact, one researcher is from a well known treatment hospital who would like us to offer her newly patented psychosocial kit to children and their families. Naturally I need to learn more about both of these products before responding, but it seems to me Mattie Miracle is getting the message out there that we are about PSYCHOSOCIAL support and from my perspective this truly makes Mattie's Foundation a very unique cancer organization.

June 13, 2013

Thursday, June 13, 2013

Thursday, June 13, 2013

Tonight's picture was taken in June of 2007. We took Mattie to Lancaster, PA and along one of our adventures we came across a farm with a fascinating trampoline in the middle of the field. I will feature that photo at some point this week. I have never seen a trampoline like it or seen one like it since! Mattie had a great time running around at the farm and naturally I couldn't resist a photo with these cut out farm animals!


Quote of the day: Whenever you read a cancer booklet or website or whatever, they always list depression among the side effects of cancer. But, in fact, depression is not a side effect of cancer. Depression is a side effect of dying. ~  John Green, The Fault in Our Stars


Each night I search for a meaningful quote to post on the blog. Last week I came across this quote and I have to admit I found it perplexing, and skipped it. But now I understand who John Green is because I am reading the book Isabel gave me yesterday, The Fault in Our Stars. This quote is actually found within the first chapter of the book. In many ways, this is a deep quote. Because "dying" could mean many different things when diagnosed with cancer. It could be the metaphysical dying of one's self, because the diagnosis, toxic treatment and side effects do cause you to become a shell of your former self. Or "dying" could literally mean dying. The greatest fear one has when your child is diagnosed with cancer is that he or she could die! Guess what though, children have the same fear as well regardless of their age. The fear of dying and suffering can lead to feeling depressed no doubt. So Green's quote is somewhat accurate, I just never thought about it in this way.

I feel that Peter received an early Father's Day greeting. Peter was at work yesterday and sitting at his desk, he happened to look out his office window, and low and behold look what he saw?!!!! A wonderful monarch butterfly fluttering by!!! Do you see it? What are the chances of this? I would say quite slim! I do not believe in coincidences, instead, I believe in looking for signs from Mattie, and in typical Mattie fashion he did not forget what Sunday is for Peter.

My friend Heidi sent me a link to a 51 minute video that was featured in the Washington Post two days ago. I watched a portion of the video a day ago, but I did not get passed the first five minutes. Today, I sat down and watch all 51 minutes of a video that hopes to go viral and spread awareness of childhood cancer. I attached a link to the video below in case you may want to see it. Despite its length, the overall content of the video is quite good. The parts that truly resonated with me were the children's own words and that of their parents. If you do not want to watch the whole video, consider checking out minutes 6:20 to 13:00. There is a counter on the video, so you can fast forward it. At minute 6:20, you will hear the perspective of living with cancer from the mouths of children. I found their sweet and innocent faces very compelling, but you can also see how cancer ages them psychologically and mentally. After all, these children are waging a war within, a war most of us would like to believe can't happen to children. But I know it can and I lived through the horror! A horror that lives within me forever.

Some of the comments from parents were incredibly poignant. One mom stated that she wasn't sure what was worse, having to sign the consent papers to have chemotherapy administered to her daughter, or to have to see how these toxic drugs ravage her daughter's body and mind. It is a very painful reality as a parent to know you have no choice but to choose the evils of chemotherapy. This mom also mentioned that there are warnings all over the chemo bags, so as to not come in direct contact with the liquid, and yet this liquid will be going directly into the body of your child. Another mom also broke down the myth of the 80% five year survival rate in children. I was THRILLED to hear this!!!! I HATE that statistic, and when doctors promote it, I just shake my head.

I remember one day lecturing a group of grad students and I mentioned the '80% five year survival rate.' I asked them if they understood what I was saying, and of course they said NO. The 80% five year survival rate means that children today have an 80 percent chance of surviving five years post-treatment. It DOES NOT mean that 80% of children diagnosed with cancer are cured and survive! The mom in the video went on to say that her son was once part of this 80% group, yet his cancer came back before the end of five years post-treatment. Unfortunately this little boy named Jack (only 10 years old) died. So from her perspective, the 80% rule is meaningless. Certainly for someone like Mattie, we never even made it post-treatment, so the fact that 4 out of 5 children become part of this 80% group doesn't make me happy at all. In fact when I hear physicians tout how far cancer treatment has come, I want to say.... ARE YOU KIDDING ME?! We haven't come far enough when 1 out of five children die, and the other four that remain alive will be dealing with late term effects, many of which involve secondary cancers that arise as a result of the toxicity of treatment received. What you need to understand is that the cancer battle DOES NOT end once the treatment does! Once diagnosed with cancer, one lives with the fears of it returning as well as a whole host of long term medical side effects.

When I got to minute 21:32 in this video, a listing of organizations that raise money for childhood cancer were flashed across the screen. The video wanted to highlight that a majority of funds to support childhood cancer treatment come from private groups! To my amazement, there was Mattie Miracle with its beautiful sun prominently displayed on the screen! Mind you, no one interviewed us for our logo, but to me this means our message is getting out there! 

I also want to bring your attention to minute 27:35. You will see snippets of the Director of the National Institutes of Health in a briefing. This very brief sequence was STELLAR. It was stellar because it shows how important childhood cancer is to this individual and to the organization as a whole. Notice how many times he refers to childhood cancer in the video!!!!!!!!!!!!!!! You will see he lists over and over again breast, prostate, colon, and lung!!! Want to know how many times he refers to the work being done on childhood cancer????? A big ZERO!!!! This speaks volumes, doesn't it???!!!

I know many of my readers have been educated for years now about childhood cancer from Mattie's blog. But sometimes hearing a different perspective from mine can be helpful, or in this case, I believe it further verifies the thoughts, feelings, and insights I try to share with you each night. So I end tonight, with the video:

Loudoun high-school graduate makes documentary about childhood cancer...............................................
http://www.washingtonpost.com/local/education/loudoun-hs-graduate-makes-documentary-about-childhood-cancer/2013/06/09/2134a126-d114-11e2-8cbe-1bcbee06f8f8_story.html?wpisrc=emailtoafriend

June 12, 2013

Wednesday, June 12, 2013

Wednesday, June 12, 2013

Tonight's picture was taken in June of 2007. We took Mattie to Lancaster, PA and together we rode on an Amish wagon and toured through a working farm. Mattie loved the whole experience and the adventure and I was personally fascinated by the culture and the landscape.


Quote of the day: You must be the change you wish to see in the world.
~ Mahatma Gandhi


Do you think that one person can change the world? It is an interesting question that I think should be answered by a qualified YES. I do think that one person can make an impact on the people he/she comes in contact with and that contact can cause a whole cascade effect on others. Almost like a ripple in a body of water.

I was invited over to my friend Heidi's house today. Not to meet with Heidi, but to talk with her 15 year old daughter, Isabel. I have worked with Isabel before when she was in 8th grade. Isabel and her girl scout troop selected Mattie Miracle as an organization to work with to fulfill their community service hours. That year Isabel's troop raised $1000 to build 100 Build-a-Bear teddy bears to donate to children and their siblings at Georgetown University Hospital. Isabel's troop visited the Hospital twice and on both occasions interacted with the children who were in-patient in the pediatric units. I knew Isabel wanted to meet with me today to talk about another service learning project with Mattie Miracle, I just did not know the extent of her commitment or desire.

Keep in mind Isabel is 15. It was Isabel who made me lunch today. She set a beautiful table and actually cooked in front of me. While she was preparing lunch we talked about her future career goals and also about one of her favorite TV shows, House. I too like House, so she was in good company, and I understood exactly what she was talking about. The beauty of being 15 is that anything and everything does seem possible in the world.

It doesn't take long for one to see that Isabel isn't like your typical teenager. Isabel seems wise beyond her years, or if I had to put this in context, she is driven by an internal passion and mission. The mission is to help others, particularly children. Her desire does not seem to be regulated by a check list, a task, or to fulfill a requirement. Instead, it is almost like she is driven by a higher power. I do not get this type of feeling when interacting with most young people today, so I would say Isabel gives me pause. In fact, Isabel said she sometimes wonders why God allows people to suffer or feel such loss. She has no answers but does believe there is a purpose and as she said to me, I am fulfilling my purpose in life through the Foundation. Actually she put it more eloquently than I am perhaps writing it. I have to say her existential dialogue caught me off guard because most people do not interact with me this way anymore. When I was in graduate school and in my counseling degree program, I had many, many conversations like this, but not so many anymore.

Isabel has all the makings of becoming a powerful social change agent and I think in her own way she looks upon me in this fashion. She is intrigued by my "strength" and ability to take a horrific tragedy and try to use this to fuel my desire to help others. As I told Isabel, I am not always strong, and I do not always have a direction in mind. But I was certainly very appreciative to hear her kind words and her reflections.

While having lunch, Isabel introduced me to a name I must admit I never heard of before, and that is Joseph Kony. As Isabel was talking to me about a project for Mattie Miracle, she kept referring to the Kony 2012 video. She could tell I had no idea what she was talking about. This 2012 video went viral, it was all over You Tube, Facebook, etc! The premise of the video was to introduce the world to the horrors of Joseph Kony and to really call the video's viewer to action! Apparently it was very successful at that, and Isabel wanted to show me the video so I understood the nature and impact of social media.

Joseph Rao Kony is the leader of the Lord's Resistance Army (LRA), guerrilla group which used to operate in Uganda. While initially purporting to fight against government suppression, the LRA allegedly turned against Kony's own supporters, supposedly to "purify" the Acholi people and turn Uganda into a theocracy. Kony proclaims himself the spokesperson of God and a spirit medium, and has been considered by some as a cult of personality, and claims he is visited by a multinational host of 13 spirits, including a Chinese phantom. Kony has been accused by government entities of ordering the abduction of children to become child-sex slaves and child soldiers. An estimated 66,000 children became soldiers and from 1986 up until about 2009, there were at least 2 million people internally displaced.

Kony received a surge of attention in early March 2012 when a 30-minute documentary titled Kony 2012 by film maker Jason Russell for the campaign group Invisible Children Inc. was released. The intention of the production was to draw attention to Kony in an effort to increase United States involvement in the issue and have Kony arrested by the end of 2012.

A poll suggested that more than half of young adult Americans heard about Kony 2012 in the days following the video's release. If you are interested in watching this 30 minute video, go to: http://www.youtube.com/watch?v=Y4MnpzG5Sqc. But I warn you, there are aspects of the video that are emotionally disturbing.

In the past, people have mentioned to me the idea of doing a documentary or something such as that to promote Mattie Miracle and our cause and mission. That notion has remained on my mind and then Heidi sent me a link to a Washington Post article yesterday that highlighted a high school teen in Virginia who developed a documentary about childhood cancer. The documentary was 60 MINUTES long and the premise of the video was to bring awareness to the lack of funding for childhood cancer research and drug development. This is a fact, as a parent who lost a child to cancer, I am TIRED of hearing about. The drugs we use to fight childhood cancer are antiquated and in the last 20 years the FDA has approved two new cancer drugs for children. When you look at the facts and the simple notion that so much about the biology of childhood cancer is UNKNOWN, I am not hopeful about finding a cure for the numerous forms of childhood cancer anytime soon. With that being said, the psychological impact of cancer is very real, it is a day to day problem! In fact, the psychological impact of having your child diagnosed with cancer is truly a lifetime problem for the entire family. Yet unlike the issues we see with medical treatment, there are psychosocial tools, strategies, and services we can provide HERE and NOW to help children and their families with cancer. Things that do not require millions or billions of dollars to implement. Isabel understands this and therefore is very eager to get our message out and to do it in a compelling way. Needless to say, I am thrilled to be working with Isabel and I am excited to have a young person who is passionate about our work and wants to devote 100 or more hours to help us. As the project unfolds, our supporters will be hearing more about this. Amazing!!!!!

Before leaving Isabel's home, she let me borrow a book she just read entitled, The Fault is our Stars. It is a fictional account of a teenager who has thyroid cancer, but why Isabel gave me the book is that she thought I would appreciate the psychological portrayal of cancer. I began reading the first chapter and it already resonated with me. The main character in the story, Hazel, a sixteen year old girl is forced to go to a support group by her mother. Hazel's depiction of the support group is so spot on to me. She uses a word to describe the group, and the word is competition! Peter and I went to one support group meeting and then never went back for the exact same reason Hazel cites, there was a sense of competition in the group. As if another child's battle and loss was worse or more important than Mattie's. It was a feeling that infuriated me and how I did not explode in that meeting was truly a feat.

I never really looked at myself as a change agent or even inspirational. But when I interact with young people like Isabel, I begin to see things differently. So I agree with Gandhi, "You must be the change you wish to see in the world!"
 

June 11, 2013

Tuesday, June 11, 2013

Tuesday, June 11, 2013 -- Mattie died 196 weeks ago today!


Tonight's picture was taken in June of 2007. Over Memorial Day weekend that year, we took Mattie to visit Lancaster, PA, in other words, Amish country. In one of the towns, we stopped at a store which sold jams and other local products. Outside the store, they featured this cute Holstein cow statute. Mattie knew I loved black and white cows, so we posed with the cow. I particularly loved how Mattie gave the cow an adorable hug, almost as if the cow could feel it! It seems to speak to his innocence!



Quote of the day: It's not what you say out of your mouth that determines your life, it's what you whisper to yourself that has the most power! ~ Robert T. Kiyosaki


Last night was quite an experience! For those of us who live in the Washington, DC region, you know we had terrible storms. Everything from torrential rains to lightning and thunder. In some parts of our area, there was even a tornado! In any case, Peter was scheduled to fly home from Boston, but instead he spent many hours camped out at Logan Airport because his flight had been grounded. Several flights had been cancelled due to our storms.

I insisted on picking Peter up at the airport last night, which isn't far from our home. I knew he had a long day of client meetings and then travel. Peter and I did not meet up until after 12:15am. I arrived at the airport around 11:25pm and hung out in the waiting zone. What stunned me was the TRAFFIC! I expected no one at the airport. Instead, there were 40 other cars waiting with me and the roads around the airport looked like rush hour. I suppose that is what happens when flights are delayed or cancelled. It was a zoo!  

After a weekend of chores at home, it was a lovely change to go out today and have lunch with my college roommate, Leslie. We chatted about all sorts of things, we got caught up, and even had cheesecake together. Things do look better over cheesecake!

Peter's mom and my friend Heidi sent me several different articles to read. Which I will elaborate on over the next couple of days! One of the articles Barbara (Peter's mom) sent me has to do with the battle between Dunkin' Donuts versus Starbucks. When I read the headline, I immediately started laughing, because the premise of the article was to measure and compare the exact number of Dunkin' Donuts and Starbucks in many of the major cities of Massachusetts! My joke is that on almost every street corner in Boston you can find a Dunkin' Donuts! I have never seen such prevalence. It makes me laugh every time. But what was hysterical is that the Boston Globe reported this actual data confirming my hypothesis, which is that Dunkin' Donuts rules in Massachusetts. Some towns have as many as 19 different Dunkin' Donuts stores!!!

What the article does indicate besides the fact that coffee is the 'IN' thing now, it suggests that coffee is so popular because we all lead stressful and fast paced lives. The only thing that keeps us going throughout our work day is caffeine. Something to give us an "extra boost!" All I can say is WOW! What a social commentary, we work and live more frenetic lives and need to consume stimulants (though legal) to remain engaged! Wouldn't it be nice if people were going for coffee instead to unwind, socialize, and connect with people?! I am certain this maybe true for some people, but I imagine these folks are in the minority! Any case, after years of driving through Boston and counting Dunkin' Donuts, I am happy to have some real facts to pull from, facts that confirm to me that like the Boston Red Sox, Boston has another cult following.... Dunkin' Donuts fans. Test it out..... ask anyone you know from the Boston area about D&D, and I assure you, you will get a mouthful!

Coffee giants battling it out, From Quincy to Lowell, there’s a battle brewing for supremacy between Dunkin’ Donuts and Starbucks

http://www.bostonglobe.com/metro/regionals/north/2013/06/01/dunkin-donuts-and-starbucks-battle-out-for-coffee-supremacy-greater-boston/QK33ZCIAGcTNO04aVH6vJN/story.html

June 10, 2013

Monday, June 10, 2013

Monday, June 10, 2013


Tonight's picture was taken in June of 2008. It features two cuties who are no longer with us. Both Mattie and Patches were the picture of health here and if you were to tell me we would lose both of them to bone cancer, I most likely wouldn't have believed you! As you can see, Mattie naturally gravitated to bright and happy colors. Which explains why orange is Mattie Miracle's primary color.







Quote of the day: Imagine life is a game in which you are juggling five balls. The balls are called work, family, health, friends, and integrity. And you're keeping all of them in the air. But one day you finally come to understand that work is a rubber ball. If you drop it, it will bounce back. The other four balls...are made of glass. If you drop one of these, it will be irrevocably scuffed, nicked, perhaps even shattered. ~ James Patterson


It was another gray and rainy day in Washington, DC! But despite that I accomplished many different chores today. Throughout the day, I had several communications with one of the psycho-oncologists who is working with Mattie Miracle on a psychosocial standard of care. This psychologist had asked me to evaluate his NIH grant proposal. Basically the proposal is designed to help parents of children with cancer learn problem solving skills. Certainly each day in a hospital is filled with all sorts of dilemmas and being able to logically think these issues through to resolve them most effectively is crucial. But I take several issues with the training study and most importantly with how it is conveyed to parents in order to get them to participate.

One of the things that the hospital psychosocial staff said to me when Mattie was diagnosed with cancer that drove me absolutely batty was, "the research shows......." When your child is diagnosed with cancer, you may want to hear about what the research indicates regarding medical treatment, but I really could care LESS about what the psychological research showed or indicated (at least soon after Mattie was diagnosed, I wasn't in the right emotional place to listen to this!). In fact as soon as I heard someone pontificate psychological research to me, I would shut down or tune out! Why? Because my interpretation is that these people were saying that they knew how I felt, that they understood, and knew the steps, stages, or feelings going through my mind. Which couldn't be further from the truth! Therefore we discussed strategies today that could be useful to get parents to buy into a psychological research study right after their child is diagnosed with cancer. The funny part is some of the issues I mentioned and have highlighted to this research team in the past few weeks, have now become real life issues that the researchers are facing with their current subjects.

Immediately following the diagnosis of one's child with cancer, it is a volatile, anxiety ridden, and life altering time. This is a hard time to get a family to sign up for a psychological study, especially with the notion that information is being collected to help OTHERS! Dealing with immediate life and death situations, you become myopic, and the one and only true goal is to help your child, not necessarily countless others! This may not seem very nice, perhaps it even sounds harsh, but it is the nature of trying to find stability, to create a plan, and brace for whatever is about to come. Certainly collecting psychological data is vital and I think there is a sensitive way to do this, and this is what we discussed today. I would never have gained this knowledge without having learned this through Mattie's care. I would frankly rather be clueless and have Mattie, but since that isn't an option, I am compelled to use Mattie's battle to help guide the psychological treatment of others now walking in our footsteps.
 

June 9, 2013

Sunday, June 9, 2013

Sunday, June 9, 2013

Tonight's picture was taken in June of 2008. Mattie loved all sorts of experiments. In fact in front of him was a chemical experiment in the making, using one of my Pyrex baking trays no less! Mattie loved mad science toy kits and he appreciated understanding how and why things worked the way they did. I have no idea what would have been Mattie's favorite subject in school, we never got that far along. But Mattie was able to use both sides of his brain very easily. He understood the logic and mechanics of things which are so left brain, yet he also understood the art of creativity and emotions which are definitely right brain tasks.


Quote of the day: Too many people seem to believe that silence was a void that needed to be filled, even if nothing important was said. ~ Nicholas Sparks

I am happy to report that one large closet has been tackled and accomplished this weekend! That may not sound like a fun way to spend a weekend, but getting reorganized is important to me. Being without Peter in DC this weekend has been enlightening for me. Such enlightenment is best kept to myself and not worth discussing publicly on the blog. 

Spring and Summer are very good seasons for our home! They are good seasons because all our house plants return to the outdoors and we reclaim space! I refer to our living room as our "room with a view!" I just love all the LIGHT and seeing ALL the GREEN plants and trees! Some of my faithful readers may recall that I met an artist named Maxine Russell in Swansboro, NC, during our trip to Emerald Isle. This beautiful pinkish/purple vase sitting on our English Card Table is a Maxine piece. When the sun shines into our room, you should see how this glass glows! It reminds me of our trip to Emerald Isle.

I spent some time out on our deck today. As you can see our deck is in full bloom! We have been working at it for months now. How on earth we painted the deck and planted while planning the Foundation Walk is SO beyond me. But certainly I am happy that we did! The birds love stopping by and today while I was watering I got a lovely visit from our resident Jack Russell Terrier, JJ. Mattie and JJ grew up together and JJ still comes into our deck space in hopes of finding his buddy! JJ is not my dog, but I know how much joy JJ brought Mattie, so in essence he is special to Peter and me.

Incorporated into our deck are butterflies, suns, and moons. You will find them, you just have to look! The new addition to our garden this year is this amazing morning glory vine! This vine is virulent and it is taking over. In a matter of weeks it has grown FEET! In so many ways our deck is my secret garden, one doesn't expect to see this in the middle of the city, and it is why (I HEAR!) our neighbors above us love looking down and sharing in the greenery!

This afternoon, I went back to the assisted living facility to visit my friend Mary. When I got there, Mary was in a complete state. In addition to her emotional state, she was also freezing. Though it may not seem cold to the staff, when you are sedentary and living in air conditioning, it is VERY easy to get cold and a chill. You don't feel it as much when working and moving around, but if you aren't moving, you feel everything. I learned this first hand while caring for Mattie in the hospital! I was always, always freezing. So much so that my friend Junko would bring me hand warmers to put in my pockets to try to keep me warm! I spent quite a while getting Mary back up to room temperature and with me I brought homemade banana chocolate chip muffins. I baked them this morning and I figured I would share some of them with Mary. Mary, though mute, made it clear that she wanted to try a muffin. The irony is after getting her warm and feeding her a muffin, she pronounced that she was "MUCH BETTER!" So I would say this was a very successful visit.

With the power of technology, Peter sent me this lovely photo this evening of Boston by water! Peter has several client meetings in Boston tomorrow. Actually he is all over the map, with a client meeting in North Quincy, then another client meeting in Wellesley, and finally with a third client meeting in Boston proper. Peter returns back to DC Monday night!