Time to celebrate! Our family genuinely loves to celebrate:) We celebrate not just the big, but the small moments in life as well. Why not? There is always something to celebrate. Today is Michael’s birthday! Last year we had a soiree at a local steakhouse with about 40 of our friends to celebrate his birthday. This year will be considerably different. The boys and I will be enjoying a house party…just the three of us. The menu for the day will include Michael’s favorite items…sour patch kids, chewy SweeTarts, and Coke. The boys have been remote learning for the past week due to COVID. Today is their last day of school before Thanksgiving Break. They are diligently working on their homework right now in preparation for the after party. Both are anxiously anticipating the moment that they can bust into the candy and Coke while watching a few movies. There was also some mention of me cutting down a tree in Michael’s honor, while calling friends from the top of the tree. This is definitely something that Michael loved to do. Anytime someone needed a tree cut down, Michael would volunteer to come over with his chainsaw. His technique for cutting trees was a bit scary. He would climb the tree and cut it from the top down…while in the tree. Mike would usually take a break somewhere during the process and call/facetime with friends to show them the beautiful view from the top of the tree. At the time, I didn’t think it was very funny. Perhaps a little more funny now. So when the boys mentioned that I should re-enact Michael’s crazy pastime, I did what every good mother would do….and pretended like I didn’t hear them:)
The 2021 Michael’s Run for Life Festival will take place on Saturday, July 24 and is live for registration. The boys decided to create a challenge to get 37 people to register for the run/walk by midnight tonight. Fitting, since Michael would be 37 this year. As of this morning, we have 27 participants registered! They have been excited to see the number increase over the past few days. I enjoy taking the time to see how each participant has touched our family’s life and share this with the boys. We have been extremely blessed with our family, friend, and community network! As we continue to maneuver through this pandemic, I often remind the boys just how very fortunate we are. They both have amazing teachers again this year that have made remote learning as simple as possible. We try to start each morning off by naming three aspects of our life that we are thankful for. Let me tell you, this can get pretty interesting:) Let’s talk about the chocolate milk and cheerio day. Most mornings we eat eggs for breakfast. Some days I mix it up, just to see what the boys will do. We rarely have chocolate milk in the house….because I would drink it all in a day:) A few months ago, I bought a half gallon of chocolate milk. The boys were charged when they realized that they were getting chocolate milk for breakfast. When I offered to add it to cereal, they thought it was the best day ever. On that particular morning when Karter was asked what he was thankful for, first on the list was “a mother that can cook.” If cooking means adding chocolate milk to cheerios, then the boys may not starve after all:)
On a more serious note, we discuss just how fortunate we are to have our health on a regular basis and we talk daily about how lucky we were to have had Michael in our lives for as long as we did. Often, the boys will ask questions about Michael’s cancer journey. Jaxson, in particular, wants to understand all of the why’s. Our friend, Cheryl, printed off the entire 10 years of Michael’s CaringBridge journal entries, along with pictures…676 pages. Jaxson and I have been reading this together, which has been enlightening for both of us. Jax has a great memory, but he was only 2-months-old when Michael was diagnosed. I think that reading the journal is helping him put some of his memories into context and in turn supplement his understanding of how our journey took us where it did. Karter doesn’t really seem to care about the how and why of the journey just yet. Maybe in a few years he and I will read the journal together.
As Jaxson and I read CaringBridge, the purpose and importance of our journey continues to surface. Soon after starting Michael’s battle with signet ring colon cancer, we gained a healthy respect for what it means to have a rare and aggressive disease. Unfortunately, it took us four years and recurrent disease to decide to attempt to change the course of signet ring colon cancer for other families. The Michael P. Brown Colon Cancer Foundation has now been in existence for almost seven years and due to the ongoing support of our family, friends, community, and other families affected by signet ring colon cancer, we have been able to contribute almost half a million dollars to research being conducted at Seidman Cancer Center in Cleveland, Ohio. Michael and I have been in contact with numerous families over the years that have battled signet ring colon cancer. Although Michael’s battle is over, there are hundreds of other families still fighting.
I spoke with our contact person at Seidman Cancer Center last Friday to discuss the progress. They are not in the clinical trial phase at this point. The research team continues to analyze signet ring tumor samples in an attempt to figure out what makes it rare and aggressive. Let’s talk about the clinical side! A few years ago, we started asking the institution to create a Center of Excellence for signet ring colon cancer. This means that Seidman Cancer Center would be “THE” place to go for those with signet ring colon cancer. This is something that our signet ring community desperately needs. Currently, we are all treated with the “standard of care” as though we have a general type of colon cancer. Unfortunately, the prognosis is much worse and the treatment is suboptimal.
A few years ago, a family affected by signet ring, created a facebook group for colorectal signet ring patients. It has given us the opportunity to connect and move toward a common goal. Some of the people in this group have now had appointments at Seidman Cancer Center, either in person or virtual. Dr. Bajor is the oncologist at this institution. I have not met him in person, but did have a chance to talk to him during our virtual update on the signet ring research earlier this year. He has already evaluated more signet ring patient’s in his career than any other oncologist that I have heard of. Most oncologists have likely only treated one or two signet ring patients in their career. This number may be slightly higher if thee oncologist practices at a major institution. Seidman Cancer Center is not currently providing treatment options that are different than other institutions. However, if they see enough signet ring patients then hopefully they will gain insight via data collection regarding what does and doesn’t work with this cancer. One common story that I hear over and over with signet ring is that the imaging studies did not show any sign of cancer. However, when some type of surgery was needed, cancer was found everywhere in the abdominal cavity. We need better imaging, but first we need to decide what has been done that consistently does not work.
The ongoing discussions that I have been having with Seidman revolve around creating a Center of Excellence, the research, imaging, clinical data collection for research, tumor sample collection from signet ring patients, and making it easier for patients to find/become established at Seidman Cancer Center. Seidman is currently working on adding signet ring colon cancer to a pilot program on an online second opinion platform. This would allow patients to upload their own records into their system. Dr. Bajor would then review the records and decide if the patient needs an in-person appointment or virtual appointment. Seidman will be creating a landing page for signet ring patients that would have a link for second opinions. This is all very exciting news. I have not heard of anywhere else in the world that is trying to create something like this for signet ring patients.
Michael was never a patient at Seidman Cancer Center. I wish we would have thought of the idea of creating a Center of Excellence when we first met the team at Seidman. I suppose that we were a little caught up in our own lives. At this point, I just want to do my part to try to help others affected by this disease have a different outcome than Michael. When Michael was nearing the end of his life, we arranged for a pathologist to harvest tumor tissue soon after his passing. The research team at Seidman arranged for this tumor tissue to be sent overnight to the cancer center in hopes of growing the tissue in the lab. Unfortunately, the tissue was not able to be grown in the lab.
Live tissue from a patient with signet ring colon cancer could help move this research forward quicker. The research team has offered to seek special approval from the IRB to have live tumor tissue sent from outlying institutions. However, there is no guarantee that the tumor tissue would be viable when it arrived at Seidman. Ideally, a patient with signet ring colon cancer would opt to have their surgery at Seidman Cancer Center. More to come on this… We will be setting up another virtual meeting with the research team, likely early next spring. If any of you would like to be involved in this meeting, let me know.
Alright, the boys have finished their homework and are ready for candy, Coke, and movies:) Today we celebrate Michael:) As for tomorrow, Jaxson will turn 11…and we will celebrate some more!!!