Happy Birthday Michael!

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!!!

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Do you ever wake up on a Sunday morning and think “wow, that was a crazy week?” Crazy because you were able to fit soooo much into the week, but really don’t remember much of it… This is a common occurrence in many of our lives. Some people talk about being busy as though they are proud that they are busy and are somehow surviving it. Some people talk about being busy as though it is something that they cannot escape. In a matter of a few weeks, this way of life has been flipped over for many. Now we hear people talking about being bored and frantically trying to find the next good Netflix series to binge watch. Meanwhile, healthcare workers and other essential businesses attempt to continue to work in a manner that keeps themselves and others safe. For the workers that are not in “essential” jobs and have been living paycheck to paycheck, the financial stress alone can be overwhelming. It is during times like this that perhaps we are able to gain the most perspective in life…if we take the time to be silent in the midst of chaos and examine our lives.

When the whisperings of COVID-19 first emerged, I found myself straining to remember the many conversations that Michael and I jokingly had many years ago. During his chemo sessions he would entertain himself with a variety of Netflix series. One of the series led him to creating quite the elaborate strategy for a zombie apocalypse😊 I was always much more interested in strategizing how to organize life in such a way that our family could complete our long list of tasks for the week and still fit in a ton of fun. As I made my usual weekly trip to the grocery store on March 13, I realized that the landscape around me was changing rapidly. The canned vegetable isle at Aldi had nothing but creamed corn and beans, while the toilet paper, cleaning product, and water isles were completely empty. As I watched the people around me, I noticed that many seemed to be panic buying large amounts of everything. Our family’s 10-year cancer journey taught me many lessons. One of the most important was to hope for the best, but prepare for the worst. We knew the likely end outcome for Michael from his initial diagnosis, but it did not mean that we were not going to fight to make it different…and it definitely did not mean that we were going waste the uncertain amount of time that we did have. Whenever our cancer journey lead us down a new path, we never knew where it would end. However, we always felt better when we had a plan. We agreed that we never wanted to look back an think “what if?” It gives our family a sense of peace at this time to know that we did absolutely everything that we could for Michael. We have no “what ifs.”

So how does this related to our current situation? We have no reason not to be hopeful…not hopeful that life will return to normal. Rather, hopeful that life will return to a new normal. The lessons that we learn from this difficult time, will make us stronger…if we allow it to. We must continue to prepare for what may be even more trying times ahead. We must look to help our neighbors, those less fortunate, and indeed, anyone in need that we are able. We must live in a proactive manner rather than a reactive manner. Why wait until our friends and/or family are sick before we decide to social distance to the max? Why wait for COVID-19 to be surging through our communities to start ordering our groceries online and picking up curbside? Why wait to call that old friend or family member that you haven’t seen in years? If a person is not an “essential worker” this is the time to get some of those projects completed that they have been wishing they had the time to complete. This is the time to take a daily walk, learn a new language, clean out that closet, make a plan for that new business idea, paint the spare bedroom, and most important….spend true quality time with those that live in your house. 

The Brown Family has been working out, organizing bookshelves, cleaning closets, learning how to cook, and spending a lot of time outside. The boys have spent many hours jumping on the trampoline, playing basketball, soccer, riding bikes, coloring with sidewalk chalk, and playing in the treehouse. We cleaned the leaves out of the batting cage, busted out the pitching machine, and hit hundreds of balls. We successfully burnt the leaves without burning down our house, the neighbors houses, or even the tree house that is dangerously close to the fire pool that Michael built. We got the lawnmower running, which required use of the air compressor and jumper cables…yes, scary😳  Jaxson even learned how to mow…a privilege that he has been begging to attain! He completed the mowing adventure with just one large hole in the batting cage net. We can call this a win when comparing it to my lawn mowing saga a few years ago:) Some of you may recall round one of me learning how to use a riding lawn mower following one of Michael’s big surgeries. Perhaps I ran into the tree multiple times, eventually leading to the hood of the mower falling off, perhaps the hood was then run over, and maybe the fence was inadvertently ripped from the posts surrounding the garden. Michael thought this was quite hilarious until the mower literally stopped running:) We just want to give the neighbors some entertainment while they shelter in place!  

As for the cooking, Karter loves to help and he is progressively improving. We find less shells in our eggs each morning and the toast is no longer black. I discovered that Karter can make a pretty mean peanut butter and jelly sandwich….and also that he thinks that it is called a “PPJ.” When I told him it was PBJ, he looked at me like I was crazy:) The boys both helped me make homemade French fries in the air flyer a few nights ago. They liked the French fries much more that the collard greens that we had last night! Nancy O dropped some delicious food off last week and the boys literally cheered. Not even a pandemic can stop Nancy O from cooking! The boys question me frequently regarding why I am not able to make food taste as good as Nancy O. I do have a new recipe that I have been taunting the boys with. We have a neighbor’s cat that has been bringing us mice for the past week, so I have promised our neighbors and the boys a mouse pie😏  

Tomorrow, e-learning/distance learning will resume for the week. We are extremely lucky to have such awesomely ambitious teachers in Germantown Hills. They really have made the process as easy as possible and the boys are both enjoying their learning. However, they definitely both miss their friends and teachers. So in this extreme time of uncertainty, we reach for what is certain. That is the love and compassion of our friends, family, and community. Together we will move forward on this uncharted path where we will come out forever changed. The more we can be prepared and less scared, the more we can learn and grow. If we each do our part, then perhaps we can all make it through this experience without thinking “what if.”

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