Tuesday, March 24, 2015

Tuesday, March 24, 2015 -- Mattie died 289 weeks ago today.

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom at the hospital and as you can see he was wearing a mask because he was neutropenic. Meaning his white blood cell count was very low, as an aftermath of the chemotherapy treatment he had the week before. Because there was a hands on activity in the playroom that he wanted to participate in, he agreed to put on a mask (to prevent him coming in contact with germs). Typically Mattie under no circumstances wanted to wear a mask. I am sure that tied into the fact that Mattie had sensory issues as a toddler/preschooler, yet he was motivated that day. Mattie loved anything that was messy and that he could get to manipulate with his hands and experiment with. That day they were making a slimy gel/clay like substance to play with and the "little scientist" came out in Mattie.


Quote of the day: Dreams and goals must come from the heart, not from ego. ~ Isa Zapata


Yesterday I was glued to the computer! So last night when my friend asked me if I wanted to get together today to walk and have lunch, I thought that was a stellar idea. Naturally I could have continued to work but I needed a break. We walked over four miles today in 40 degree weather. I am waiting for spring to arrive, but so far it still feels like winter! 

The friend I met today is a cancer survivor. Her daughter and Mattie went to preschool together and we have known each other for many years now. Certainly we knew each other as moms, but now we know each other through cancer. That seems to connect us on a completely different level. Catherine asked me about the Foundation today and took an interest in it, my role, and my accomplishments. It means a lot to me when someone asks me about Mattie Miracle, wants updates, wants to know next steps, asks me about the chapters I have written and so forth. Because while most of my friends are talking about their children, the Foundation is my child. Yet not everyone seems to have made that connection. 

Mattie Miracle's March newsletter was distributed electronically today and in the newsletter I asked individuals and corporations to consider sponsoring our "Challenge Wall" which is new to our event this year. In fact the whole Walk is being revamped to blow out the Walk component. When the Walk was originally created, it was designed by our care community in 2009, when Mattie was alive. Mattie couldn't walk, he was wheelchair bound and therefore our community created an event in which Mattie could feel their love and support. Over the years, the Walk has evolved to a bigger event but the nature of the actual walking has always been more social rather than directive and purposeful. This year we would like individuals and teams to fundraise for us before the day of the event. We feel this model is used effectively by other non-profits but it is also a wonderful way to build community spirit, awareness, and funds around our cause and mission. Then on the day of the Walk, there will be a "challenge wall" which will be sponsored by individuals and local companies. With each lap walkers take, you will earn a colorful cup to place in the chain link challenge wall. Once the wall is filled.... the challenge has been met!  Which means you will have helped us raise an additional $5,000 on the day of the event to support our psychosocial mission.

Our overall financial target for the Walk is $60,000 this year. All Walk proceeds go toward supporting the Mattie Miracle Child Life Program Fund at MedStar Georgetown University Hospital and our National Agenda to create and implement a psychosocial standard of care for childhood cancer. In any case, after our newsletter went out this morning, one of our supporters contacted me and his company would like to be one of our sponsors of the "Challenge Wall." So I am thrilled! If I could only clone Grant!

Monday, March 23, 2015

Monday, March 23, 2015

Tonight's picture was taken in April of 2009. Around the time of Mattie's birthday! On either side of Mattie were Jerry and Nancy! They are the famous music volunteers at the hospital that came into our lives on Day one, the night Mattie received his first dose of chemotherapy. Jerry and Nancy became an integral part of our support team at the hospital and practically visited us every week. They brought us music and conversation. A mental health diversion. They also played a "name that tune" game with Mattie that he absolutely loved. That particular night Mattie guessed all the songs correctly by hearing the first couple of notes and Jerry gave Mattie a prize! 


Quote of the day: The only escape from the miseries of life are music and cats...  ~ Albert Schweitzer


Last night I had the wonderful opportunity to go out to dinner with Jerry and Nancy. Over the past five years since Mattie died, they have reached out to us consistently to meet for dinner. We developed a special connection in August of 2008, and that bond remains with us today. It all started because we were in the hospital uniting around helping Mattie battle cancer. The beauty of Jerry and Nancy is they meet with Peter and I because they want to. They are not compelled to because it is their job associated with the hospital and they aren't looking for funding from us for something. They are simply part of our cancer story and as I learned last night, they value this component of their lives just as much as we do. 

How did Jerry and Nancy first meet us? Well I will never forget our first night in the hospital in which Mattie was awaiting his first dosage of chemotherapy. Back then Peter and I did not know which end was up. We were totally in shock and traumatized, yet we knew we had to be strong and figure this out for Mattie's sake. We were very scared just in general to be starting chemotherapy, but there was something quite intimidating to starting something so toxic for the first time at night. Like 10pm to be specific! Everything seems so much more daunting and out of your control at that hour! One has to wonder why a hospital chooses to begin chemo administration for the first time at 10pm, but that is another story! Any case as we were awaiting this horrible hour to approach, our nurse told us about a musical duo of volunteers who was out in the hallway and who wanted to come into the room and entertain Mattie. At first I was going to turn them away, but she convinced us to give them a try and to allow music into our room. Thankfully she did because it was the best decision we made that night and clearly into the future. 

Jerry and Nancy have different skill sets, but compliment each other beautifully. 
Jerry plays the keyboard and Nancy sings. But it goes beyond that. They verbally engage their patients and families, they get to know about their lives, and on that first night they were with us, I felt for a brief period of time that I was transported out of the pediatric intensive care unit. We forgot about cancer and were able to enjoy our time singing as a family. It gave me a sense of peace and security that perhaps we were going to be okay, at least for that night.  

After that first night encounter, we would see Jerry and Nancy practically every week at the hospital. Remember Mattie's treatment was all in-patient and over a 14 month period. So we practically lived at Georgetown Hospital. When you see someone every week, you start to get to know each other quite well and Jerry and I began to exchange emails. We would check in with each other especially about the "name that tune" game that he and Nancy would play with Mattie. Jerry wanted to make sure that whatever tunes he would play on the keyboard that Mattie would be able to identify them easily! So literally Jerry and I would have sidebar emails about what tunes he should play that would engage Mattie and make him want to participate during their visits! In my perspective when you think about this, that truly went above and beyond the call of duty of any volunteer. 

Mattie truly had a great deal of trouble relating to people, other than Peter and me as his disease progressed. His treatments left him with profound mental health issues that no adult should face, much less a seven year old child. But for the longest time music did make Mattie happy and he did enjoy visits from Jerry and Nancy. For which I will forever be grateful to them! Their visits perked me up too because Jerry and I happen to love show tunes and we would get a few of those in on the side!

Last night's dinner seemed to have flown by. I had the opportunity to relive some memories with Jerry and Nancy and also laugh! I can't remember when I have laughed so hard about all sorts of things. We even had our server, who looked like a young Whoopi Goldberg, in on the action! At one point she said she wanted to sit down and join us because we were the "fun" table! If she only knew the reality!!!!!!!!

Sunday, March 22, 2015

Sunday, March 22, 2015

Tonight's picture was taken on April 1st of 2009, around the time of Mattie's 7th birthday. Friends were beginning to bring Mattie balloons and gifts to celebrate his special occasion. I will never forget the cute book Mattie was holding up because it was a musical one that we both found entertaining! If you look closely at the photo though you will notice that there were silk screens hanging from the ceiling. These were screens that Mattie and I created together. In fact the heart above Mattie's head says.... "Mommy loves Mattie!" Whatever art we created in the hospital, I usually tried to display about the room. To make the room look more child friendly rather than like a hospital and of course Mattie's IV pole was always a conversation piece! We typically had origami cranes hanging from it, but Mattie also designed a caterpillar out of a cardboard box and attached it to the pole with every admission. Needless to say, these were conversation pieces with anyone we ran into, in the hallways. 


Quote of the day: One person's trauma is another's loss of innocence. ~ Jodi Picoult


When one thinks about Picoult's quote, you first may stop and pause and ask yourself.... what is she talking about? But after re-reading it and letting it sink in it does make a lot of sense. If you doubt this, then for the context of this blog let's operationalize her quote. 

For the past six years I have been writing about Mattie's cancer battle and then of course the grief associated with losing a child to cancer. When Mattie was alive and with us, I shared the vivid details of the daily battle, both the medical chaos and the psychological turmoil. I tried to bring our community into our world and shared with you how our lives were changing and how Mattie's childhood was literally being shattered before our eyes. As time progressed Mattie's cancer metastasized and with that we were forced to face the fact that he was dying. We did not have a long time to grasp that reality and within days we were making decisions about how to keep him comfortable and how to help him die humanly. Which for the record did not happen! Mattie suffered a painful death, and we unfortunately are the witnesses of that five hour torture. 

The multiple traumas I have and continue to write about on this blog are things that Peter and I live with, and yet in the process I have a feeling that those of you who read the blog on a regular basis would concede that your innocence (if it existed) regarding childhood cancer is gone. You know that is exists, that cancer can kill children, that it has psychological consequences on children and families, and these consequences can last a life time. Therefore Picoult's point is true..... one person's trauma is another person's loss of innocence. Sometimes as I always say..... I would prefer to be more innocent and naive.  

When you think about the multiple stories we hear in a given day either from people we know in our lives or through TV, the internet, or things we read, one has to wonder...... where is the innocence? We can almost become overloaded with thoughts and feelings. Which can be difficult to contend with and manage on a good day, but when you find yourself faced with your own trauma or challenging situation, how do we process these other stories and information around us? I know for myself, the answer is... I don't! I know I am not alone in this because under high stress, dealing with intense grief from Mattie's traumatic loss, there are times I do shut out the world in order to function. That could mean that I do not watch certain types of programming, the news, etc.. There are times I can integrate this into my life and times in which I can't. The irony is when I was talking to Kevin (the man who was stationed overseas, and was my flight companion in February) he and I were on the same wave length! He and I suffered completely different traumas and yet we cope with things in a very similar manner. We just understood each other instantly as we sat next to each other on a flight to Los Angeles, mind you we had never met before. Our traumas, shed our innocence, and it was as if we were speaking the same language despite the fact that our war zones looked VERY different.  

Saturday, March 21, 2015

Saturday, March 21, 2015

Tonight's picture was taken in March of 2009. For Mattie, physical therapy sessions were never boring! Anna (on the right), Mattie's physical therapist, learned quickly that to have Mattie as a patient meant one had to think outside the box. You had to engage Mattie mentally but in a creative way, otherwise, he would not buy into the therapy process. Especially when the process was painful and required him to expend energy he did not have. Anna rose to the challenge and was an outstanding therapist and match for our family. On the left, was Meg. Meg was a child life intern at the hospital. When I first met Meg, she was different from the other child life interns I had come to know. Mainly because she has a more bold and take charge kind of attitude, and she has the spirit and determination that enabled her to figure out a way to relate to Mattie (by March, Mattie was distrusting of most hospital staff and really did not allow many people into his life). Meg became Mattie's physical therapy racing partner. Meg would compete against Mattie and egg him on, in order to motivate him to get up and do his exercises and participate in therapy. She was very effective and I was grateful because I needed whatever help I could get to encourage and inspire Mattie. 


Quote of the day: If we had no winter, the spring would not be so pleasant: if we did not sometimes taste of adversity, prosperity would not be so welcome. ~ Anne Bradstreet

Peter and I went to visit Mattie's tree on his school campus today. We wanted to decorate it for his upcoming 13th birthday on April 4. If you look closely you will notice that the bulbs we planted in the Fall are now blooming at the base of the tree! 

I removed the winter themed ribbon I tied around the tree and replaced it with a springy yellow butterfly today in remembrance of Mattie. In addition, we also placed three decorative birds on the tree and an orange wind chime!

If you look closely at the tree, you maybe able to see the orange, green, and purple birds that we added to the tree today. The orange chimes, look like bells hanging beneath the orange bird!

A close up of the crocuses blooming underneath Mattie's tree. 

Mean while at home, in our memory garden for Mattie, our crocuses have sprouted up and are blooming too! So this is a sign that spring has sprung. I have no idea how given that we had snow flurries yesterday, but it has happened! 

In the midst of these natural wonders, I received three text messages out of the blue today from friends. All connected to us through Mattie. Needless to say, I went from having a non-social Sunday scheduled to one in which I am now going out to brunch and dinner. 

Friday, March 20, 2015

Friday, March 20, 2015

Tonight's picture was taken in June of 2008. A month before Mattie was diagnosed with cancer. At that moment in time we had absolutely no idea that anything was wrong with Mattie. Our world looked completely different back then. We had no idea about childhood cancer or how profoundly one's world could be changed in an instant. As you can see Mattie was trying to bond with Patches and feed her. Of course Patches wasn't a cuddly type of cat, nonetheless, she tolerated the attention and understood that Mattie was an important part of the household. She was one smart cat!



Quote of the day: No amount of time can erase the memory of a good cat, and no amount of masking tape can ever totally remove her fur from your couch. ~ Leo Dworken


Two years ago today, Peter and I had to put Patches, our calico cat, to sleep. Patches developed bone cancer and was really struggling toward the end. Before her situation became even more painful, we had to do the humane thing. Poor Patches was unable to truly eat or drink fluids and was becoming disoriented and we suspect was dealing with pain. We certainly weren't going to prolong her life, when she had no quality of living. 

Patches came into our lives in February of 1997. She was basically one year old when she was abandoned on the streets of DC, with a BB gun bullet in her leg and in terrible shape. Patches was in our commons area screaming her head off for attention and a home, but no one was paying any attention to her. Well except for me. After dinner one evening, I brought the dishes into the kitchen and as I was looking out the window I was startled because staring back at me through the window were two big cat eyes. Patches had jumped up on our window sill to look inside. At that point, I sent Peter outside with our dinner scraps for her to eat. The irony is that from that moment on, Patches bonded with Peter. She always had a great affection for him. She was truly HIS cat. Yet if I was sick, "Nurse Patches," as I called her, took over. At that point, I apparently became a very important person to her and she stayed close by my side until I got better. I discovered this one year when I was in graduate school. Peter was at work, and I was feeling very ill. I had a very high fever, over 102 degrees. Patches did not leave my side until Peter came home and that wasn't an isolated incident. It was each time I was sick. Yet despite being close to Peter, she did not do this with him when he got sick.  

When Mattie developed cancer in July of 2008, Nurse Patches was there to help us when ever we were home. Which wasn't often. We tried to keep Patches home with us for as long as possible, but as Mattie got sicker, we eventually had to board Patches at the vet full time for many, many months. This was hard on our whole family. We all missed her, and I am sure she missed us. But we were not around to care for her and address her medical needs, of which she had many. Yet in the beginning right after Mattie's surgeries, Patches was up on Mattie's hospital bed along side him. Providing company and attention! A true spirit and nurse! Not to be forgotten. 

After Mattie died, Patches grieved right along side us. If you think animals don't grieve, you are WRONG! Patches was depressed and it was easy to see. She spent a lot of time in Mattie's room. On his bed and on his things. This is NOT something she would have normally done. Patches was important for Peter and me. She gave us something to care for, nurture, and love and did make our home seem less lonely. Because the isolation, pain, and depression of losing a child to cancer wrecks havoc on a home. 

As tonight's quote points out.... NO AMOUNT OF TIME can erase the memory of a good cat. That is certainly true with regard to Nurse Patches and I would concur that I still find Patches' fur in all sorts of places in our home even today. On Mattie's memory shelf in our living room, also sits Patches ashes. Two classics featured on one shelf. It is my hope that where ever they are, they have found each other and have reunited. 

Thursday, March 19, 2015

Thursday, March 19, 2015

Tonight's picture was taken in March of 2009. We were taking Mattie for a walk around the DC National Mall. Of course on any walk, Mattie always seemed to find a stick along the way to carry with him. In fact for the longest time, we had quite the stick collection in our commons area. Sticks that were brought back from every walk over the years and that were added to our garden collection. We had so many, it looked like we had a sculpture garden made out of wood in the making. 


Quote of the day: Being passionate about something is the most beautiful characteristic you can develop. ~ Charlotte Eriksson

I would say that Peter and I are quite passionate about the importance of psychosocial care for children with cancer and their families, yet it can be discouraging at times because despite how much sense this makes to us and how much evidence is being accumulated about the importance of this care, it is not always the MOST popular position to take within the cancer community. Advocacy groups are comprised of individuals with their own focus, lens, and mind set of what constitutes a priority. Yet it some times catches me off guard when I find that those who have experienced childhood cancer first hand, just like us, do not consider psychosocial care a priority and do not view it as a crucial part of the treatment process. It can be very challenging at times to work each day and to be advocating for a position that is not understood and valued by the majority. Some days I put it into context and it motivates me further and some days it just makes me upset and causes me to wonder if I am doing all of this for naught. After all it is hard to change a system and mind set that just doesn't want to be changed. But then I think of the reason we are doing this.... Mattie! What he suffered can never be forgotten and this forces me to press on. Mattie's issues were FAR more than medical and even if we can't change a system over night, the system is still going to hear from us. 

This evening while working on my computer, I happened to be looking out the window and saw our resident Jack Russell Terrier, JJ. Mattie grew up with JJ, and they were very close with each other. In fact, I would say that when Mattie died, JJ got very depressed and wouldn't eat. He even slept with Mattie's sandals for the longest time. Any case, JJ came onto my deck to visit with me and he perked up the day!

Wednesday, March 18, 2015

Wednesday, March 18, 2015

Tonight's picture was taken in March of 2009. Mattie was in the process of getting a bone scan. In order to prepare for such a scan, he could not eat or drink anything for 12 hours. Needless to say when you can't eat something, that is typically when you WANT to! As the scan was finishing Mattie eagerly started eating a vanilla frosted Dunkin Donut, his favorite at the time! The joke back then was "one donut a day and everything will be okay!" As you can see Mattie was literally eating while still on the scanning table! However, I will never forget this day because the radiologist who was reading his bone scan was having issues with what he was seeing. To him Mattie's cancer looked like it was progressing, but in reality what he was seeing was Mattie's prosthetics. Nonetheless, until I got face to face with this doctor and asked him what the problem was, Mattie was literally being held up in this scanning machine for more testing unnecessarily. Mattie was starving and really couldn't sit still for one more minute! Linda, Mattie's child life specialist, knew I was getting anxious and found a way for me to speak with the radiologist. Thankfully! We put an end to the ordeal and Mattie got his donut!


Quote of the day: I've pursued dreams and achieved them, but I don't think anybody should think their life is incomplete if they don't follow some dream. Happiness doesn't come from achievements, or money, or any sort of treasure. Happiness is a frame of mind, not a destination. It's appreciating what you've got and building relationships with those around you. ~ Janette Rallison

The weather in Washington, DC went from spring like warm yesterday to cooler today. The irony is they are predicting snow for later in the week. When temperatures change suddenly, some how that triggers one of my least favorite residents to surface.... our falcon! He is one large and ominous  looking creature. I snapped this photo from the window in Mattie's bedroom!

As the day passed along, this falcon came back and forth to visit. At one point, he perched himself on top of my garden hooks where we hang the bird feeders. He was hoping to pluck a sparrow for a snack. The beauty though is by moving the feeders closer to the shrubs this year, these birds of prey have a much harder time capturing the sparrows. The sparrows hide within the shrubs and I have no idea, but for some reason it makes it harder for them to be captured. When the feeders were out and exposed on our deck, hawks would swoop down often and kill the sparrows. But this isn't happening in the new location! 

While this was happening in my world, my good friend Mary Ann sent me photos from near her home today. She sent me several, but I was partial to the snowman
bird feeder! I can only imagine how my sparrows would react to this type of feeder.

When Mary Ann showed me this photo, it made me chuckle. Some child got out the side walk chalk and wrote, "spring is here." If it were ONLY true! I won't believe it until I officially see some consistent temperatures! 

Tuesday, March 17, 2015

Tuesday, March 17, 2015 -- Mattie died 288 weeks ago today. 


Tonight's picture was taken in March of 2009, around St. Patrick's Day. Mattie received many wonderful holiday items from his care community and as you can see he decided to put all of them on and wear them to his hospital appointment. To me this is the quintessential St. Patrick's Day photo, which is why I typically post it on March 17th.  






Quote of the day: I decided to devote my life to telling the story because I felt that having survived I owe something to the dead, and anyone who does not remember betrays them again. ~ Elie Wiesel


I was invited to Mattie's school today to give a Mattie Miracle presentation to the fifth grade Daisy Girl Scout troop. The troop has selected the Foundation as their project in order to achieve their bronze award. This award is the highest leadership honor that a girl scout junior can achieve. Earning the Girl Scout Bronze Award involves a suggested minimum of 20 hours building a team, exploring the community, choosing a project, planning it, putting a plan in motion, and spreading the word about the project. 

There are many non-profits out there that this troop could have selected, so how did they come to choose Mattie Miracle? Well a major reason Mattie Miracle was selected is due to a young girl in the troop named Livi. Livi is Campbell's sister, and Campbell was one of Mattie's closest friends in kindergarten. Livi advocated our cause and the Foundation with her troop, and she clearly did a great job! We are very grateful for her courage and for giving childhood cancer a voice! Her decision was supported by the troop leader, Sue. One of Sue's daughters is in seventh grade, the same grade Mattie would have been in if he were alive today. Though Sue's daughter and Mattie were not in the same kindergarten classroom, they did know each other. Since Mattie's death, Sue has always supported the Foundation EVERY single year. Her girl scouts raise money through cookie sales and then donate this money to the Foundation in order for us to buy a Lego Raffle basket which is featured each year at our Walk. The girl scouts (different troops, but all led by Sue) have done this for the past four years! In addition, Sue also encourages the girls to visit Mattie's memorial tree on campus and to also make decorations for it especially during the Christmas season. One year they made decorative pine cone ornaments for the tree which were just glorious and special to see. Though Sue did not know Mattie, she is instrumental at helping us keep his memory alive in young minds and hearts. 

I had the opportunity to talk with 18 fifth grade girls today. I have never presented to a group this YOUNG before. Clearly I did not want to scare them, but instead I wanted to partially educate them and motivate them to want to participate in our upcoming Walk. Before I shared my PowerPoint slides with the girls, I started my talk by acknowledging that I knew that childhood cancer is a scary and sad topic. But I wanted to encourage them to look at this more broadly. I let them know that in life each of us is tested, challenged, and is faced with something personally very difficult. A crisis if you will. My crisis was childhood cancer. Each person's will be different. Unlike some people who believe things happen for a reason, or that we are only given things that we can handle, I told them outright that I do not subscribe to this philosophy. Instead, I said that sometimes things just happen. They aren't fair and they don't make sense. In a way they are out of our control. Yet it is under these most difficult times that we can also learn many things about ourselves and we find inner resources we did not know we have. I wanted them to know that they had such resources within themselves. I told them that through my story and photos today, they would hopefully see two things. These two things have enabled me to manage through very difficult times and it is my hope that they take these insights to heart and that it helps them in some way in the future. 

The two things that helped me through such a crisis is 1) community and friendship and 2) being able to help others. I explained to the girls that in times of great sadness and distress, that looking beyond one's self and reaching out and helping others can be very life affirming. 

I shared some basic cancer facts with the girls today. But the majority of my presentation involved a great deal of visuals. I figured this would be a more meaningful and less threatening way to cover material. But it was also a great way to capture our Foundation's activities. I started out with a slide depicting Mattie as a fellow "Saint." "Saint" being the school's mascot. I wanted the girls to know that Mattie experienced many of the things they did at the School and basically he was just like one of them. 

Then I created another slide that illustrated how childhood cancer impacts a whole community, not just one person or one family for that matter. All of Mattie's communities were touched by his cancer..... his preschool, his elementary school, his family and friends, Peter's work, and my work setting. What I wanted the girls to know was that cancer united ALL these communities together for a cause. Communities that normally wouldn't have associated with each other. Many of the people who met each other back in 2008, and were united by Mattie, still are friends with each other today. Even though they now have to cross communities to see each other!

I did not posted all of my presentation slides in the blog, I am only giving you a sample of them. I wanted the girls to understand some of the activities the Foundation is involved in and particularly what donor contributions directly support. Therefore, I highlighted the child life specialist position at Georgetown University Hospital that we have funded for four years, the free snack cart we offer in-patient families at the hospital, the item drives we run twice a year, the monthly nurse support group luncheons we have funded over the last three years, and our awareness work with school groups. This of course only focuses on our local work. 

Then I discussed with the girls how we raise the money in order to be able to accomplish all the things that we do to support children with cancer and their families. That led to a conversation about our annual Walk and all the activities associated with this event. We then discussed ways for the troop to get involved at the Walk and overall with the Foundation. 

I ended the presentation with taking a photo of the troop with our Foundation banner. This troop photo will be featured in our upcoming March newsletter. I also baked cupcakes for the girls. Cupcakes were Mattie's favorites! They were something he absolutely loved and when he was in the hospital, I used them as incentives to get him to participate in physical therapy. Though I did not share that story with the girls today, Mattie was well represented at this meeting through the cupcakes. 

The presentation was held in the school's library. I haven't been in that library since Mattie was alive. I used to volunteer in the library every other week when Mattie was in kindergarten. The librarians used to love me. Mainly because I was super retentive about cataloging and I could do it FAST. As I was in that space again today, it was as if I was transported back to 2007, when I had no idea what childhood cancer was much less what osteosarcoma was..... and I can assure you the world looked so much better through those glasses. 

Monday, March 16, 2015

Monday, March 16, 2015

Tonight's picture was taken in March of 2009. Mattie was outside the child life playroom at the Hospital and getting ready to participate in the ribbon cutting ceremony. When Mattie first arrived at the Hospital in July of 2008, there was NO child life playroom. Over the course of his treatment this wonderful space was built. This space became vital to our existence. Therefore when this special ceremony occurred, Linda (Mattie's child life specialist) invited Mattie to be one of the special ribbon cutters. Of course Mattie jumped at the chance. Linda knew Mattie LOVED a good task! 

Quote of the day: When I dare to be powerful----to use my strength in the service of my mission, then it becomes less and less important whether I am afraid. ~ Audre Lorde

There was a campaign going around Facebook today in the childhood cancer community called the "NCI Selfie Campaign." Childhood cancer organizations were asked to take part in this campaign to spread the message about the inadequate amount of research funding allocated by the National Cancer Institute (one of the Institutes of the NIH) to childhood cancer. Organizations were asked to take a "selfie" (which is a photograph that one has taken of oneself, typically taken with a smartphone or webcam and shared via social media) and hold up a flyer that contained a pre-printed message and send it out on Facebook and Twitter. So this morning, both Peter and I staged our own selfies. I did mine in Mattie's bedroom and Peter did his at work. 

I wanted the selfie to be meaningful. But I wasn't sure what I wanted in the backdrop of the photo! Then it dawned on me! What would symbolically convey Mattie's life? Mattie's clothing!!! So I pulled out his beautiful memorial quilt and I hung it on my closet door and then I began to tape photos of Mattie to the quilt. You can see the final product below! Yet for me it was a balancing act to hold my phone in one hand and try to pose for this photo and not move. But I somehow managed! My goal was to be looking at Mattie in the photo! Hopefully that was conveyed! 

When I posted the photos of Peter and me, I also included the following message below on Facebook! Though the nature of the campaign is to raise awareness for funding of medical research, Peter and I think it is always VITAL to spread the message of psychosocial support. Funding needs to be raised for this as well and this type of support much be provided to children and their families in order for an effective health outcome to be achieved. 

What was posted on Facebook.......

Mattie Miracle Cancer Foundation unites with the cancer community today in support of the position that more must be allocated for childhood cancer research at the National Cancer Institute (NCI). The current 4% won't do! NCI would argue that "the 4% statistic does not reflect its entire contribution to understanding and treating childhood cancer and that the NCI invests nearly half of its $5 Billion budget for cancer research that is not specific to any type, but includes many that affect children."

However, the facts speak for themselves..... 15,000 children are diagnosed with cancer a year, 2000 children die from the disease a year, and there are 300,000 childhood cancer survivors in this Country who are dealing

with late effects (e.g., infertility, heart disease, diabetes, hearing loss, psychosocial issues, and secondary cancers) from the toxic treatments they received. We have to do better for our children and their families.

Pictured with our 4% sign is Mattie's memory quilt. His quilt and memories are all we have left of our son. For us and so many other parent advocates, childhood cancer is very real and deserves more than 4% of National attention and funding. For us childhood cancer is much more than just about the medicine.

Sunday, March 15, 2015

Sunday, March 15, 2015

Tonight's picture was taken in March of 2009. As you can see I am holding up a large pretzel. That may not look odd to you but of course there was a story behind the pretzel. That day our friend Ann was coming to visit us. Ann would always ask Mattie what he wanted before she came. That day Mattie said he wanted a large soft pretzel. Kind of like the type of pretzel one would find at a vendor on the streets of NYC, but not as easy to find in Washington, DC. I am not sure how Ann tracked down the pretzel, but as you can see this brought a smile to Mattie's face. Getting Mattie to eat anything was a feat, so when he requested something, those of us who were closest to the situation really jumped through hoops to try to accommodate such a request. 


Quote of the day: The greatest fine art of the future will be the making of a comfortable living from a small piece of land. ~ Abraham Lincoln


Peter and I spent the day brainstorming the Foundation's Walk that is coming up on Sunday, May 17th. When we recently met with the Walk planning committee we discussed some changes to the event. So we really have been trying to think these ideas through before I meet with a smaller walk planning group tomorrow to flesh out the details. We have really needed this weekend to recuperate and honestly I have felt a pervasive tiredness that has been lingering for months. I worked through last summer on writing two book chapters and then hit this year hard with Foundation activities. Not having any down time has been very problematic and I can only hope that this summer is different.  

This afternoon, we went out to buy more bird seed..... something that we do each weekend! While walking through Home Depot, I was excited to see that their garden center is coming to life!!!! They were featuring solar garden lights and one that looked like a big orange sun! So we bought it and stuck it in our commons area tonight. It needs to charge tomorrow in the sunlight, but from Mattie's bedroom, I can already see it glowing in the darkness tonight. It seems rather symbolic that this orange globe is sitting in Mattie's memorial garden.