Tuesday, June 18, 2013

Tuesday, June 18, 2013 -- Mattie died 197 weeks ago today.

Tonight's picture was taken on June 18, 2006, Father's Day! It is hard to believe that this was seven years ago today. None of us know what the future holds and I certainly never thought we wouldn't be having more Father's Days with Mattie by our side.


Quote of the day: Moral wounds have this peculiarity - they may be hidden, but they never close; always painful, always ready to bleed when touched, they remain fresh and open in the heart. ~  Alexandre Dumas

I had several meetings at Georgetown University Hospital today. One meeting was about the adoption of a psychosocial screening tool (I don't mean a hammer or screwdriver, I am referring to a survey or questionnaire that has both reliability and validity with the childhood cancer population) in the pediatric oncology clinic. I had brought this issue (the need for such a screening) to the medical director's attention about a year and a half ago. Today we all met to discuss this possibility, a possibility that will come to fruition thanks to a grant received by the Hospital. From my standpoint, psychosocial care is as important at the medical care a child and family receives. Therefore, as soon as a child is diagnosed, from my perspective, psychosocial screenings need to be conducted. As it stands now, hospitals tend to provide services only when a psychological issue or crisis arises. By this point, especially in cancer care, too much emotional damage has already occurred. Therefore offering families psychosocial screenings early on in the process, will enable them to get the support they need during each stage of treatment. In addition, the beauty of having a screening tool is that it can help medical professionals determine which families need support and interventions right away.

We had this meeting today in the clinic's library! That may not sound earth shattering to any of you, but perhaps it will when I tell you what this room means to Peter and me. It is within this library that we first met with Mattie's care team to discuss Mattie's cancer, his treatment, and then also broke the news to Mattie that he had cancer. It is within this room that we received test results of Mattie's which indicated his cancer spread, and it is within this room that we learned that there was NOTHING else that could be done for Mattie medically. So in all reality, this is not a room with many good memories. Yet for mostly everyone else in the meeting, the room was just a room! Not sure what to say about this reality, other than it registered with me.

Another fact that registers with me is that few grant making entities want to hear the insights and feedback from parents like myself.... a parent who lost a child to cancer. Therefore, when designing a research study (a study which will be funded) in most cases the conditions of the study stipulate that the parents participating in the research must either have a child in treatment or one who is in the survivorship phase (meaning off treatment with no evidence of disease). I am not sure about you, but this reality is a hard pill for me to swallow. I can't think of a better way to make bereaved parents feel more alone, isolated, and disengaged from the world. Basically such grant making entities are saying that our voices do not need to be heard, or simply they are not willing to fund a study to hear our perspective. Our perspectives do not matter or count because of the outcome. It is a humbling fact, and unfortunately I have faced this ugliness before, not just today!

The second meeting I had at the Hospital was with one of Mattie's nurse. Over a year ago, Anita, asked Mattie Miracle whether we would consider funding a monthly support group luncheon for pediatric nurses. We agreed to this in 2012, and now we are funding this luncheon for the second year in a row. Mattie's nurses are very special and competent individuals. They work extremely hard and need outlets to help them manage difficult situations, crises, and challenges. Peter and I are big nurse advocates and we believe if nurses feel supported they can perform their jobs even more effectively. Anita and I chatted about the group, its progress, and a host of other things. It was lovely to catch up with Anita, but as I reflect back on 2008-2009, many of Mattie's in-patient nurses no longer work at Georgetown.

Switching gears, I came across a story today about a seven year old boy named Miles Ambridge. Miles is in a wheelchair and has a genetic disease called spinal muscular atrophy. The title of the story is Miles Ambridge, 7-Year-Old In Wheelchair, Isolated By Photographer In Class Picture. When I saw this child's class picture, my mind and heart aches. It reminded me of Mattie and how people who passed him by would either glare or ostracize him. Needless to say, when Miles' family saw this class picture they were very upset. It features Miles truly separated from the class!!! I think there is a learning lesson to be found in this story! I do not think the photographer meant to single out Miles, and who knows what his teacher was thinking when this photo was taken. Most she was simply trying to manage the entire class and take the photo. But sometimes when you have a child with a special need in your presence, special accommodations do need to be made. Putting that aside, I think we all need to be aware of our surroundings, who is amongst us, and how we would wish to be treated if we were in Miles' shoes. Chances are if everyone around him had that mindset, and not such a mindset but an appreciation and sensitivity for our fellow human beings, such a photo would never have been taken in the first place.

http://www.huffingtonpost.com/2013/06/17/miles-ambridge-wheelchair-class-photo_n_3454857.html?utm_hp_ref=mostpopular

Monday, June 17, 2013

Monday, June 17, 2013

Tonight's picture was taken in June of 2006. Mattie was four years old and we took him to Lake Accotink in Springfield, VA to see the famous cardboard boat regatta. Honestly someone could have described this to me, but seeing it in person is something else. People make boats out of cardboard, decorate them, and then enter them in a race. It is truly a family fun day and Mattie's hope was that one day he and Peter would enter this race and build a boat together. We took Mattie to the race in 2006, 2007, and 2008. I included a link so you can see a snippet from 2013's race.  http://www.youtube.com/watch?v=zBN0wrsFKS8


Quote of the day: Keep love in your heart. A life without it is like a sunless garden when the flowers are dead. The consciousness of loving and being loved brings a warmth and a richness to life that nothing else can bring. ~ Oscar Wilde


The day after Father's Day somehow doesn't seem any better than Father's Day itself. Peter was in a funk, yet went to work. Which I am sure is hard, since at work he can't appear to be in a funk. This morning, we met with a young professional who is doing an internship at NIH. She is working for ten weeks with one of the psycho-oncologists Mattie Miracle is working diligently with on brainstorming a psychosocial standard of care. The interview was really to shed light on the history of how the psychosocial think tank for a standard of care was born and developed. Which naturally meant sharing part of our Mattie story, the birth of the Foundation, the mission of the Foundation, and how Peter and I had the vision to vocalize a need for such a standard. A standard that would detail the minimal level of psychological care children with cancer and their families should have access to around the Country. Care that is based on empirical research or professional insights and consensus. Right now, psychological care is haphazard. It simply depends on the cancer institution you are seeking treatment, but part of the problem is such treatment isn't well funded and also different professionals provide this treatment at different hospitals across the country. Which makes standardizing things a bit more complicated, but not impossible! Keep in mind that not every hospital has child psychiatrists, psychologists, or Child Life Specialists on staff!

In many ways when we meet with someone like this professional today who is interested in our story and hearing about our experiences, it is very therapeutic for both of us. These are not conversations we have on a regular basis with people, so when we have the opportunity to have them, they are refreshing. I am sure there are many reasons why this is therapeutic for us, but first and foremost I believe these stories allow us to be parents again. We get to talk about Mattie and share his life, spirit, and battle. After all, when we meet with our friends and hear stories about their children, we can't reciprocate with them. Our story is VERY different, our story is every parent's worst nightmare. So therefore it becomes a story that isn't discussed typically. Which is why meetings like this one today are so special.

A friend shared with me an exposé that CNN highlighted last week about cancer charities. I was intrigued so I Googled the coverage for myself so I could hear it first hand. I attached the link below, you might be absolutely amazed by this story. A story in which people are accumulating MILLIONS of dollars a year from the public and yet the majority of the money is going to pay the salaries of the those doing the soliciting. I think to myself, if we could raise $45 million, like some of these groups, there is NO telling what Mattie Miracle could accomplish. I think it is terrible and beyond unethical that people could accept contributions and prey upon the kindness, compassion, and generosity of the public. Armed with this information, I can't imagine what I would feel like if I had contributed to any one of these 50 unscrupulous charities. We live in a world where we must first verify how, where, and who is using the funds we decide to contribute to a charity. Not all 501c3s are created equal and this video clip illustrates this in spades!!!

Above the Law: America's Worst Charities
http://www.cnn.com/2013/06/13/us/worst-charities/index.html?hpt=hp_c2

Sunday, June 16, 2013

Sunday, June 16, 2013

Tonight's picture was taken in April of 2006. Mattie was four years old and as you can see Mattie and Peter were wearing matching preschool t-shirts! I happen to like this photo a lot and in honor of Father's Day, I decided to post it. When I snapped this photo years ago, it never dawned on me that taking photos of my two boys together would be FINITE.


A POEM IN HONOR OF FATHER'S DAY................................

A DAD HURTS TOO by Judi Walker

People don’t always see the tears a dad cries,
His heart is broken too when his child dies.
He tries to hold it together and be strong,
Even though his world’s gone wrong.
He holds his wife as her tears fall,
Comforts her through it all,
He goes through his day doing what he’s supposed to do,
But a piece of his heart has been ripped away too.
So when he’s alone he lets out his pain,
And his tears come like falling rain,
His world has crashed in around him,
And a world that was once bright has gone dim.
He feels he has to be strong for others,
But Dads hurt too, not just the Mothers,
He searches for answers but none are to be found,
He hides behind a mask when he is feeling down.
He smiles through his tears,
He struggles and holds in his fears,
But what you see on the outside is not always real,
Men don’t always show how they really feel.
So I’d like to ask a favor of you,
The next time you see a mother hurting 
over the loss of her child, 
please remember…..
A Dad hurts too.


This is our fourth Father's Day without Mattie. I am sure many of our friends and family think that it must be getting easier for us from year to year and that only the first holiday without Mattie is the hardiest!!! If you believe this, then I want to dispel this MYTH right away!!! TIME DOES NOT HEAL ALL WOUNDS and YES GOD DOES GIVE PEOPLE MORE THAN THEY CAN HANDLE!!!!

My faithful reads know how much I LOVE platitudes and some days more than others, I feel the need to step on my soap box and speak out about them. Today is one of those days. I personally like Father's Day just as much as Mother's Day, and if you can't understand what I am trying to say, then simply stated, I dislike both holidays. Holidays have a way of exacerbating pain and what I find worse is that with time people around us absolutely skirt around the issues with us and just don't know what to say. Or perhaps others say nothing because things are perceived as a non-issue because of the lapse of time!!! However, everything about surviving and processing through grief is about REMEMBERING!!! Therefore, though Mattie has been gone for four Father's Days, Peter is still Mattie's dad, and as such I feel that we should acknowledge the day somehow. But how do you do that? After all it isn't like we can easily get together with friends to celebrate the day, and if you are thinking why not then I assure you the awkwardness comes from both sides of the equation! So where do parents of bereaved children fit into the world?! The answer is I DON'T know!!

My friend Jenny sent me a link to a blog the other day, which is written by a mom who also lost her son. In her writings she refers to herself as an alien (the kind from another planet!). I get that feeling wholeheartedly on a daily basis, but it is definitely more pronounced during holidays. Below you will find two things I wanted to share with you. One is a message posted by a mom who lost a son. She asked her husband how he feels about Father's Day, and I found his response very insightful and accurate from my own experience. The second item is a message from my mom to Peter. I think she did a wonderful job capturing the essence of Peter and the connection he had with Mattie.

 --------------------------------------------------------------------------------------------------------------
Father's Day after losing a child (From 'Surviving the loss of a child in the real world' blog)

I talked to my husband this week about Father's Day and how a father feels about the holiday and life in general after losing a child. From my husband's perspective this is the information I got--

The father feels responsible for their child's death regardless if they could have prevented it or not.  As the head of the house, as the man of the house, as the protector of the family they often feel responsible for the loss of the child.  They did not protect their child from harm (or illness, etc.), somehow they should have been able to do so.  The father is the strong one in the family, made to keep his family safe and this can result in a lot of guilt or shame or pain if a death results.

The holiday is not one they really want to celebrate since the family isn't whole.  It is not that they do not love their children that are remaining but during this holiday (and most) it becomes terribly obvious that the child is gone.  It is very apparent to all of us in the family that DJ is not here to celebrate with his Dad.

What does a father want for Father's Day?  He wants to hear about his child.  Phone calls, conversations, notes, cards, memories about their child is the best gift.  To hear something wonderful about their child that is gone is the best gift of all.  Do the father's ever ask for this?  Of course not...do they wish everyone knew about this request? Absolutely!

So what are you going to give a bereaved father this weekend?  A memory, a humorous story, a laugh, a cry?  The mention of a father's child is the best gift of all!
----------------------------------------------------------------------------------

 

A Father's Day Tribute by Virginia R. Sardi

 

Your love and commitment to Mattie when he was well gave him six beautiful years of life that made him the incredible person he became. Although only a child he had a mature comprehension of people and the judgment of the wise that in real terms made him a man, many years beyond his young age. You nurtured that understanding and set a shining example of what Fatherhood is all about in the golden period of his life.

 

When Mattie became ill, you were stalwart and constant in your support of him no matter the pressures that pounded you at every turn. He looked to you for attitude and found the signs of strength to emulate which gave him the courage to fight the devil of cancer and never give up while there was life within him. It takes a strong man to accomplish this when his heart is breaking but you never let him down. Even in the depths of despair, you kept your focus and proved that you had the right stuff to be worthy of being honored as a great father. Happy Father's Day!

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.


 

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.

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

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!"