Saturday, April 21, 2012

Saturday, April 21, 2012

Tonight's picture was taken in August of 2009. Mattie was home and on our couch. In his hands he had a huge fly swatter that Ann bought all the kids who attended Mattie's 7th birthday party. But also of interest was what was sitting next to Mattie on the couch.... a very large paper cockroach. Mattie made this gross thing in clinic with his art therapists and he brought it home and loved spooking me with it. In fact, that year in the hospital, Mattie's love for bugs and creeping people out with plastic and rubber bugs grew exponentially.  


Quote of the day: The secret of getting things done is act. ~ Dante Aligheri


Dante Aligheri's quote fascinates me. It reminds me of what my dad always says, which is if you want something to get done, you need to give the task to a busy person. I suppose there is some truth to this. Just when I think I can't possibly take on more, I somehow do. But I think this is the mixed blessing of trying to run a small business without having a staff. Everything falls on either myself or Peter.

Today Peter and I drove to Waldorf, MD. Which for us isn't around the corner. It takes about 40 to 45 minutes one way. We drove this distance to shop at the Christmas Tree Shops. If you like bargain shopping and a vast selection of things, then this is the ultimate store to go to. I was introduced to this fantastic chain in Boston, MA. The home of Christmas Tree Shops. For the past two years, I have journeyed to the Maryland Christmas Tree Shops with my friend Carolyn (our Walk Raffle Chair) and her two children. In fact, I did not even know the store existed near me until Carolyn took me to it.

Peter and I spent hours in the store today and I feel like we hit the Mother Load. You just can't imagine what you can buy for $100 in this store. If I tried to buy the equivalent at other stores around town, I would have most likely spent more than $300. So to me, it is worth the trek! After our purchases we came home and I began staging our raffle baskets. Ten out of the 12 are almost to completion and ready to be wrapped, which is excellent news for us.

We took a break for lunch and actually walked up the street to one of our newer restaurants in our neighborhood. The restaurant was bustling but we were able to sit outside in the fresh air, chat, and have a nice lunch. To me it is this small perk in a weekend that can change my mood.

At the Walk this year, we have decided not to have community vendors. For the past two years we had people come and sell their wears, but unfortunately nothing ever sold. Last year, Lauren Chelenza, the founder of Bows for Hope, was one of our Walk speakers. At the 2011 Walk, Lauren sold her hand designed duct tape bows. They sold like hot cakes. So this gave me the idea of doing away with community vendors and in their place, have kids and teens serve as vendors this year, selling their hand made items. Mattie's preschool friend, Ellie, decided on her own to be a Walk vendor and to create hairbands. She has named her vendor table, "Bands for Hope" and is busy at home creating and designing for the Walk!

Here is a close up of some of Ellie's hand crafted hairbands. To me they look professional and very creative and I am so happy Mattie Miracle can give kids and teens this outlet to channel their creativity in a very positive and productive manner..... which is to raise money for psychosocial services to support children and their families battling childhood cancer.

Friday, April 20, 2012

Friday, April 20, 2012

Tonight's picture was taken in August of 2009 at the Lego store at the mall. This was a follow up picture to last night's posting. As I mentioned Mattie decided during his special night at the store that he wanted to create and build something from scratch. Without a plan! He decided on a NYC taxi, most likely from his recent trips to New York City to receive his initial experimental treatments at Sloan Kettering. Surrounding Mattie were two wonderful men who are expert Lego builders, Brandon and Jared. Together they worked with Mattie and his friend, Abbie, to create the finished project Mattie was holding in his hands. A product he was proud of, and didn't play with it, but wanted it on display at home.

Quote of the day: Perhaps the world little notes nor long remembers individual acts of kindness---- but people do. ~ Herm Albright


As a recipient of many little acts of kindness, I do know they go a long way and they are also appreciated. In so many ways, it is the kind and caring gestures that are most memorable. Maybe because they are done spontaneously and not necessarily contrived or planned.

This morning I arrived at Georgetown University Hospital a little before 7:30am. At that hour, parking was BEAUTIFUL! However, while walking on campus, I developed a coughing fit. The fit was so horrible, that I could barely breathe. I figured if I passed out, I was headed in the right direction and wasn't far from the emergency room. By the time I got to the auditorium where Linda was, I was still coughing but could breathe. Since I was the first parent there, I left Linda with Mattie's video that I was showing today at the Medical Grand Rounds, and went to get hot tea. While getting tea, I bumped into Mattie's chaplain from the Lombardi Center. Sharon and I have been through a lot together and she sat with Peter and I for four painful hours while we watched Mattie basically choke to death. In fact, for those of you just tuning in, Mattie refused to die. We had to give him propofol to induce a coma and death. I could go on about that experience and hearing your child flat line, but I will spare you the details. However, these details are MY reality, and they live inside me, even if I may look "pretty" on the outside. The inside isn't so pretty. Sharon understands my horrors, because she saw them and sat with us through them. When I go back to Georgetown, I remember the many acts of kindness I received from the support staff and nurses. All amazing women! What this tells me is that medicine has to be MUCH more than science to be effective. Naturally I remember the HATEFUL treatments and surgeries Mattie endured. However, what made that nightmare bearable at times was the incredible sense of compassion around me. These women showed me what true kindness, care, and compassion are about, and as I am sure my readers know, Linda is at the top of my list. Which is why raising money for her program is a top priority for me.

Last year when I attended Medical Grand Rounds, Peter, my parents, and Ann were with me. This year I was alone. I went into this day feeling tired and though I knew my body was there, my head felt like it was somewhere else. When I got up to speak, to a very full audience (this year there was an incredible showing of attending physicians, residents, medical students, nurses, and other medical personnel), in the back of the room I saw my friend Tim. Tim is a hospital administrator, but a major Mattie Miracle supporter, and our friend. Just seeing Tim there made me instantly feel better. His presence was an act of kindness. After the presentation was over, one of Mattie's intensivists (a  physician who specializes in the care of critically ill patients, usually in an intensive care unit) came up to hug me and talk with me. She was one of the doctors who discussed with me the option of letting Mattie die in the hospital versus at home. She was 100% correct, but in the end it was Mattie who chose to die at Georgetown and thank goodness he made that brilliant decision, because his death could never have occurred at home. We practically couldn't manage it within the PICU. I respect people who choose to die at home, but in all reality, pediatric hospice is horrendous, and definitely not trained or prepared to help a child or family with end of life care. Any case, this physician consulting with me back in September of 2009, I perceive as another act of kindness. After all, she did not have to take the time to invite me to her office and ask how I was doing. She did this on her own time! Time which I have never forgotten.

Also at today's event I met Dr. Bellanti again. I met Dr. Bellanti for the first time at the Molecule Salon fundraiser that was held for Mattie Miracle on March 31. Dr. Bellanti, unbeknownst to me, is the father of my friend Maria (who runs our complex's front office). But it gets better, Dr. Bellanti is the author of my immunology textbook that I used in college. When I saw him today, I told him how honored I was to truly meet him and how much I loved my immunology course because of his wonderful writing! His attending grand rounds today and chatting with me was another act of kindness!

In addition, a young med student came up to talk with me. She wanted me to know she was sorry for my loss and was captivated by Mattie's video. She then asked me some questions and we chatted about why she wants to be a pediatrician. Though my actual presentation was a big blur to me, Mattie's video hit me, as it did others in the audience who were also crying (the four minute video is posted to the blog).

 

Linda took a picture of a bunch of us today. From left to right are: Mira (the chair of the Pediatric Parent Advisory Board, of which I am a member), me, Alice (Director of Pediatric Nursing), Greg (dad to Cory, a Leukemia survivor), Jenn (mom to Grant, a former PICU patient), Joyal (mom to Ellie, who passed away from a genetic disease at 5 months of age), and Dr. Hauser (Director of the Pediatric Intensive Care Unit). Today's testimonials were video recorded and streamed live to about 6 area hospitals, including Reston Hospital and Civista Medical Center in Southern Maryland.

I was deeply touched by each parent presentation today. I appreciated their candor, honesty, and insights. What I concluded however, is even though Joyal and I lost our children in different ways, we have many similarities about how this loss has affected our lives.

I end tonight's posting with the testimony I delivered today..........................

 Script for the Medical Grand Rounds at Georgetown University Hospital

April 20, 2012

            Good Morning. My name is Victoria Sardi-Brown. I am here to tell you the story of how my husband and I lost the most precious thing in our lives, our seven year old son, and only child, Mattie. It is our hope to give his loss purpose and meaning and that our experiences will help and inspire you as you continue your fine work with pediatric patients and their families.

            Mattie had so many strengths, such as his sense of humor, his observational skills, his ability to understand how things worked (mind you at age two he was disassembling and resembling his hot wheel cars with a screwdriver), his level of empathy for others was beyond his years, and his vivacious and veracious need to have fun was especially contagious since he was good at convincing others to participate in his antics.

            I must admit prior to Mattie developing cancer, I hated hospitals. I hated their antiseptic look and feel, and how they smelled. However, after spending 14 months living at Georgetown University Hospital, my opinion about hospitals has changed. Mattie was not only treated at Georgetown, but he died here as well. In many respects, coming here is like visiting sacred ground, because when I walk your hallways and interact with your staff I feel in a way that I am reconnecting with my son.

            Mattie's cancer was very aggressive and many doctors from other well known cancer institutions believed that he should have received palliative care rather than surgery and high dosage chemotherapy. Georgetown's Pediatric Hem/Onc clinic, under the direction of Dr. Aziza Shad, was not only willing to treat Mattie, but they instilled hope into our lives when we needed it most. Georgetown's decision gave us 14 more precious months with Mattie. During which time we went on two trips to New York City, we celebrated holidays together, his seventh birthday, and his first trip to the circus.

            In July of 2008, Mattie was six years old and attended a tennis camp with his friend. Toward the end of the two week experience he complained of pain in his right arm. When the symptoms got worse, I decided to have Mattie examined by his pediatrician. I will never forget that day or the x-ray results that revealed Mattie had Osteosarcoma.

            Thanks to our family friend, Dr. Bob Henshaw, an orthopedic surgeon, we were immediately connected to Georgetown and the Lombardi Pediatric Clinic. Mattie's official diagnosis was Multifocal Synchronous Osteosarcoma. After extensive testing we learned that Mattie had four bone tumors in his extremities. It was at that point that discussions about school, soccer practices, and play dates were instantaneously replaced with talk of chemotherapy, limb salvaging surgeries, IVs, and anti-emetics. 

            On August 7, 2008 (only 16 days after diagnosis!), Mattie began his 13 months of treatment including high dosage chemotherapies such as Doxorubicin, Cisplatin, Methotrexate, Ifosfamide, and Etoposide. On October 20 and then on November 12 of 2008, Mattie underwent limb-salvaging surgeries and a bone graft and then on June 15, 2009,  only seven months later, Mattie had his third major surgery, a sternotomy, to remove the nine tumors found in his lungs.

            This is only the list of medical procedures Mattie courageously endured. However, what you should also know was post-surgery Mattie was not only fighting cancer, but he was learning to cope with profound disabilities since he could no longer walk, run, dress or toilet himself. As a result, it wasn't surprising that Mattie developed clinical depression, anxiety, and medical posttraumatic stress disorder, which made his daily existence much more challenging, volatile, and heartbreaking to observe. Though the effects of anti-depressants and anxiolytics on children undergoing chemotherapy are not well researched, Mattie's symptoms were severe enough to require such interventions.

            In August of 2009, after only six weeks off of treatment, scan results revealed that Mattie's cancer had spread throughout his body. At that point, our conversations turned to end of life care, and any discussions or thoughts of a cure simply disappeared. 

            Mattie's battle with cancer and his death has had a profound impact on the lives of my husband and myself. So much so that two months after Mattie's death, in November of 2009, we created the Mattie Miracle Cancer Foundation, a 501(c)(3) whose mission is to address the psychosocial needs of children and families living with childhood cancer. In accordance with this mission, we are hosting our annual childhood cancer awareness walk on Sunday, May 20, in Alexandria, VA. Our goal is to raise $25,000 to give to the Childlife department at Georgetown University Hospital.

            I stand before you today with three hats on. I am a member of the Georgetown Pediatric Parent Advisory Board, I am the co-founder of the Mattie Miracle Cancer Foundation, and I am a licensed mental health professional and educator. In all of my positions, the importance of family centered care is a priority. From my experience, there are four key factors I would like to share with you regarding family centered care. For it is these points which make the difference between a good versus bad hospital experience for many families.

 

            The first factor is the importance of understanding and advocating for the psychosocial issues and needs faced by your pediatric patients and their families. Though sick children are brought to the hospital to be treated for their physical illness, the treatment and the environment can have psychological and emotional consequences on every family member.

            I would like to share two examples from Mattie's experience to help illustrate my point. From the time of diagnosis, Mattie was very scared of CT scans and MRI machines. We discussed these fears with Mattie's oncologist and the importance of sedation during these procedures. However, our disagreement over this issue was resolved ONLY after Mattie and I were accompanied for a scan one day by a Childlife specialist and a nurse. Both professionals reported that scanning Mattie without sedation was inhumane based on his fears. Psychological issues impact treatment, the overall health of your patient, and they most definitely affect the patient-doctor relationship. If children feel you do not understand their needs and concerns and advocate for these needs, they will quickly lose trust in you. Without trust, your effectiveness as a treatment provider is minimal at best.

            The second example pertains to Mattie's development of medical post traumatic stress disorder. After Mattie's second major limb salvaging surgery, he had several difficult weeks of recovery at home. During that overwhelming time, I alerted Mattie's doctors to the behaviors I was observing. Mattie had all the classic signs of PTSD such as difficulty falling or staying asleep, irritability or outbursts of anger, difficulty concentrating, hypervigilance (on constant “red alert”), feeling jumpy and easily startled, nightmares, and was detached from others. Yet despite my best attempt to explain what I was clearly seeing, the thinking was this was just Mattie's reaction to the pain medication. Of course this thinking quickly changed when I brought Mattie in for a clinic appointment and the doctors got to observe Mattie for themselves.

            Children and their family members rely on you to advocate for the psychological support services within the hospital that we need and we also rely on you to diligently and effectively integrate these services as part of the overall medical treatment plan.    

            The second factor I would like you to consider is your role in empowering your pediatric patients and their families in the healthcare process. There are two observations I want to share with you. The first observation has to do with the way a child's scan and procedure results are delivered to family members. I will never forget the first scan result I received, it was delivered in such a horrible way, that I remember it quite vividly today. Mattie was inpatient and I happened to be in the hallway of the PICU when I observed a team of people headed my way. I understood immediately that bad news was about to be delivered. It is my hope that you will consider the importance of how news is delivered and that you will empower your families by asking them ahead of time what format and which professionals they would like in the room with them when they receive scan and procedure results.

            The second observation pertains to the timing of certain tests and procedures. When scheduling a non-emergency x-ray or EKG for example, the medical team needs to weigh the consequences of awakening an inpatient child at 4:30am for this procedure using a mobile machine. Instead, children and families should be empowered to help make the decision as to when these procedures will be performed.

 

            The third factor that I would like you to consider is the importance of providing positive feedback to your pediatric patients and their families and delivering messages without judgment. The daily stresses associated with caring for a sick child are too numerous to mention here, but the positive feedback I received from many medical professionals over the course of Mattie's treatment kept me going on some very difficult days. 

            Receiving feedback is crucial to the emotional health of your patients and family members, but there were times when I perceived the input as judgmental. For example, soon after Mattie was diagnosed with cancer, many of the medical personnel started using the phrase, "new normal." They were trying to tell me that once the initial shock of the diagnosis was processed, I would eventually accept cancer in our lives and find a way to integrate it into our daily living. Though I certainly understand the theory behind this premise, I can tell you that the whole notion of the term "new normal" incenses me especially when relating it to a life threatening illness. There is NOTHING normal or acceptable about your child developing cancer. Your life changes in an instant and as a parent you may find a way to accept this news, cope with it, and continue living, but to think that life will be NEW or NORMAL is insensitive to say to a parent. If given the option, no one would select this "new normal" for their child or their family. Each child and family may interpret your feedback and advice differently, but ultimately what we all can relate to is your kindness, compassion, and humanity.

 

            The final factor I would like you to consider is remembering why you chose the medical helping profession. For so many of your pediatric families who spend weeks and months living in the pediatric wards, you are our only connection to the outside world. Which is why when you interact with us it is imperative for you to tell us your name, what department you work in, and your title, since so many of us do not understand the hierarchy or chain of command within a hospital setting. Medical personnel enter our home, or in other words our hospital room, all day long and we are giving you access to our most cherished possessions, our children, therefore, making the time to connect with us is important and appreciated.

            On September 8, 2009, Mattie died at Georgetown. After we were given an hour or so alone with Mattie, we noticed his nurses, doctors, and support staff began entering his room. When it was all said and done we had at least 20 people sitting in a circle around Mattie. They were there to show their support, to share a reflection on how Mattie touched their lives, and to simply be human. I will never forget Mattie's amazing nurses and doctors, mainly because they were not only competent and skilled professionals, but they were able to connect and help me under the worst of life's circumstances. As a physician your medical care toward a patient may be quantifiable, but what you say, how you act, and make us feel are remembered for a lifetime.

           

            You heard about Mattie's life, now I want to give you the opportunity to see what he looked like. I end my testimony with a video we created of Mattie's amazing seven years. It is my hope you will see his energy, strength, and passion for life in each picture. Pay particular attention to the photos which illustrate his entertaining version of physical therapy and all the other antics he was involved in at the hospital. Thank you for listening and for allowing me to share our story today!

Thursday, April 19, 2012

Thursday, April 19, 2012

Tonight's picture was taken in August of 2009. Linda, Mattie's Child Life Specialist, planned this special evening for Mattie and Ann's daughter, Abigail. Mattie and Abbie were able to go to the Lego store after hours, when the store was closed. They had the whole store to themselves and could build anything Mattie wanted. Literally any Lego Kit. The ironic part was Mattie had and built almost every kit in the store, since this was our form of therapy within the hospital. Legos kept us busy, sane, and talking to each other even under the worst of circumstances. Which is why Peter and I are very fond of Legos. Linda approached the Lego store at the mall and told them about Mattie and about his terminal status. In a way, this was like his one last great adventure, though none of us could bear to think about it that way. As you can see from the picture above, Mattie used his wheelchair to maneuver around the store and secure the Lego bricks that he needed. Mattie decided instead of building from a kit, he wanted to build a NYC bright yellow taxi from scratch. The wonderful Lego team within the store mobilized forces and assisted Mattie and Abbie in this endeavor. This wonderful and one of a kind yellow taxi still sits in our living room today.

Quote of the day: Health is not valued till sickness comes.  ~ Dr. Thomas Fuller


I spent the majority of the day working on Foundation items. Mid-day I got out of our home and went back to the Mattie Miracle post office box. As soon as I walked into the post office, my favorite postal worker greeted me and told me everything was back on track with our mailbox. Music to my ears! I personally thanked him because if it weren't for him the problem would never have been corrected! Don't you know it, as soon as I went to the mailbox, I found more raffle donations inside. Carolyn (our Walk raffle chair) and I are almost laughing now. At first I worried we wouldn't have enough items, and now this couldn't be further from reality!

This afternoon, I went through the walk website that Peter generated and edited it and we made sure it was up and operational. We are now one month away from the third Foundation Walk, and with that it means the start of promotions and advertising. If you would like to see our Walk website, click on the link below, or the "Love of Family" logo on the top of the blog!

https://www.mattiemiracle.com/Home.php


On Friday, I head back to Georgetown University Hospital to give a parent testimony at Medical Grand Rounds. I did this last year, and was asked to participate again. My testimony consists of a 10 minute presentation about the importance of family centered care. This is done in the context of caring for Mattie and my observations of what worked and didn't work through our journey at the hospital. The attendees are doctors and other medical personnel. My verbal testimony is followed by the four minute remembrance video of Mattie that is posted on the blog. Last year's testimony was a very good experience for me, but I have found with my level of exhaustion that it impacts my mood and outlook on things, people, and events. After Grand Rounds, I will be meeting up with Linda (Mattie's Child Life Specialist) and donating all the items that were given to the Foundation in honor of Mattie's 10th birthday. My trunk is filled to capacity, and I have no doubt that all these wonderful gifts will be very much appreciated by families living within the pediatric units.  

Wednesday, April 18, 2012

Wednesday, April 18, 2012

Tonight's picture was taken on August 5, 2009. A day I will never forget. This was the day we learned Mattie's cancer was terminal and had spread to several organs. While we were waiting for the scan results, Mattie and I strolled through the hospital rose garden and also by this elephant covered in tiles which was created by childhood cancer patients as well as nurses and the psychosocial support staff. Mattie liked this elephant because his nurse, Kathleen, created a tile about Mattie and placed it on the elephant. It was a day not to be forgotten because I was an emotional mess and yet had to keep it together for Mattie. Mattie was so sick, couldn't really eat or drink at all, and yet we were pushing him to do physical therapy. I had doctors who thought Mattie was seeking out pain medication or simply manipulating the situation and not eating. However, I knew Mattie better. Mattie wasn't that type of personality. In many ways, Mattie was direct and with me very honest. So I knew in my heart something was gravely wrong with his symptoms even before receiving the scan results. While waiting in the hospital rose garden, Mattie requested to hear the story about the day he was born. While hearing the story, he basically was curled up on my lap, and by that point he was just skin and bones. Yet he too needed an escape, even if it was through a story, to a happier time.  

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


I went back to Mattie's school today to give my lecture on Matisse. After getting used to my style last week, the children knew exactly how I was going to format today's lesson and they really were very engaged and participated beautifully. The format went like this today: I first asked questions about last week to see what kind of retention they had. It always amazes me how five and six year olds retain information. They remembered we spoke about Picasso and they highlighted the following facts.... Picasso was born in Spain, that he was creating art even at their age, that he preferred painting at night and in complete quiet, that his studio was a mess with garbage, dust, and even mice. They recalled that he is considered the master of shapes, was known for his cubist art, and was influenced by his imagination and emotions. Beautiful!!! After the recap, I then went through a PowerPoint presentation with the children about Matisse. They learned about Matisse's life, how he developed his love for art, and they learned that Matisse was considered the master of color, and his style of art was called by the French, Fauve (meaning Wild Beast, due to its raw colors).

The children basically were in a circle for my presentation for 45 minutes. This is a long time to sit still, concentrate, and participate. But they did it quite well and truly got into the art work they were seeing on the screen, as well as hearing stories about Matisse's life. I think one of the best ways to learn ANYTHING is through story telling, and for children it is an ideal way for them to relate to an historical figure. Toward the end of my presentation, I introduced the children to Matisse's art work which he developed in his 70s and into his 80s..... the style was called 'cut outs.' Matisse was diagnosed with cancer later in life and therefore lost his energy and mobility, but not his love of art. Instead of painting, he used colorful paper and scissors and basically transformed the paper into incredible shapes and used them to generate amazing collages, some of these collages actually took years for him to develop. Matisse is the perfect example of how one's physical limitations can't stop one's true passion.

After the presentation, the children had the opportunity to design their own cut out masterpiece. I pre-cut all the paper, using Matisse like shapes, but then they had to use their imaginations to create a collage. Some of the children were so excited and pleased by this hands on project, that they even pulled out extra paper and scissors and designed cut out shapes of their own. I snapped a few pictures for you to appreciate the work that they did today.

This was one of the tables in the classroom. The classroom has four tables like this, and each table had children working away on designing, chatting about their composition, and exploring shapes and color. I gave each of the children a tin of glue and a paint brush. They then brushed the glue onto the paper pieces and arranged away!

At the end of the activity, I snapped some pictures of individual pieces. Unlike last year, this year I also cut out bigger pieces of paper, into circles, triangles, and rectangles. The children really gravitated to these larger shapes interestingly enough before reaching out for Matisse's intricate shapes.

This piece just caught my attention as did the young student creating it. She was one of the students in the class who like Matisse believed in arranging the shapes first to create a composition before gluing. That is an interesting observation because most children at this age, jump right into gluing.

Notice that in this case, this student made a three dimensional cut out, by rolling up a piece of paper and then glued the yellow flower to it. I also love how she took a Matisse blue person and stuck a bunny head to the body. Very clever!

I look at this cut out and it evokes a feeling in me. It tells me that this student likes shapes, perhaps is mathematical, and likes order. To me, art reflects one's personality.

I loved the various three dimensional cut outs this student created and was so intrigued by her work, I snapped a picture of it while she still had her scissor out and was designing.

Once the hands on project was complete, the children got back into their class circle and I introduced them to a favorite french snack, pain au chocolat. The kids absolutely loved it and told me they could eat this everyday! Who could blame them.

From Mattie's school, I then went shopping for Walk supplies and in the process ran into Carolyn our walk raffle chair. We are both very motivated with our baskets this year and it is ironic we have seen each other three days in a row. Before heading home, I went to visit Ann's mom, Mary. Mary and I spent two hours together reading another short story called the Timepiece. It is the sequel to the Christmas Box which I read to her a few weeks ago. Though Mary is unable to speak, I know she is listening, and is following along, and when I entered her room today, she greeted me with a huge smile.

I would like to end tonight's posting with a message that was posted on the blog last night. This message is from a fellow preschool mom, Danelle. Danelle's daughter, Nora was in Mattie's preschool class. Nora was one of the children at Mattie's school who gravitated to me, and in a way we appreciated each other. In Mattie's second year of preschool, his class went every Monday to a nursing home to visit with the older adults and either sing, act, or do a craft with them. Each Monday, I would travel with the class to Goodwin House. I volunteered to help the teachers, but also to get to know Mattie's classmates better. I love older adults, so to me going into a nursing home, is a natural activity. One of the children who requested to walk with me each Monday to Goodwin House was Nora. Mind you our connection occurred in 2006, and I remember it vividly, but I realize young ones may not. However, Nora does! What a beautiful connection. Danelle's email made my night and I am posting it here for my readers. Danelle wrote, "Vicki - you obviously connected with so many of the preschoolers in a very profound way. Nora has a few vague memories of preschool, but she very clearly remembers holding your hand while walking to Goodwin House and asking you to "do things" (her words) with her when you co-oped. When you and Mattie came to our house for lunch/playdate, I remember thinking that I didn't know if Nora was more excited about a playdate with Mattie or having YOU at her house! I think you must have made each of those kids feel very special. I don't think very many adults take the time to do that. Thank you."

Tuesday, April 17, 2012

Tuesday, April 17, 2012 -- Mattie died 136 weeks ago today.

Tonight's picture was taken in August of 2009 in the clinic. That day Peter took Mattie in for his MTP-PE (which was an experimental immunotherapy) infusion. While in clinic, Mattie worked with Brandon (his big buddy in the background of this photo) and his art therapists, Jenny and Jessie. Next to Mattie was a character Mattie designed, built, and invented that day. I introduce you to Dr. Crazyhair! Dr. Crazyhair had feathers for hair, a pipe cleaner stethoscope, and even had an oyster shell in his pocket. The shell represented a patient's TOE NAIL of all things! Dr. Crazyhair is not exactly small, but the good doctor remains in our living room today. Honestly how many kids would create such a character? I don't know, but to me it speaks to Mattie's whimsy and sense of humor. When I look at Dr. Crazyhair now it reminds me of the spirit that was Mattie.

Quote of the day: Fixing and helping create a distance between people, but we cannot serve at a distance. We can only serve that to which we are profoundly connected. ~ Dr. Rachel Naomi Remen


My friend Charlie sent me tonight's quote and it speaks to me, for it is only through connectedness can we really effectively serve, help, and support people. However, becoming connected to a person is not always easy because it involves an investment in time, energy, and commitment.

This type of connectedness I see within our Foundation's Walk committee. Last night, I had a meeting with many of our key committee chairs and walk volunteers. So many of the women in attendance were moms with me at Mattie's preschool or kindergarten. Mattie entered preschool in 2005, and now seven years later, these moms still volunteer their time to help us. Certainly they may volunteer because the Foundation has a worthwhile mission, but I suspect the reasoning is much deeper and gets back to that word.... connected. Preschool and kindergarten are tender times in a child's development, and these fragile times cause moms to bond with one another in very meaningful ways. So if there is any doubt about Remen's quote, I have to look no further than our team of volunteers to see it operationalized.

This morning, I sorted all the coffees, teas, cocoa, bandaids, and crayons that were donated to Mattie Miracle in honor of Mattie's 10th birthday. Later this week, I will be taking all the items to Georgetown University Hospital. We want to thank our supporters for remembering Mattie in this way, and using his memory to help countless families at the hospital. My understanding is that Keurig Kcups are like liquid gold for families who are in the pediatric in-patient units. So I know all these items will be greatly appreciated. While sorting and stacking today, Patches, our calico cat, came over to supervise. I snapped a picture of all the items in total! RATHER IMPRESSIVE! 

Specifically the tally is:

500 pieces of construction paper
544 crayons
113 boxes of kid themed bandaids
678 kcups of coffee
116 kcups of cocoa
154 kcups of tea

I met my friend and Walk Raffle chair, Carolyn, for lunch today. Carolyn and I have been working closely together on this year's raffle since January. However, this is Carolyn's third year chairing the raffle and her sense of humor, level of organization, and dedication to the Foundation are very much appreciated. Carolyn's daughter, Ellie, and Mattie were in the same preschool class and Carolyn was telling me today that Ellie remembers when I would volunteer in her classroom because I was always nice to her. Each Mattie Miracle Walk, Ellie sees her mom working to generate funds for the Foundation, so this year, this soon to be 10 year old, has it in her mind that she too wants to do something and help raise money for Mattie Miracle. Children are so influenced by their parents, and Ellie's inspiration to help I have no doubt is a direct reflection of watching her mom over the years, as well as the fact that she wants to do something in memory of her classmate, Mattie. This is another example of how "we can only serve that to which we are profoundly connected."

After lunch, I went to Mattie's school to set up Donna's classroom for the Matisse session with the kindergartners tomorrow. I finished cutting hundreds of cut-outs for the children to use for their hands on art project and also baked croissants filled with chocolate (in honor of the fact that Matisse was born in France and a popular snack for children is Pain Au Chocolat). So stay tuned for pictures of the children's cut-out creations tomorrow night.

Monday, April 16, 2012

Monday, April 16, 2012

Tonight's picture was taken in August of 2009. Mattie, Peter, and I went outside that night to drive Speedy Red. As you can see, by this point, Mattie's hair was growing back because his chemotherapy treatment ended six weeks earlier. However, only six weeks off of chemotherapy, Mattie's cancer took over his body. What should have been a happy time, being off of chemotherapy, was actually a devastating time. I can't think of anything quite as bad to hear as your child is dying and there is nothing else that can be done. Somehow the disposal of Speedy Red on Saturday has been weighing on my mind, because what it signals to me is that Mattie isn't coming back and frankly I do not think others can possibly understand how profound a loss this truly is.

Quote of the day: It is a common experience that a problem difficult at night is resolved in the morning after the committee of sleep has worked on it. ~ John Steinbeck

Steinbeck's quote resonates with me tonight. I am tired and upset about various different things, so perhaps I need a "committee of sleep" to work on my problems. If it was only that easy! I am too tired to write tonight, so I leave you with thoughts from my mom and Peter. I received a lovely email today from my mom regarding Speedy Red. I have shared that with you below, along with an email communication between Peter and my mom about Speedy Red.

Speedy Red Remembered by Virginia R. Sardi

Speedy Red was on a mission to be with Mattie in his final hours here on earth. It was a motivator that restored the energetic little boy inside Mattie to respond to life, escaping when he could from the physical and mental trauma of being a terminal cancer victim awaiting the final curtain! When the going got rough, he retreated to his oxygen tubes and pain medication to gain a measure of relief from the evil, poisonous enemy within that was slowly invading and wasting away his body, reminding me of a story written by Rudyard Kipling entitled, “The Light That Failed.”  It was a story about an artist going blind but who would not give up his passion for his artistry and fought to use every ounce of his failing eyesight to keep painting till the darkness prevailed. In a similar way, Mattie mustered together his inner resources, inspired by his bright, shiny red electric car that he personally named Speedy Red, for he loved it with a passion, and as the spunky, mighty warrior that he was, learned to ride it in a “New York Minute,” like the natural born driver that he was. Whether handling the wheel, beeping the horn or negotiating turns, he mastered that electric car like a pro. It was remarkable to see him up to the task, sick as he was, and exhibit the joy of living during these last painful days. He took pride in his skill and didn’t think about what was happening to him. He invited me to ride with him a few times, a marvelous experience, and he graciously explained how all its many gadgets worked.  No surprise there for he had always been a “gadget guy!”  Mauro and I were so glad to see the lift Speedy Red gave him, how it released him from his hideous reality, even if but briefly, for it was his dream come true and was what made him smile with joy.  If I can point to any one thing, it would be Speedy Red that truly provided his last moments of happiness on earth.  So I Say with gratitude in a very nostalgic way, “Goodbye, Speedy Red, you will never be forgotten for what you did for Mattie in the final days of his life.” And, may I add, “Well done, Speedy Red!”

After Peter read my mom's message. He sent her an email. Within it Peter wrote, "As the story continues, I had the "pleasure" of dispatching Speedy early Saturday morning all on my own. As you can imagine it was very hard and emotional, but in true Speedy form he fought me at every turn, making nothing easy and making me work for every inch. Even though he was falling apart, Speedy still kicked, fought and battled. The comparisons were obvious, and the battle too familiar, but in the end, we got Speedy to a state where things were resolved. In fact, as I was leaving the loading dock where the dumpsters are, Speedy's radio (yes, he had an in-dash radio) turned on, and real loud, as if to announce his arrival, importance and mission. It reminded me all too well of another character we all know and love. How fitting."

In response to Peter, my mom wrote, "Great description of the demise of Speedy and his tough, fighting spirit just like his owner who also had the stamina for a good fight! I remember the in-dash radio and remember vividly how Mattie demonstrated how it worked, He had figured out how the whole car worked by osmosis!! In every way possible, Mattie was "brainy and a born innovator!" He saw solutions before most realized there was a problem!! That was Mattie and some of it rubbed off on Speedy Red!!!"

Sunday, April 15, 2012

Sunday, April 15, 2012

Tonight's picture was taken in May of 2009. Mattie's art therapists, Jenny and Jessie, created this cape for Mattie to wear at the Mattie March. Jenny took a picture I had taken of Mattie wearing his circus glasses and placed it onto super man's body. Thereby creating "Super Mattie." In many ways, this was the perfect name for Mattie because what he had to endure to fight Osteosarcoma was indeed super human. As our supporters know Mattie Miracle hosts an annual childhood cancer walk every May. This tradition was actually started by Team Mattie, because in the spring of 2009, they planned an amazing "Mattie March" in which hundreds of Mattie's friends, family, and community members came out to support him. Though Mattie is no longer physically with us, I can't help but associate the Foundation walks with the March that symbolized his super fight.


Quote of the day: If you think you can do a thing or think you can't do a thing, you're right. ~ Henry Ford


It is 9pm on Sunday, and we have finally stopped working for the day. Our last task before raising up the white flag was scrubbing and washing our outdoor chairs and tables. All our plants and outdoor furniture were in our living and dining rooms this weekend, as both outdoor spaces were being painted. All this clutter was making me crazy. So tonight, we brought everything outside into our common's space and scrubbed our outdoor furniture and then placed it back where it belonged. I wish this is all we did today, but unfortunately it wasn't.

In the afternoon, we went to the Georgetown University campus to see a lacrosse game. I haven't seen a lacrosse game in my life, but one of the team players (who was in the undergraduate class we worked with in the Fall of 2011) invited us to the game and wanted us to know that the team has a wonderful water boy. The water boy happens to be a childhood cancer survivor at Georgetown, and the team has basically adopted him. What surprised me was the huge turn out of people to see this game, I had no idea that people spent their weekends going to at-home college games. I frankly had no idea what I was watching, but I caught on quickly. However, I gave a lot of verbal commentary about players getting hit with the lacrosse sticks, so I am sure the fellow next to me was probably wondering about me!

We spent the remainder of the day working on the Foundation's walk website and I was also cutting out hundreds of shapes for my Matisse "cut out" session for the kindergarten kids on Wednesday. This cutting of construction paper is a labor of love, because Matisse's shapes are not straight forward. After hours of paper cutting, almost every finger aches. This picture illustrates one of several plates I filled with cut outs I generated today.