Saturday, February 11, 2017

Saturday, February 11, 2017

Tonight's picture was taken in March of 2009. Mattie had a visit from his "girlfriend," Charlotte. While in Mattie's room, the kids created on silk screens. Mattie decided to make a portrait of his friend so he could remember her visit. Charlotte has blue eyes and blond hair, and Mattie's signature symbol in every painting or picture he created was the sun. No surprise that the sun became the symbol of the Mattie Miracle Cancer Foundation. Mattie hung many of his silk screens from the ceiling of his hospital room. Not just during one admission, but every hospital stay. We would travel to the hospital using plastic bins and we had one bin filled with Mattie's creations and items that were always used to decorate the hospital room. Needless to say we never traveled to the hospital lightly! 


Quote of the day: If you meet a loner, no matter what they tell you, it’s not because they enjoy solitude. It’s because they have tried to blend into the world before, and people continue to disappoint them. ~ Jodi Picoult

Picoult's quote is quite brilliant and though her book was about a child with an illness, it wasn't about losing a child to cancer. Nonetheless, I do think losing a child to cancer naturally isolates you. Bereaved parents can work on trying to fit in, but they always know they are different and if not careful everyone in the world can be a potential threat and disappointment. It is a matter of learning how to put things into context, adjusting expectations, and on occasion protecting one's self from hurt, insensitivity, and cluelessness. 

Tomorrow signifies the day when Mattie will be dead for as many days as he has been alive. After Sunday, we will need to face that Mattie will be dead longer than he was a part of our lives. That is a sobering reality to say the least for a parent. 

Specifically, Mattie was alive 2714 days (April 4, 2002 - September 8, 2009) and tomorrow will be 2714 days that he has been gone (September 8, 2009 - February 11, 2017). Today we visited Mattie's tree and changed the ribbon around the tree. Removed all Christmas ornaments and instead hung 7 butterflies on the tree for each of Mattie's years he had with us. We also hung many Lego pieces. Mattie was the king of the Legos, so that seemed like the perfect item for people to see as they pass the tree. Despite all the leaves being off this tree, you can't miss it on Mattie's school campus. It has so many colorful items on it, always a ribbon around its trunk, and it also has chimes on it that blow in the wind. Which is why I refer to this tree as the "twinkling tree."

Friday, February 10, 2017

Friday, February 10, 2017

Tonight's picture was taken in March of 2009. The hospital gave us special tickets to the circus. We sat in private box seats and it was a safe and protected way to see the circus. In fact that was the first and last time Mattie ever visited the circus. I am not sure what Mattie liked the best, but my hunch was all the gadgets he bought from the concession stands made the top of his list. He got a light up plastic sword and a whirling elephant that lit up. In fact, I still have both of these items on Mattie's memory shelf in his bedroom. 




Quote of the day: Most of us know when we are about to react emotionally. We can feel it. Often there is a brief warning before the amygdala hijack. For some of us, it is butterflies in the stomach; for some, it is an increased heart rate, and for others, it is a feeling of agitation. ~ Elizabeth Thornton



I had an all day licensure board meeting today. Each month before heading to the meeting, I drop Sunny off at the groomer. how grooming can be an all day affair is beyond me, but it is. I drop him off at 9am and pick him up at 4pm. However, I feel like I am in the car ALL DAY. I drive from DC to Alexandria and drop off Sunny. Then get back into the car and drive to my meeting in DC. After the meeting, I hop back into the car and drive from DC to Alexandria to retrieve Sunny, and then head back to DC to go home. It feels like the endless loop on licensure board/grooming days. Though this is local driving, I am driving for hours. 

When I dropped off Sunny this morning with his groomer, she recommended that I try to place Sunny into doggie daycare after she finishes with him. Because Sunny has been recovering from his heart worm treatments, he wasn't allowed to interact with the other dogs, in fear that this would over excite Sunny. So for the past five months that I have had Sunny, when he went for grooming, he would then just roam around the grooming center until I picked him up. Interacting with a limited number of dogs. It seemed to work beautifully and Sunny likes his groomer. 

But the groomer encouraged me to let Sunny join the daycare center today. I told her I wasn't sure about this since Sunny seemed anxious in that setting. Understand that daycare involves a very large warehouse type room in which dogs are freely moving around and interacting with each other. Her response to me was that Sunny is feeding off my anxiety! In her next breath she said..... it is like when you drop your child off at daycare for the first time. Her response produced INTENSE agitation in me for many reasons! First of which, I don't think I am projecting anxiety onto Sunny. I am responding to my observations of him and he is visibly shaking. But second, my initial reaction to her was to lash out and say..... you don't really want to go there with me do you? She was lucky that I was in control of myself today because if she got me on a bad day, I could have been explosive. I do not think putting Sunny in daycare is equivalent to Mattie's first day at preschool. Mind you I never put Mattie in daycare, and that to me was always judgmental on her part. We all have different feelings about daycare, but I made a conscious decision to be a full time mom first and professional second. I am happy I made this choice because I would never get a second chance, nor did I get a lifetime to raise Mattie. 

In any case, when I picked Sunny up, he was okay. He was bolting for the door when he saw me, but when he got home he wasn't agitated, upset, or dejected. So I am happy that he had time to play with other dogs today because he truly is a very social dog. Walking Sunny in DC, doesn't give him the opportunity to play freely with other dogs and to roam around without a leash, so in theory this play setting is ideal. So I am staying open minded but I rather that the self direction come from me, rather than someone judging me and the interaction I have with my own dog. 

Thursday, February 9, 2017

Thursday, February 9, 2017

Tonight's picture was taken in March of 2009. Mattie had just cut the ribbon into the playroom (see last night's photo) and was now inside celebrating the official launch of the child life playroom. Gilbert the giraffe from Toys R Us came to the party and as you can see he was a total hit with Mattie. Mattie was actually in rare form at the party. Mainly because he had been playing in this playroom way before the launching of the room. The ceremony actually happened months after the room was open. So Mattie showed everyone around in the room and he had cake, and it was a fun celebration for him. Honestly that playroom was a God sent, and I have no idea what patients and families did before the room opened! Well actually I know the answer to my own question, because when we first entered treatment this playroom was under construction. Therefore the only place to play other than one's room was in the hallway, which I assure you was horrible! 


Quote of the day: There is no bad time for good news. ~  Stephen King


If yesterday was 70 degrees, today was like 20 and with an occasional snowflake or two. These two extremes make it absolutely impossible. Of course my furry friend could care less what the weather is like.... we are out walking in it  no matter what!

I may have been in DC, but I kept close contact with Los Angeles today as my dad was getting two different scope procedures done to rule out cancer. Needless to say the stress level for all of us was HIGH. Thankfully as Stephen King said.... there is NO bad time for good news. In fact, I would say good news about one's health is probably the best gift that can be received. I remember my grandmother telling me this when I was a child, and back then I had absolutely NO comprehension of what she meant. I unfortunately know all too well now about this reality. 

Tonight as I am writing the blog, I can see Mattie Moon through Mattie's bedroom window. In fact, you see the reflection of Mattie's art work through the window as well. It seemed like a rather symbolic photo, so I snapped it. 

Wednesday, February 8, 2017

Wednesday, February 8, 2017

Tonight's picture was taken in March of 2009. Sitting next to Mattie is Linda, Mattie's child life specialist. Linda was a God sent to Mattie and our entire family, which is one of the reasons I was adamant to establish the Mattie Miracle Child Life Program Fund at the Hospital. That day, there was a ribbon cutting ceremony to officially launch the opening of the child life playroom. Linda asked Mattie if he would like to cut the ribbon at the ceremony. Naturally Mattie said YES! Linda knew Mattie thrived on responsibility. 


Quote of the day: I glanced out the window at the signs of spring. The sky was almost blue, the trees were almost budding, the sun was almost bright. ~ Millard Kaufman

The past two days in Washington, DC felt just like spring. The sky was blue, the sun was shinning, and it made you just want to be outside and walking in it! Of course with Sunny, I am outside and walking in anything. 

This was my morning view. I had Sunny on the couch with me and Indie on the floor trying to look out the window. This position did not last long for any of us, because as soon as I finished my cereal, we were all up and about. 

On one of my Sunny walks today, we walked passed the Kennedy Center. Right in front of it, there are cherry trees blooming. I really think they are confused with the heat. There were literally three people photographing these trees. They were enamored by the pink color and fragrance and I have to say when you pass them you can't help but be drawn to them and want a closer look. 


I did many things today, but one of them involved critiquing the work of a college class in Canada. Mattie Miracle is working with a university in Canada this semester that has adopted us for a community service project. This psychology class is trying to summarize the Psychosocial Standards of Care. There are 15 standards and they are creating two versions..... a summary of each standard for families and a summary of each standard for health care professionals. I have to say the summaries for health care professionals was easier to read and follow than the summaries for families. 

I would like to think that one doesn't have to live through a childhood cancer experience to have certain insights, but in all reality that may not be fair. Everything about childhood cancer is like being dumped into a foreign culture and you have to learn to navigate it on your own. So in essence there are things you could never know if you haven't lived them! In any case, the overall issue I had with what I was reading was the fact that students interpreted the standards as things families should be doing. For examples, families should talk openly to medical providers, that families should reach out to their child's oncologist after the death, etc. Needless to say as I was reading this, I had a very visceral reaction to it because the standards were not designed to be punitive to families nor to put the onus on them to identify their psychosocial issues and to provide the care. The purpose of the standards is to empower families so that they feel comfortable in identifying and addressing their child's and their own psychosocial needs and to know that treatment sites can provide services and interventions to help. In a way the standards are like an evidence based awareness and advocacy campaign for families and yet that wasn't how they were interpreted by the students. So fortunately the class sought my feedback along the way because I wouldn't have wanted to see this at the end of the semester. 

Tuesday, February 7, 2017

Tuesday, February 7, 2017 -- Mattie died 386 weeks ago today.

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom at the hospital and doing yoga electronically. He stood on a wii board which you can see here. Typically Mattie wasn't into ANYTHING electronic. But that day he had Peter and I in the room, along with his nurses and other psychosocial staff. Each one of them took a try on this wii board to see who could do a better yoga pose. That is all Mattie needed, was a competition, and he was eager to try it! It turned out despite all of Mattie's surgeries, he had excellent balance and grace on the board! 


Quote of the day: It is not the mountain we conquer but ourselves. ~ Edmund Hillary


Since the Fall, I have been visiting Georgetown University Hospital monthly to push the Mattie Miracle Snack and Item cart around the units. I feel it is important to assess how the cart is doing, and the only real way I can do this is personally. I don't do too well with third person reports. It just isn't my style. In any case, I have had a lot of time visiting the pediatric units lately and with that I have many observations. Today for example, I returned to the hospital to meet the child life specialist, Morganne, who has been hired to fill our weekend position. We lost the previous specialist last summer, as she wanted to return to her home, which was out of state. 

While talking with Morganne today, we were in the middle of the child life playroom. The same room that you see in the photo above. I obviously know that Mattie died and is no longer with us, but for me the fifth floor of the hospital is like the land that time forgot. It reminds me of the last year we had with Mattie. I imagine to Morganne the room was just an ordinary room but to me the playroom is a space I recall spending hours upon hours with Mattie. During good hospital days and very bad ones. If you believe walls and space have memories, then you get how I was feeling today. 

I made it my mission too to introduce Morganne to Tricia. Tricia was Mattie's favorite nurse, and for those of you who attend our annual Foundation Walk in May, then you know that Tricia comes every year and brings her husband and children. Her family has become a part of ours. But Tricia is no ordinary nurse or person. She provided stellar care to Mattie, but also to Peter and I. When I see Tricia, I in essence see Mattie. As Tricia told Morganne today.... she never had a connection with a family like she has with mine. 

Mattie told Tricia one day in the middle of the PICU hallway that he LOVED her. Loud enough for everyone to hear. That truly got to Tricia. Needless to say, Tricia is one of Mattie Miracle's best advocates at the hospital and tells her patients about the Foundation and the snack cart. Though Tricia and I do not see each other daily like we used to, we can pick up right where we left off and the one bright spot about visiting the hospital on a more frequent basis is that I see Tricia. When I am with her, it is safe to talk childhood cancer and to remember, reflect, and reminisce about Mattie. 

Monday, February 6, 2017

Monday, February 6, 2017

Tonight's picture was taken in February of 2009. Mattie was in the clinic and his art therapists were asked to design a "Welcome" sign to the pediatric in-patient units. Jenny and Jessie are very creative, so they could easily design a sign without a problem. But they took the creativity one step further. They asked Mattie if he wanted to do a hand print and add it to the sign. That did not interest Mattie AT ALL. So then I suggested what about a foot print of Curious George (the name we gave to Mattie's left foot and leg, because it was his only limb not affected by cancer and therefore his left leg/foot became as useful as a hand)! This photo shows the foot painting process! Mattie loved the whole experience. 

On the fifth floor of the hospital, this Pediatrics welcome sign still hangs. Mattie's left foot print is featured on the right. Every time I visit the in-patient units I see Mattie's foot. He is no longer physically with us, but his foot print remains. Which is very meaningful to me. 






Quote of the day: Look at a day when you are supremely satisfied at the end. It's not a day when you lounge around doing nothing; it's when you've had everything to do, and you've done it. ~ Margaret Thatcher


Two articles came out on-line today highlighting the Psychosocial Standards of Care. I included the links below. In the first article, I love that Mattie's pumpkin photo was featured in the article. In all reality, it was Mattie's cancer experience that inspired us to establish develop evidence based standards of care. Mattie battle showed us that childhood cancer is not just about the medicine and that the psychosocial issues do not end when the treatment does.... both for the child and the family. 

When I love about the first article is it states, "Although the interests of the American Psychosocial Oncology Society lie more broadly in addressing the psychological, social, emotional and spiritual needs of all people living with cancer and their family members, its interest in pediatric psychosocial care was fueled by the experience of Vicki and Peter Brown who lost their only child to a very aggressive form of osteosarcoma." I have to say that until I read this, I had no real idea that we were directing the focus of an entire professional association as well. It is truly remarkable how Mattie's cancer was like a pebble hitting water....... in which the waves and ripples are producing measurable psychosocial by-products that will hopefully help other children like Mattie, and families like mine. 

I invite you to read these articles. They are short but interesting!

Addressing psychosocial care in childhood cancer
https://www.changetogether.com/oncology/addressing-psychosocial-care-childhood-cancer


The Psychosocial Standards of Care Project for Childhood Cancer
https://www.changetogether.com/resources/best-practices/psychosocial-standards-care-childhood-cancer

Sunday, February 5, 2017

Sunday, February 5, 2017

Tonight's picture was taken in February of 2009. Mattie was in the hospital and as you can see was shoving something in his mouth. The item in questions was a CUPCAKE. Whenever I went home with Mattie in between treatments (which wasn't often), I would bake about two dozen mini cupcakes and frost them. Why? Because cupcakes (for a long period of time) were Mattie's food of choice and in order to provide him an incentive for doing physical therapy, I would reward Mattie with a cupcake for his participation and compliance with Anna (his therapist). Mattie guarded those cupcakes carefully and to this day, I LOVE cupcakes. They have a special meaning to me. Mattie went through many food phases while enduring chemotherapy and surgery. We had the Utz potato chip phase, the vanilla frosted donut phase, the big salty pretzel phase, the vanilla shake phase, the pasta phase, the chicken nuggets phase, and as I mentioned the cupcake phase. Whatever phase Mattie was in, Peter and I worked hard to find these items in order to get Mattie to eat. Mattie became quite emaciated during cancer treatment because he was usually feeling ill and had Mucositis (sores that lined his mouth and stomach from the chemotherapy). 


Quote of the day: It’s hard to do a really good job on anything you don’t think about in the shower. ~  Paul Graham

In the Fall, Peter and I went to a conference in Indiana to receive an award for Mattie Miracle. While I was there I received a text message from my lifetime friend, Karen. Karen always sends us a cute message when either of us are traveling about a themed song, movie, etc, focused upon the town we are visiting. So while we were in Indiana, she mentioned to me the movie, Breaking Away. A movie from 1979, that happened to win best screenplay. I had heard of the movie but never saw it until last night. Karen, like my parents, knows I can handle ONLY certain movies. Which is why I rarely go to the theaters to see movies. They all pre-approve movies before I see them. Which is helpful because I truly do not like movies with violence, sexual content, and no plot. Which truly rules out most movies today! Which is why I am lucky to have my pre-screeners. 

In any case, I LOVED, LOVED Breaking Away. I even love the title! It is so symbolic and prepares the viewer for the experience they are about to have. I think all of us have times in our lives we wish to break away, to change the patterns, and the misperceptions that we have of ourselves and that others have of us. The beautiful part about this movie is that the change that occurs happens because four friends stick together to support one another..... in meeting a goal. Yet in the process of helping someone meet his goal (winning a bicycle competition), the others learn a lot about themselves, their strengths, and the fact that they can accomplish whatever they put their minds too. Changing one's perceptions and thoughts isn't easy, and despite this movie being from the 70's it is still very timely and applicable today!

I am not sure what I loved more about the movie..... the story, the cinematography, or the music.... music composed by Rossini. The main character is enamored by Italy and the Italian culture and hearing all of this (since I am an Italian American) was truly fun and transports you away.

Movie Synopsis:

Best friends Dave, Mike, Cyril and Moocher have just graduated from high school. Living in the college town of Bloomington, Indiana, they are considered "cutters": the working class of the town so named since most of the middle aged generation, such as their parents, worked at the local limestone quarry, which is now a swimming hole. There is great animosity between the cutters and the generally wealthy Indiana University students, each group who have their own turf in town. The dichotomy is that the limestone was used to build the university, which is now seen as being too good for the locals who built it. Although each of the four is a totally different personality from the other three, they also have in common the fact of being unfocused and unmotivated in life. The one slight exception is Dave. Although he has no job and doesn't know what to do with his life, he is a champion bicycle racer. He idolizes the Italian cycling team so much he pretends to be Italian, much to the chagrin of his parents, especially his used car salesman father, Ray Stoller, who just doesn't understand his son. Dave crosses the unofficial line when he meets and wants to date a Indiana University co-ed named Katherine Bennett, who, intrigued by Dave, in turn is already dating Rod, one of the big men on campus. Dave passes himself off to her as an Italian exchange student named Enrico Gismondi. Beyond Katarina as he calls her, Dave's main immediate focus is that the Italian cycling team have announced that they will be in Indianapolis for an upcoming race, which he intends to enter to be able to race his idols. After an incident at the race, Dave, with a little help from his parents and unwittingly by actions of his friends, has to reexamine his life, what he really wants to get out of it and how best to start achieving it.