Saturday, May 3, 2014

Saturday, May 3, 2014

Tonight's picture was taken in August of 2008. At that point Mattie had just begun chemotherapy and still had some hair. Sitting next to Mattie was his preschool teacher, Margaret. Margaret is a special person to our whole family. She was the first teacher who truly understood and appreciated Mattie and it was within Margaret's classroom that Mattie developed not only as a person but also learned the art of being a friend. Mattie made his first true friendship, with his buddy Zachary, in Margaret's classroom. You have heard of love at first sight, well with Mattie and Zachary, it was friendship at first sight! The beauty of all of this is that as Mattie gained a teacher, I also developed a close friend. In a way, Margaret and I related to each other immediately not unlike Mattie and Zachary, and now almost ten years later this feeling remains. 

Quote or in this case Poem of the day:

These are the hands of your best friend, young and strong and full of love,

that hold yours on your wedding day. These are the hands that will work along side yours as you build your future together. These are the hands that will passionately love you and care for you throughout the years. These are the hands that will hold you when fear or grief torments your mind and with the slightest touch, will comfort you like no other. These are the hands that will give you strength when you struggle, and support and encouragement to chase down your dreams. These are the hands that will tenderly hold your children, and help keep your family together as one. These are the hands that will, countless times, wipe the tears from your eyes, tears of sorrow, and tears of joy. And lastly, these are the hands that even when wrinkled with age, will still be reaching for yours,

still giving you the same unspoken tenderness with just a touch---- a touch from these hands. ~ Author Unknown

I had the opportunity to visit my friend Margaret today. The person photographed above. Unfortunately Margaret no longer looks the way she does in that photo, because she is battling a horrific neurological disease. I do not talk about Margaret on this blog because this is her story, not mine, and out of respect for her wishes, I am not saying much more. Yet it is very challenging for me to see another close friend of mine succumb to another horrible disease, trapped within her own body. The cornerstone of our relationship used to be talking and relating to each other, and now this is no longer possible. Thanks to technology, I had the opportunity to watch Margaret's niece's wedding live today through Skype with her! The wedding was in Upstate New York and yet we were watching it virtually. 

I must admit I like watching weddings now as much as I like attending funerals. I am not sure why. But I do not care for weddings anymore. Perhaps to me they signify something happy, but happiness that has the potential to be clouded with such potential loss. Naturally not every marriage will lead to a child having cancer, but yet given the fact that two classrooms a day are being diagnosed in the US with cancer, I am not the only one! So to me, weddings symbolize the start of the unknown, the calm before the storm. 

Today's wedding was particularly symbolic because it was held outside literally minutes before an ominous rain storm. You could see the clouds and dark sky rolling in! I would have to say the most meaningful part of the ceremony was when the aunt of the bride read the poem I posted tonight called "These Hands." I have never heard of this poem before. She warned us before reading it that even saying the words made her cry! I honestly had no idea what she possibly could be sharing with us that would evoke such emotion. Until she started to talk! 

I have to imagine the depths of this poem are lost on the twentysomethings in the crowd, but those of us who are a bit older, who have experienced illness, tragedy, crisis, and loss, get this poem to its core. Surviving any of these things long term requires a solid spouse by our side. These are "the hands" you want with you always if you should be lucky enough to find the right ones to begin with. I think why this poem impacted me and most likely Margaret so deeply is because we have seen our spouses tested to the limits and know they can handle the happiness, the joy, but also the sadness, the crisis, the devastation, and yet they remain steadfast and by our sides. Seems to me the ultimate testament of a relationship and a marriage.  

Friday, May 2, 2014

Friday, May 2, 2014

Tonight's picture was taken on July 23, 2009. That was Mattie's one year anniversary of his cancer diagnosis. He was in clinic that day sandwiched between Peter and his buddy Brandon. In Brandon's hand was a boat they made. It was a summer of boat races within the clinic sink. If I am not mistaken, this was the day Peter remembers in which all of Jocelyn's sisters got together for the famous boat racing competition! I have now answered my own question about whether I was there or not! The beauty of the blog, or I should say, thank goodness for the Blog. Brandon and Jocelyn brought Mattie much happiness, as only good friends can do. 


Quote of the day: Memory is a way of holding on to the things you love, the things you are, the things you never want to lose. ~ Kevin Arnold

Peter and I returned home to Washington, DC early this afternoon. Peter had to get back to work! I can't get over how much colder it was in Ohio in comparison to DC. I thought DC was grey and cold when we left on Wednesday, but Columbus gave me a reality check. The flight home was also bumpy and at one point we hit an air pocket and one of the flight attendants went flying to the floor, right next to my lap. I asked him if he was okay and he joked with a "hello, how are you?!" Glad he could laugh that off, because if I had his job, i would have found the closest seat and strapped myself in until the flight landed on the ground. Meanwhile the woman in front of me had some sort of spray bottle and every two minutes she was misting herself like a house plant. This mist had a minty smell, like a strong candy cane! Typically that isn't a bad smell, but in concentration every two minutes, it smelled toxic! Fortunately she had no one sitting directly next to her because my heart would have gone out to that person. I was behind her and I wanted to confiscate the spray bottle! Unfortunately for me, she was clever enough to keep this bottle within the TSA approved 3 ounce bottle size! I get the fact that we all have rituals that make us feel calm or safe within an airplane, but this one really took the cake! Her calmness, produced agitation in me every time she misted herself! I had Peter snap this photo of us landing in DC, to me the Potomac River looking like a pool of Chocolate!

While Peter and I were at the Columbus airport today we made two significant observations about our trip. Mind you we were only gone for two days. Columbus is unlike any city I have ever been to. I suppose I am used to cities on the East and West coasts. Basically large cities, but in addition to their size, their demeanor also comes into question. They are frenetic. People are everywhere, there is a level of busyness, a density, a congestion, a lack of peacefulness and personal space! I am not saying I like that, I am just saying I am conditioned to it! When you walk or look at the streets of Columbus, the first thing we as East coasters would say is, "where are ALL the people?" To us the streets look desolate even during the middle of a work day! But that is the thing!!! They aren't really desolate, there is just more SPACE! There isn't the same congestion, the same frenzy, and chaos. This same lovely pace carried over into the airport of ALL places! Can you believe this? In the Washington, DC area, and all major East coast cities, our airports are zoos! Packed with people. Not Columbus. The hallways and corridors are wide, people wait their turn and are courteous. It was a night and day difference. As soon as I stepped off the plane into Washington National airport, it was like walking into a sea of people, congestion as far as the eye could see. I enjoyed that aspect of Columbus a great deal and as I said to Peter, you have to leave DC to explore other states to see just how different our region of the Country is.

The other observation had nothing to do with Ohio, but with the Association of Pediatric Hematology Oncology Educational Specialists (APHOES). APHOES is the organization that invited us to give a keynote address at their conference. We spent a good portion of the day yesterday with the executive leadership of the association, attended over 5 sessions, and was even invited out to dinner by many of the key players of the organization. That really meant a lot to us and also said a lot to me about how inclusive a group this is, after all, attending conferences is not something NEW to me. I have been doing this all my professional life and can size up groups and people very quickly. This group really was collaborative, embraced and supported what we are doing, and is inspired to find ways for us to work together. But here is the observation, the observation is at the core these professionals are all educators. I have been around educators all my life, since my mom was a teacher. Educators are professionals I probably most align with. Educators speak a certain language, they have multiple interests, can converse on multiple topics, are usually engaging, and if all else fails are passionate about who they are teaching and serving. This was most definitely the case with all of the individuals we interacted with yesterday and this kind of interaction can be very stimulating, as I know it was for both Peter and me. 

Thursday, May 1, 2014

Thursday, May 1, 2014

Tonight's picture was taken on July 20, 2009. At this point in time we did not know Mattie's cancer was terminal. Literally within weeks we were going to find out that news. But ignorance was bliss and despite being in pain and not eating much, we all kept pushing Mattie in hopes that he would bounce back and make progress with his rehabilitation process. The notion that we thought Mattie was going to walk again and attend school in the Fall of 2009 shows just how absurd we all were! I mean his whole care team, not just us.... his parents! As you can see, Mattie put a lot of effort into his physical therapy sessions. The lady in purple sitting with her back to us, was Anna, Mattie's physical therapist. Anna was an amazing therapist and did wonders for Mattie and me! Sitting next to Mattie was a physical therapy intern. However, when you stop to think about Mattie's level of disease progression and intense bone and organ pain, it was remarkable that he had the energy to do what I captured here in this photo. 

Quote of the day: It is not what we get. But who we become, what we contribute… that gives meaning to our lives. ~ Tony Robbins

Today was an amazing day for the Foundation filled with incredible feedback. Our keynote presentation went splendidly. Sometimes it is hard to know whether you have delivered upon what an organization has asked of you, but in this particular case, I can safely say we did this and then some! It was clear the audience was thrilled to hear about our national vision of a psychosocial standard of care and in fact they were THANKING us! They feel that such a standard will help to justify their jobs and their positions within a hospital setting. 

The audience was comprised of over 110 individuals, representing a range of professions such as hospital education specialists, child life specialists, psychologists, nurses, and social workers. After our presentation, Peter and I attended the rest of today's conference and participated in five sessions and also presented a scientific poster of our standards project during lunch time. We networked with many wonderful professionals and even met a key player at the Ohio Department of Health, who wants us to come back to Ohio to participate in her June meeting. Apparently Ohio is opening up their state plan to include psychosocial care and wants to consult with us on how we have structured our care project. We were thrilled to hear this, not to mention to be offered other national speaking engagements by other organizations. 

I had the wonderful opportunity today to watch Peter present with me. As I told him today, he was "on fire!" Meaning he did a great job! Typically Peter and I tag team as we talk about the Foundation. However, with this particular presentation, the organization wanted a component of our presentation to be strategic and business in nature. They wanted to know how specifically one goes about developing a strategy to create a national plan/project. This is where Peter's consulting and MBA skills came shining through. I can easily talk about the Foundation, its history, and our standard of care project, but Peter is MUCH better at talking about next steps and the vision as to where this plan is going. Which is why we present so well together. You need both of our visions for the Foundation to be successful and I think that came shining through today. In addition, our goal was to also bring Mattie alive for the audience and to let them know we have LIVED the cancer experience and this experience guides our Foundation's goals, mission, and objectives!

At times Peter and I landed up talking with LOTS of different people. We divided and conquered. Peter shared a story with me about a woman who approached him and told him that she lost her son to cancer. After his death, she decided to become a hospital educator, because she felt compelled to DO something, and to provide services that were lacking in her son's care! Both she and Peter concluded that they both do what they do in order to stay connected to their sons. Both agreed it was a labor of love and weren't doing it for the MONEY! Naturally because in our case, Peter and I take in NO salary! But Peter's observation was stellar...... the Foundation work gives him/me something to continue to grow and nurture. A proxy I suppose for Mattie. 

Peter snapped a photo of me by our scientific poster. This poster was developed by our core research team for a presentation that was given in Texas in October of 2013. This poster is a beautiful visual summary of our entire National Standard of Care project. Starting with Mattie Miracle's vision and Psychosocial Symposium on Capitol Hill in 2012 to the present activities! 


This evening we have been invited out with the conference planning board, and we look forward to having the opportunity to get to know these wonderful professionals better! I am signing off. Tomorrow we return to DC! A whirlwind trip, but a vital one for the Foundation. 

Wednesday, April 30, 2014

Wednesday, April 30, 2014

Tonight's picture was taken on July 19, 2009. Mattie was home and as you can see he built a track and lots of trains made out of Legos. Legos were Mattie's favorite things to play with, but they were not only a toy. They kept his mind occupied, his hands busy, and in many ways it kept us all talking to each other. It gave us something more pleasant to talk about and a positive distraction from the overwhelming stress and pressure we lived under with each and every day. Legos served as a social bridge too between Mattie and his doctors, nurses, and social support staff. It is hard to believe that at one time we had THOUSANDS of Lego bricks within our home, and now we virtually have almost none, except for the pieces Mattie built. 


Quote of the day: Suffering has been stronger than all other teaching, and has taught me to understand what your heart used to be. I have been bent and broken, but – I hope – into a better shape. ~ Charles Dickens


It has been non-stop rain in Washington, DC. Today was NO different, it was torrential! Not my kind of day to fly in! But literally I am so exhausted, I have very little energy to emote my fears and anxieties. That doesn't mean I don't have them! At times the flight felt like a roller coaster and the turbulence we hit while we were landing left me closing my eyes with my head shaking side to side. Any case, after we landed, Peter commended me for doing so well. I laughed because I just couldn't wait to get off the plane! All in all, given the awful weather, we were very lucky we had no delays and the plane wasn't grounded. 

We checked into the hotel, and then literally walked to a local Italian Restaurant for dinner. It is overcast here and cool, but not raining. We passed several sites along our walk and snapped a few photos. The first one was of information about the Underground Railroad.

Clearly this is the headquarters of the Dispatch, Ohio's "greatest home newspaper." Both the sign and the building caught our attention. 

Peter snapped a photo of me by the State Capital Building in Columbus! I am frozen and it is almost May 1! I am in three layers!!!

We start our day tomorrow by setting up our poster presentation. Then will deliver our keynote from 10:15 to 11:15am. Around 110 people will attend this keynote presentation and then the poster session is from 12:30 to 1:30pm. Throughout the day we will be attending other sessions as well! So it will be a full day. 

I end tonight's posting with a photo sent to me by the girl scout troop at Mattie's school. My friend Ann took them today on their annual shopping visit to purchase Legos for the Mattie Miracle Lego Raffle Basket. This troop donates Lego items to our raffle each year, in order to keep Mattie's Lego tradition alive at the Walk. Very thoughtful and meaningful. However, as the troop evolves, so do the girls. Very few of the girls actually ever knew Mattie. Yet Ann's daughter, Abbie, shared with the girls some information about her friend Mattie and tried to explain why they were collecting Legos and the importance of raising childhood cancer awareness and funds for Mattie Miracle.  

Tuesday, April 29, 2014

Tuesday, April 29, 2014 -- Mattie died 242 weeks ago today.

Tonight's picture was taken on July 30, 2009. You maybe asking yourself, what was going on around this table?! Who were the cast of characters? Well Mattie you recognize in orange! The lady in pink is Denise, Mattie's social worker. Jocelyn was sitting next to Mattie on the stool. The man in the yellow shirt is the "Magic Man." Mattie's head of the lower school, Bob Weiman. Bob came to the hospital and to our home on many occasions to teach Mattie how to perform magic. However, Jocelyn and Maya (the cutie in the blue shirt), Mattie's buddies, enjoyed Bob's visits and participating in the magic shows. In fact, Bob recently told me when I was visiting the Kindergarten class last week that he sent Jocelyn a magic trick shortly after that 2009 visit to the clinic. Bob remembers Jocelyn well, as do many of our supporters since Jocelyn came to almost all of our Foundation walks! Though this was the "art therapy" table in the oncology clinic, the table was used that afternoon to learn magic, to perform magic, and to gather as friends. That was the beauty of what Jenny and Jessie (Mattie's art therapists) created for this space, a warm, inviting, and safe environment for all of us to gather. They had no agenda, just the motivation to help children and their families cope, process, and create.  


Quote of the day: The whole of life is just like watching a film. Only it’s as though you always get in ten minutes after the big picture has started, and no-one will tell you the plot, so you have to work it out all yourself from the clues. ~ Terry Pratchett


I learned today that Mattie's memorial quilt is done! This quilt has taken months to assemble and great thought and attention to detail went into designing it. It was crafted by Terri Tomoff. I met Terri at Georgetown University Hospital. Her son is a cancer survivor and she actually started making quilts as a creative outlet when her son was diagnosed. Throughout the years she has perfected her trade and the quilts she designs are true works of art. Terri doesn't just make and sell quilts, on the contrary she is very charitable with her quilts. She is part of quilting guild and they donate hundreds of quilts to military service members overseas and to children with cancer all around the Country. Terri is kind enough to offer her services as a raffle item each year for our Foundation, in which she will work with a lucky winner and design for them a hand made t-shirt quilt. Building memories for families! 

Going through Mattie's closets and drawers in October was no easy feat. Many of the clothing items I donated or gave to certain people who had children. But 30 of the items were so special to me, I couldn't part with them. Well actually that isn't true, maybe 50 items I couldn't part with.... 20 of them landed up in my own drawers, and the other 30 I mailed to Terri. Terri has been working away at integrating Mattie's clothes into a patchwork quilt. Keep in mind that Terri has never meet Mattie. She only created the quilt based on what I told her about him, about his likes, and what he gravitated to. Of course she could tell some things about him based on his clothes and the themes pictured on them. Any case, when I receive this 68"x 90" quilt in the mail, I will photograph it for you. But there is a special place on the wall in Mattie's room dedicated for this art piece!

I am signing off for today. I will write to you tomorrow from Columbus, Ohio!

Monday, April 28, 2014

Monday, April 28, 2014

Tonight's picture was taken in July of 2009. In fact, I have NO idea where this photo is in my electronic files! I only found it while combing through the blog looking at photos of Mattie and Jocelyn. Any case, as soon as I saw this photo, I immediately downloaded it because I just love Mattie's "Sponge Bob" smile! Mattie knew I despised Sponge Bob, which was why he LOVED the character so much! That day, someone had mailed Mattie this wooden figure of Sponge Bob as a gift and as you can see, Mattie was posing with it! Showing off to me.... just how much he loved this character and how others were supporting him in his choice. To me, this photo showed Mattie's fun side, his humor, his spirit, and his ability to be a kid despite all he was going through. 


Quote of the day: Cancer will be with me for the rest of my life, be it as a nodule, tumor or cell someplace, or in my fears and anxieties. ~ Kathryn Joosten

Our Foundation's monthly e-newsletter went out today, and I received an email from my parents asking me for more information about our Ohio trip on Wednesday. They wanted to know what our keynote address was about and basically why was it important for us to go? Especially given that this is only weeks before the Walk, the timing of this couldn't be worse! So what is the purpose of going? I figured since this really was such a good question and if they did not know, then the chances are neither does more people. Other than Peter and I of course!

In the Fall, Peter and I were approached by two groups, APHOES and AECMN. APHOES stands for the Association of Pediatric Hematology Oncology Educational Specialists and is a group of professionals working together to address the educational needs of pediatric hematology and oncology patients. APHOES membership is inclusive of a wide range of disciplines such as nursing, psychology, social work, child life, school and hospital-based education, and medicine. 

AECMN stands for the Association for the Education of Children with Medical Needs and strives to serve the unique needs of students with health impairments through raising awareness of their educational challenges, collaboration with like minded professionals, and partnering with similar local and national organizations. This week, APHOES and AECMN are having a joint conference in Columbus, Ohio. Both organizations are very interested in Mattie Miracle's National Psychosocial Standards of Care project and really want to learn more about us, how this project came about, the history of the project, an update, and basically how one would go about starting and managing such just a monumental grass roots operation. 

As I always say... Peter and I had a vision. We took that vision to Capitol Hill in March of 2012, when we hosted our psychosocial symposium. We shared this vision with the right people, captured their attention and their hearts and through our determination and their leadership, there is now a band of 50 healthcare professionals from around the Country working on developing a Standards of Psychosocial Care. Most of these distinguished professionals are working on this agenda without compensation. Keep that in mind! If I had more funding, imagine what we could accomplish!!!! In any case, Thursday's keynote address is a big deal, it is worth flying to Columbus for, because it acknowledges NOT only in our eyes, but in the eyes of national organizations that Mattie Miracle has a national agenda that needs to be shared and heard.  

Sunday, April 27, 2014

Sunday, April 27, 2014

Tonight's picture was taken on July 13 of 2009. We were in clinic that day celebrating Brandon's 19th birthday. With us was of course Jocelyn. In many ways, they were the three amigos, Mattie, Brandon, and Jocelyn! In this photo was Mattie, his wonderful nurse Katie, and of course Jocelyn! As you can see the art therapy table was filled to capacity with excitement, which was not an unusual occurrence with Jenny and Jessie (Mattie's art therapists), but certainly with Mattie present things were a buzz. If you look closely at the photo, you will see that Mattie created an alligator clip, and naturally like all good alligators this fellow caught someone's finger in his mouth!


Quote of the day: Sharing tales of those we've lost is how we keep from really losing them. ~ Mitch Albom


It is funny how the mind works and how one event can trigger a host of memories. After Jocelyn's celebration of life event yesterday, I was bothered about several chain of events because I couldn't remember when I met Jocelyn's sisters before. Then my mind began playing tricks on me. Had I ever met them before? Or was it only Peter and his parents who met them before in clinic and it was through their stories that I feel I know them? Well this question has been going around in my head since yesterday. 

Thankfully in moments like this, I turn to my institutional record, THE BLOG! As I was trying to put time, place, and events together in my mind, Brandon's birthday kept surfacing in memory. So today, I searched the blog under "July 13th." Sure enough, this was when the first "boat races" took place and I met Jocelyn's youngest sister Hannah. It all took place on Brandon's 19th birthday party in clinic. I remember that birthday because Toni (Brandon's mom) held an ice cream party! A woman after my own heart! Brandon wore a king's crown party hat and the three amigos had a great time with each other that day, and I distinctly remember Toni telling me that Mattie called Brandon "his best friend." These are snippets of memories that stay with me always, but I can't quite get the sequencing correct at times. But I am so happy I could check back on the blog because as Peter was talking about boat races yesterday with Jocelyn's sisters, part of me wondered whether I ever saw these races or missed them altogether. Certainly in the grand scheme of things, maybe it doesn't matter. After all I was there for practically everything, but I tried not to miss out on anything in Mattie's life and the boat races were memorable. It was memorable because it was a symbolic connection between true friends. Those types of moments, I don't like missing.

As I looked back at the blog tonight, THANKFULLY, I confirmed that I hadn't lost my mind, that I did see the boat races and that I did meet Hannah, one of Jocelyn's sisters in person. If you want to read what happened back on July 13th of 2009, I attached the link below:

http://mattiebear.blogspot.com/2009/07/monday-july-13-2009.html

Mitch Albom's quote is quite accurate, because sharing tales, stories, and memories are crucial to me. Losing Jocelyn is a blow for us. It is hard to see a vibrant, bright, and beautiful person inside and outside die of a horrible disease. She died too young, and with her also goes memories of Mattie. So in a way it feels like a double loss if that is at all possible. I can no longer turn to Jocelyn for help remembering things. I have to remember them both her and Mattie and thankfully I tried to keep some sort of written record because while battling Mattie's disease, it was very hard to keep track of the days, much less make sense out of them. I still can't remember whether I went to clinic that summer day with Peter and his parents when they met Jocelyn and her sisters. It was that day that a big boat race took place in clinic. My hunch is I wasn't there, because I honestly have no recollection on that day, and yet part of me feels like I was there! Why this should be so upsetting, I have NO idea, but it is!

We have been working all day on Foundation things, but I feel absolutely out of it. In the midst of that, Peter and I head to Columbus, OH on Wednesday. We are delivering a keynote address at the APHOES conference (http://www.aphoes.wildapricot.org/Resources/Documents/2014%20Joint%20Conference%20Registration%20Booklet.pdf). This is very exciting for the Foundation. This is our first keynote engagement but I have to say it has been a very active year for Mattie Miracle and with the Walk fast approaching, I can safely say that I need some down time ASAP.