Friday, May 20, 2011
Tonight's picture was taken in May of 2008. Only two months prior to Mattie's diagnosis. What I remember about May with Mattie, was his tent caterpillar collections. He would come home from school with lots of caterpillars. We would put them in a jar, feed them oak leaves, clean out the jar every couple of days, and watch these fellows eat, spin a cocoon, and then transform into moths. We did this for several years. In fact, just last month Peter was helping to clean up and threw out one of Mattie's caterpillar jars. I saw it in the trash and I immediately pulled it out. At the time when Mattie was alive I really did not like the whole caterpillar thing. But now that he is gone, I miss this spring ritual we did together.
Quote of the day:
Tearless grief bleeds inwardly. ~ Christian Nevell Bovee
I began my morning bright and early. At 5:30am to be exact. Really NOT my hour. I got to the Hospital by 7:15am, and the irony is I know my way around the hospital as if it were my home. That is because it was my home for over a year. When we first came to Georgetown University Hospital in July of 2008, I couldn't find my way from building to building. I was so disoriented that many times if I had to traverse from one building to the next, I would go outside and walk the periphery of the building. Now however, I know all the hallways that connect from one place to another. A scary notion! I also can't help but remember what life was like living in the hospital. In fact each time I return there now, I know that at the end of my visit, I can leave there and go home. Unlike the hundreds of patients who are not as fortunate.
The presentation went well today. I had the opportunity to present with Brad (a brother of an Osteosarcoma Survivor) and Sarah (the mother of premature twin daughters). Featured in the picture are Brad, me, Shannon (the coordinator of the Family Centered Care Grand Round), and Sarah. In attendance at the event were also several of Mattie's nurses and one of Mattie's PICU residents. It is hard to believe that Amanda is now graduating, but it was evident to me that Mattie impacted her life. I have a feeling for those medical professionals who interacted with Mattie, their perspectives on the effective way to treat a patient has been expanded. Mattie had a way of making those around him rise to the challenge. Amanda was definitely one of our great residents who just got Mattie.
We also saw Mattie's case manager, Catherine (who processed all our insurance claims and helped us in extraordinary ways get all the in home medications and equipment we needed), and Mattie's social worker, Denise, who grew to love Mattie. Mattie's picture is still on her wall of fame. Meaning she felt he was going to grow up and accomplish great things! We also saw Ashley. Ashley is now a nurse educator, however, at the time she was a PICU nurse. Mattie happened to like Ashley and whenever she was working, he would try to find a way to capture her attention. We recalled the time he had us blow up a glove balloon and attach it to his remote control car. He then sent the balloon down the hallway on the car with a message on it reading.... I love Ashley.
There were several ah ha moments today. I realized it was challenging for my parents to revisit the hospital. I naturally do this every month at least to attend board meetings. I have had to absorb the feeling of being back in this environment and passing by places we were with Mattie during treatment. It isn't easy, but I put it somewhere each and every month that I visit. I do not realize just what I put myself through, until I observe it in someone else. For my parents, being back at Georgetown, hearing my speech and then seeing Mattie's video was overwhelming. I understand their feelings and do internalize how this makes me feel.
I addition the other ah ha moment for the many of the medical personnel today was that the pain we (meaning parents of a sick child) experienced doesn't end once it is over. For many of us, whether our child survived or died, the pain continues. It is a part of us and it is a lifelong struggle. I understand this completely, and therefore I sometimes assume others working in the hospital get this as well. But this isn't the case. Which only furthers my case, regarding the importance of psychological and emotional support and follow up post treatment.
I included my speech below in case you want to read it. This is the 11 minute speech. For those of you interested in reading the 30 minute speech which is much more poignant, just let me know. As Saturday approaches, it means we are only ONE day away from the Walk!
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Testimonial at Grand Rounds - May 20, 2011
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 palliative care and 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 pediatric cancer awareness walk this Sunday, May 22, in Alexandria, VA. Our goal is to raise $20,000 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.
FIRST FACTOR
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.
SECOND FACTOR
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.
THIRD FACTOR
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.
FOURTH FACTOR
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 within the hospital 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!
Saturday, May 21, 2011
