Saturday, January 21, 2012

Saturday, January 21, 2012

Tonight's picture was taken in January of 2009. Mattie was invited to a friend's birthday party. Though all the other children were dropped off at the party, Peter and I had to stay with Mattie because he couldn't walk or move around on his own. He dealt with that pretty well and wasn't embarrassed. By that point in his treatment, he really wanted us around because we served interference and made sure all his needs were met. He understood and appreciated that. Nonetheless, the other children at the party who did not know about Mattie and his battle, observed us and were visibly curious and some just scared of the way Mattie looked and moved around. The party was a dress up dance party and as you can see, Mattie picked out a vest and a hat to wear. Mattie was always a beautiful and engaging child, and though cancer tried very hard to extinguish these qualities, it wasn't successful. The force within Mattie just couldn't be suppressed.

Quote of the day: For what you see and hear depends a good deal on where you are standing: It also depends on what sort of person you are. ~ C.S. Lewis


Yesterday I was in a bad mood, and unfortunately it carried over into today. Peter can attest to that as I began the day snapping at him. Naturally the anger and feelings I have are not meant to be directed at him, but over the course of the next couple of months I have taken on several big Foundation projects that make me feel like I am on overload. Overload now produces physical symptoms and a host of other reactions within me.

Today Peter and I had a meeting with the director of marketing at the Alexandria, VA Whole Foods store. This is the store hosting our 5% day on Wednesday. The store has had some changes in personnel and therefore the original person I was working with who accepted our application is no longer at the store. So in many ways, we are rebuilding our connections there. I will spare you some of the frustrations I have had with planning this event over the course of the last three weeks, but let me assure you that a great deal of thought and coordination has gone into this day. In fact more than one might anticipate! After meeting with Kristen today, she encouraged us to provide free giveaway items to the customers coming into the store (which can't be food, balloon, and flower related). Mind you in a given day the store has about 800 to 1000 customers. The ironic part is if we could afford to giveaway 1000s of items, then from my perspective we wouldn't need a 5% day. So later on this evening, I spent about two hours in Mattie's room combing through all our Foundation merchandise to pull from things we do not mind giving away. After all, we need to be some what conservative with our branded items because they cost us money to generate them. As of tonight, we are much better organized for Wednesday, but still have some last minute things to do!

However, when my friend Charlie sent me this quote today, my reaction to it was... BRILLIANT! It is brilliant because when I tell Mattie's story and battle to people, I can tell RIGHT away whether you are listening to me and whether you care about what I am saying. As my readers know I have shared this story with hundreds, NO maybe thousands of people, and it never ceases to amaze me that about 10% of the population has absolutely NO reaction to it. This is not because they are shocked and don't know what to say, it is because they are simply disinterested. Believe me I know and I am adept at feeling the difference. So C.S. Lewis' quote was profound because seeing and hearing something doesn't guarantee that the information will be absorbed and processed. So much depends on WHO you are, WHAT is important to you, and especially WHERE you are in your life and the kinds of experiences you have had.

Friday, January 20, 2012

Friday, January 20, 2012

Tonight's picture was taken in January of 2009 on the 102nd observatory floor of the Empire State Building. We lucked out that day, because there were NO lines to get into the elevators, and we were able to take our time and explore all the floors. Everyone working in the building was very friendly and considerate of Mattie and Mattie was committed to go as high up in the building as the elevator would take him. The height did not bother him, but being in a skyscraper fascinated him. This was his first and last trip ever visiting a skyscraper! We always called Mattie our "little engineer," because of his enjoyment and fascination with putting things together and understanding how they worked. Which was why we knew he would love his visit to the incredible Empire State Building.


Quote of the day: There is no education like adversity. ~ Benjamin Disraeli


My dad sent me tonight's quote, and I found it very applicable for my mood today. We are all faced with different types of adversity in life, and I suppose the issue is what do we learn from it? Today marks the 18th anniversary of my maternal grandmother's death. That might not sound earth shattering, after all, older adults do die and it is what we have come to accept as the natural order of life. However, regardless of age, and whether one expects a person's death or not, the death of a loved one is simply hard to accept and understand. My maternal grandmother lived in my parent's house, and therefore being raised in a multiple generational household, I assumed that my experience was normal and that everyone had such an enriching family life. Depending upon the context, there were times my grandmother was like a second mother to me, and then at other times she was like a much older sibling.

When I was in college, my grandmother suffered a massive stroke. The stroke left her paralyzed, with slurred speech, swallowing issues, and an altered personality. My parents continued to care for my grandmother at home for a year before placing her in a nursing home. However, the nursing home placement was a necessity since my mother got so ill from caregiving that she was in the intensive care unit for weeks. She was so run down from the physical and emotional toll of caregiving that she developed sepsis, however her case was so aggressive the medical staff did not know if she would survive or not. My mom was an outstanding, loving, and compassionate caregiver to my grandmother. So the apple, being me, did not fall far from the tree. Seeing my grandmother's body and mental state being transformed by a stroke was devastating, but seeing the ramifications of such a profound illness on a family system was equally as deadly. Which is most likely why entering graduate school, I began studying the impact of stress on family caregivers. Every research paper I wrote typically focused on this issue and naturally when it came time to select a dissertation topic, I felt the topic had basically picked me and not the other way around. My family's adversity inspired me to learn and to try to help others. However, I had no idea that now 18 years later, I would not only have the trauma of my grandmother dying, but also that of my son. Somehow both of these deaths seem to feed off of each other, despite being decades apart.

I spent the day working on various Foundation related items and one of the important components of the psychosocial symposium we are hosting on Capitol Hill in March is a parent panel. I believe it is very important for attendees to understand the ramifications of childhood cancer directly from the mouths of parents. It is vital to hear from the researchers and clinicians, but it is crucial to hear the stories, the struggles, and frankly the emotions of those who lived the battle. The first parent I asked to serve on this panel is Toni, Brandon's mom. As many of my readers know, Brandon was Mattie's big buddy and partner in cancer. When Toni received her invitation to speak, she called me immediately today to let me know that she would be there to support us and wouldn't miss this for the world. Later in the day when I was telling Toni I was having a bad day, her response was...... it was understandable and yet I am one of the strongest people she knows and she admires me. Toni is one of my friends I made through great adversity, and whether we wanted it or not, we got quite an education together.

Thursday, January 19, 2012

Thursday, January 19, 2012

Tonight's picture was taken in January of 2009. Mattie loved to sit on the floor of his hospital room and play. With Mattie was Liza. Liza is a gem! She was a childlife volunteer and Mattie gravitated to her as soon as he met her. You need to understand that Mattie was discerning. He didn't just play with anyone, nor did he allow whomever wanted to enter his room, admittance. I will always remember Liza for many reasons. Liza has the cutest voice, a bit like Glinda the good witch in the Wizard of Oz. I just loved hearing her talk. Liza loved reading and she introduced Mattie to some wonderful children's books. Liza was versatile though and she could play with just about anything and she really was motivated to give Peter and I a break when she was there. So in my mind she is a sensitive and perceptive young woman. In this picture, Mattie was working with one of his other favorite toys (when not creating with LEGOs), digging through clay to unearth mock dinosaur bones. Pay attention though to Mattie's left leg. This was the ONLY appendage Mattie did not have surgery on, and as such, that leg and foot developed the strength and the agility of an arm and a hand. It is amazing how the mind and the body do compensate. Mattie's left leg was named George, YES both arms and legs developed names while he was fighting cancer. Actually the names were generated by Mattie's orthopaedic surgeon, but Mattie related to and adopted them. Mattie's arms were Sam and Harold, and Mattie's right leg was Steve and his left leg was George, or as we later called it, Curious George. The left leg was always exploring and reaching out at people and even into their pockets, which is why "curious" was the perfect adjective to describe George.    

Quote of the day: Let your heart guide you. It whispers, so listen closely. ~ The Land Before Time

My friend Heidi asked me on Tuesday if I was going to attend zumba class today. I typically do not go on Thursdays, but when she mentioned it to me and I knew I had nothing scheduled this morning, I decided to go. I am glad I did! Exercising forces me out of our home, away from working for a bit, and interacting with people. It is through this class that I got reconnected with Jenny. Jenny is the instructor but she was also the room parent in Mattie's kindergarten class. Jenny is supporting the Foundation's walk this year in two ways, she is hosting a free zumba class at our May 20th Walk and is also donating 10 classes toward our annual raffle. I am very grateful to both forms of support and I am happy that I took a leap and decided to go to zumba class. I would have missed a lot if I hadn't tried it.

The other wonderful part about class is my connection with Heidi. Heidi and I have a lot in common and we are now working together on a girl scout troop project. Heidi's daughter is a girl scout and Heidi brought Mattie Miracle to the attention of the troop leaders. Needless to say, this group of 12 girls is raising money and with that money they are going to our local Build a Bear store and creating 100 teddy bears. These bears will be donated to Mattie Miracle, and together we will go to Georgetown University Hospital in February to distribute the bears to children. Stay tuned for more details. I will keep you posted along the way, but I am deeply moved how these young women are coming together to learn more about the Foundation and to help children with cancer.

My friend Ann went to Boston today to assist a family member battling cancer. Because she was going to be there all day, she asked me to help her with her children. In many ways, when I interact with children now, it is almost like a foreign experience. After all, I am not performing motherly duties on a regular basis, my afternoons are not filled with school pick ups, play dates, and school related activities. However, I always try as tonight's quote points out, to listen to my heart. Some days it is harder to hear, but even when it whispers I do try to pay attention. Typically though, around children, what whispers I figuratively hear are Mattie's. I remember what it was like raising him and the skills I developed by being his mother. Today's journey home in the car with Ann's two children was an absolute riot. Ann's son Michael is learning the names of all the bones in the human body. So literally we had an anatomy game going on in the car! Ann's daughter, Abbie was getting a kick out of this, and as I was playing along, I realized my anatomy which I studied in college and graduate school was still in my head.

As I was helping Abbie get ready for her gymnastics lesson, the fun continued. Abbie's hair needs to be tied back and out of her face for class, but we have our own routine with this. It too is a game. At one point, I reached for a hair brush and pretended the brush was actually talking to me and giving me a strategy for how to get Abbie to sit still so I could brush her hair. The thing is Abbie will eventually sit still to have her hair brushed, but not until the game is played out. This might sound strange perhaps to my readers, but it makes perfect sense to me. After the game was over, while Abbie was sitting getting her hair brushed, she asked me two questions. Basically she wanted to know how I understood her need to play a game before getting her hair brushed? To which I answered, "because I raised one just like you!" Her second question which she was dying to ask me was, "what strategy did the brush share with you?" She had me laughing hysterically! To play along, I made up a strategy which she found equally as funny.

So though I may not be raising Mattie now and have no children in my life, Mattie's seven years taught me MANY skills. When I listen to Mattie's inner voice within me, it makes me reflect on the fact that I could handle today because I was and will forever be the mother of a seven year old little boy who taught me skills beyond my years.

Wednesday, January 18, 2012

Wednesday, January 18, 2012

Tonight's picture was taken in January of 2009. It reflects one of my happy memories living in the PICU. Anna (Mattie's physical therapist) and I worked very hard by day at retraining Mattie to walk. Remember Mattie on November 12, 2008, had his right leg operated on, specifically he had his femur (the bone that extends from the hip to the knee) removed and replaced with a prosthetic. A leg operation would have been hard enough to recover from, but keep in mind that Mattie also had prosthetics in both his right and left arms and left wrist. That did not provide him with much upper body strength to use a walker. In fact, Anna tried a front moving walker, and Mattie hated it. He had a hard time moving the walker forward. So then Anna tried him on this reverse walker, and Mattie seemed to gravitate to it. In fact, Mattie began taking a few steps and as you can see, Anna raised her arms in victory. Though Mattie tried very hard and had a great support team helping him which was comprised of Anna, Linda (Mattie's Childlife Specialist), Meg (one of Mattie's Childlife Interns, who was his racing buddy), and Jenny and Jessie (Mattie's art therapists), Mattie never was able to walk independently after his surgery in November of 2008. So the victory you see in this picture was short lived and in many ways, it was devastating for us to not only have a child battling cancer, but also a child with significant disabilities. The combination was hard to manage at times, and naturally Mattie understood his limitations and this impacted his mental health in profound ways.


Quote of the day: Vision is the art of seeing the invisible. ~ Jonathan Swift

The Foundation has exciting news to announce! Today, our Mattie Miracle Face of Hope, Lauren Chelenza launched her new website: www.bowsforhope.com.   Lauren was diagnosed with Osteosarcoma about a week after Mattie, in August of 2008. However, we did not meet Lauren and her family through Georgetown University Hospital. That is because Lauren lives in Pennsylvania and was treated at a hospital in her state. So the question is how did we connect with Lauren? Lauren's aunt found Mattie's blog on the Internet and told her sister Carey (Lauren's mom) to read it pretty soon after Lauren was diagnosed. Carey then emailed me and the rest is history. Carey and I immediately related to each other, we had similar stories, had similar feelings about the experience, and since the medical treatment for cancer is basically standardized across the country, Mattie and Lauren were undergoing treatments about a week or so apart from each other. Though Mattie and Lauren NEVER met each other, they in a way had a camaraderie because they were fighting the same devastating disease at the same time. I am sure in many ways it is hard for Lauren to accept that Mattie died, because at her tender age of 13, I imagine it causes her to reflect on her own mortality.

Peter and I met Lauren and her family for the first time in December of 2009, at a Candlelighter's Christmas tree ribbon event in Washington, DC. Lauren has a brother whose name is Matthew and happens to be my Mattie's age. In fact, Matthew sent my Mattie gifts while he was battling cancer. Matthew and Mattie had similar tastes and Matthew's gifts always made Mattie laugh! Though Peter and I were traumatized at that Candlelighter's event, Lauren left an impression on us. As you can see from her picture she is a beautiful girl with a captivating smile. So bright, you wouldn't imagine that this face has experienced the horror of Osteosarcoma.

Lauren has taken her experience and uses it to bring awareness to her community. She began designing duct tape bows for a class assignment, and the next thing she knew she wasn't only generating funds but she was promoting a cause and spreading awareness of childhood cancer. Lauren to this date has generated thousands of dollars for Mattie Miracle, and I encourage you to visit her website where you can read HER own story. Lauren created her non-profit whose sole mission is to raise money for Mattie Miracle. She is passionate about this cause, she is energetic about it, and from my perspective she is a fine role model for teenage girls. She shows us all that with determination, a vision, and creativity anything is possible. Please visit Lauren's website and tell others about her great work.

Now I am switching gears to a totally different topic. The topic is Bald Barbie. Yes you read this correctly. A mom by the name of Rebecca Sypin contacted Mattel and asked the toy company to consider designing a bald version of Barbie. Rebecca's daughter is battling leukemia and she started a Facebook campaign which is gaining TREMENDOUS support. She feels that children with cancer and those with other diseases that cause hair loss would identify with this doll, but also the doll would bring public awareness to the crisis. Just an aside which I want to share with you...... if you ask most parents who have a child with cancer about their thoughts on the advocacy and support for breast cancer or even mention Susan G. Komen, you may be surprised by the reaction you get. Many parents will outright tell you.... I hate pink! I am sure that may sound shocking to you, but I believe this feeling is completely grounded in the frustration that childhood cancer is NOT promoted and in many cases it is swept under the rug by pharmaceutical companies and even big advocacy groups. In particular, I am singling out the American Cancer Society (ACS) since they blogged about bald Barbie and absolutely INCENSED the childhood cancer community. Which I will share with you below.

If you want to read about Rebecca's campaign, please click on this link:

http://abclocal.go.com/kabc/story?section=news/local/los_angeles&id=8503355

Over the course of the last two days, a major debate has unfolded. Andrew Becker, a director of media relations for the American Cancer Society had this to say about bald Barbie, ... the Bald Barbie movement could “do more harm than good for kids and parents." In addition, though you can't read his initial posting since it has been SCRUBBED from the Internet, he was so bold to state that childhood cancer was rare and therefore calling attention to it with a doll will only breed fear. In fact, his comments were down right insensitive and misinformed especially to all of us who are in a battle or lost the battle to childhood cancer. Frankly if I were the American Cancer Society, I would be wondering if Mr. Becker was really cut out for his job. Several parents posted that they wanted him to be fired. You can read the controversy through this link:

http://abcnews.go.com/blogs/health/2012/01/18/american-cancer-society-blogger-apologizes-for-bald-barbie-flub/

Today, after being blasted out of the water for over a day from childhood cancer groups, Andrew Becker (from ACS) apologized. You can click on the link below to read his apology. The problem however is the damage is already done. In fact I would like to think Mr. Becker is an isolated case of cluelessness. But he is not and ironically he represents a major cancer group. However, those of us in the cancer world know that ACS raises a lot of money but most of it goes toward their administrative overhead instead of being allocated to meaningful treatments and outcomes.

http://acspressroom.wordpress.com/2012/01/13/bald-barbie-demand-is-an-over-reach/

However, after sifting through all of this for the last two days, a part of me sits and ponders what I think about the whole bald Barbie campaign and using social media in this way to get the word out. I definitely understand Rebecca's motivations and also what she is trying to do. I admire her ingenuity and creativity and yet at the same time it just makes me pause.


I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "I was sad to read that you were still feeling so badly on Sunday. I was grateful that you advocated for YOURSELF by calling the doctor and bless Peter for going to the pharmacy. Of course, Peter would respond that way. He is such a warm and caring man. As I've mentioned before, there are many qualities of Peter that remind me of my Dad. His response to you is one of them. What I feel is that Peter gives of himself in the important ways. He is able to connect with those that he cares about with a "listening heart." I appreciate the quotes that Charlie sends as they give me much to think about. The Tillich quote and the Valett one, the day before, stress the importance of not listening to some one's words, listen to their heart. I read the story and was reminded that our greatest learnings are those that we discover on our own. Thank you for sharing it with all of us. The playing of Dancing Queen at Zumba was beautiful. I'm glad that you were able to get to the class yesterday and thanks for your note last night. I listened to my body and went to bed early. It isn't something that I've been able to do lately. Caring for others beyond ourselves is a gift to those that we reach out to. The danger is that we don't care for ourselves as completely. This isn't a subtle comment about your care of Mattie. Peter and you went to the limit with Mattie and for good cause, he is and was your child. I know that it was very difficult to subject Mattie to all of his surgeries and treatments, only to have him not survive in the end, however, your words tell it all; " that was where the great meaning lies." Your courage and resolve to give him all of the experiences that you did before and during the 14 months of his illness are a lesson plan for parents. It left you with this big hole! Each time that you speak of another organization wanting to support the Foundation, I know that others are listening with their heart. It confirms the goodness that does exist within our world. I pray that you are feeling stronger today and send my love to you in all ways."

Tuesday, January 17, 2012

Tuesday, January 17, 2012 -- Mattie died 123 weeks ago today.

Tonight's picture was taken in January of 2009. After our trip to New York City, Mattie came home with this great Empire State Building erector set. Mattie loved his trip up to the 102nd observatory, and decided he wanted a replica of this fine building in our living room. This set may look cute, but it took Peter and Mattie HOURS to assemble it. By the way, this Empire State Building is still standing tall in Mattie's room today. Building and creating were our life savers while Mattie was battling cancer. Even on horrible days, and we had many of them, we all built together and created. I think it kept us sane, talking to each other, and helped us forget life for a while and enabled us to transfer our energies to something more manageable and pleasurable. This erector set will always remind me of our trip to New York City together.

Quote of the day: The first duty of love is to listen. ~ Paul Tillich


I went to zumba today, and thankfully felt up to doing that. I hadn't moved in days, and really needed to escape our home and clear my head. Zumba seems like the perfect solution to many of my stresses. When I walked into class today, the instructor, Jenny and I began chatting. There are several moms from Mattie's school in the class and when I explained to Jenny that I was surprised I never met this one mom in particular, this caused us to pause. Jenny explained last week that this particular mom has a fourth grader at Mattie's school. My automatic reaction last week was... that is why I do not know her because Mattie was in kindergarten. Jenny and I let that comment sit, but both of us have been reflecting on it since last week. Because this mom with the fourth grader is actually a mom in Mattie's grade. Mattie would have been in fourth grade this year, but in my world, Mattie will always be a kindergartner. For me life stopped there at age 6, and at times I assume this is true for all of Mattie's friends. Of course it isn't! I am the only one with arrested development here. Jenny began our class today with ABBA's Dancing Queen. She did not say anything out loud, but to me that was her tribute to Mattie. Since we both knew that was Mattie's favorite song used at the hospital for his physical therapy sessions.

My friend Charlie sent me this quote today along with an article on listening which I will share below with you. Charlie is a former student of mine and I have found over the years that my very talented and good students remain in contact with me. I am very lucky to have had such a wonderful group of students who educated me and taught me to be a solid professor, and I feel particularly honored that they reached out to me throughout Mattie's battle with cancer and now our grief. As many of my faithful readers know, Charlie wrote to me each and every day while Mattie was battling cancer. She continues to send me quotes and I store them in a database that I pull from when I need a quote to address my feelings or thoughts for the day.

Today was Ann's birthday. For those coming to this blog for the first time, Ann was our Team Mattie coordinator. For 14 months while Mattie battled cancer, and actually beyond as we were mourning intensely, she coordinated lunches and dinners for us.  I did not see the kitchen throughout Mattie's battle, and without the food from Team Mattie, I most likely wouldn't have eaten. Stopping to get food did not seem possible or even desirable to me. Actually caring for my needs was VERY low on my list because Mattie was our sole focus. I know Peter felt the same way! However, Ann's support goes beyond coordination of meals, in a nutshell we were basically united by cancer and death and therefore it provides for a rather unusual and at times complicated bond. We are different people and have very different needs and yet we are there for each other.  

In my opinion, birthdays should be celebrated and certainly Ann has done a great deal for us, so there would be no way such a day could pass without us acknowledging her. A group of six of us met up for lunch to celebrate the day. As I told Ann in jest, today is not about her. It is about the opportunity for those in her life to acknowledge her. The art of a good friendship, as tonight's quote eloquently points out, is to listen. Though a gathering may not have been Ann's choice, I am happy she listened to my feelings. In fact, one of the greatest gifts of love we can give another is time together and time to listen. Listening sounds easy, but it actually is a very challenging and difficult skill. In fact, if you are listening deeply to someone, you will find it exhausting.

My friend Charlie sent me the article below, and when I read it, it simply resonated with me. Which I imagine she knew it would. The article is written by a Native American woman, who reflects on how the art of listening was taught to her by her father. I actually found the life lessons her father taught her very moving because he did not sit down and chat with her about the art and skill of listening. Nor did he model the behavior. He simply asked her thought provoking questions and gave her the freedom to figure out the message on her own time. She made mistakes along the way, but she was persistent and continued to try to hear someone's heart and listen between the words. My wish for all of you is that you always have someone in your life like Paula (the author of the article) who just doesn't listen but listens to your heart and between your words. Because it is usually between our words, that great meaning lies.  

If You Really Pay Attention

--by Paula Underwood (Sep 21, 2009)

When I was a little bitty kiddy, about five, my Dad began a process … anytime somebody came and said something to us, my dad would say, "You remember what he said, honey girl?” I would tell my father what the person said until I got so good at it that I could repeat verbatim even long presentations of what the person had said.

And he did this all the time.

Finally, one day there was this old gentleman, Richard Thompson. I still remember his name, he lived across the street. And every time my Dad started to mow the lawn, there came Mr. Thompson. And so I would stand out there.

Dad says, “You might come and listen to this man, honey girl. He’s pretty interesting.” And so I listened to him, and then my dad would say, “What did you hear him say?” And I would tell him.

Well, eventually I was repeating all the stories he liked to share with my dad verbatim. I knew them all by heart.

And my Dad says, “You’re getting pretty good at that. But did you hear his heart?" And I thought, what? So I went around for days with my ear to people's chest trying to hear their hearts.

Finally my Dad created another learning situation for me by asking my mother to read an article from the newspaper. He says “Well, I guess if you want to understand that article, you have to read between the lines."

I thought, "Oh, read between the lines. Hear between the words."

So the next time I listened to Mr. Thompson’s stories, I tried to listen between the words. My Dad said, “I know you know his story, but did you hear his heart?” And I said, "Yes. He is very lonely and comes and shares his memories with you again and again because he’s asking you to keep him company in his memories."

It just came out of me. In other words, my heart echoed his heart.

And when you can listen at that level, then you can hear not only the people. If you really pay attention, you can hear what the Universe is saying.

--Paula Underwood, clan mother of the Turtle clan, Iroquois nation

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	Kristen Kinnetz (MA OTN)	Re: Mattie Miracle and 5% Day	01/11/2012 9:53 am	10 k
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	Anderson, Heidi S.	RE: Whole Foods Event	01/11/2012 8:35 am	32 k
	Anderson, Heidi S.	RE: Girl Scout Meeting	01/11/2012 8:21 am	16 k
	Anderson, Heidi S.	Girl Scout Meeting	01/11/2012 7:34 am	3 k
	Kristen Snyder	Tuesday	01/10/2012 10:51 pm	2 k
	Mooney, Tim	FW: Mattie Miracle Flyer	01/10/2012 10:38 pm	109 k

Preview

Monday, January 16, 2012

Monday, January 16, 2012

Tonight's picture was taken in January of 2009. We were center stage at the Minskoff Theatre in New York City. Jenny, Mattie's outstanding art therapist, helped us obtain 6 special tickets to the Lion King and when the show was over, we got a back stage tour by the actress who played Nala (Simba's girlfriend in the Lion King). This actress was a lovely person and she tried very hard to engage Mattie! She had us pose for a picture, and she asked us to roar like a lion! Karen captured us in motion and as you can see Mattie thought the whole thing was funny!


Quote of the day: You give but little when you give of your possessions. It is when you give of yourself that you truly give. ~ Kahlil Gibran

Last night, I could tell my symptoms were not getting any better and resting wasn't helping. So at 9:30pm, I called my doctor's office and spoke to the on-call physician. For me that is always tricky because my physician understands my case, but that isn't true for all her colleagues. Luckily however, my physician's fellow was on call, and we had met each other before during my office visits. Needless to say, she prescribed more antibiotics and at 10pm, Peter was driving to CVS. My pain was intense enough for me to mobilize forces at 9:30pm on a Sunday, and I knew without new medication, there was no way I could have made it through the night with the pain I was in.

Thankfully the antibiotics are starting to work and I was able to keep my schedule today. I had a fundraising meeting scheduled today between the salon I go to and a cultural group in DC. Specifically the group is called, Italians in DC. This group is interested in promoting Mattie Miracle's cause and they were initially attracted to us because I am an Italian American. We have already scheduled the event for March 31, starting at 8pm. So as the plans unfold, I will certainly keep my readers informed.

Today's meeting seems to illustrate Gibran's quote. After all, these individuals are not giving me their possessions. In fact, they are giving me MUCH more than that! They are sharing their time, expertise, skills, and giving me access to both of their communities! To me this is an enormous gift because they are all busy professionals, but they are people who feel compelled to help others and to make a personal difference in this world. This was a very touching philosophy to hear and a philosophy that in my perspective makes the world more meaningful and a better place. It would be nice if we all had a village supporting us. But life doesn't always work out that way. Instead, I do believe villages (or support networks) are created one person at a time!

Sunday, January 15, 2012

Tonight's picture was taken in January of 2009. We took Mattie to New York City to start his experimental treatment of MTP at Memorial Sloan Kettering. Our experiences at Sloan Kettering were LESS than stellar. In fact, the majority of the staff we interacted with were surly and attitudinal and I am thankful we did not have to stay there for more than one week. I will explain more about this below. In this picture, Mattie was in the childlife playroom at Sloan. The playroom was HUGE, as big as a warehouse and just as noisy and chaotic. The blue plane behind Mattie, was made by him. Linda (Mattie's childlife specialist) contacted Sloan's childlife director and gave her a heads up that Mattie loved constructing with boxes. So she saved several for Mattie and gave them to him for his day in the hospital. As you can see, Mattie had a way with boxes and the Sloan staff seemed overwhelmed by Mattie's desire to create and be different. I do want you to know that we did take this blue plane in a taxi with us back to the hotel, and though we did not transport it back to DC, we took many pictures for Mattie to remember his creation!

Quote of the day: The human heart feels things the eyes cannot see, and knows what the mind cannot understand. ~ Robert Valett

Today was like living in the land of the lost. I never got out of bed today, that is how good I am feeling. I have spent the day watching Hallmark movies and thankfully having big windows in our bedroom, I can see the birds and see the traffic going by at the same time.

As I was selecting the picture for the blog tonight, I couldn't help but reflect upon our experiences at Sloan. Sloan Kettering was not a positive experience for us for so many reasons. It was at Sloan that the head of pediatric sarcomas let us know that there were NO known cases of children with multifocal osteosarcoma who survived treatment in the world! Therefore in his perspective he recommended palliative care and no aggressive treatment for Mattie. That was a monumental piece of information to receive, and I felt he was talking to me as if Mattie were a number and not a live human being. We then had the pleasure to meeting the head of orthopaedic surgery, who was equally as depressing and just as dysfunctional at communicating with families. This surgeon had an overinflated ego the size of a watermelon. He made us wait in an exam room with Mattie for over two hours. It was beyond insensitive. If that wasn't bad enough, when he graced us with his presence he started talking about very grave things in front of Mattie. At which point I literally stopped him and told him that I was going to bring Mattie outside to wait with my parents and Karen who were in the waiting room. When I got back into the room, the doctor literally looked at Peter and I for five minutes. Neither Peter nor I knew what to make out of this odd behavior. Mind you we were paying for this staring contest. Any case, after the ridiculously long silence, he then began shaking his head and said he did not know what to say other than he was sorry. He too recommended NO surgery and palliative care. By the time we finished with both of these doctors we felt mortally wounded and that we were given a death sentence. Interestingly enough neither doctor seemed concerned by this emotional bomb they laid upon us that day.

Naturally these two doctors were ultimately right, but here is the thing..... could we follow this advice and not try our hardest to give Mattie some quality of life? I recall after hearing this news, we contacted Georgetown Hospital and Mattie's oncologist. The difference between Sloan and Georgetown was like night and day. Georgetown believes in hope and treating every childhood cancer aggressively, and as I always say, Georgetown gave us 14 extra months with Mattie, time we may not have had otherwise. Was the battle worth it in the end? Some may disagree with our choices, but there is NO way I could have lived with myself if we did not try everything to save Mattie. All the decisions, each day of the cancer battle, all the ups and downs of the process, and Mattie's death remain within me. They are memories all trapped within my mind and body and this stress (though some would say this stress is no longer a real threat) simply builds up at times and makes me sick.