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.