Saturday, September 23, 2017

Saturday, September 23, 2017

Tonight's picture was taken in June of 2009. I literally came across this photo on the blog as I was sifting through it the other day. This photo was no longer in my electronic files. So thank goodness for the blog, because it houses all the photos I took from July 2008 to September of 2009. It is like my Mattie archive! I am so happy I took this photo years ago, because it captured Mattie's love for locomotion. He loved building all sorts of tracks and watching his trains or cars maneuver on them. Mattie could be engaged in such an activity for hours...... well as long as he had Peter or me at his side. As Mattie was a social fellow and fed off of his interactions with others.  


Quote of the day: Nobody cares how much you know, until they know how much you care. ~ Theodore Roosevelt

Today we got together with one of Peter's childhood friends, Cassandra and her husband Charlie. Peter hasn't seen Cassandra for decades. Cassandra knows all about our situation from reading the blog and following us on Facebook. As is typical with me, I find that more people know about me, then I know about them. Cassandra wanted us to introduce her to Roosevelt Island and to also meet Sunny.

It was a delightful weather day in DC, it felt like summer. Sunny was thrilled to have a Roosevelt Island walk. While walking, we humans were busy talking and not paying attention to our surroundings. But guess who was fixated on his environment? SUNNY! Sunny literally stopped in his tracks and wanted to head right into the woods. When we looked over in the direction Sunny was pointing, we saw this female deer! 

Next to the female deer was a fawn. A tiny little thing. Sunny did not bark at all. When Peter held him back on the leash, he behaved and just watched the deer! Like the rest of us! We go to the Island often, but deer are NOT a common sighting. Especially when the Island is busy with people, like today. 

Another unlikely sighting was this beautiful turtle. He literally was walking in the vegetation by the side of the trail. An unusual place to find him. Sunny was NOT at all interested in the turtle! But today is case in point why Roosevelt Island is a little gem near the heart of the city. You can always find something in nature to spot and check out. Which maybe why it was one of our favorite weekend places to walk with Mattie. 

After our walk, we dropped Sunny back at home, and then went out for brunch. We tried a restaurant I had heard about in Arlington, VA called the Green Pig Bistro. Does the name get you, like it does me? Well they feature pork on the menu, which explains the "pig" and the "green" comes from the local produce featured on the menu. 

I have heard of fried chicken and waffles for years now. Today, I gave in and tried it. Only because I saw the table next to us was eating this dish while we were ordering and it looked intriguing. I would say it was very tasty, but that I also don't need to eat for the rest of the day! 

Friday, September 22, 2017

Friday, September 22, 2017

Tonight's picture was taken on June 15th of 2009, literally minutes before Mattie's sternotomy. In the pre-op area we were trying to make the mood lighter. After all Peter and I both understood that when osteosarcoma moves to the core area (spine, lungs, etc), it becomes an even more deadly disease to treat. In addition, Mattie's cancer had metastasized while on the most aggressive forms of chemotherapy. So you can put two and two together. 

We really loved Mattie's lung surgeon. He spent a lot of time with us prior to Mattie's surgery, answered all of our questions and after Mattie's surgery was complete, he personally visited us daily. He did not send in one of his fellows or residents! That made a huge difference to us and to Mattie's care. As you can see from this photo, we wrote a message to Dr. Chahine (prior to being wheeled into the operating room) and taped it to Mattie. It said.... Give us a Mattie Miracle. 

Quote of the day: They say a person needs just three things to be truly happy in this world: Someone to love, something to do, and something to hope for.

~ Tom Bodett

Last night a friend of ours introduced us to this unique greeting card line. I had heard about Emily McDowell's "cancer cards" through social media, but frankly until last night I never actually saw them. I believe when her card line originally was launched, there was one particular card that was an instant success as it addressed the complexities of relationships. But since then, her card line has expanded. Under the "empathy" cards, you can find cards very applicable to people diagnosed with cancer. 

https://emilymcdowell.com/collections/empathy-cards

Here are five of my favorites. The first one says, "please let me be the first to punch the next person who tells you everything happens for a reason." 

I can't tell you how often I heard this.... both after Mattie was diagnosed and when he died. At NO time did or do I find this platitude helpful. In fact it infuriates me and is such a trite statement. 

What this implies is that cancer makes our lives better. In fact recently I was on Capitol Hill and a young survivor of cancer, actually used these words...... that cancer has enriched her life. I honestly can't relate to this comment at all, and frankly question why she was selected to speak on behalf of childhood cancer survivors. Most survivors have long-term physical and psychosocial consequences to such toxic treatments, and though they maybe able to put these side effects into context, their lives are forever altered. Putting a smiley face to survivorship is not only disingenuous, it is disrespectful to children and families dealing with this aftermath. 

This is my second favorite card. It states, "I wish I could take away your pain, or at least take away the people who compare it to the time their hamster died."

You maybe asking yourself..... what???? Well this stuff actually happens. After Mattie died, a family friend literally said to me, "I know how you feel, because my horse died."

I really think that receiving such a card, not only brings about laughter, but it makes your head nod up and down.... indicating YES THIS HAS HAPPENED and I DON'T LIKE IT!

This is my third favorite. "Together we can find a cure for the phrase, what doesn't kill you makes you stronger."

Again this is another platitude which is doled out VERY often. But of course just like the one above, it serves no purpose to the recipient. More likely it benefits the deliverer.

My fourth favorite states, "I'm so sorry your sick. I want you to know that I will never try to sell you on some random treatment I read about on the Internet."

When Mattie was diagnosed with cancer, I received many email suggestions from people following our story. Everything from new treatments to consider to vitamins, and the list went on. I know this can be very overwhelming and stressful for some families. I was actually okay with this, as I took this as people trying to help us, not to judge the treatment Mattie was given. However, whatever was sent to me, I would share with Mattie's doctor. I would have to say HE WAS THE ONE WHO WAS ANNOYED! Clearly I didn't care how he felt about this!

This is the last card I am sharing. This one says, "If this is God's plan, God is a terrible planner." Guaranteed, if a loved one died you are going to hear this term or better yet.... "God's will." Either case, both are typically very poorly received. I honestly do not think God wishes any child to be diagnosed with cancer, and to suggest this, is not only misrepresenting God as a higher being, but it is also hurtful to the recipient. Because it makes it sound like you were singled out... for whatever reason! No reason WORKS! 


I would love to say that such insensitive comments ONLY come from people who have not experienced child loss. I can't tell you how many other bereaved parents have set me off over the years. It is true we all grieve differently, but parents who are grieving sometimes believe they know how to manage their thoughts and feelings and wish to instill this on you. Unfortunately grief doesn't work this way, and an insistent plan or methodology can be a total turn off. Which is why the support group model never worked for me. 

Thursday, September 21, 2017

Thursday, September 21, 2017

Tonight's picture was taken in June of 2009. Immediately after Mattie's sternotomy. Mattie's sternotomy was a surgery that entailed cutting through his chest and breast bone and going in to remove 9 lung tumors. Bone cancer that had metastasized to his lungs. Given that Mattie had two major 12-14 hours surgeries prior to this one, we weren't sure what to expect. However, in comparison to the limb salvaging surgeries, the sternotomy ran smoothly, and his recovery was actually much faster. Though when you see this photo, clearly Mattie was knocked out for the count, and had all sorts of blood pressure cuffs, catheters and drains coming out of him. It was daunting, stressful, and now in retrospect hard to believe that about two months after this surgery Mattie's cancer spread throughout his body. 


Quote of the day: There can be no deep disappointment where there is not deep love. ~ Martin Luther King Jr.



I think Martin Luther King's quote was brilliant. Because we can't really get upset over things that we aren't truly emotionally invested in. Before Mattie got cancer, I would say like any of us I had my share of disappointments. Yet with time I was able to put them into context and move on. Yet when an issue arises now and it revolves around Mattie, Mattie's memory, or the work we are doing on Mattie's behalf, disappointments constantly present themselves and unfortunately when they do they are NOT forgotten! 

The positive aspect of going to an event like Curefest last week, is that Peter and I came into contact with hundreds of bereaved parents in one consolidated time frame. It gives us incredible insights and also confirms to me that NO ONE gets over the loss of a child. We met parents who recently lost a child as well as parents like ourselves who are in this for the long haul. Ironically you would think that the ones who are newly bereaved would be the most heart breaking. But frankly they are too raw to know how they are feeling and this constant state of being in shock is actually a very beneficial defense mechanism that does enable us to block out certain things in order to be able to function and get up each morning. With time, those defenses come down and this is when all hell breaks lose. 

However, our conversations under our tent last weekend also pointed to the topic of disappointments. We can be disappointed by our friends, our family, our medical team, and society in general. There is a lot of sadness, anger and hurt to go around. But it isn't like all these emotions are going anywhere, there is no outlet for them. They remain with us always, it is just we get better at tempering and controlling them over time. I heard many parents talk about their child and how they as parents felt like they had been forgotten after the first year of bereavement. Totally can understand that and also relate to that hurt. What do we do about it? We can't change people's feelings or thoughts! So instead I see the number one way many of us deal with this is disengaging from others and the world. It is a way to temporarily regain equilibrium until we find a way to re-engage back in. I am not sure other parents would describe it this way, but in essence this is what is happening. 

I met a parent who lost an only child last weekend and she described her time on earth now as a prison sentence. Each day is the same, trapped with the same thoughts, feelings, emotions, and loss. Yet despite how horrible that may sound, when we both said good-bye to each other, we basically said.... "from one parole to another..... it was wonderful to meet you and find someone who understands." Not every bereaved parent can articulate thoughts and feelings, but when you find one who can, it can be a very positive experience because at the end of the day, it validates that we aren't going crazy, losing our minds, and are allowed to be rightfully disappointed. 

Wednesday, September 20, 2017

Wednesday, September 20, 2017

Tonight's picture was taken during Mattie's last semester in preschool, in 2007. Every Monday, his class visited the neighboring retirement community/adult care facility. I always went with Mattie's class on those days. Not because the teachers asked me, but one day while being a Monday parent helper, I saw the teachers really needed an extra pair of hands getting kids jackets on, having them line up and taking them for a walk (which involved crossing a street) to the center. Of course once inside, the kids needed help interacting with the older adults and encouragement in whatever activity they were going to perform together. On this particular visit Mattie's class enacted the Three Little Pigs to the older adults. Mattie was the kid in stripes, holding up a wolf mask. This was a very well received performance and the kids had a great time hamming it up!


Quote of the day: Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are. ~ John Wooden


Do you ever have a day that gets commandeered by something you didn't expect. Well on top of a head cold, which is making me very sleepy, I received a 400 page document in my e-mail inbox today. This document has to be read before my Friday licensure board meeting. Perhaps this last minute dump doesn't bother some people, but it bothers me. So I pleasantly let it be known. It is not fair to expect professionals to stop what they are doing to prepare for a meeting last minute. As the chair of the board, I really have to read all the content so I can have an opinion on each of the documents before talking to other members of the board. So if I wasn't walking Sunny today, I was reading this document. Glued to our kitchen table! May tomorrow be a better day. 

Tuesday, September 19, 2017

Tuesday, September 19, 2017 --- Mattie died 418 weeks ago today.

Tonight's picture was taken during Mattie's second birthday party. In fact, I just recently received this photo from one of Mattie's babysitters. Dana was a student of mine, and was Mattie's very first babysitter. She was excellent with Mattie. As a college educator, I had access to some wonderful young individuals who helped me once a week for a few hours with Mattie. Given then I interacted with these students for several months in classes, I could be very particular as to who I selected to work with Mattie. I only selected students to play with Mattie after my class and grading of them was over. Dana snapped this photo at Mattie's party, and recently sent it to me! I can't tell you how much it meant to receive this surprise. She is now a mom of her own, and I suspect this enables her to understand the nature of my loss much better. 


Quote of the day: Successful people are always looking for opportunities to help others. Unsuccessful people are always asking, "What's in it for me?” ~ Brian Tracy


Despite the fact that it is Tuesday, I am still reflecting on many of the interactions I had with parents at Curefest. When Peter and I work this event, we are really engaged with people who come into our tent. We typically don't have time to walk around or participate in the activities. Our sole focus is to promote Mattie Miracle, educate others about the importance of psychosocial care, and in the process listen and try to understand the thoughts and feelings of each of the visitors to our tent. 

This year more than ever, we interacted with MANY bereaved parents. Not only parents but the siblings of children who lost their battle. In fact, some of the people we were interacting with were so overwrought that I literally gave them several hugs. Words just didn't cut it! Needless to say, our mission for the inclusion of psychosocial care into the entire cancer experience (not just diagnosis and treatment, but into survivorship or end of life and bereavement) resonated with everyone on Sunday.  

But one young girl I was never forget. She had to be in her twenties. She let us know she lost her brother to cancer. In fact, she was wearing a photo button of him. She was absolutely distraught over his death, she says her parents don't talk about his death, and therefore she can't bring it up with them. When her brother was in treatment, there was NO outlet for siblings to meet, talk, or do things together in the hospital. In fact because of HIPAA, siblings weren't even introduced to each other, or invited to a planned hospital event. Which is sad, because this would have and could still be an outlet for this young woman. It was actually painful to see her leave our tent. If she was local, it would have been easier for me to stay in touch with her, but given she lives in New England, she is much further away. I nonetheless have her email and will reach out to her. Her face and psychosocial story will remain with me and when I hear these stories I realize that our experience with Mattie, has enabled us to hear other psychosocial stories, and have the insights into the issues, concerns, and problems. Thereby, concluding that the Standards are not only nice to have, but are a necessity. Upward and onward on our mission to achieve this implementation. 

Monday, September 18, 2017

Monday, September 18, 2017

Tonight's picture was taken in September of 2007. Mattie was having a playdate with his preschool friends John and Christopher. As you can see they transformed big Tupperware bins into train cars. John was the conductor and Mattie was all smiles as you can see in this photo. Despite the fact that Mattie and John were in different primary schools, I tried to keep Mattie connected to his preschool buddies. The families we met at Mattie's preschool continue to be special to us and though we can't get together and share stories about our children, we do unite over the mission of the Foundation. Which I am grateful for, and as I always say.... Mattie connected me with wonderful people. 


Quote of the day: If you think you are too small to be effective, you have never been in bed with a mosquito. ~ Betty Reese

This evening Peter and I were invited to an ice cream fundraiser held by a fellow childhood cancer organization, The Catherine Elizabeth Blair Foundation (Catherine lost her battle in 2011 to neuroblastoma). A portion of ice cream sales will go to the Foundation. I just learned about the Fundraiser yesterday. At the end of the day, I typically wane in energy and don't want to go out. But since we worked all weekend and had dinners at home, I feel tonight it is the perfect excuse to go out to dinner and have ice cream for a good cause. 

If anyone is in Clarendon, VA tonight... head to Nicecream (2831 Clarendon Blvd, Arlington, VA)! An new and innovative ice cream process. It is made right in front of you with fresh ingredients and of course nitrogen (in order to instantly freeze it). The event is from 6:30pm to 10pm. 

Sunday, September 17, 2017

Sunday, September 17, 2017

Tonight's photo was taken in September of 2006. This was classic Mattie! Mattie was four years old and the whole potty training experience was just that with Mattie.... an experience. By age 4, Mattie had mastered potty training, but I realized one thing with Mattie. He had to learn when he was ready, not on some other time line. Once he was ready, he learned quickly! But don't you love it..... sunglasses in the bathroom!?!









Quote of the day: No matter what you have done for yourself or for humanity, if you can't look back on having given love and attention to your own family, what have you really accomplished? ~ Lee Iococca

This morning Peter, myself, and Sunny walked two miles to the National Mall to participate in the annual childhood cancer awareness event. In tow was of course our shopping cart filled with 80 t-shirts, brochures, toys and gifts, our banner and collapsible slide. 

Last year we made a "selfie" cutout. I debated taking it this year, as it is one more thing to carry. But glad Peter said.... take it! It was a hit. 

Now this fellow was the highlight of our tent. He totally drew people in! People of all ages wanted to be introduced to Sunny and to pet him! He is truly the Mattie Miracle ambassador!

Our friend and board member, Ann came to help us today from 9am to 2pm. It was very important to have her presence, as it can be overwhelming at times to balance all the people who come by and visit. 

Mattie was honored on the remembrance wall at the event. I wish I could say this was a small wall, but it went on and on for many feet!

We reconnected with our fellow parent advocates at the event. Pictured with Peter is Joe McDonough. He is the founder of the B+ Foundation, in memory of his son Andrew. Andrew's blood type was B+, which is one of the reasons the Foundation got its name!

This is me with Karla Flook. Karla's daughter is a cancer survivor, and is a very active member and leader in the Coalition Against Childhood Cancer (CAC2). CAC 2 is an organization comprised of over 80 childhood cancer organizations, like Mattie Miracle, that works to coalesce around issues. 

Peter and I are pictured with Ellen Blair. Ellen lost her daughter to cancer, and is the Founder of the Catherine Elizabeth Blair Foundation. 

I am pictured with Jenny Mulks Wieneke, the Founder of Along Comes Hope. Jenny is a cancer survivor, and decided after her own experiences that she wanted to do something to help the community. Her focus is on bringing HOPE is all forms to children with cancer. 

This is the "Along Comes Hope" mascot. A cute teddy bear, who took a selfie with me.

We had many, many people who came into our tent to chat with us today. I would have to say the most memorable and poignant for me are from parents who lost a child to cancer. You can just tell that we speak the same language, as we are in a very different club from parents whose children survived. As soon as we mention to parents that it doesn't get easier after the first year of loss, you can see their eyes light up! Mainly because we are putting into words what they are already feeling and sensing. It is just that no one talks about it! I gave out many hugs today but one parent totally surprised me. Which is why I am posting a photo of this teddy bear. I am telling you this in case this happens to you!

This woman came up to me holding a teddy bear like the one in the photo. In addition to the bear, she had a bag of markers with her and a white t-shirt for the bear. She introduced the bear to me as "this is my son." I can imagine my facial expression was as perplexed as my mind was at that moment. I honestly did not get her. I asked her if the bear belonged to her son. She said NO, and repeated, "this is my son." I then asked her if she had a recording of her son's voice inside the bear (as Jenny, from the photo above, provides families with her HOPE bear which records voices). Again she said no! Finally she explained that the bear is an urn which contains her son's ashes. I honestly wish she told me this from the beginning, as I couldn't get over that she thought the bear was her son. I had to quickly assess.... was she stable and what context was she talking about. Once I got it, she asked me to sign the bear's t-shirt and then she showed me photos of her son, who's baby body was ravaged by cancer. With tumors literally protruding everywhere on his body. 

I have been thinking about this interaction for hours now. At first, I was totally taken aback that she brought her son's ashes to the Mall, then I was perplexed how she introduced the bear as her son, but now after thinking about it, I realize she is absolutely traumatized. She lost her son in April, and carrying this bear clearly helps to give her life meaning and purpose. She wants messages written on the bear's t-shirt, as I imagine these messages affirm for her that her son existed, his life mattered, and she wants others to know that this disease is very real and kills children. Needless to say, I shall never forget about the bear urn ever.