Saturday, September 16, 2017

Saturday, September 16, 2017

Tonight's picture was taken in September of 2007. Peter took Mattie to Boston to visit his family, and while there the cousins all got together and went on a boat ride on the Boston Harbor together.  As you can see Mattie was hamming it up for the camera, and was having a good time being one of the kids. It is hard to believe that a year after this photo was taken Mattie was battling cancer. 


Quote of the day: If your actions inspire others to dream more, learn more, do more and become more, you are a leader. ~ John Quincy Adams

We started off our day outside on the deck. All of us were outside having breakfast, even a bumble bee. Do you see him sitting on the flower of our ginger lily. This bee was with us throughout breakfast. 

Indie was transfixed on this bee. She couldn't take her eyes off of it and really wanted to jump up at catch it!

The beauty of Indie! Indie LOVES outdoor time. She doesn't care what the weather is like, she is even on our deck when it is raining! 

Meanwhile, things are all over the place as we get ready for Curefest, the national awareness event on the Washington Mall tomorrow. Mattie Miracle will have a booth at the event and we will get there with Sunny by 8:30am to set up. Mind you we take about a two mile walk with our things to get there, with Sunny in tow! It will be a full day, as we won't pack up there until 2pm. 

I received this lovely photo from our friend Kristen today. She is starting her own non-profit featuring kindness stones. Her stones this month feature childhood cancer awareness messages. She drops these stone all over her area, and I would just love to know who will pick one of these beauties up! This particular stone features Mattie and the Foundation!

Friday, September 15, 2017

Friday, September 15, 2017

Tonight's picture was taken in September of 2007. It was Mattie's first day of kindergarten. I honestly had no idea what was in store for us, because at the completion of kindergarten Mattie was diagnosed with cancer. On that particular day I snapped this photo, I figured there would be many more "first days" of school in Mattie's life. After all, he looked like the picture of health. Mattie really did not want to take this photo, as he was anxious about getting to school. But I encouraged him to pause for just a minute to capture the moment. I'm glad I did. 





Quote of the day: Chaos in the midst of chaos isn't funny, but chaos in the midst of order is. ~ Steve Martin

Sunny went to his groomer's today. Since we got Sunny a year ago, Mandy has been taking good care of Sunny's teeth, ears, nails, and fur every month. However, Mandy left the company she was working at in August, but joined another grooming practice. In theory both locations are in Alexandria, VA, but her new location takes me an additional twenty minutes to get to, so about 40 minutes each way. Yet she does a great job with Sunny and for the first time Sunny wasn't shaking like a leaf when entering a grooming facility. I actually did not like where Mandy was located before, and only took Sunny there for Mandy visits. Nothing else. As soon as Sunny saw the car heading to this former facility, he would whine and trying to get him in the door was painful! Mandy sent me this photo today of Sunny after grooming. Unlike in the former facility, after Sunny was groomed today he got to walk around freely inside with the three other dogs getting groomed. It was like visiting a house, rather than a kennel!

Tonight our friends invited us to Wolf Trap, which is an outdoor performing arts pavilion. They got tickets to see Steve Martin and Martin Short perform. Before the show, we ate outside on a picnic table. We sat next to another couple, of which the man was a retired US Air pilot and his significant other has been an international flight attendant for United for over 25 years. We all had fun talking together and they were lovely to have shared their table with us.  I cooked dinner, to thank our friends for these tickets. Tonight's menu:

Balsamic Flank Steak
Ginger Honey Glazed Carrots
String Beans with Mint
Quinoa with cranberries, pecans, and apples

We were fortunate to have inside seats, I would say about 10-15 rows from the front of the stage. It was a beautiful weather evening tonight, and literally there had to be 6,000 in attendance. 

I have to admit I knew Steve Martin and Martin Short, but had no idea how talented Martin Short is..... he can do slapstick humor which reminded me of Lucille Ball. He does great impressions of people, and has an incredible singing voice. They both play well off of each other because Steve Martin appears to be the more serious and cerebral one and Martin Short is a ham. You can tell he LOVES and craves the audience's attention. They took no breaks and performed for two hours straight. They had an 8 piece band with them, which was incredible. In fact the "Steep Canyon Rangers" tour and they are releasing an album this month. Steve Martin is part of this group, and plays the banjo. It is hard to believe that Steve Martin is 72 and Martin Short, 67. They have incredible energy and I felt as if Lucy and Ethel had come alive tonight..... just the male versions. 

It was a very telling opening in which they bantered back and forth about Hollywood compliments. Their point was to show us in a humorous way that Hollywood is challenging and delivers only backhanded compliments. Which in a way can be toxic if you think about it because these are born stand up comedians needing positive feedback and validation. I think the psychology of comedians is fascinating and I wish I knew more about their personal lives, because I have a feeling they return to the stage for a purpose. They don't have to do these performances for financial reasons, but I suspect instead to fulfill an inner need. 

Thursday, September 14, 2017

Thursday, September 14, 2017

Tonight's picture was taken in August of 2008. I remember that moment in time so well. We were a few weeks into Mattie's diagnosis and treatment began. We tried to keep things as normal as possible for Mattie, but life was anything but normal. That day we took Mattie for a walk with our neighbor's dog, JJ. Mattie and JJ practically grew up together. In fact, I would say JJ was Mattie's first real experience around a dog, and most likely why he wanted a dog. 


Quote of the day: It's one of the ironies of human nature that the most sensitive people are generally insensitive to the feelings of others. ~ Ann Landers


I have respect for the work Ann Landers did, but I have to say her quote tonight was off base. Or at least off base as it relates to me and my experiences today. I get what she is saying, that when we are so hyper sensitive to things and what is said to us, that perhaps we internalize these feelings and words making it impossible to look beyond ourselves and our own hurts. I can appreciate this sentiment, but I would say that.....  YES I am a SENSITIVE person with regard to the content of today's childhood cancer caucus, but overall, I was angry as it related to the overall childhood cancer landscape. 

For eight years, Peter and I have gone to the childhood cancer caucus on Capitol Hill. It is held every September, as September is National Childhood Cancer Awareness Month. The purpose of the Caucus is to hear what legislators are doing about this health crisis and to introduce us to the cutting edge research and bills to address these issues. Naturally as Mattie Miracle is 8 years old, we have grown with the caucus. Or at least one of us is growing, the other remains stuck in the same mantra. Which may explain the incredibly low turn out of advocates today. After all, if the message is always about the medicine, featuring the same players at the table, it becomes a very monopolistic and uni-focused platform. 

Despite our efforts on the Hill to introduce the terminology of psychosocial care, it has yet to even be a word mentioned at the caucus. In fact, I wrote every staffer planning this event this year, and encouraged the inclusion of psychosocial care. My goal was not to commandeer the agenda, since I know the agenda is always about the medicine, but to at least make the discussion of cancer more comprehensive. In fact, whether you are a cancer survivor or a parent of a child who lost the cancer battle, one thing is clear.... the psychosocial issues don't end when the treatment does. If you doubt me, talk to any survivor or bereaved parent. It is truly short sided, disingenuous, and bordering on unethical to leave the discussion of psychosocial issues out of this forum. A forum where advocates come to discuss real world issues. Regardless of how you feel about what I am saying, the lack of attendance spoke volumes. 

Before the caucus started, Peter and I took a photo with Stan Robbins, who is on the board of another non-profit, Nellie's Champions for Kids. 

The 8th Annual Caucus cover slide. The event began with a greeting from the four childhood cancer caucus co-chairs. Unfortunately many of them were repeating information just mentioned by the other representative. 

There were four childhood cancer survivors featured at this event. Note that these survivors were selected because they were connected to the congressional members by either living in their congressional home district or having been treated in their congressional home district. So there was a political purpose to highlighting these children. This is where the message was lost on me, because instead of substance and content, I couldn't get over the self serving, self promoting nature of this whole event. The event felt political, with the focus on the congressional members and spotlighting how they are champions of childhood cancer. There certainly is a time and place for this, but it isn't the caucus. 

There were moments such as this at the caucus, where it was stopped for the survivors to take photos with the representatives. Of course with this line up, we can only deduce that children really survive cancer! In fact, the word CURE was mentioned many times today. A word I don't really like, and if I were a survivor I would be having a field day with this. Because it sugar coats the late effects most if not all children contend with from treatment. Anything from secondary cancers, heart issues, and diabetes for example and these are only the physical effects. There are also a host of mental health concerns that also arise. Arise and change with each developmental period. 

If the caucus wasn't enough of a test to sit through for three hours, then there was a luncheon thereafter. At the luncheon, I had the opportunity to talk with one of the pediatric oncologists who presented at the caucus. We bumped into each other by happenstance, so I started talking. In our conversation, I mentioned that I lost my only child to cancer. He did say he was sorry to hear this but then quickly retorted that he felt that this is actually easier to cope with than parents who lose a child to cancer and then have other children to raise. Mainly because the siblings are affected from the treatment and death and it can be a real challenge to raise them while also dealing with grief. I do not disagree that siblings are most likely impacted by childhood cancer and how the treatment and death does alter their family's life. What I took issue with, and I told him as much, is that losing an only child has many ramifications. You lose your parent identity, you lose friendships with other parents, and I said a few other things. He quickly responded back by saying, 'once a parent always a parent.' That doesn't end in death. Completely missing my point, about the daily tasks, struggles, and joys of raising a child and growing up with them and into the future. So NO..... NOT ONCE A PARENT ALWAYS A PARENT! But worse he told me that having many friends is overrated. He has a handful of friends and knows these are real friends, others get weeded out over time by all of us, whether through cancer or other life circumstances. Frankly I felt like I was going to explode right in front of him, but I never did. I didn't raise my voice, or argue. I may have at one time, but today, I figured he is so out of touch, I wouldn't know where to go with him. The scary part is he works with patients and I have no doubt spouts his philosophical beliefs on them. As if his way of thinking is tantamount and that he knows better how bereaved parents should feel. REALLY?!!! Honestly who teaches these doctors?????!!

The highlight of my day was our friend Kristen, sent us some beautiful kindness stones that she and her children designed today. Don't you just love the Mattie theme in honor of childhood cancer awareness month?

A Mattie sun!!! Keep in mind that gold is the official color of childhood cancer awareness. 

No stone should be left unturned without an important message on it!

Wednesday, September 13, 2017

Wednesday, September 13, 2017

Tonight's picture was taken in September of 2008. Mattie was in his first month of treatment at the hospital and by that time had made himself a very frequent visitor to the art table in clinic. Mattie had two amazing art therapists who understood that art had to come from within and NOT be directed by the therapist. You would actually be amazed by the information we learned from Mattie when he was doing art. As can happen so often, feelings and thoughts get transferred to the art. I literally saw art therapy in motion with Mattie. So many of Mattie's art projects are now sitting in our home. At the time we had no idea that these would be his legacy items. 


Quote of the day: Either you run the day, or the day runs you. ~ Jim Rohn

Peter and I have a full day on Capitol Hill tomorrow. Literally we start the day at 9am and the day ends at 8pm. The first thing we are attending is the 8th annual childhood cancer caucus. Literally we have attended all eight years. I wish I could say that the message has changed in 8 years. However, even without seeing the agenda I know the speakers will be discussing ONLY the medicine, drug development and the usual mantra of the National Cancer Institute (part of NIH) needs to spend more than 4% of its budget on childhood cancer research. 

Certainly I know that families want better treatments and I support this notion. But what I do not support is talking about the physical care in isolation of the psychosocial issues. Yet at this caucus there will always have survivors testifying. But guess what? They aren't talking about their experiences, memories, or feelings about the medical treatment! What they are discussing are the long lasting psychosocial impact of the treatment and late effects. As I always say..... the psychosocial issues don't end when the treatment does! I live in hope that ONE DAY the caucus will talk about true comprehensive cancer care. It isn't like Mattie Miracle is silent on this issue. We bring it up EVERY YEAR to the planners of this event. Yet as you can see we have much more work to do!

Tomorrow's line up is the Caucus, the Alliance for Childhood Cancer Luncheon, and a Golden Toast event in the evening. More to report tomorrow!

Tuesday, September 12, 2017

Tuesday, September 12, 2017 -- Mattie died 417 weeks ago today.

Tonight's picture was taken in September of 2008. Mattie had completed a month's worth of chemotherapy by this point. By mid-day as you can see in this photo I was exhausted, since Mattie no longer slept at night. I think this was a natural reaction to living in a PICU, as there is constant activity and light 24 hours a day there, and it absolutely impacts patients and families. As I wanted to take a nap, I sat on my cot in the room and encouraged Mattie to rest for a few minutes. But you can see it was virtually impossible. Mattie's legs were moving all over the place and he just did not want to be contained in a bed. What fascinates me is the body adjusts to not getting sleep. After a while if you don't get it and you are living under constant stress, you somehow learn to function on very little sleep. 


Quote of the day: Every charitable act is a stepping stone toward heaven. ~ Henry Ward Beecher

This is Day 5 and the final day of orange tie week! Peter and I want to thank Tim for keeping this tradition going in memory of Mattie. It certainly brightens up Mattie's anniversary week for us. It is very special knowing that someone who never met Mattie, feels like he knows him from our words and stories!  

This afternoon, I went on a walk with Sunny. Since he had two walks already prior to this third walk, my goal was for it to a short walk. FORGET it. I was out with him for over 90 minutes! Why? Well two people I met on the street, STRANGERS, started talking to me and one in particular was non-stop chatter for over thirty minutes. Both of these individuals started talking to me because of Sunny. One fellow literally gave me his life story, which I won't repeat here. But Sunny caught his attention because he grew up watching Lassie on TV. He stopped me for a good twenty minutes. The next person was a lady with a sad history as she lost her mom, brother, and fiance to cancer. Clearly she was lonely, which I gathered, as she was talking to me a COMPLETE stranger for thirty minutes about her life. Make a long story short, she stopped me because she felt that Sunny looked like a fox and wanted to know if one of Sunny's parents was an actual fox!!!! Get the picture?!

I have no doubt that the average person would have walked away from both of these individuals. But I did not want to be rude, as clearly they needed to talk to someone. As long as I deem myself safe, which I was, then I let the talking go on. Meanwhile you maybe asking what Sunny was doing while all this chatter was going on? Well he got the picture and literally sat down next to me on his own volition. He is one smart and sensitive pooch! 

My conclusion for the day is that there are many lonely and troubled people all around us. Not just adults but teens and kids. It is scary how many significant mental health challenges our youth are experiencing today. One has to ask why? I am not sure there is just one answer to this, but what I do sense is we have moved away from a society that knows how to connect with each other, knows how to listen, and wants to invest and help those who live around us. We are too busy working, glued to technology, and focused inward. Living like this has consequences on our overall culture and I see it each day on the streets of DC while walking Sunny. 

Monday, September 11, 2017

Monday, September 11, 2017

Tonight's picture was taken in September of 2008. Mattie was in treatment for about a month at that point. The computer you see in front of Mattie was given to him by his technology teacher at school. Mattie and Mary had a special connection, so much so that Mary visited Mattie every week in the hospital to teach him a few lessons on the computer. However, Mary quickly deduced that Mattie really did not have the energy or ability to focus on school work. So instead in those moments, she played with Mattie. I can recall that one day Mattie was building a huge apartment building in his room out of a large packing box. This was NO ordinary box, as Mattie was designing an elevator with a pulley system. Mary jumped into whatever activity Mattie was involved in, which I really appreciated. While Mary interacted with Mattie for an hour, I would leave the room and sit in the hallway. It was an hour to myself to regroup. I will always remember Mary's kindness. In fact, Mattie recorded a message to me on this computer, and about two years ago, Mary downloaded it and sent it to me. I have it, but I have yet to listen to it. Videos that involve voice are actually harder to view than photos. 


Quote of the day: I hope today as we commemorate the 16th anniversary of 9/11, everyone will stop for a moment and remember all the people who gave their lives that day. ~ Magaly Lemagne (lost her brother, a NJ Police Officer on 9/11)

Tim sent us this photo today! This is orange tie number 4, in Orange Tie week. Tim wears a different orange tie to work for a week in memory of Mattie. Specifically timed with the anniversary of Mattie's death. Tim adds to the tie collection every year, and I have to say that I look forward to receiving this photos. It is a reminder to me that my words are important, because Tim never met Mattie, yet through the blog he feels like he has gotten to know him.  

Unlike other days in the year, HUGE American flags come out in recognition of 9/11. I am actually happy to see these visual reminders because frankly without them, I would never know it was 9/11 in our region. Everyone I saw today, made NO MENTION to this day and how it changed every aspect of our Country moving forward. If it weren't for the Smithsonian Channel or History Channel, I would literally see VERY little coverage of this 16th anniversary. I find this upsetting and I did not lose a loved one in 9/11. Yet I remember the day vividly, being pregnant with Mattie and confused about what was happening and not sure how Peter was going to get home from his worksite in Virginia. I think these visuals of people jumping out of the World Trade Center will always remain with me and frankly this was the turning point where I realized we are never truly safe.

Naturally high school students (and younger) today, for the most part weren't even born when 9/11 happened and have no personal understanding to how our Country was impacted and the chaos that unfolded from that day. Cities shut down. Not for just a day, but days and weeks. Airplanes all over the Country were grounded. Stores and banks closed, and DC looked like a ghost town. People were afraid to go back onto planes for quite some time after that, as we never had an attack like this in our history, in which terrorists used our own planes against us to cause death and harm to thousands of people. 

Another sight outside the car window today. 

Mind you this is a photo of Roslyn, VA, who yearly drape flags from the roofs of buildings. I am not seeing flags unfurled like this in DC. 

Sunny and I went on a walk today. We were standing in DC, and looking at Roslyn, VA. You will see several buildings with flags on top of them, draped down. 

To all my animal lover friends, check out this 9/11 hero. This is a video of Bretagne (pronounced Brittany), the LAST 9/11 search and rescue dog walking into the vet's office for the last time with a hero's salute. She would have turned 17 in August.

May we never forget this day..... the 3,000 fellow Americans who lost their lives, the rescue workers who sacrificed themselves to save others and remain affected both physically and mentally, and for all the families and friends left behind and forever changed.

Last Search & Rescue Dog from 9/11 put to sleep (Bretagne)

https://www.youtube.com/watch?v=B0k5yt2H5l4

Sunday, September 10, 2017

Sunday, September 10, 2017

Tonight's picture was taken in August of 2009. I posted a similar photo a few nights ago of Peter wheeling Mattie out onto our deck to see his much wished gift.... a ride on car. This was an item Mattie wanted even when he was healthy. But I always refused this request, until we found out Mattie was dying. That particular day, Mattie sat outside on our deck and watched Peter put "Speedy Red" together. Naturally if Mattie did not have cancer, he would have been running around and trying to participate in the assemble process, but given Mattie's fragile state, he did not have the energy for this, yet he didn't want to miss out and stayed outside for hours watching Peter.


Quote of the day: You can't be brave if you've only had wonderful things happen to you. ~ Mary Tyler Moore

I woke up this morning to hearing the DC Triathlon right outside our windows. Sunny was besides himself! He wanted to go outdoors and watch the commotion. It isn't everyday that we have bicycles RATHER than cars on Route 66. You can see Sunny watching the bicycle riders from above. Peter and I loved the peacefulness of NO cars. 

While Sunny was on our balcony, our neighbor and her dog, were on the balcony below. Sunny was not only watching bicycles but communicating to his doggy buddy in the unit below ours!

Meanwhile, next weekend Peter and I are participating in Curefest. It is a National event held each September on the National Mall. The event calls attention to childhood cancer and draws families from all over the USA and Canada. September is childhood cancer awareness month, which is why this advocacy/ awareness event is held this month. 

Mattie Miracle will be hosting a booth under a tent at Curefest and each year we try to bring new materials with us. This year, we wish to highlight the Psychosocial Standards and the implementation process. So in order to educate families about the Standards, we generated a tri-fold brochure that attendees can take home with them to learn more. 

The brochure was written by us and targets families. Given our experiences I believe we were the perfect ones to write this document and help families of children with cancer understand the need for the Standards, what they are meant to do, and how families can download the Standards free of cost. The Standards are not just for professionals to use but can help families learn about the psychosocial issues that can arise during each stage of the cancer process. The Standards can alert families to findings in the literature, to help them understand they are not alone, and most importantly give them the words and research necessary to impress upon a medical care team that psychosocial support is needed.