I’ll admit that this is a lengthy introduction, but it’s how I got to where I am. If you can’t read it all in one sitting, I encourage you to read some, come back later, and pick up where you left off. I’m not saying this because I want you to know everything I’ve gone through, but because I think it provides an explanation of why I’m doing what I’m doing. The hyperlinks regarding technical jargon will take you to the Wikipedia page for that topic. I know Wikipedia can’t be used as a source for papers and whatnot, but here it will suffice because it provides a good reference for more information if you’re interested.
My name is Ben Rouse, and I’m a Brewers fan. I honestly don’t know what got me hooked on baseball or the Brewers. My parents weren’t big sports fans, and I only attended one game at County Stadium. That was with my Grandparents and uncle when I was in 5th grade. This was the only game, I might add, of which I don’t have my ticket stub. I started attending more seriously after a high school baseball trip to Miller Park in 2002.
Once I could drive myself to games, the number of games attended grew rather quickly. My games attended for the years 2003 to 2011 went like this: 9, 17, 24, 43, 39, 39, 34, 29, 36. I don’t know what it is about being at the game, I just feel like there isn’t anywhere else I would rather be than at a ballgame, to watch the game. I love tailgating, but when I go to a game I’m going to see the game, the rest of it is gravy.
I think it began in the summer of 2006, when I went to 43 games, including 14 away games at 7 other ballparks. I had said that I wanted to visit all the stadiums, but I was only interested in attending if the Brewers were playing. I did attend one non-Brewers MLB game in April 2004, at Dodger Stadium, when I was visiting California on spring break my junior year of high school.
During the summer of 2006 I started thinking about the possibility of attending all 162 games of a season. I’m not sure I told anyone about it because it was just that, a thought, a crazy one at that. I wasn’t sure if it was possible, or if it would even be something I would want to do. As time passed I realized that it was something to do when I retire, or if I won the lottery. I didn’t think about it much after that, because other concerns soon became more important.
In February 2007 I attended the Brewers Arctic Tailgate, where fans camp out at Miller Park to purchase single game tickets. Opening week coincided with Spring Break during my sophomore year at UW-Madison, and I was planning on attending the first 6 games of the season, against the Dodgers and Cubs. Brewers on Deck took place on Sunday, April 1st, the day before the season began. I attended the event and spent some time chasing baseballs in the right field loge bleachers, which Prince was littering with home runs. I happened to bump my leg on one of the bleachers in the process, and acquired a small gash on my left inner thigh, just above the knee. I didn’t think anything of it and went about my business.
Opening day came and went (my first Opening Day), and the Brewers easily dispatched the Dodgers 7-1. Ben Sheets pitched a complete game 2-hitter, and retired 22 straight batters at one point; what a way to start a season. That night, after watching Florida beat Ohio State in the NCAA National Championship Game, I became ill. I wasn’t able to even keep water down. My fever swelled to 105.7 degrees, and I just thought it was some sort of nasty stomach virus. After talking with a nurse on Tuesday, I was going to try and attend the Brewers game that was scheduled for that night. I went to my scheduled haircut that day but wised up and didn’t go to the game, even though I desperately wanted to. I was afraid of throwing up at Miller Park and being ridiculed for being drunk, but I obviously had not been drinking.
The fever and sickness continued, along with redness surrounding the gash on my leg. On Wednesday I saw a doctor at a local clinic, had blood drawn, and was prescribed some meds. A few hours later I received a call with instructions to report to St. Mary’s hospital in Madison immediately. They wouldn’t say what was up but I figured it was something a little more serious than the flu.
Upon reporting to St. Mary’s and checking in, I anxiously (albeit sickly) waited the diagnosis. A doctor came in, introduced himself, and said very plainly; “You have Leukemia”. If that’s not a punch to the gut, I don’t know what is. I later learned that it was Acute Promyelocytic Leukemia, or APML. The doctor said that if I was going to have Leukemia, this was the kind to have. APML does have some of the better survival rates, so that was a positive to take away. My experience, however, did not follow the same path as most. You can do some additional reading of your own, if interested, but APML is when the 15th and 17th chromosomes translocate bases, which prevents blood cells from maturing. The exposed wound on my leg led to cellulitis (a type of infection) due to my body not having enough infection-fighting white blood cells.
I spent 5 weeks in the hospital receiving chemotherapy treatments and recovering, all while losing 35 pounds. My first day out of the hospital was May 8th, and the Brewers happened to be playing the Nationals later that day. I seriously considered attending that game but thought better of it. My first game after the hospital stay came on May 18th, an 8-1 loss at the hands of the Twins, and one of the few games that I left without seeing the final pitch. I was cold, uncomfortable, and felt like everyone was looking at my newly bald head, and skeleton-like-frame. I got over that quickly and in June I drove to Texas with some friends to see the Crew play the Rangers. We then drove to Detroit to catch 2 of the games there, and witnessed the Verlander no hitter in person. It was exciting to see a no-no, and depressing at the same time, since it was against the Brewers.
Throughout the summer of 2007 I received more chemotherapy to try and induce remission. My doctor had said that about 80% of APML patients go into remission with the induction chemo, which I got in the hospital, and the consolidation chemo, which I received on an outpatient basis during the summer. As I returned to UW for my Junior year, I started intravenous Arsenic Trioxide treatments, along with a medication called All-trans retinoic acid (ATRA), both proven to help get APML patients into remission. Most patients achieve remission after 45 days of Arsenic Trioxide treatments and a daily dose of 90 milligrams of ATRA. My body, of course, was stubborn, just like it’s owner. After 60 days even more patients are typically successful in reaching remission. But after 60 days remission hadn’t been achieved and we began looking for bone marrow donors. I have two sisters, who each had a 25% chance of being a match, but neither were. The doctors started searching the bone marrow donor registry while I continued Arsenic Trioxide treatments to at least prevent a complete relapse.
In April of 2008, after a total of 100 days of Arsenic treatments, and weekly EKGs, because the treatments can cause heart problems, it finally went into remission. I was relieved for many reasons, including not having to spend 3 hours of my day getting treatments on the west side of Madison, while still taking classes full time at UW. For maintenance therapy I continued Arsenic for another 25 days, and the doctors agreed that an autologous bone marrow transplant was the way to go. This is where they harvest a patient’s own bone marrow cells, give them high doses of chemo and radiation, and then return the cells to reinforce remission. I prepared for the transplant, which required injecting some filgastrim below the skin for 3 days. I was still going to Brewers games at this point, and recall injecting myself in the abdomen while waiting in line at Miller Park for tickets at the end of May. The filgastrim is used to increase the number of hematopoietic stem cells, which help create all types of blood cells. These cells reside in the bone marrow, where blood cells are created, but when there’s an abundance of them they “spill out” into the bloodstream. It was an easy procedure and is really just a glorified blood donation. I was at the hospital for a few hours, and they withdrew blood from one arm, ran the blood through a machine that filtered out the cells, and returned the blood in my other arm.
While preparing to enter the hospital, I learned that the insurance company had rejected the request to cover the autologous transplant. They believed it should only be used if it relapsed, and since I was in remission, it should not be used. It was unfortunate that I had gone through everything to prepare for the transplant, but had the rug pulled out at the last second. I did, however, somewhat agree with the ruling, and was OK with trying to move on as is.
My doctor thought that since a transplant wasn’t going to be performed, we should try more Arsenic Trioxide treatments as maintenance therapy, which had been done previously for patients in similar situations. The regimen called for 150 more treatments, consisting of treatments 5 days a week for 5 weeks, 2 weeks off, and then repeat. This began on June 30th 2008. I had a portacath placed on July 3rd, since my veins were shot from getting all the Arsenic Trioxide treatments using just IVs that were placed and removed every day. Nurses had recommended a portacath earlier in the process, but I was stubborn and didn’t want some sort of protuberance on my chest, and I resisted. I gave in and it made the treatments much easier, and made me regret not getting one put in earlier. I went back to school in the fall to begin my senior year at UW and continued treatments as I went to class.
I was wrapping up the maintenance regimen of Arsenic Trioxide in the spring of 2009 when another bone marrow biopsy was performed, to make sure that the Leukemia was still in remission. Bone marrow biopsies involve extracting bone marrow from the hip to do analysis at the molecular level. The results of the biopsy were returned, and in April I was informed that a relapse had occurred. Back to the drawing board we went and the search was on for a matching bone marrow donor once again. As the search process progressed, I continued Arsenic Trioxide treatments daily. I haven’t contacted the Guiness book of world records, but my doctor and I think the 300 plus Arsenic Trioxide treatments I wound up receiving in total, is some sort of record.
A perfect match was not found amongst the 10 million plus donors listed in the registry. We turned to the cord blood registry and were able to find two suitable cord blood units. Cord blood also contains the hematopoietic stem cells I discussed earlier. Adults receiving cord blood transplants require two cord blood units, due to the small amount of cells in each unit. I prepared for the transplant and while doing so planned one last trip to see my sister in San Diego. The fact that the Brewers were playing there at the time I was visiting was just a coincidence, or was it? Many things are done prior to a transplant, and one is undergoing a spinal tap, which tests the spinal fluid to ensure there aren’t any leukemic cells circulating. This is done because the chemo and radiation that is performed for a transplant might not destroy the cells in the spinal fluid. I wasn’t able to get this done before my trip west, but the doctors weren’t concerned and said they would perform the spinal tap the day I was admitted for the transplant. The trip to San Diego was a success (I ended up only going to one game, but it was the only game they won in the series).
I returned home August 5th, 2009, and was admitted to UW-Hospital (in Madison) that morning. As the spinal tap was being performed, where a needle is inserted into the spinal fluid, I distinctively remember hearing a doctor instruct the performing doctor; “No, you should really do it like this”. Oh the joys of teaching hospitals. I was to begin chemotherapy the following day, once the spinal tap was tested and cleared. I learned on the morning of the 6th that the spinal fluid was in fact not free of leukemic cells. We started intrathecal chemo that day, where chemotherapy drugs are injected directly into the spinal fluid to eradicate the leukemic cells. Twice-a-week treatments ensued and the number of cells gradually decreased. The cells were not completely eliminated, and my doctor recommended we start directed radiation.
To be honest, nothing was too difficult up to this point, while it was time consuming and annoying to go through all the treatments, I understood it had to be done and I was participating in something that was keeping me alive. The cranial and spinal radiation that followed was the most mentally challenging part of the whole ordeal. The treatments themselves lasted 100 seconds; 20 seconds on each side of the head, and 20 seconds directed at 3 sections of the spine. 100 seconds doesn’t seem so bad, but set up time was lengthy. What made it so bad was that I had to lie face down on the table, with my head strapped to the table using a custom fitted plastic restraint. It was formed by stretching heated plastic over my head to ensure a snug fit. This is necessary and enables them to direct the radiation exactly where they want it. They place indicators on the body and everything is aligned with lasers. The face support that I rested my head on dug into the bridge of my nose and my chin as I laid there. It is definitely my least favorite memory of this whole ordeal, I can’t imagine how claustrophobic people can go through with it. The radiation did help provide this though; the only picture of me in a hospital at any point during my battle with leukemia.
This was taken after the directed radiation was successful, and the transplant process began. The red strip down my chest is burnt skin….. from radiation that was directed at my back. It still just boggles my mind that I’m alive after all this. The radiation was strong enough to burn/irritate my skin on the other side of my body.
The spinal and cranial radiation was successful, as previously noted, and I was admitted for the transplant on September 23rd, 2009. Before I could receive the umbilical cord blood from the two extremely giving families, we had to completely destroy my bodies’ immune system, and that we did. I got high doses of chemotherapy for 3 days, and also received total body irradiation to kill any leukemic cells in my body. The radiation required me to sit on a table, across the room from this giant machine, which I swear was trying it’s best to eliminate my existence, or so it seemed. 20 minutes facing one way, 20 minutes facing the other way, twice a day for 3 days. I don’t know what the smell is when radiation is being performed, but it’s something I will never forget. I don’t care who your favorite team is, I would not wish that experience on anyone. After the chemo and radiation regimen was complete I received my new hematopoietic stem cells on October 2nd, 2009, and spent the subsequent months recovering.
I was feeling healthy enough in the spring of 2010 to attend 19 of the first 25 Brewers games, including a game in Chicago, 3 in D.C., 3 in Pittsburgh (which includes the infamous 20-0 game), and 3 in San Diego. During the transplant I was unable to attend classes, and I needed just 9 credits to graduate. In June 2010 I returned to UW-Madison and wrapped up my bachelor of science in Economics by taking 3 accelerated courses in an 8 week span. When I was diagnosed I had some legitimate doubts about making it to graduation. I could not have been more proud the day of my last exam, in August of 2010. I walked in the winter commencement in December of 2010. The picture below was taken after the ceremony; my sister Becca is on the left, and my mother Sue is on the right.
2011 and beyond!
I found a job in January of 2011, began thinking about attending all 162 games of a season, and possibly going for it in 2012. The 19 games in 28 days was draining in 2010, so I wasn’t quite sure how 162 games in 181 days was going to go. I came to the conclusion that I was up for the challenge. I told people about my goal for the first time in August, and my friends kind of laughed and said it would be cool, but weren’t sure if it could be done. I anxiously awaited the schedule release date of September 14th. I woke up at 3 am that morning and checked the internet on my phone to see if it was released yet, it wasn’t. Later in the day I got a hold of the schedule, and soon decided that it was possible. I’m a somewhat frugal person to begin with and had been saving since I started my job, which allowed this goal to go past the planning phase. In November I got really serious and devoted countless hours planning and researching flight schedules and deciding when to buy. In December I contacted the Brewers, to see if they wanted to be involved in any capacity. They graciously met with me at Miller Park in January, and a few weeks later decided to help me out. Besides providing additional tickets, a per diem, and apparel, the fact that I could reach more people through their media channels intrigued me, and we came to an agreement. Whatever comes of this season, and however many people learn of my story, and try to help grow the Be The Match Registry, the Brewers will undoubtedly be deserving of a lot of the credit. Their giving attitude speaks volumes of the organization, and the types of people it employs.
In regards to my current situation. I haven’t experienced any major setbacks since the transplant, and am looking forward to the future. My most recent bone marrow biopsy was performed in October 2011, and came back negative. The greatest risk for relapse occurs within the first 5 years post-transplant, and I’m about halfway there. After 5 years the chance of relapse drops to about 10%. The amount of chemotherapy and radiation I received increases my risk for many other ailments, and have already developed some problems with my joints. I won’t dwell on the negatives though, and I’m excited to be alive and able to tell my story while trying to provide others with the same opportunities I have had.
Whew!!! I did not think my backstory would encompass over 3,000 words. If you stuck with it, congratulations, you now know what I’ve spent the last 5 years of my life doing. I also hope that my story has opened your eyes to what happens to people when they’re diagnosed with Leukemia, or any cancer for that matter. I’m specifically trying to raise awareness and funds for the Be The Match Registry, which is where donors are matched to patients in need.
Over the past 25 years, Be The Match has helped make more than 50,000 transplants possible. About 70 percent of patients do not have a match in their family, and turn to Be the Match to assist in the search for a suitable donor. You can be the one to save a life by joining the Be The Match Registry as a potential marrow donor. Visit BeTheMatch.org to join online today. Other opportunities to support patients include donating cord blood, making a tax-deductible contribution through Be The Match Foundation and volunteering time. Be The Match relies on contributions and grants to help cover the $100 cost of adding each new member to the registry. We encourage everyone to make a gift if they can. Any amount helps. You can donate directly from my donation microsite that was created for Brewers Mission 162.
Thanks for reading, and Go Brewers!