Tonight's picture was taken in March of 2005. Mattie was almost three years old! What were Peter and Mattie doing in this photo? Being a cockroach of course!!!! Mattie had a fascination with bugs. Particularly roaches. I think he loved my whole reaction to the mere mention of a bug, which was why he told everyone he loved bugs!!! I can't tell you how many nurses he tried to scare in the hospital with all of his plastic bugs. He was a total character.
Quote of the day: It's always something, to know you've done the most you could. But, don't leave off hoping, or it's of no use doing anything. Hope, hope to the last! ~ Charles Dickens
This week I learned that a close friend of mine has stage IV ovarian cancer. What does stage IV mean? Well cancers are typically diagnosed in stages, which signals how aggressive the disease is and staging helps to direct treatment. If you want specifics about how cancers are staged, I included some information from ASCO's website.
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Doctors commonly use the American Joint Committee on Cancer’s (AJCC’s) TNM system to describe a cancer’s stage. Doctors use the results from tests and scans to answer these questions:
- How large is the primary tumor? Where is it located? (Tumor, T)
- Has the tumor spread to the lymph nodes? If so, where and how many? (Node, N)
- Has the cancer spread to other parts of the body? If so, where and how much? (Metastasis, M)
Listed below are the general descriptions of the TNM staging system. However, each type of cancer has a separate TNM system. Learn more specific staging information for each type of cancer.
Tumor (T). The letter "T" plus a number (0 to 4) describes the size and location of the tumor, including how much the tumor has grown into nearby tissues. A larger tumor or one that has grown more deeply into the surrounding tissue receives a higher number. For some types of cancer, lowercase letters, such as “a,” “b,” or "m" (for multiple), are added to the “T” stage category to provide more detail.
Node (N). The letter "N" plus a number (0 to 3) describes whether cancer has been found in the lymph nodes. It may also describe how many of the lymph nodes contain cancer. Lymph nodes are tiny, bean-shaped organs that help fight infection. Regional lymph nodes are located closest to where the cancer began. Distant lymph nodes are located in other parts of the body. Most often, the more lymph nodes with cancer, the larger the number assigned. However, for some tumors, the location of the lymph nodes with cancer may determine the “N” stage category.
Metastasis (M). The letter "M" indicates whether the cancer has metastasized, or spread, to other parts of the body. If the cancer has not spread, it is labeled M0. If the cancer has spread, it is considered M1.
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Naturally I am not happy that my friend is dealing with cancer. But I knew she needed a second opinion. Fortunately I know one of the top gyn-oncologists in our area. Shortly after Mattie died, I had my own cancer scare which I dealt with for two years straight. Thanks to the help of Dr. Abbie Fields, my problem was resolved and like she suspected I did not have cancer. However, another hospital evaluated a CT scan of mine and in the report wrote possible cervical adenoma malignum. So once it goes it writing, it has to be followed up on. To this day, I would love to meet this radiologist who made this diagnosis on paper. He caused great havoc in my life for years. Even today, I still have that fear in the back of my mind.
Abbie is the chief of gyn-oncology at Sinai Hospital in Baltimore. Going to Baltimore is not around the corner, it actually is a trek, as it is a 90 minute drive each way. But worth the visit! When I came home today, I wrote an email to the CEO and President of the Hospital (which you will find below). I have gotten the chance to meet both of these men, as Mattie Miracle is in the process of creating a child life program fund at Sinai.
This brought a smile to my friend's face, because it is humorous! So now she is hash tagging... #bearoach!
This photo captures the roach Mattie painted on a ceiling tile in the Hospital's outpatient clinic. This painting was up for a couple of weeks and then disappeared. Most likely because it scared families. I am still upset that the hospital did not give me this tile to keep. Nonetheless, Mattie would have loved Dr. Field's motto for today... be a roach! So I sent this photo to my friend to remind her of the hope that the doctor instilled in all of us today.
NOTE TO SINAI HOSPITAL:
Dear Neil and Jonathan,
I wanted to share my positive experience today at Sinai Hospital. I realize patients, families, and donors may contact you only when there is a problem. In my case, I like to communicate both the positives and the negatives.
As you know my October 30th meeting with X., Y., and Z. (I removed the names for this blog posting), did not go well. I left your institution very disillusioned. Given that Mattie (my son) was treated for Osteosarcoma at a major cancer center in the Washington, DC area and we lived in a hospital for over a year, I have come to understand the workings of medical institutions very well. Maybe not from an administrator's standpoint, but from the lens of the consumer. In addition, my experience running a cancer non-profit for 8 years, allows me the insight to know that administrators, physicians, and patients are not always on the same page. Which is why Peter and I pulled funding from the last institution we supported. It was a very hard decision, which is why I am overly cautious about the next institution I choose to support.
I am glad we will have the opportunity to meet Jonathan on February 26. Because I was concerned about what I was hearing in the October meeting. I hope to learn more about the administration’s perspective on patient care and to me this means much more than just the medicine. Quality medical care is not simply the value or cost of providing care, but instead must consider how the care is delivered, the empowerment of the patient, and addressing and meeting the psychosocial needs of the patient and the family. Only when medical and psychosocial care are well integrated can the quality of life of the patient increase. As we know enhancing quality of life has been found to positively impact treatment outcomes. Physicians are crucial to helping meet the psychosocial needs of their patients and families, and I look forward to hearing how Sinai empowers the physician to provide such integrated care. I heard enough in the October meeting to pause and question whether the administration values this at Sinai.
Which leads me to today. As you know Aziza Shad helped Mattie at the end of his life and was the physician on call the day he died. I think the true testament of a physician is watching her operate under such dire circumstances. You aren’t going to find a better or more dedicated pediatric oncologist like Aziza, who literally returns text messages instantaneously from all over the world. To this day, if I have a medical problem, and I am an adult, I immediately contact Aziza. I think that speaks volumes.
However, what you may not know is I also have a long-term relationship with another doctor at your Hospital, Dr. Abbie Fields. Like with Aziza, I started working with Abbie when she was part of the MedStar system. Shortly after Mattie died, I had a cancer scare of my own. I literally consulted with five different gyn-oncologists, at all the major cancer institutions in our area. In my case, there were no clear-cut answers and I literally got five different opinions about what to do. Given that I just lost my son to cancer, I was in an absolute panic and quite sure I was going to die too. I received all sorts of advice from having a full hysterectomy to take the wait and see approach with constant scanning.
Ultimately, I decided to work with Abbie. Why? Because through our interactions I came to value and trust her opinion. She was able to help me for two years straight and at the end of the day, Abbie’s clinical judgment was correct about my case. Trust is not something I give away easily especially in the medical profession. However, with each visit and consultation I had with Abbie, I felt like she was in this for the long haul with me and wanted to arm with as much of the facts about my case as possible, so I felt empowered in my own care. Like Aziza, Abbie is also very patient centered and returns calls and emails immediately. That is beyond refreshing in the healthcare industry, and I think it speaks volumes that such fine physicians work at Sinai. They both have a way of making you feel like YOU ARE IMPORTANT, and your case is on the forefront of their minds. Patients want and seek physicians like this! Even if it means driving two hours to come to Sinai.
I visited Abbie’s office today, not for myself, but for my friend who has been diagnosed with stage IV ovarian cancer. My friend received this diagnosis on Wednesday. When my friend asked me who she should see for a second opinion, it was a no brainer. She had to see Abbie. In fact, I told my friend she couldn’t move forward with chemo, without consulting Abbie first. I literally text messaged Abbie on Wednesday and within minutes she called me and scheduled an appointment to see my friend today. Abbie spent two hours with all of us today, took an in-depth history, answered questions, and took a sincere interest in the life of my friend. Besides Abbie’s competence and stature in her field, she also provides her patients with compassion, humor, and hope. Today’s visit was priceless, because for a moment, I saw my friend release the fear she had about her diagnosis and embrace the process ahead. This only happened because of she sat before a skilled physician. A physician that values not only the medicine, but the human being sitting before her.
This is a long-winded message to say thank you for bringing Aziza and Abbie into your Sinai family. As you know most of us in DC, don’t like long commutes to see our physicians. But when you have outstanding physicians like Aziza and Abbie, people will make the trek. As I have learned over the years, what makes a hospital system great is not just providing outstanding medical care, but ultimately what patients and families REMEMBER about the institution is HOW that medical care made us emotionally feel.
Sincerely,
Vicki
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