Saturday, September 7, 2019

Saturday, September 7, 2019

This photo was taken on August 10, 2009. About a month before Mattie died. At this point, we knew Mattie's condition was terminal and the goal was to try to make Mattie as comfortable as possible. A friend dropped off a horn for Mattie and by his side was the albino boa constrictor stuffed animal, Sunshine. Sunshine was given to Mattie by his friend in cancer, Jocelyn. Jocelyn had the same type of cancer Mattie had and despite their age difference, they got along beautifully. Sunshine meant a lot to Mattie, and the snake remains in Mattie's room even today. But from this photo you can tell that Mattie was neither happy or feeling good. 

Quote of the day: The life of the dead is placed in the heart of the living.~  Cicero

I got up early for a Saturday, in order to see the parade going down our street in honor of the Kennedy Center's expansion. I can safely say that in all the years I have lived here, I have never seen my particular neighborhood shut down for a parade. Streets were blocked with police and snow plows. Fortunately, we had a bird's eye view from our commons area and Sunny was with us too! 

The three smaller white buildings, are the additions to the Kennedy Center. In fact the Center is having 16 days of events, free to the public. The new addition includes:

• Three soaring pavilions featuring floor-to-ceiling windows.
• Eleven highly flexible spaces which will be used for the creation of art, performances, events, classes, and more.
• An outdoor stage and video wall, which will host concerts and film screenings.
•  A “green roof” and 130,000 square feet of landscaping and gardens, including a 35-tree ginkgo grove, walking paths, and lawns.
• A casual arts café that invites socializing and “dwell time” outside of regular performance activities.
• A connection—by way of a new pedestrian bridge spanning Rock Creek and Potomac Parkway—to the National Mall and other presidential memorials

Along the parade route, they were giving out balloons. I know Mattie would have insisted on getting a balloon if he were with us. As you can see Mattie will always be 7 years old in my mind, NOT 17 (his biological age if he were alive today). The balloons read... The Future is now! 

I have never seen this street blocked to vehicular traffic. Today was a first. 

We even saw the mayor, Muriel Bowser (in a striped jacket), out and about. 

A float of performers.
















I would like to say that today was a normal day for us. But frankly weekends and normal do not go together. On top of that, we are well aware of tomorrow being the tenth anniversary of Mattie's death. There never seems to be the right way to acknowledge and absorb such a horrible day. Nonetheless, we are both in a funk and at times today we took it out on the other one. So when this happens we know we have to regroup. 

Friday, September 6, 2019

Friday, September 6, 2019

Tonight's picture was taken on November 18, 2008. Mattie was in the hospital recovering from his second major limb salvaging surgery. With that surgery, he had his right leg bone, left arm bone, and left wrist bone removed and replaced with a prosthetic. I would say that surgery was the true beginning of the end. Mattie was never the same after it, as he could no longer walk, dress himself, or go to the bathroom without assistance. It was a nightmare for Mattie to not only be dealing with cancer, but also a profound physical disability. I snapped this photo because for the first several days post surgery, it was hard for Mattie to move from bed. His limbs were all wrapped up, he had drains at each surgical site, and he was dealing with a lot of pain. Despite all of that, Mattie was interested in playing, and you would be amazed how many things we actually did to entertain him while bed bound. 

Quote of the day: The objective of cleaning is not just to clean, but to feel happiness living within that environment. ~ Marie Kondo

I devoted the day to 'cleaning' out our walk-in closet. I absolutely hate this chore! My lifetime friend Karen, introduced me to Marie Kondo. Marie is Japanese and she specializes in helping families organize and clean out their homes. I watched an episode of her show last weekend on Netflix. She is absolutely adorable, calm, and seems to interact with the spaces she is assessing. Almost as if they were animate objects. 

I think I must have spent 8 hours cleaning this closet. I am not sure it brings me happiness as Marie Kondo suggests. Mainly because within this closet are Mattie items and of course Foundation items. Organizing Foundation items are easy. Assessing and figuring out what to do with Mattie items are much more complex. Of course this isn't my first time cleaning out this closet or going through Mattie's items. I remember the first time I went at it back in 2013. All I can say is WOW! It is not easy going through your deceased child's room, clothes, toys, and mementos. Frankly it is just NOT right, but I knew seeing Mattie's room in total chaos was not doing any justice to his memory. So that forced me to address the incredible hoard that was going on in his room. It maybe hard to imagine, but every day Mattie was on his cancer journey, he received gifts. After a while, these items started piling up, piling up and PILING UP. So between Mattie's items pre-cancer and the items we accumulated while in treatment, his room and our home were overwhelming. 

This may not look like an improvement, but I disposed of a lot of paper and am donating a ton of items. It is now a usable closet again, where I can find things.

Of course once you start on one closet, it becomes a bit of a domino effect. As now I want to address other areas in our home.  

If addressing this closet wasn't enough today, we also had one of our air conditioning units flood today. All over our floor! I have been working all day on drying the floor, but unfortunately the wood buckled. Thankfully Peter knows how to fix the floor, as he got good practice in the spring, when our neighbor's tub in the unit above us flooded and came through our walls and into Mattie's room. Quite a Friday here. 

Thursday, September 5, 2019

Thursday, September 5, 2019

Tonight's picture was taken in December of 2008. I decided to post a photo from that time of year, to set the stage for the rest of tonight's blog. Though Mattie was smiling for this photo, there was not a lot of happiness in our lives. By that point, Mattie had all of his limb salvaging surgeries and the surgeries left him wheelchair bound. That was frustrating to Mattie. In addition, Mattie lived with constant pain. Of course back then, the doctors (for the most part) did not believe he truly was in pain. Now in retrospect, we know Mattie was in REAL pain, not only from surgeries, but because cancer was taking over his body. 


Quote of the day: There is no one way to recover and heal from any trauma. Each survivor chooses their own path or stumbles across it. ~ Laurie Matthew

As I mentioned in last night's blog, we decided to participate in a docuseries on childhood cancer. The interview will take place in October. I asked the producer of the series what kind of things she would like me to provide her in order to help with our story. She asked for photos and videos of Mattie. Both pre-cancer and after Mattie was diagnosed. Rarely, or maybe EVER since Mattie died, have I looked at videos. Videos can be even more upsetting than photos. Frankly, I don't even remember taking videos of Mattie in the hospital, I only recall photos. But I was wrong! I have been culling through my electronic files and found several videos. Naturally back in 2008, this video DID NOT go on the blog.  I did not want to upset our hundreds of readers. Back then, I only described our night by using words. I think pairing the actual sound of Mattie to the commentary below (posting from December 5, 2008), may help you understand what we were up against. I have to warn you before listening to this video, be prepared it could be perceived as upsetting. 

I wish I could say that the video above was an isolated incident. It was NOT. Nights in the hospitals were even worse than the day hours. Everything was magnified at night and Mattie rarely ever slept. Another side effect of cancer treatment. He was up and agitated 24/7. Yet if he was up, so were we. Peter and I learned to work on little to no sleep for over a year. In addition to no sleep, we were witnessing Mattie in intense pain and we couldn't control the pain or the situation. Worse, we had residents and doctors judging us, observing us, and providing behavioral advice on how we should manage Mattie's moods and tirades. 

How I did not smack some of these people back then is beyond me! Because when I read the posting below from 2008, I am not sure I could be as civil today. Maybe because I have a better understanding for the cast of characters now and I know that medical residents think they are part therapist (despite NOT being qualified) in the middle of the night. At the end of the day, I knew it then and I know it now..... no one knows a child better than his/her parents. In 2008, I was not in the position to tell doctors off. I had to work within the dysfunctional system, and at the same time advocate for Mattie so that his quality of life wasn't significantly compromised. 

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Blog Posting from December 5, 2008:

There is so much I want to say tonight and yet so many emotions all at the same time which makes it complicated to know where to start. But in a nutshell, I feel sad, depressed, and pretty much angry with our current situation! Just when you think a night can't get any worse, it does. Thursday night was horrific. Mattie got to sleep at around midnight, and then was up at 2am. He woke up agitated and started crying. For 45 minutes Peter and I tried to comfort him, hold him, and listen to him. After that point we realized we were getting no where. So based on a conversation I had with a psychiatrist that afternoon regarding Mattie's behavior, I decided to adopt a different technique last night. After the 45 minutes of coddling, Peter and I then moved into a more firm approach. An approach you would probably take with a toddler who is refusing to listen to you, or to use his/her words. You know, the silent treatment, where you are present in the room, but are giving the child no attention until he/she calms down and uses words. Well Peter and I held firm for 90, YES THAT IS RIGHT, 90 minutes of screaming and yelling. We would periodically check in with Mattie and tell him that he needed to calm down, that he would need to tell us what was bothering him, and then we would come to his side and talk with him. But that never happened. Instead, this 90 minute ordeal further set him over the edge. At which point, the resident on call came in to observe what was going on. She told us to comply with whatever Mattie was asking for, and not to provoke him or use verbals. So we did this for 30 minutes while being observed. Let me tell you that is a humbling experience at 4 something in the morning! Any case, after 30 minutes, Mattie never calmed down and we had to give him Ativan. By this point, my emotions were frayed and physically I felt worn out. The resident explained that we only want to use Ativan now periodically, and instead encourage him to use his oral anti-anxiety medication. Which is why they held off of giving him Ativan right away. Turns out the resident started talking to me about the 90 minute behavioral technique I used. I explained to her that it wouldn't have been something I would have done at the moment, but this was something the psychiatrist recommended. Setting boundaries and limitations and "being the parent." God knows why I listen to this stuff. I have to trust my gut, and know that I really do know Mattie better than the rest of these folks.

This morning, Mattie was headed to his CT scan. Debbi (our sedation nurse and angel) came in to help me with Mattie. She started the sedation process in Mattie's room, and then we wheeled him down to the CT scan room, where Mattie met up with Jey (his "big brother"). Dr. Toretsky and Linda also met us down in the room. The irony is it takes longer to set Mattie up for the scan, than the scan itself. The scan only took about 10 minutes! After the scan was over, Debbi took Mattie upstairs to his room, and Linda bought me a hot chocolate. Thanks Linda! I told Linda about some of my concerns about separating from Mattie right now. Our doctors are recommending that I take some time away from the hospital. I think that is wonderful advice in theory, but not realistic for a child who is already traumatized and finds comfort in having both of his parents around in the hospital. All advice is good in theory, but I truly believe until you have had a child sick with a life threatening illness and have had to walk in my shoes, you shouldn't judge me.

I went back upstairs to Mattie's room and he was coming out of being sedated which is always a painful process. Mattie usually comes out of the process very agitated and crying. My head is filled with the sounds of crying. In fact, it is my background music most days. Debbi could hear this crying down the hallway, so she came back in and gave Mattie more of a sedative to calm him down. That indeed helped, because he slept for a good part of the day. The sleeping during the day isn't great I know, because I will pay for it tonight, but Mattie is so sleep deprived that I take whatever sleep he can get. When Debbi came in she mentioned to me that Dr. Toretsky wanted Peter to be present when he gave us the results of the CT today. Just hearing that was an instant red flag in my book. I felt that perhaps he already knew the results of the scan and it wasn't good and he wanted to break it to both of us together. So for the rest of the day, I was fixated about this scan and the results. So much so, that I e-mailed Peter several times. Peter couldn't get off of work, so we agreed I would hear the results alone, and then call him.

So this afternoon, Dr. Toretsky pulls me out of Mattie's room. But instead of telling me the results, he calls the whole team into the meeting. So to me that was the kiss of death! But mind you I had already prepared myself for bad news when I heard that he wanted Peter present at the meeting. I am a quick study of people and situations, which is a gift and a curse. If you recall I am the one who wanted Mattie to be scanned. Why? Because, I kept hearing from multiple people that the time frame between surgeries and the last time Mattie had chemo was significant. I couldn't shake that comment every time I heard it. So I felt for peace of mind, I had to do the scan. The scan of the lungs, because the lungs are the typical site for metastasis with osteosarcoma. The bottom line is it appears that Mattie has four lesions in his lungs. Two on the right side and two on the left side of his lungs. They are about 3mm in diameter. So right now they are small, and couldn't be removed through surgery. However, the doctors want to re-scan Mattie three weeks from now to see if there are any changes in these lesions. If they get smaller, that would be a blessing and mean that the new chemo drugs (I/E) are working. If the lesions get bigger, then we have an even more significant problem on our hands because it means the new drugs aren't working. Well I bet you can imagine how I felt about hearing this news. I was sobbing and very upset. In fact, when I am in shock I start to shiver and feel like I am going to throw up. Some people cry hysterically, I on the other hand start physically shutting down. Part of me can't believe this is happening. Wasn't four bone tumors enough? How much can one family be tested? So many things were running through my head, but the main one was how on earth is Mattie going to deal with this?

Wednesday, September 4, 2019

Wednesday, September 4, 2019

Tonight's picture was taken on September 7, 2008. This was during Mattie's first month of treatment. That evening, Peter surprised Mattie with a gift from his colleagues in Peru. They wrote a song for Mattie entitled, "My Little Child." The song was precious and Mattie LOVED it. He played it over and over again that night, I can't tell you how it energized Mattie. He was dancing to it for at least an hour, and I captured the motion in this photo. 







Quote of the day: No one is actually dead until the ripples they cause in the world die away. ~ Terry Pratchett

I had the opportunity to talk to two women today who are spearheading a docuseries on Childhood Cancer. They got connected to me through Dr. Shad (who now is the chief of pediatrics at Children's Hospital at Sinai, Baltimore, MD). As a recap, Dr. Shad was one of Mattie's doctors at Georgetown Hospital, and was on call the night/day that Mattie died. Since Mattie's death we have remained close to Dr. Shad, and she also sits on the Mattie Miracle board. 

We are very honored that Dr. Shad recommended our non-profit to be featured in this docuseries. Mattie Miracle is different! We are unique because our sole focus is on psychosocial advocacy, awareness, and support for children with cancer and their families. It is wonderful to have this opportunity to share Mattie, his story, and the Foundation's mission with the world (as the docuseries is geared to the non-cancer community). Mattie Miracle pioneered new territory in the advocacy space to include psychosocial care in comprehensive cancer treatment. 

I am happy to say that the docuseries is a grass roots effort and is being funded from corporate sponsors and other individuals, all of whom are not coping with childhood cancer. Mattie Miracle is opposed to projects that solicit from childhood cancer families, as our goal is to serve this community, not profit from them. The director and producer of this docuseries are familiar with the childhood cancer space and the director in particular is passionate about bringing attention to childhood cancer, as her best friend's son died at the age of 13 from the disease. 

It was a good call today and now we have about a month to prepare to be interviewed in mid-October. The interview will take place in our home. I am used to writing about Mattie and our experience daily, but talking about it is different. So in order to craft a logical message, I will have to think it through. Dig through photos and also provide videos. I RARELY if ever look at Mattie videos. Videos somehow seem more real than photos. But in order to convey what Mattie was like and how he was affected by cancer, videos are needed. Frankly I remember taking more photos of Mattie in the hospital than videos, but I will begin digging through my electronic files. Unfortunately Mattie's journey was before i-phones, so taking photos and videos back then were a bit more challenging. Nonetheless, I always had my trusty camera in hand. Thankfully I did, otherwise there would have been many lost moments, never to be seen or heard again. 

More about the Docuseries: https://www.thepromisedoc.com

Tuesday, September 3, 2019

Tuesday, September 3, 2019 -- Mattie died 518 weeks ago today. 

Tonight's picture was taken in September of 2008. Mattie was in his first month of receiving chemotherapy. We were home in between hospital visits when this photo was taken. In the beginning of Mattie's treatment we had opportunities to be home for longer periods of time between infusions. Mainly because Mattie was stronger and still had an immune system. However, with each successive treatment, Mattie became more depleted and therefore shortly after a chemo infusion was done, he would return home for maybe a day or so, but then have to be rushed back to the hospital because of fevers. That particular day, Mattie received this dancing bird. So literally he and Peter were dancing with the bird in our dining room!


Quote of the day: It’s so much darker when a light goes out than it would have been if it had never shone. ~ John Steinbeck

Today was the first day back at school for Mattie's friends. If Mattie were alive, this would be his senior year of high school. I can recall back in 2007, when Mattie started kindergarten that I truly couldn't wrap my head around the class of 2020. It seemed like YEARS away, however, it never dawned on me it wouldn't be years, but it would NEVER happen. 

Mattie's class has had an elementary and middle school graduation, both of which we did not go to, nor was Mattie acknowledged. I am not blaming anyone, as I am sure schools in general have NO IDEA what to do with a bereaved family. Or perhaps once the child is no longer in school, he is forgotten as part of a class. We are not part of a school class, and yet families like ours are still marketed to by companies regarding colleges, financial aid, and the list goes on. 

I happened to be walking Sunny in Alexandria today and passed his high school. While walking, I saw a mom taking a photo of her son on his first day of school. A momentous occasion and I am sure if Mattie was alive, I would be doing the same thing. I always wanted one of those photo collages that chronicle a child from kindergarten through 12th grade. Unfortunately I only got to snap ONE photo for Mattie. I have literally missed 1st through 12th grade milestones and photos. So to me the first day of school is a constant reminder of what I am missing. Perfect timing, as the anniversary of Mattie's death is at the end of the week. 

Back in 2009, Mattie died on the first day of school. I remember that morning like it were yesterday. I can still recall the nurses asking us who we want them to call. It was a horror show, and though we may look NORMAL on the outside, now we live with this internal horror each and every day. Not just on the first day of school. 

Monday, September 2, 2019

Monday, September 2, 2019

Tonight's picture was taken in September of 2008. Mattie was home between hospital treatments. Next to Mattie was our calico cat, Patches. Initially during the treatment cycles, we kept Patches at home. But we learned rather quickly that we were rarely home and therefore we had to find a place to care for Patches. Because Patches needed daily medication administration and care, we decided to board her at our vet's office for over a year. Though this did not make us happy, we had Mattie's care as our number 1 priority! So we tried to do what was best for the entire family. As you can see, Peter and I learned quickly how to give Mattie IV's and medications at home. 


Quote of the day: We cannot live only for ourselves. A thousand fibers connect us with our fellow men. ~ Herman Melville


We have lived in our complex for over twenty years. In all this time, we never met a foreign student who wanted to become our friend. This week this all changed. While out walking Sunny, we met a young woman from China. She lives a few doors down from us with three roommates. Also from China, and all studying at the George Washington University. 

Today our neighbor came by to drop off a pork dish she cooked. As we were talking the yesterday and I asked her if US Chinese restaurant food differs greatly from food in China. She felt that it does and wanted us to taste a more tradition dish. I tasted it, it was very spicy but very delicious. 

In any case, our friend came inside today and wanted to ask us a question. In a nutshell she met a man while shopping in a grocery store. She got talking with him and he encouraged her to come visit his church with him. He even agreed to pick her up and drive her there. She told us that she really wants to find a community here and feel a part of something, so she thought becoming part of a church would help. Certainly having a faith can connect you with like minded individuals, however, all sorts of red flags were going off inside my head. Especially since she does not come into this activity with a faith to begin with. 

I told her I did not want to sound like her parent, but I have concerns. Therefore, I felt it was important to caution her. She doesn't know this person she met at the grocery store and therefore should not get into a car alone with him. In addition, I asked her more specifics about the church, because I think it is important to know what she is getting herself into before taking a leap. As not all churches have the same intentions. 

Since she is a graduate student, I encouraged her to stay local. To pursue student groups on campus and to explore different faith groups at the University. I even wrote down specific things she could search for on the internet. It is my hope that this helps. As Peter and I know how disorienting it can be to be in a foreign land, not understanding aspects of the culture, and how things and people work. Funny how connections can happen while being out and about with Sunny. 

Sunday, September 1, 2019

Sunday, September 1, 2019

Tonight's picture was taken on September 4, 2008. Mattie was about a month into treatment and already things were getting overwhelming. So much so that Mattie created a safe space out of a cardboard box. Living in a hospital is not easy and if you have been hospitalized for any period of time you know what I am talking about. People are constantly hovering over you, poking and prodding you, and there is no privacy. Instead a total lack of control sets in. This was Mattie's way of controlling his space for just a few minutes, separated from people and noises. 




Quote of the day: Every three minutes in the USA, a family hears.... 'your child has cancer.'  


As we are officially into September, the childhood cancer community is now kicking it into full gear to promote facts about childhood cancer and to spread awareness through a go GOLD campaign. As gold is the official color of childhood cancer. GOLD will be publicized through social media, ads, marketing campaigns, and will even be displayed visually. As many advocates work hard to get their local buildings and bridges to light up gold for September. I would have to say whatever awareness has been created about childhood cancer has come from the grass roots level. 

I would like to say that seeing GOLD makes me feel better, instills hope, or makes me feel that childhood cancer is getting the attention it deserves. Unfortunately I am not one of the believers in this! Mainly because I have seen very little change or happen on the national level to aid in research or support for children with cancer and their families (a segment typically forgotten). Naturally I think all good change starts at the grass roots level, but other things also need to happen in tandem for true change to occur. Which is why it would make sense for childhood cancer organizations to align and work together. As unity creates strength in numbers. But that is an issue for another blog, as I have learned all too well the dysfunction that exists in our non-profit segment. I am not saying that childhood cancer non-profits hold a monopoly on dysfunction, I am simply saying that when I started in this space ten years ago, my hope was for camaraderie among organizations especially since many of us had a child die from cancer.   

I think grief motivates many of us, but at the same time it also makes us all look for our uniqueness, ways to shine, and to therefore keep our own child's memory alive. I do know that any time Mattie Miracle is asked to collaborate with another organizations, I have to do my due diligence to understand the intentions behind the ask because unfortunately in our first couple of years of operation we were burned. However, it only took me one time to get up to speed!

I found some photos to post tonight to show you how some cities turn GOLD in September. This is Dallas.

A park in Kansas City, MO.

Sydney, Australia

Wells Fargo in Norfolk, VA

The Boston Red Sox

Major League Soccer

National football