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!