Saturday, March 28, 2015

Saturday, March 28, 2015

Tonight's picture was taken in March of 2008. Mattie came home from school one afternoon and wanted to go outside and fly a kite. Fortunately our commons area was the perfect place to do this in the city. The beauty about this space is there are no cars and it is walled off from the street. But from a kite stand point, there is a wind tunnel as you head down the walkway of our space. This was where Mattie first learned to fly a kite. What I also notice though are the evergreen potted trees Mattie was passing while running by our neighbor's home. You can see them, the kite was practically hitting them. Well our neighbors got tired of those trees and were going to throw them out! Until we rescued them. These trees are in Mattie's memorial garden which is outside his bedroom window in our commons area. While I work on the computer and look out Mattie's windows, I can see these trees. These trees have grown significantly and the ironic thing is...... trees they thought were dying are actually really THRIVING! 


Quote of the day: Without habit, the beauty of the world would overwhelm us. We’d pass out every time we saw— actually saw— a flower. Imagine if we only got to see a cumulonimbus cloud or Cassiopeia or a snowfall once a century: there’d be pandemonium in the streets. People would lie by the thousands in the fields on their backs. ~ Anthony Doerr


It seems to me the only "habit" we have in DC is grey weather and cold temperatures! We are officially into spring and today felt like winter. Blustery, frigid, and grey. Absolutely depressing. I see some people getting the mulch out and perhaps attempting to plant. You got to be kidding me??? I wouldn't! It is frigid out and too changeable. I think a sunny and warm day here in DC may cause chaos and euphoria here. 

The joke in our home today was Peter was balancing two technology projects. One for his company as well as helping me with the Foundation's Walk website. Peter has been working around the clock on his own work, as his company has a big system launch on Monday, but while he was dealing with that today, he found a bug in the software I was using for the Walk website and called the company to report it! They were clueless about it!!! But Peter was correct and now they are fixing their system, which affects all their customers! Got to love it now??? I told Peter they should give us a discount for his work today.  

In addition to website work and working to redesign the whole new look and feel of the Foundation's Walk, I also am now fully focused on the Foundation's raffle. So needless to say I have my hands full on all levels. 

I end tonight's posting with a photo of "Mr. Lizard on the wall." My mom sent me this photo today. While we are freezing in DC, my parents are very warm in Los Angeles, so much so that you can see a lizard is basking outside in the garden. Mattie would have gotten a huge kick out of this. In fact, I have two plastic lizards on the dash board of my car that are Mattie's. Mattie loved anything creepy and crawling. After Mattie died, I found a green plastic lizard in my car and Peter found an orange one in his. So they are now united on my dash board. 

Friday, March 27, 2015

Friday, March 27, 2015

Tonight's picture was taken in March of 2009. Mattie was at the opening reception of the children's art gallery at the hospital. There were all sorts of activities and the volunteer musicians from the hospital came to entertain the kids. As you can see Mattie was right in the mix and he had a booklet that they gave him to try to sing along. In a way all the volunteers knew Mattie because they saw him every week. When you live at the hospital and get all your treatments on an inpatient basis, this familiarity is bound to happen.





Quote of the day: Kind words do not cost much. Yet they accomplish much. ~ Blaise Pascal

I spent another day glued to the computer working on developing the Foundation's Walk website. While working today, I received this adorable photo through email. This cute duckie flower arrangement is for a little girl's birthday party which is being celebrated this weekend. The little girl's name is Gigi and her uncle is Brandon, Mattie's big buddy from Georgetown. Mattie and Brandon were diagnosed with cancer around the same time in 2008, and despite their significant age differences, they became good friends. Brandon really looked out for Mattie and was a dedicated friend to Mattie until the end. In fact, the day Mattie died, Brandon came to the hospital and sat with us. It wasn't easy for a young teenager at the time to sit in a room with a dead friend! But Brandon did it! Brandon and his family come to every Foundation Walk as well. Today's photo was sent to me by Brandon's sister, Ashley. She wanted me to know that as she created Gigi's centerpiece, she put in two butterflies in honor of Mattie. Why?? Because Mattie and Gigi share the SAME birthday..... April 4th! 

Thursday, March 26, 2015

Thursday, March 26, 2015

Tonight's picture was taken on March 28 of 2009. I don't think Peter nor I will ever forget this day at the Hospital. It was the unveiling of the children's art gallery. For weeks Mattie and I had been working on projects for this exhibit. Linda, Mattie's child life specialist, asked Mattie to think about what an ideal hospital would be like. Naturally as you can see from the photo Mattie conceptualized this in Legos! Mattie also created a wonderful story about his hospital, which was framed behind his Lego creation. This story remains up in the Hospital's art gallery to this day. 

Quote of the day: And gradually his memory slipped a little, as memories do, even those with so much love attached to them; as if there is an unconscious healing process within the mind which mends up in spite of our desperate determination never to forget. ~ Colleen McCullough


Tonight's quote truly fascinates me. It is a reality that anyone who has lost someone near and dear to them understands quite well. With time, the mind finds a way to either block out pain, rewrite what has happened, or it makes certain memories a little less vivid. Certainly that wouldn't be so bad if we are talking about the horrors of cancer and watching a child die a painful death for example. Yet it isn't only the pain that can fade with time, so do the other wonderful and more heartfelt memories. The ones you would like to capture for a lifetime. Such as the exact sound of your child's voice and touch, the way he used to laugh, think about things, and even how he used to smell. The platitude of time heals all wounds is not exactly true because I think it can cause great sadness and even anxiety to know that these memories are fading. Where they even a part of your life? My joke with Mattie's social worker, whenever I see her, is that I long from the days when we had just lost Mattie. The first year of loss and grief, which was horrific and raw, but at least it was very clear how I was feeling and the memories were crystal clear. 

I decided to share with you some photos taken from the children's art gallery exhibit back in 2008. This was a close up of Mattie's Lego hospital. In Mattie's hospital he designed hospital rooms for children that were large. They all had private bathrooms, large closets, and an outdoor play and garden area. There were tree houses for the children to play on and they could even watch the helicopters come in for a landing. Mattie designed his Lego hospital to correct for all the problems we experienced in our room! We shared bathrooms with other families, the rooms were very tight and I slept in a chair, there were NO closets, and forget an outdoor play space. It doesn't exist at Georgetown.  

I totally forgot about this poem entitled, Intensive Care. I did not exactly write the poem. I was talking to Liz, who was the visiting artist who came to the Hospital to work with the children and families. Liz took a liking to Mattie, and did many projects with him during his stay at Georgetown. Any case, one day while talking to Liz, she captured the essence of what I was saying and transformed it into poetry. She mentions a "noise maker" in the poem. She is referring to our sound machine. One of my former students gave me a sound machine as a gift while we were in the hospital. It was the BEST gift we ever received. We used it every night while Mattie was battling cancer and frankly we still use it to this day. We got conditioned to needing to hear the sound of rain at night in order to sleep. But in the hospital we used the sound of rain to drown out the other more noxious sounds that come from a pediatric intensive care unit! Sounds from machines and other dying children!

"Intensive Care"

Storage, or an assigned room, would be nice;
"Room at an inn,"
For the times we know we'll be back from treatment.

Always moving in, or moving out - sharing the same bathroom;
Showers away from home, 
The difficult parking....

All I want is a room with a view, Anything to look at but these blank walls, 
The monitor: the steady drip of medicine marching into battle -

Buzzers, bells and footsteps
Marking hours that mock time - 
Sounds my noise maker drowns
In a waterfall of rain, 
To wash away pain;
Send blessings to my sleeping boy -

And I sit here, amazed at the maze of the hospital;
Stuck here for months on end, 
Wanting movement of any kind,
To multiply "child life" by ten,
Support groups; a place to meet other parents
That is not too small, or cold....
Maybe, in my dreams, a terrace
A garden for children to play in, to be with our son
And breathe in open air -
"M's" Mother (Scribe - Liz Pester)

When Mattie was treated at Georgetown, there was no pediatric oncology unit. It was closed for renovation. So Mattie had all of his treatments in the PICU. A PICU is a very unsettling environment to be in. You are surrounded by children who are intubated and in critical condition. This can be harrowing to see especially when you are adjusting to your child undergoing chemotherapy and contending with a cancer diagnosis. Of course Mattie's cancer involved multiple surgeries, so in his case, he would have spent a lot of time in a PICU any way. But there are definite differences between a PICU and a regular oncology unit. In any case, in 2009, I decided to create an art collage for the children's gallery that advocated for the need to open back up the pediatric inpatient oncology unit at Georgetown Hospital. 

Wednesday, March 25, 2015

Wednesday, March 25, 2015

Tonight's picture was taken in March of 2009. It may look like Mattie was being wheeled down the hallway with a group of people, but with Mattie it was never just simple. Instead there was singing going on with this troop to ABBA music. Surrounding Mattie was Mary (in the blue jacket, who was a child life volunteer), Meg (who was a child life intern), and Brandon (Mattie's big buddy). Next to me was of course Linda (Mattie's child life specialist). We never went too far without Linda. She made life bearable for us in the hospital. 



Quote of the day: Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~ Leo Buscaglia


I spent a majority of my day parked in front of a computer. I am trying to design our Foundation's Walk website from the ground up. The reason we need to do that this year is because the Walk is completely different and involves individuals and teams raising money for us prior to the day of the Walk. In addition, we need a mechanism for individuals to be able to register as teams and to also be able to fundraise for us online using secure websites. So thankfully Peter found the technology on line, but now I am trying to design a majority of the webpage myself. 

In the past our Walk webpage was designed by Peter from scratch. I actually loved the old site. It had a very personal feeling to it and we were able to use our own photos and Mattie's art work. However, given all that we need from this new website, we have to use a template designed by a company. We can try to tweak the template to have more of our colors and certainly our content, but it can never look like the original website Peter created. It was hard to say good-bye to Peter's original Walk website, but I know that given what we need now, we have no choice.

Over the course of the last two weeks I have studied other walk, run, and race websites to glimmer content from them that I wanted to add to our website. So slowly but surely our site is getting built. But there are certainly things I do not understand and today for example I was getting frustrated so I got into a live chat session with the company that makes the software for the Walk website. The funny part is by the time I finished with him, he was just as confused. So literally I had to give him an example of what I was talking about. I literally told him..... "we are going to create a walking team. You and I are the Apple Team. You are the team captain and I am a team member," etc! Examples help, because by the time I finished we both got it!  

In the midst of working today, I received this lovely photo of the Hunting Island State Park Lighthouse in South Carolina from my friend Christine. She was thinking of me as she was CLIMBING up the steps! I am a huge lighthouse affectionato. Peter and I started Mattie on lighthouses before he could walk! He climbed up many lighthouses on Peter's back! So it was lovely to receive this wonderful beacon of hope in the midst of staring at my computer screen today. 

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.