Monday, June 15, 2015

Monday, June 15, 2015

Tonight's picture was taken in June of 2003. I took Mattie to the Reston Zoo, which has a wonderful petting zoo for children that Mattie loved! It was small, cozy, and very hands on. All perfect for Mattie. One of the animals Mattie enjoyed visiting was the sheep... it always was an adorable encounter. 


Quote of the day: One looks back with appreciation to the brilliant teachers, but with gratitude to those who touched our human feelings. The curriculum is so much necessary raw material, but warmth is the vital element for the growing plant and for the soul of the child. ~ Carl Jung

Peter and I attended the Alliance for Childhood Cancer's Action Day on Capitol Hill today. It was a full day of lobbying training for family advocates from all over the Country. 

Soon after Mattie died, Peter and I participated in this type of event in the Spring of 2010. Which is how we began to lobby in the childhood cancer space. The following year, I continued to participate and met my fellow advocate and friend, Annie. Annie lost her daughter to cancer and we immediately gravitated to each other back then. Now four years later we are still friends, we connect with each other whenever Annie comes to DC (since she lives in Southern VA) and we sat next to one another today discussing issues. 

Peter and I truly enjoyed Annie's company...... sharing thoughts, ideas, and feelings about the sessions! I snapped a photo of one of the pages in the program which clearly lists Mattie Miracle as a partner organization of the Alliance. 

Mattie Miracle sponsored the Children's Activities at the conference. Since families come from all over the Country for this training and they have their children in tow, the children need something that can occupy them for seven hours while their parents are in training. A room is set up with all sorts of arts, crafts, games, books, and videos to keep children 6-12 years of age occupied. I had an opportunity to volunteer in this room for two hours today and I have to say it was one of the positive (and of course bittersweet) experiences of the conference for me. 

The sign outside the Children's Activity Room!

This was a photo of the group during the morning, as we were united for advocacy training to learn about our call to action.... which was to ask Congress for two things: 1) support $33 billion for the National Institutes of Health (NIH), including $5.4 billion for the National Cancer Institute (NCI) 

Research funded by the NCI has played a role in every major advance related to cancer prevention, detection, and treatment, as well as contributing to breakthroughs for many other diseases. Progress for childhood cancers is even more dependent on NCI funding. In addition, the NCI provides children with cancer access to clinical trials and care at NIH-supported research hospitals. While there have been remarkable advancements in lowering mortality rates for some childhood cancers, the rates for other childhood cancers remain stubbornly unchanged and even have increased over the past ten years. Given the private investment in pediatric cancer research is extremely limited, it is imperative that the NIH and NCI continue to work for new treatments and ultimately, a cure for childhood cancers. 

2) To co-sponsor the Childhood Cancer Survivorship Treatment, Access, and Research (STAR) Act of 2015. The STAR Act would improve efforts to identify and track childhood cancer incidences, improve the quality of life for childhood cancer survivors, ensure publicly accessible expanded access policies that provide hope for patients who have run out of options, and identify opportunities to expand the research of therapeutics necessary to treat the 15,780 children diagnosed with cancer in the U.S. every year.  

My faithful readers my recall that I began working with the Alliance on their round table legislation work in the Fall of 2014. This work continued into the spring of 2015. The end result of the work is what helped to generate the STAR Act. So it very meaningful to be a part of a process of watching how this has unfolded within the cancer community from brainstorming, work groups, to now an introduced Act with sponsors. 

Representative Michael McCaul, came to address the crowd today, as one of the Star Act Sponsors. He received a standing ovation for being a champion on the Hill for childhood cancer!

The children in the activity room worked on a "thank you" sign for Representative McCaul! It is hard to see the sign based on the angle where I was standing. But trust me the banner says..... THANK YOU!










One of the highlights of my day was working in the children's activity room. I suppose that seems like a rather odd statement from a mom who lost an only child to cancer. Most likely many people would think I would be running in the other direction from small children. This room was open for seven hours, and I only worked in the room the last 2.5 hours of the day. So by the time I got to the children they were already wired, tired, and ready for the day to be over. Since I was coming into their space, I had to get to know them, their personalities, as well as understand what kind of style the other adults had in the room (since there were two others in there with me, and one who had been in there the entire seven hours!). 

Pretty early on, I noticed two young boys because of their style of playing. I was entertaining a two year old on the floor, and one of these boys came up to me and was pretending to throw a ball into my face. He made this motion several times at me. I did not move, nor did I scream, I just told him that his actions weren't appreciated. So he moved on, but I made a mental note out of it. Later on, I caught this same boy playing with the second boy, but this time they got a hold of a hand full of ballpoint pens and were poking each other with the pens. The other adults did not seem to have a problem with it, but I most definitely did. I put up with the rest of their rough housing, but poking with pens was my limit. So I finally went over to the boy who tried to hit me with a ball and I asked him what his plan was? What was going on with the pens and that I did not think this was a great game to play. He gave me some explanation, but I basically said..... NO, play with something else. They complied. Minutes later more rough housing went on and the boy who tried to hit me with a ball came running over to me to show me that his plastic name tag ripped off his lanyard ribbon. I am not sure how he thought I was going to react to that, but he seemed upset. I told him he did not do that on purpose and that there are always ways of fixing things. Of course there was no tape in the room! But I started thinking outside the box..... and took him to the sticker table. I told him to pick out two of his favorite stickers and he did. I put a sticker on each side of the hole, covered up the problem, and fixed the lanyard. He was thrilled, but then I saw his name. It was Matthew. I told him, he had a beautiful name, and between fixing his name tag and telling him I like his name, I made an instant friend. That was my first buddy.

My second buddy was a bit more complicated. My second buddy, was playing with Matthew and two older girls in the room. They were playing some sort of defending a castle game underneath the tables in the room. The tables served as the castle. The problem was some kids were allowed in the castle and my second buddy wasn't allowed in, which caused hurt feelings. In addition to that, the way that the children defended the castle seemed to scare and bother my buddy and as he said "it was too violent." I had to break up their arguments several times, but the last straw was when I found this little fellow sitting silent and ready to break down in tears. I knew that sign very well. I knew it well because this child reminded me greatly of Mattie. It was his nuances, how he expressed himself, his insights about others, and his sensitivities. I could actually predict what was going to happen before it would happen, and that is only because it was as if I lived the scene before with Mattie. It was a very surreal scenario. In any case, as he was getting upset, I caught him. I said to him, to stop and use his words and tell me what was going on. So he proceeded to tell me, and it involved the girl under the table. So I had her listen to him as well, since what he was saying was making perfect sense. He wanted to play, but he did not want to play so "violently (his words)". She kept telling him that was the nature of the game, because it was a war game, but I tried reasoning with her especially since she was twice his age and he clearly looked up to her and wanted to play with her. I was looking for her to come up with other solutions or a compromise. But she wouldn't. Which only further frustrated my buddy. At which point, he literally bolted from the children's activity room into the hallway of the hotel. None of the other adults were mobilizing forces, but I ran after him. I got a hold of him and asked him where he was going, MIND YOU HE WAS ONLY 6! He told me he was going to get on the elevator and go to his hotel room. Of course he did not have a key to get into the room, so that wasn't realistic. He was just upset.

One of the other adults who had been in the room all day with him, suggested I bring him back to his parents who were in training in the room next door. But I frankly did not think that was a good idea given the state he was in, and instead decided to try to talk with him and work it out. I was able to convince him to come back into the Children's Activity room, to calm down, and as we continued to talk, I told him that I understood he was upset, frustrated at his friends, but at the same time I was impressed with him. Instead of pushing them, fighting, or saying bad words, he was able to use his words and talk through his thoughts and feelings with them and with me. I said I was proud of him and that he gets a high five. Which he liked and smiled. With that, Matthew came over and I asked Matthew and my second buddy, Scott, whether they would like to play together? Which is what eventually happened. 

At the end of the day when parents came to pick their children up, I want you to know that both Matthew and Scott, out of their own will both came up to me to thank me for being a part of their afternoon with them. Matthew even shook my hand and wished me a good rest of the day. Naturally this experience made me very happy because I enjoy nurturing children, but on the other hand it also made me deeply sad because the reason why I have the skills that I developed was because I had Mattie. Mattie was my best teacher and though my skills and insights remain, his absence continues to leave a very large chasm in my life that other things don't fill.  

Sunday, June 14, 2015

Sunday, June 14, 2015

Tonight's picture was taken in June of 2003. Mattie was a year old and we took him to Great Falls that weekend. Mattie loved traveling around on Peter's back. In fact, I think this is how he spent the first two years of his life, if he wasn't in my arms. Mattie loved being up high and having the bird's eye view. But he most definitely did not like the feeling of being in a stroller or strapped into his car seat. He needed his feet dangling and his hands and arms free.  


Quote of the day: When the Sun of compassion arises, darkness evaporates and the singing birds come from nowhere. ~ Amit Ray


We seem to have two extremes in Washington, DC.... cold and hot! We had no in between this year and we certainly did not have a spring. We are having the hottest June on the record, and it feels more like July. The heat and humidity are intense and I practically can't keep up with keeping my flowers watered and looking healthy. They are constantly wilting! However in the midst of these temperatures, our birds are fluttering about and singing. I do not feed the birds in the spring and summer, but my neighbor has decided he wants to continue my tradition in the warm weather months. So the birds are not complaining. They are used to coming to my feeders, so we have a lot of activity about and we recently bought a bird bath, which they are now taking to like a duck to water! All I can say is prior to us feeding the birds, rarely did we hear birds singing or even hear birds at any time of day. Other than a pigeon. But we no longer have pigeons, thankfully, and have moved onto sparrows, blue jays, cardinals, grackles, and even red and gold finches! 

It is hard to believe after the year we have had with Mattie Miracle that there is still more ahead of us this summer. Tomorrow we are involved in the Alliance for Childhood Cancer's Action Days and then later in July, we are hosting a symposium at an International conference in DC, along with having an exhibit table at that conference. I will be working six hours tomorrow at the Action Days. Action Days, provide a format for over 300 family advocates around the Country to come to DC to be trained on childhood cancer policy and lobbying issues. These advocates get policy training for a full day, and then the next day they visit Capitol Hill and talk with staffers about these issues as well as tell their story and experiences with childhood cancer. This helps staffers not only see a concerted and unified effort, but also understand that these issues are very real for our community. Mattie Miracle began an associate member of the Alliance for Childhood Cancer this spring and is a proud sponsor of Action Days this year. For more information about Action Days, go to:

http://www.allianceforchildhoodcancer.org/join-us/action-days-2015.html

Saturday, June 13, 2015

Saturday, June 13, 2015

Tonight's picture was taken in December of 2007. We took Mattie to Brookside Gardens in Wheaton, Maryland to see their Holiday Lights display. Their lights display is like NO OTHER! Mainly because you have to park, get our of your car, and walk through the winter wonderland of gardens. The gardens are all aglow with lights. Some of the displays are animated and the whole experience is truly magical. I have only done this ONCE, but I still remember it quite vividly. After our walk, we then went inside the visitors center to warm up with cookies and hot chocolate (of course Mattie wasn't touching hot chocolate with a ten foot pole!). Inside the visitors center is this adorable frog statue and we got Mattie to pose with this cutie. It is one of my favorite photos!

Quote of the day: The many great gardens of the world, of literature and poetry, of painting and music, of religion and architecture, all make the point as clear as possible: The soul cannot thrive in the absence of a garden. If you don't want paradise, you are not human; and if you are not human, you don't have a soul. ~ Thomas More

Brookside Gardens is Montgomery County's incomparable, award-winning 50-acre public display garden situated within Wheaton Regional Park. Included in the gardens are several distinct areas: Aquatic Garden, Azalea Garden, Butterfly Garden, Children's Garden, Rose Garden, Japanese Style Garden, Trial Garden, Rain Garden and the Woodland Walk. The Formal Gardens areas include a Perennial Garden, Yew Garden, the Maple Terrace, and Fragrance Garden. Brookside Gardens also feature two conservatories for year-round enjoyment.

What is hard to believe though is that visiting this park is FREE. It is a very serene, tranquil, and a beautiful spot. We haven't visited this park for years, but it is a place we used to take Mattie to at all times of the year. 

The park has been undergoing some renovations, but I can safely say the last time I came to the park these wonderful metal butterfly sculptures did not exist. I just love them! They caught my immediate attention at the entrance. 

The beauty of gladiolas. 

One of the most popular gardens to visit at the park is the rose garden. This garden is filled with color, fragrance, water elements, benches to sit down and reflect, and people snapping all sorts of photographs. 

My camera does not do these Tahitian roses justice, because these were a vibrant orange. Practically bursting out at you and there were so many of them all in bloom. 

Throughout the garden there were fountains. This was one of them.... the white stuff at the bottom was foam. 

The rose garden

This rose was not only an amazing color but its fragrance was absolutely intoxicating.

To me, the rose garden was the ideal place to sit and reflect. Surrounded by birds, beautiful sights, sounds of water, and the smell of roses.

Walking through the rose garden, you next reach the perennial garden, which is another special place. Again filled with special water elements. 

The colors of plants within the perennial garden seemed like something you would find on a canvas. 

There was even a cardinal

hanging out on display!

This space is called the Fragrance Garden. To us it was a bit of a misnomer, but that is only because we missed most of the gardenias and magnolias blooming. However, I can imagine how this space must be with these flowers in bloom. However what I do recall about this space is the fountain in the middle and being here with Mattie years ago! Mattie would not have been interested in the plants, but the fountain intrigued him and I remember checking it out and spending time by it with him.  

I also remember seeing a similar sight with Mattie years ago! We loved it back then, as I loved it today. A mama goose with her goslings. Mattie always loved seeing mother animals with their young and eagerly pointed such sightings out to me. 

There is a man made lake in the heart of the Gardens. At the entrance to the lake, is this stone, which reads.....

Linger here and reflect on those lost to violence. Hope for a more peaceful world. Seek a reverence for life among all people. 

[This is a memorial site for those who lost their lives during the sniper attack in DC in 2002.] 

Near the stone above lies this second stone, which reads:

During the summer and fall in 2002 the senseless violence of two men caused the deaths of 13 innocent people. Although the tragedies occurred in several parts of the country sniper fire in the Washington, DC area abruptly ended the lives of 10 men and women. The stones here engraved with the names of those 10, bear witness to the fact that they lived and worked among us - and they are not forgotten. Their lives, each unique but all too short are forever part of our collective story. This place also honors the kindness of so many who supported their families and whose active compassion still strengths the bonds of community. 

The third stone lists the ten names of the local victims of the sniper attacks who are remembered at this site. 

The stones overlook this beautiful lake.

The lake is filled with life..... goslings, geese, turtles, frogs, and fish. 

As Peter was doing his goose impression, this fellow was honking right back at Peter! They were communicating. I caught it on camera! 

I entitle this "Turtle and frog!" You can clearly see the turtle on the left, but look closely.... the green frog is in the lower right hand corner. 

Near the lake is a labyrinth. 
A labyrinth is a silent walking mediation, which is different from a maze. A maze is designed to challenge the mind with choices and dead ends. Labyrinths have one clear winding path leading the walker from the edge to the center. 

Recognize Froggy from up above? Well he no longer sits on a big bench, so you can't really sit beside him and touch him, but you get the gist of the before and after photo tonight! To me this frog doesn't look the same, but Peter assures me it is the same frog. I propped my Mattie Miracle visor on top of Froggy, and frankly I think he looks good in orange. 

Friday, June 12, 2015

Friday, June 12, 2015

Tonight's picture was taken on April 8, 2002. Mattie was literally four days old and we were taking him home from the hospital. When you look at him in this photo, he looks like he was sleeping and out cold, but notice his left hand was up and touching his head and hat. Mattie was never truly out cold! Learning to sleep came much later in his life. 


Quote of the day: But in a home where grief is fresh and patience has long worn thin, making it through another day is often heroic in itself. ~  Melanie Bennett



I had a seven hour long licensure board meeting today. We worked intensely as a group for this entire time, had to listen to people who came to talk with us, and reviewed countless applications. On top of all of this we went without eating this whole time, which is a recipe for disaster. In any case, between some of the dynamics at the meeting and the week that I had, I was just ready to snap a few heads off. There are certain behaviors in people that set me off and the top two are insensitive treatment of me and the other is trying to regulate my thoughts and how I act. If you try to combine the two, the reaction out of me will be volatile, and this is where I was at today in the meeting. I also do not care for people who want things to be swept under the rug in order for everything to be calm, peaceful, and happy. Especially if I see an injustice going on all around me. I tend to speak up for change and for those who can't speak up for themselves. In any case, after a full seven hours of tension and a week of worry over my scan, I am virtually spent on all levels.... so I am signing off for today. 

Thursday, June 11, 2015

Thursday, June 11, 2015

Tonight's picture was taken on April 4, 2002 at 1am... the moment Mattie was born. Peter clearly snapped this photo and in typical Mattie style, he had one eye open and was engaged with the world. Even right out of the womb! This was Mattie's theme..... he never wanted to miss out on anything, and he always absorbed everything and everyone around him!



Quote of the day: When people talk, listen completely. Most people never listen. ~ Ernest Hemingway


Hemingway's quote is most beautiful and really very telling. Sometimes when one listens, one needs to listen to more than the words that are being communicated to fully get the picture of what is being expressed. I think yesterday's episode at the hospital was case in point. I could clearly express my anxiety about having a scan, and technically the person administering the scan was "listening" but there was no true acknowledgment or processing of the content or feelings of what I was expressing. So the art of listening is more than the mere physical nature of processing noises. Listening is truly an art and when done effectively is VERY tiring! Try listening to what someone is saying to you even for ten minutes. Think about the content and the underlying feelings expressed, stay engaged and don't allow your mind to wander. It isn't easy, especially in our fast paced world in which we have ten thousand things pulling at us and demanding our attention. 

After yesterday's ordeal, and it was an ordeal by every stretch of the imagination, I needed to talk about it after it was over. Naturally I shared my concerned with the hospital administration, which was step one, and I wrote on the blog last night, but immediately after it was over, I got in the car and called my mom. I must have talked non-stop for an hour. That is how anxiety provoking the scan and experience was and for me (and remember I am NOT a phone person!). Through Mattie's crises, I developed two modes of operating.... the very quiet mode of getting through things and then the very hyper mode of letting someone have it. Both modes serve great purposes and over time I learned which mode I needed to be in to survive. However, in all reality I think if Mattie were working with that tech yesterday, I would have pulled him from the room and reported her much sooner. But I wanted the data and the test to be over with. Talking with my mom for an hour re-stabilized me yesterday, because I can feel sometimes when anxiety just takes over and then it can be hard to function. Again, this is a direct after effect (and a long-term one) of Mattie's cancer! As my call with my mom ended, Peter arrived home from his business trip and then I shared the ordeal with him. 

Today, I spoke to Sylvia, who is the Executive Director of Radiology Services at Georgetown. She actually read last night's blog, shared my posting with the rest of radiology, as well as the radiology leadership team. I walked her through everything that happened from dealing with the administrative staff, to my issues with the tech. Sylvia was deeply apologetic, understood my concerns, and expressed that she was going to take my feedback to the department to improve patient care. Which of course is important to me, since I wouldn't want another person to experience what I went through yesterday on any level. 

Wednesday, June 10, 2015

Wednesday, June 10, 2015

Tonight's picture was taken in May of 2002. Mattie was just a month old and all three of us were in a dazed state back then, with no sleep and trying to adjust to Mattie's schedule and needs. Thankfully Mattie was born in the spring, because he responded to fresh air and being outside. It seemed to calm Mattie down and this remained true throughout his life. 



Quote of the day: The living owe it to those who no longer can speak to tell their story for them. ~ Czesław Miłosz


Last Tuesday, I went to my urologist for a routine exam. During my routine exam, she stated that she thought one of my pelvic masses was larger. If you haven't been following my story, in a nutshell I was given the scare of a lifetime in February of 2012, when I went for a CT scan to assess my bladder. Instead of bladder issues, the CT results revealed that I had a large mass in my cervix, and better yet the radiologist at the time wrote that it was suggestive of a very aggressive form of cancer. Having just lost Mattie to cancer three years before that, this news sent Peter and me reeling. In 2012-2013, I was literally scanned every month, mainly because the mass is not in a location that can be biopsied to assess if it is cancerous. Each month, was like living hell not knowing whether the mass grew or not or what the next steps would be. Over time, I learned that I have several masses and they are not cancerous. Thankfully. Mind you I am giving you the simple version of this nightmare.

Visions of this nightmare resurfaced last Tuesday for me, when I had a physical exam and my urologist told me she felt a change and suggested I get a follow up scan. Naturally I immediately contacted my oncologist who moved to Baltimore, but who in my opinion is the ONLY VOICE OF REASON throughout my three year ordeal. She told me to take a deep breath and that sometimes there are stable changes. Meaning that even benign things can change shape and grow. But what I like very much about this doctor is I know she is there for me and responds with good counsel and reason. Which helps!

Fast forward to today's nightmare. I decided to have my transvaginal sonogram done at Georgetown Hospital. I chose Georgetown because all of my previous MRI's were done there. In hand with me today, I brought two discs with my previous sonogram results that I had taken at other facilities so that these scans could be compared with today's images. My goal was to house ALL my scans on this pelvic issue in one institution, and I chose Georgetown. However, I am now rethinking that notion. Before Mattie developed cancer, all my care was done at Virginia Hospital Center (VHC) and overall, that tends to be an institution I align with from a professional standpoint. VHC is very customer oriented, staff and healthcare professionals go out of their way to answer questions, to assist patients, and to make the whole facility experience as user friendly as possible. If one needs to be in a hospital, why not be in a place that wants to make it easier for you and respects you?

I went to today's appointment alone. Peter was out of town on a business trip. I was contemplating contacting Linda, Mattie's child life specialist, but I figured at some point I am going to have to manage these scans by myself at Georgetown. Mind you I can deal with them on my own at other hospitals (I don't like them) but at Georgetown it seems ten times worse. I had to get to the Hospital thirty minutes before the scan and fill out paperwork. That was problem number one. I had to wait in the waiting area, this is an area where we waited with Mattie on numerous occasions. Waiting there for a couple of minutes was fine, but as the minutes wore on, my anxiety level started rising and my memories of Mattie in this space rose. Meanwhile, as I was thinking about all of our past experiences swirling in my head, the staff sitting at the desk behind me were talking about all sorts of day to day stuff in their lives and casual conversation. I suppose that is normal, but in my life sitting and waiting for a scan, in an area which reminds me of osteosarcoma.... their normal conversation and laughter were almost irritating. If there were people around me truly wondering whether they were gravely ill, then from their perspective I would have viewed this chatter as absolutely insensitive. 

Once the tech came out to get me and walk me back to the sonogram room, I immediately knew there was going to be an issue. The issue was the sonogram room was the same room that I was in when Mattie was given his last sonogram and found that his cancer spread to his stomach and lungs (ie, that his cancer was terminal). I told the tech this by the way and she did not ask me if I was okay remaining in this room or if I needed to go to another room. 

The next issue was the tech wanted to just proceed with the exam rather than take a history. This maybe Georgetown's policy, but I have been spoiled by the last two facilities I went to, which both asked for some history and did some talking with me first before jumping into this very personally invasive test. I admit I came into this scan anxious, but the tech's personality and demeanor only fed the fire, rather than helped ease my stress. Once the scan began, she did not talk to me throughout the process, so I had no idea what she was doing (inside of me!) or how long she was going to be. Again, not something I was used to! If all of this wasn't bad enough, the final straw was once the scan was over, she suggested I not get dressed because she had to check with the radiologist to see if more images were necessary. She was also going to have the radiologist upload my scans that I brought in on discs to their hospital system. So I knew I had to wait, but the waiting seemed endless. At least ten minutes. As the minutes wore on, being anxious, I started assuming that something was found on my scan! By the time the tech came in, I literally wanted to bounce off the table in fear. But by that point she said I was set and she was ready to dismiss me and move onto her next patient. 

Fine for her, for me, I was a mess. I had questions about when I would get results, and her answer was..... my Georgetown doctor would get results tomorrow. I told her I did not have a Georgetown doctor but I still needed my doctors to get the results before the weekend. Her only response back was.... 'your Georgetown doctor will get the results tomorrow!' As if she did not hear what I just said. I felt like she couldn't wait to deposit me in the medical records library waiting area, until my discs could be retrieved. While I waited there, I asked one of the library people the name of my tech. Since by the way the tech herself NEVER TOLD ME HER name! Once I found out the tech's name, I immediately picked up my phone! I learned that skill from my days with Mattie!

I called the VP of Patient Advocacy. Fortunately Nicole answered the phone and I explained to her what transpired. But while talking to Nicole, everyone else in the Medical Records department also overheard my conversation! They too were mobilizing forces, and the manager of the radiology department came to talk to me as well as the actual radiologist (** Make a NOTE: at any time you go for a scan at any hospital, you can ALWAYS ask to speak to the radiologist!!! That is your patient right!!!) who was reading my scans (my scans look stable, I believe upon initial reading, and will know more soon, but I am thankful to the radiologist at least!). I will spare you more details, other than Nicole was the right person to contact, because she has put me in touch with the head of the radiology department. So I can share my story and concerns with her. But my question is what happens to patients who aren't vocal, who do not know they can speak up and advocate for themselves? No one should have to experience what I did today with such an insensitive tech who clearly maybe competent in her job, but is missing the art of dialoguing and truly listening to her patients.  There has to be more to medicine than just the numbers and facts. People are NOT just things and machines. If you don't listen to what we are saying and you aren't reading our emotional signs, you are missing 85% of what is in front of you and I assure you, you ARE doing harm!

I joke all the time about this, but I do think all patients need access to a child life specialist. I certainly could have used Linda today. I know if Linda were with me, things would have gone much better. But Linda can't be everywhere! So how do we affect change??? It seems to me that it is a no brainer.... that some patients come to the hospital with previous cancer experiences and ALL hospital staff and healthcare professionals need to be sensitive, trained, and skilled at knowing how to manage and work with patients like myself. 

Tuesday, June 9, 2015

Tuesday, June 9, 2015 -- Mattie died 300 weeks ago today.

Tonight's picture was taken in May of 2003. Mattie was one year old and really beginning to toddle around. He still needed to hold a hand for support, but he was getting the hang out of that walking thing. One of the things Mattie absolutely LOVED, even at an early age was PUDDLES. He loved walking though them, which was what we were doing outside that afternoon. Walking through puddles and yet grabbing at Peter and the camera at the same time!


Quote of the day: Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love.  The only cure for grief is to grieve. ~  Earl Grollman


I began my day by opening my email and learning that Dr. Robert Arceci died in a tragic hit and run accident. Some of you reading this maybe asking yourselves..... who is Dr. Arceci? After all, I have never mentioned him on this blog, he is not associated with Mattie's care, nor my care, and he does not live or work in the DC area. Dr. Arceci was an International authority on childhood cancer and was the hematology/oncology division chief at Phoenix Children's Hospital. Again, unfortunately I must admit I too did not know him in that capacity. How I came to know of Dr. Arceci was when Mattie Miracle decided to take on the funding of a large publication with our psychosocial oncology research team this Fall through the Journal, Pediatric Blood & Cancer. For you see, Dr. Arceci was the editor-in-chief of this journal. A journal that is considered the flagship journal of the American Society of Pediatric Hematology/Oncology. Though I never met Dr. Arceci, I feel deeply grateful that he understood the importance, as a physician, for the need for psychosocial care and the relevance of publishing our standards in a journal that the medical community would access. To me the loss of Dr. Arceci is a great tragedy for his family and the entire childhood cancer community. To read more about Dr. Arceci's life and accident go to:

Phoenix Doctor Killed in Crash was Renowned Child Cancer Expert:
http://www.azcentral.com/story/news/local/phoenix/2015/06/09/phoenix-physician-dies-fatal-crash-abrk/28705287/

The bright spot and highlight of my day was receiving flowers. My good friend and colleague, Denise, sent this lovely bouquet. She wanted me to know she was thinking of me in support of tomorrow, when I get my scan. Denise knows my love for sunflowers, but particularly what they mean to me. When Mattie was battling cancer, people just started to bring me sunflowers when I was home between his treatments. I have to admit I did not request sunflowers and at the time they were not my favorite flower. However, there is something very happy and strong about a sunflower. A sunflower has a face that seems to be smiling at you and its stalk has great strength. Over time, the sunflower symbolized caring, compassion, community, and unity to me. Denise told me that the florist had ONE LONE sunflower left in his store today, which naturally went to my arrangement. So that alone seems meaningful..... that one flower was meant for me. A Mattie sign, and the day before a scan, I take all the signs I can get. 

While out running chores today in Georgetown, I passed this "Tuxedo Puss." This cat came right up to me, meowed his head off and wanted attention. His fur looked in good shape and he looked well fed, but for a minute... I was ready to grab him and take him home. The only thing that stopped him was I knew someone would be very upset to be without a kitty tonight! But this cutie in my opinion should not be walking the streets of Georgetown, in and among the cars. 

Monday, June 8, 2015

Monday, June 8, 2015

Tonight's picture was taken in May of 2003, at my doctoral degree graduation party to be exact. Next to Mattie and me was my dissertation chair. We were both jumping up and down and doing whatever it took to get Mattie to smile for the camera. It worked because we got a smile out of him. 



Quote of the day: From caring comes courage. ~ Lao Tzu


Today I went to our Mattie Miracle mailbox because I was alerted with an email that we had mail in our PO box. So I figured perhaps we had one or two things in there. To my surprise, we had several donations awaiting my arrival. Many of which caught me off guard. Which is always wonderful, especially post-Walk. 

One donation was sent to us by a fifth grader from Mattie's school. She actually hand wrote a note to us. How many people actually take the time to write a letter these days, much less a child? I was actually quite stunned and impressed. Here is what the card said (to protect the child's identity, I am not including her name):


Dear Mrs. and Mr. Brown, Please accept this check for your Foundation. My name is ___________. I'm a fifth grader at St. Stephen's and St. Agnes School. I am also a girl scout. I was truly inspired by what you do and how much time, care and effort you put into the Foundation. I was unable to make it to the Walk this year and I was very disappointed so I decided that I wanted to do something to help. My family had a yard sale one day and I thought.... Oh, maybe I could sell donuts and support Mattie. We raised $52 just selling donuts and my parents and I each made a donation. I hope this can help support the Foundation. Thanks. Love, ________________


I think it is challenging to present to young children, the topic of childhood cancer. It is hard to know how much to share, because you want to give them some facts and parts of the reality, but at the same time not induce fear, which can easily happen. So given that I am not used to presenting to this young age group I air on the side of caution and over simplifying things. Yet when I receive a note like the one I did today, I see that the presentation that I did in March to the Girl Scouts at Mattie's School clearly got through to this young girl. A girl I did not know, and she and her family did not know Mattie either. So I view this as a success. 

Sunday, June 7, 2015

Sunday, June 7, 2015

Tonight's photos were taken ON THE SAME DAY AND TIME, in November of 2002. Mattie was seven months old. The funny part about this photo series was it showed that Mattie and Patches were never too far apart from each other. Which was interesting! Typically cats escape and want their privacy, space, seclusion, and quiet time. 

Certainly Patches needed that too, but for the most part she wanted to be right in the mix of things and wanted to observe Mattie. Mattie, of course was intrigued by Patches. So while he was on the floor playing, he was staring up at the couch at her and she was staring right back down at him! They were a riot together!!!




Quote of the day: Compassion automatically invites you to relate with people because you no longer regard people as a drain on your energy. ~ Chogyam Trungpa


Peter and I went out for a drive and shopping today. In one of the stores we went shopping at I came across an older adult who was working in the store. She acknowledged both Peter and I, but decided to engage me in conversation. Mind you, I did not start talking to her. She approached me.  She began by telling me that her foot hurt. So naturally, I responded empathetically, which inspired her to continue talking. Needless to say, she spoke to me for 20 minutes. I heard about her vein surgery, her marriage, the fact that she was married to a marine and stationed in Japan, and that she was a school teacher both abroad and in Virginia. Peter has a running joke with me, because he says if someone has an issue and I am out in public, they will immediately hone into me. I suppose Peter is right! This has happened to me all my life and I really wonder what intrigues others to talk to me? Does it have to do with Trungpa's quote tonight regarding compassion? I don't have an answer, but I do know that I have learned an awful lot about people over the years, and some of this knowledge wasn't even through graduate school and in clinical training. 

Recently, Peter shared with me a piece of paper he found in our dining room cabinet. He was cleaning a drawer out and literally just found it! It was a list of table rules he wrote down to guide Mattie's behavior. I remember Peter going over and over this list with Mattie when he was alive. Peter worked hard with Mattie to teach him etiquette and appropriate table manners. Which was no easy feat since Mattie was not motivated by food. 

While we were shopping, one of the stores had this framed stitching of table rules. I almost couldn't get over what I was seeing or reading! Mainly because they almost mimicked the rules Peter set forth for Mattie. This stitching says.........

1. Sit up straight
2. Chew with your mouth closed
3. Say please and thank you
4. Take small bites
5. Don't play with your food
6. Have pleasant conversation
7. Keep your elbows off the table
8. The napkins goes on your lap not under your chin
9. Eat your vegetables
10. Always give thanks

As we are now in June, our "Father's Day Lilies" are beginning to bloom. We planted these lilies years ago, but they are always timed around Father's Day. Or at least that is what Mattie and I used to say and call them. It is hard to believe that we still have the lilies and yet no Mattie with us.