Saturday, May 12, 2012

Tonight's picture was taken in August of 2009. Mattie was in the Lombardi Clinic with his pal, Jocelyn. Jocelyn is an osteosarcoma survivor, and like Brandon, was older than Mattie. Yet Jocelyn had a wonderful rapport with Mattie, and he related to her because she had the same disease, and also had to learn to walk again. That day in clinic, Jocelyn and Mattie were having a boat race. They designed their own boats out of materials around the clinic and then raced the boats in the clinic's sink. This boat race took place over several days, and during one of the races Brandon (Mattie's big buddy) and Jocelyn's sister were also included. Boat construction was very popular in the clinic during that month of August.


Quote of the day: Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit at home and think about it. Go out and get busy.  ~ Dale Carnegie

My day started by receiving this very sweet Mother's day donut from Peter. Yes Mother's day is tomorrow, but he is starting early. I literally worked a 14 hour day today, and I am still at it. At one point, I was organizing Walk materials and boxes, and somehow slipped and went flying in the air. I fell right onto my back and hand. Thankfully I did not break anything, but everything aches tonight.



I received a wonderful email tonight from my friend and college roommate, Leslie. She wanted to make sure I was aware of the story and video below. So I paused and read the article in USA Today and then watched the video. I think the video is brilliant and given the circumstances and the content it is portraying, it practically gets you up from your chair and dancing! This video was created by a 22 year old Leukemia patient at Seattle Children's Hospital. The children are lip-synching and dancing to the popular Kelly Clarkson song "Stronger," and in essence showing us that they are MORE powerful than the disease that is trying to take over their body and spirit. I also love the energy and passion expressed by the HEM/ONC nurses in the video. Their dancing and participation doesn't surprise me in the least. HEM/ONC nurses are a special breed, they have determination, conviction, and amazing spirit. Please check out this great story and video for yourself..................................

STORY: Young cancer patients' video a big hit----A video featuring cancer-stricken children dancing to the popular Kelly Clarkson song "Stronger" has become an online sensation. http://www.usatoday.com/news/health/story/2012-05-12/young-cancer-patients-video/54918102/1

VIDEO: http://www.youtube.com/watch?v=ihGCj5mfCk8&sns=em

I would like to end tonight's posting with a message we received today from my mom. My mom wrote, "I just saw the video and it was wonderful. It puts Mattie Miracle on the map as an annual community event in support of your work to combat pediatric cancer. You and Peter did an excellent job in providing the reasons for your commitment to the cause and you both looked terrific as you spoke from the heart to your audience! The video is a winner and will no doubt earn you many more loyal supporters who are captivated by what you have accomplished so far. Do not be surprised if it has a wide ranging ripple effect. Viewers will want to stay connected to Mattie Miracle because of your determination to make a positive difference in the psychological treatment of pediatric cancer patients and will be tempted to keep watching as your cause transforms you from parents to pioneers in a leadership role dedicated to preserving the emotional dignity of these children during invasive and debilitating physical treatments. It is clearly evident that you do this as a tribute to Mattie and his memory!! Have no doubts for Mattie is watching,applauding and cheering you on! For was it only a coincidence that last week-end we witnessed the brilliance of Super Moon shining down on us from heaven above or was the timing just another "Mattie Miracle?"

Friday, May 11, 2012

Friday, May 11, 2012

Tonight's picture was taken in May of 2009, in Mattie's hospital room. Mattie loved colored tape, an attraction which started in preschool. In fact, during his first year in preschool, I understand that in one semester, Mattie used up the school's year supply of tape. That is how much he LOVED tape! I am trying to recall this picture tonight, and I do not remember the exact context, other than Mattie got Linda, his Child Life Specialist to sit in a chair and he was taping her up. As silly as this may look, this was actually great physical exercise and therapy for Mattie. He had to move his arms, legs, and use his hands!



FOX 5 Interview
http://www.myfoxdc.com/story/18322625/mattie-miracle-cancer-walk-to-support-cancer


Quote of the day: There are two primary choices in life; to accept conditions as they exist, or accept the responsibility for changing them. ~ Denis Waitley

Somehow tonight's quote speaks to me. It perfectly captures the sentiments of today and the interview with Fox 5 at Georgetown University Hospital. Peter and I take responsibility for changing the psychosocial care of children and their families battling childhood cancer. This is a huge undertaking, but we have to start somewhere, and Georgetown is where we are beginning. I want to commend Beth Parker, a newscaster at Fox 5, for telling our story, highlighting the work of the Foundation, and announcing our Walk next Sunday.  

After our 2011 Foundation Walk, we contributed $25,000 to Georgetown University Hospital, which endowed the Mattie Miracle Child Life Program Fund. This Fund is used to pay Jess Abrams' salary. Jess is a Child Life Specialist at Georgetown who specializes in normalizing, supporting, and educating children and their families on scan and procedure days. These are very stressful days at the hospital, because it is through these scans that one determines whether treatment is working, or whether cancer is progressing. Fortunately for us, while Mattie was battling cancer, Linda (Mattie's Child Life Specialist) accompanied us on every scan and procedure. Mattie and I couldn't have made it without Linda's support. Which is why we knew funding a Child Life Specialist to work under Linda's guidance on scan and procedure days would be beneficial and a great addition for the Hospital. I understood that, but today, I got to see how BEAUTIFULLY our vision is working out!

Each year around the time of the Walk, we reconnect with Marianne Worley, the Director of Media Relations at Georgetown University Hospital. Marianne has strategized with us in the past about the Foundation and is another one of our champions at the Hospital. Marianne made this interview happen today and connected us with Beth Parker. In fact, Marianne introduced us to Beth Parker in May of 2010, when she covered our first Foundation Walk and our keynote speaker, Sean Swarner. We are deeply grateful to Marianne and it is thanks to her that I got to see for myself the amazing work Jess is doing and how our money is truly going to support the psychosocial needs and concerns of children with cancer.

Today's Fox 5 story featured Alesia, a nine year old girl battling Hotchkins Lymphoma. It is through Alesia's story, that one can feel great pride in what the Mattie Miracle Cancer Foundation has been able to accomplish. Alesia was born in Russia and lived in an orphanage. She was diagnosed with cancer while in the orphanage and her first two rounds of chemotherapy occurred in Russia. Alesia's treatment was inhumane. She was told that she was RESPONSIBLE for getting cancer and was being punished. If that wasn't awful enough to do to a child, she was then strapped down to her bed for each chemotherapy infusion. She was told that she was being administered water through an IV, not medicine. Alesia was never told she had cancer and she had no idea why she was feeling so ill and losing her hair. Alesia underwent treatment alone, had no support, and her orphanage was three hours away from the hospital. Cancer treatment is daunting enough, but the way Alesia was treated makes you feel sick to your stomach.

Through a Bridges for Hope program, an American couple had an opportunity to meet Alesia in the US. They fell in love with her and began filling out paperwork for her adoption. Thankfully so! While filling out the paperwork they learned of Alesia's cancer diagnosis and the orphanage and adoption agencies assumed this family would back away from their commitment and not want to take on such a medical responsibility. However, as Larry (her adopted dad) told us, it did not matter what Alesia was diagnosed with, he and his wife loved her and wanted her in the States. Larry and his wife embody the whole premise of tonight's quote. They took incredible responsibility for changing things for the better for Alesia.

When Alesia first came to Georgetown Hospital, she entered the building and clinic screaming. She was scared and frightened. After all from her previous experiences she learned that doctors and nurses can't be trusted and they do harmful things. Then Alesia met Dr. Aziza Shad and her team, and things began to change in the positive direction. If you could see Alesia today, you would NEVER know that this is a young girl who lived through such trauma, torture, and fear. She appears to be happy, well adjusted, and engaging (even on chemotherapy!). This is a strong testament to the work, support, and relationship Alesia developed with Jess. In fact, Larry even admits on the Fox 5 newscast that Jess is an important part of Alesia's world, Alesia "trusts Jess." Trust is crucial for any child, but especially a child enduring cancer treatment. When I sat back and observed this story unfold today, all I could say is WOW! This is what we are actually helping to accomplish!!! We are transforming a life, and Alesia is just one example of who Jess is helping in a given week. I would never have known the full extent of our contribution if I hadn't seen it for my own two eyes. The beauty of Alesia will remain in my mind always.

After Beth interviewed Jess and Alesia together, our Mattie Miracle snack cart came rolling in, and Alesia posed in front of it eating a donut. She was waving at me, smiling, enjoying her donut, and I purposefully got permission to take her picture so you can see what a precious face she has. She is a survivor on so many levels, and our Mattie Miracle supporters should feel good about their contributions. Contributions that went in 2011 to covering Jess' salary.

When all the interviews were over, I got out my camera again and asked Linda to snap a picture of us. Pictured from left to right in the back row is: Beth Parker, Vicki, Jey (Mattie's Big Brother at the Hospital), Nelson (Fox 5 cameraman), and Peter. In the front row from left to right is Dr. Aziza Shad, and Jess Abrams.

Coming to Georgetown is like visiting one's home, and we feel this way because of the people within the building, not the building itself. When we entered the Hospital today, I told Peter that I have missed seeing Jey. Jey worked in the CT area and also helped to transport Mattie. Jey became part of our family and would visit Mattie each week in the Hospital. In fact, when Mattie died, Jey remained by his side. Jey insisted he go with the nurses and accompany them as they brought Mattie's body to the morgue. This is the kind of bonds we developed there. After Mattie died, Jey couldn't work in the CT department anymore, and transferred to the Hospital's security force. Mattie had a profound impact on those who got to know him, and it is through Mattie, and in his spirit that amazing work continues to be done. If I should ever forget this, my new code word will be Alesia! This will automatically reset my mood.

Info about Beth Parker:

http://www.myfoxdc.com/story/17981797/beth-parker

Beth Parker's written story:

http://www.myfoxdc.com/story/18322625/mattie-miracle-cancer-walk-to-support-cancer

Thursday, May 10, 2012

Thursday, May 10, 2012


Tonight's picture was taken in May of 2009. Mattie was home and playing with LEGOs. LEGOs were our saving grace. In fact, in the background of the picture, you maybe able to see tons of LEGO structures Mattie had created over time that year in the Hospital. They were all lining our living room floor. When I look at our living room now in comparison to then, there is a night and day difference. Almost as if the horror never happened. But it most certainly did, and though the toys are no longer all around us, pictures of Mattie are everywhere. His presence still exists visually, and several of his LEGO creations are on display in our living room.

Quote of the day: Success is never final. Failure is never fatal. Courage is what counts. ~ Sir Winston Churchill


It is 10pm, and as I sit down to compose the blog, I find that I am simply exhausted and do not have much energy or the desire to write. This doesn't happen often, but today is one of those days. Peter and I head to Georgetown Hospital tomorrow morning, where we will be interviewed by Fox 5 news for a story on Mattie Miracle and our contributions to the Hospital. Wish us luck, because when I am tired, I have trouble stringing words together, much less emotionally laden words. Until tomorrow, when I promise to share our experiences of the interview with you.

Wednesday, May 9, 2012

Wednesday, May 9, 2012

Tonight's picture was taken in May of 2009. We had a family dinner at Charlotte's house, and that particular evening, I renamed Mattie, "The Kissing Bandit." Mind you Mattie couldn't really walk and forget about trying to run, but he was motivated to catch up with Charlotte and kiss her on the cheek. I am not sure Ellen (Charlotte's mom) or I would under normal circumstances have appreciated this behavior. But given the situation, we all landed up laughing and admiring the special friendship Mattie and Charlotte had with each other.  

Quote of the day: Our lives improve only when we take chances... and the first and most difficult risk we can take is to be honest with ourselves. ~ Walter Anderson

In the Fall of 2007, Mattie entered kindergarten. At his school, they had weekly chapel on Tuesday mornings. I made it my priority to get to chapel each Tuesday, because my primary goal was to see Mattie, but also begin to understand the culture of his school. Anything that involved Mattie, therefore meant that I was going to get personally invested in it. I spent all of Mattie's life advocating for him and assessing situations and those around him. I was practically conditioned to do this given the sensory and other challenges he faced as a baby through his toddler years.

Each Tuesday in chapel, I sat between two women. One was my friend Junko, and the other was Luda. We were a threesome, and every week we convened, caught up with each other, and observed what was going on in chapel. Sitting there over the course of a year, our friendship grew. Though I no longer attend chapel, I still am connected to my chapel mates. Today, I went to visit Luda. Luda and her husband own ABC Imaging, which is a graphics and printing company that graciously creates all our Walk posters for FREE every year. They have created our banner, research posters, faces of hope posters, and the list goes on. My connection to Luda was started by Mattie, and it is thanks to Mattie, that Peter and I have wonderful companies like Luda's to turn to for help as we plan and host a professional Walk.

This evening at 6:30pm, I had a follow up MRI at Georgetown Hospital. It is never easy waiting for the results of a scan, especially when we have memories of ALL of Mattie's horrible scan results. I had a busy day of walk planning, and so by the time I got to the Hospital, I was exhausted. My MRI requires contrast, yet they had a hard time finding a vein and starting an IV. This is not unusual for me, since I have been told my veins are impossible to find even under the best of circumstances. After being stuck once unsuccessfully, my tech called in the cavalry for help. I appreciate that rather than being a pin cushion. I was then turned over to my MRI tech, Tony. Tony worked with Mattie OFTEN, and Tony did my last MRI. So we understand each other well. Today's hour long MRI made me lightheaded and dizzy, and thankfully Peter was with me, because I couldn't possibly drive home. With a pelvic MRI, you have to hold your breath for 20 seconds multiple times within an hour scan. So between being tired, lying flat and still for an hour, and holding my breath, I was a mess for a while post-scan. In the midst of this, I had Linda (Mattie's Child Life Specialist) and Dr. Shad (the chief of pediatric oncology) checking in with me. I am not their patient, but yet they are crucial parts of my support system even today.

When I got home, my mom's friend, Diane, sent me an amazing care package from California. I have only met Diane once, but it only took one face to face visit, to recognize what a special lady she is. Diane is a faithful blog reader, and has been reading it for years. The package was filled with tea, fresh fruits off her trees, and CHOCOLATE. I mean special chocolates, which as I told her were VERY needed since under stress, I turn to chocolate and sugar to survive (a skill I mastered while Mattie was battling cancer). I have one more week of Walk planning, and with these special treats in sight, I know I can make it through.

Tuesday, May 8, 2012

Tuesday, May 8, 2012 -- Mattie died 139 weeks ago today.

Tonight's picture was taken in April of 2009. We took Mattie for a stroll to the Washington Mall, near the reflecting pool. It was a beautiful weather day, and getting out of confinement was important for all of us. We tried to make these short outings pleasant, but the level of exhaustion we felt was overwhelming. Though living in the hospital was beyond challenging, trying to care for Mattie at home had its own problems. There was no support staff in our home to give us breaks, and we were solely responsible for managing medications, pain, nausea, as well as his emotional and social needs. Which any one of these issues alone was huge, factoring them all together was superhuman.


Quote of the day: The wound is the place where the light enters you. ~ Rumi

It is an interesting quote especially in light of how I spent my day today. For the majority of the day I was at Georgetown University Hospital. I visited the HEM/ONC unit and saw and spoke with many of Mattie's care team. I saw his nurses: Tricia, Miki, and Ashley, one of the chief residents: Gisella, the Child Life staff: Linda, Katie, and Jess, and Dr. Shad. Some could consider the hospital "the wound." This is where Mattie was treated, where the memories of horrible pain, cancer treatment, surgeries, and Mattie's death are housed. Yet despite all of this, it is within this building that "light" does enter me. For it is because of these fine professionals who work with children who have cancer, that I feel motivated and compelled to support their work. Work, which during some weeks, seems to take it out of me. It is impossible to venture to the inpatient floor, without being flooded with some sort of emotion, and then when I talk with members of Mattie's care team, at times I just cry. But these are emotions that are okay there, because in the outside world, most people don't want to see my cry, and for the most part can't really comprehend the trauma we lived through.

I had lunch today with the psychiatrist who now works full-time helping children and their families battling cancer at Georgetown. We are getting to know each other, as I try to figure out ways the Foundation can potentially assist with these supportive services. Right now, the Foundation funds this psychiatrist's support group which he offers once a month to the pediatric nurses. We are pleased to be able to support the nursing staff in this way, since they are the ones on the front lines managing the incredible emotions families have living in the units and seeing their children so sick.

This evening, I return back to the hospital for a parent advisory meeting. However, that doesn't conclude my visit to the Hospital this week. I return there tomorrow night, for my follow up MRI. The MRI area of the Hospital, I unfortunately know it quite well and it makes me edgy. Mattie had more MRIs that I can count on two hands and each one seemed to have a traumatic component associated with it. Even those that were sedated were traumatic. Mattie would wake up from sedation agitated, disoriented, and either crying hysterically or angry. I preferred crying over angry. Angry was hard to manage, and for a six year old undergoing treatment, he had a great deal of strength and energy to be combative.

While talking with Paul today, the psychiatrist, his first question to me, was what was Mattie like before cancer? This is actually an excellent question, because it is through understanding Mattie, his healthy history, and our relationship, that it sheds light and gives context to what our family dynamics were like once he developed cancer. For the first several months of his treatment, I was at odds with the social workers, who encouraged me to take care of myself and get distance on occasion from the PICU. I refused to leave Mattie and the hospital floor. Which may have seemed odd, but certainly NOT odd if you understood are history together. Mattie had a challenging toddlerhood, and thanks to early speech and occupational therapy interventions Mattie overcame many of his delays and sensitivities. But it is through these differences, that our relationship became very strong. From day one, I had to advocate for Mattie and I had to hold my ground about his development with others. So rest assured, while battling cancer, if you were going to interact with Mattie, you had to go through me. Yes I was sleep deprived, at times edgy, but never became psychotic. Which is quite possible given our living conditions. As I said to Paul today, sometimes the best thing a support staff person can do is find a way for families to manage the situation, in ways that the family deems acceptable. However, over time, as I explained to Paul, you do develop trusting relationships with certain staff. Therefore, if these women expressed their opinion about something, I usually would listen. But this type of rapport building takes time, but at the end of the day, to answer Paul's second question, the greatest gift the psychological support staff can give a childhood cancer family, is the opportunity to feel connected, to feel heard, and to be a part of the treatment team. After all, it is this level of connectiveness that keeps me coming back to the Hospital!

Monday, May 7, 2012

Monday, May 7, 2012

Tonight's picture was taken in May of 2009. I took Mattie for a walk with my mom in his radio flyer. Mattie asked Linda (his Child Life Specialist) for a radio flyer of his own. He loved the ones in the Hospital, and really wanted one of his own for home. Though Mattie never confided in me as to why he made this request, as him mom, I suspected it was because he preferred going on walks around our neighborhood in something OTHER than a wheelchair. He wanted to look more normal. Linda found a way to make Mattie's wish a reality, and this radio flyer remains with us today outside on our deck.


Quote of the day: Let me tell you the secret that has led me to my goal. My strength lies solely in my tenacity.  ~ Louis Pasteur


I love Pasteur's quote, there is something to be said for TENACITY. Or as I call it.... being pleasantly persistent. I spent a good chunk of today working on Walk related items. At lunch time, I met a few of Ann's friends for lunch. One of her friends is in my zumba class and her son has Crohn's disease. Today's lunch was a fundraiser for this illness. For me it is always challenging to be in a group of women who are moms, and who know each other as moms. The natural tendency is to talk about kids, families, and mom-related activities. Though I am not an active mom now, I can understand the topics they were discussing because I know what kind of time and energy it takes to be a parent. It seems like amazing irony while others are talking about parenting, I have to sit back and accept that I no longer have a kid to nurture. My nurturing instead has to occur through a 501c3!

One of the highlights of my day was receiving a package from my friend and colleague, Nancy. Nancy sent me a Willow Tree Angel. Specifically the angel is called, the Angel of Freedom.... allowing dreams to soar. I do not know if Nancy realizes I collect these angels. This collection was started by my friend Margaret. Margaret was Mattie's preschool teacher, and she gave me my first angel. From there, my collection has grown. I have had students over the years give me angels too, and like Nancy, they did not realize I collected Willow Tree angels. Rather interesting, no? My angels sit on my kitchen window sill. Nancy's angel, has a metal butterfly sitting in her hand. A symbolic reminder of my Mattie! I will always associate this Angel of Freedom with our 2012 foundation walk and my desire to observe butterflies (which in my mind a butterfly's beauty captures the spirit of Mattie).

Sunday, May 6, 2012

Sunday, May 6, 2012

Tonight's picture was taken in May of 2009. I happen to love this picture and I distinctly remember capturing this moment in time. At that point, Mattie's chemotherapy regimen was coming to an end and in a few weeks he was headed for a sternotomy, to remove the tumors in his lungs. It was after that point, we thought Mattie could then focus 100% of his time on rehabilitation. That unfortunately never happened. Mattie never got a break, because only six weeks off of aggressive chemotherapy, his cancer had spread everywhere. Anna, Mattie's physical therapist, was encouraging him to blow bubbles in this picture and to exercise his lungs. What you may not be able to decipher however, was the level of conversation between the two of them. Mattie seriously did not want to blow bubbles, much less move his body. He was tired and did not have the desire, interest, or energy to engage in physical therapy. Yet despite that, Anna kept on trying and the negotiations back and forth were memorable. Anna and Mattie had a great rapport with each other, and I always appreciated Anna, because she was the one professional on Mattie's care team who was always honest with me about the complexities of Mattie's surgeries and how it would be challenging to regain his strength and the ability to walk again, especially while on chemotherapy.


Quote of the day: Knowing others is intelligence; knowing yourself is true wisdom. Mastering others is strength; mastering yourself is true power. ~ Tao Te Ching


For as long as I can remember, I have always wanted to put framed pictures of Mattie along the long wall, cascading down our staircase. Almost like a gallery of Mattie, celebrating his life. I wanted to do this when he was healthy, but somehow never found the time. I suppose we were too busy trying to live and keep him busy, happy, and engaged. However, now that Mattie is no longer physically present in our lives, my desire to establish this special wall, only grew deeper with time. As a mother's day gift this year, Peter purchased me a set of 21 frames as well as ordered pictures for each of the frames. Over the course of the past two weekends, we have been putting pictures into the frames and trying to figure out how we wanted to display them. Today was the day we actually implemented a plan. We worked together to design how we wanted these photos of Mattie displayed, and after several hours of work, I can say I think the wall looks fabulous. I will share pictures of this new addition next week as we get closer to mother's day.

Mother's day is advertised everywhere. I particularly love watching the Hallmark commercials, steering you into their stores to buy cards for mom. They practically claim that they have a card for almost any mom, though I highly doubt they make a card for me. After all, how do I celebrate and acknowledge mother's day? Yes I was a mom, but I am no longer one, and there is no longer a little person in my life to acknowledge this day with me. It is a day fraught with issues, as are so many special occasions and holidays now.

As with any home improvement project, as soon as you start concentrating on one area, then every other area starts to bother you and need attention. So at one point today I was working on three different parts of our home at the same time. Between that and Foundation items, I am wiped out tonight. So I am signing off but as always I appreciate you checking in and for helping us get the word out about the 3rd annual Mattie Miracle Childhood Cancer Walk on May 20, 2012.