Len was in room the night before the moved to Vanderbilt and said “I found Andy standing at the sink saying “I don’t know who I am! – I don’t know where I am …” Len called the nurses immediately. The entire floor staff came to the room. They cared about Andy like he was part of their own family. They got him calmed and back in bed quickly. They knew he would need to be rested in prep for the move to Vanderbilt via ambulance in the morning. It was later determined to be reaction to medication. Sunrise came and as Andy was wheeled from his room the staff of UT Hospital floor nurses wept as he left. Len remembered one of his favorite nurses that morning “She was going off shift and we rode down the elevator together.” She looked at Len and said through tears “We’re not supposed to get emotionally involved” but “We are all going to miss him”. This same nurse had earlier in his stay brought him a special serving of watermelon, one of his favorites – another hospital rule broken.
Early on I really wasn’t aware of just how sick Andy was. He would never complain about it. Andy came over to play Pinball several times while he was undergoing chemotherapy at UT and I began to see the impact of MDS on his body. He was visibly slower in his reaction time on the games, tired a lot easier and would sit at our counter stools rather than stand -but he was always Andy. Always upbeat and never complained. By the last time he came to play, the hospital had inserted a port below his skin to make chemo and blood draws easier on him. He told me how much better it was than being stuck by needles up to 10 times a day. I remember his last visit vividly. We didn’t play much Pinball. We sat around the kitchen counter and talked. Andy told me a few more details about the potential bone marrow transplant that he was now a candidate for. He and Len talked about Andy’s brother Matt being a perfect match and how Matt was “all-in” for the transplant, and ready to do anything for his brother. We talked about some heavy stuff that night, but it was never a somber atmosphere. Andy was calm. Andy was determined but not in a defiant way. He seemed at peace. We talked a little more until it was clear it was getting late. It was Len that noticed how exhausted Andy was and said it was time to go. It was the last time I saw Andy in person and as I write this, the first moment I realized that.
“We’re going to miss him” – Andy moves to Vanderbilt
I asked JoAnne to describe their stay in Nashville at Vanderbilt Hospital. “On May 2nd we moved Andy from UT Hospital to Vanderbilt by ambulance. He had developed pneumonia and needed specialized care for his Leukemia. Once we arrived he was placed in the critical care unit on the 10th floor. Andy made friends with the staff immediately. We didn’t know if then, but it was going to be over 3 months of setbacks and health scares before Andy would finally stabilize again.”
Troubles started almost as soon as they arrived. On May 23rd, Andy was discovered to have trouble breathing. He needed an operation called a “lung peel” where fibrous tissue growth was causing him difficulty in breathing and was literally peeled away from itself to allow freedom for the lungs to expand. This surgery was a serious risk to Andy. As JoAnne remembers “He never really complained even though it was painful and he struggled post-surgery with getting comfortable with all the drain tubes.” Joanne continued “Then on June 19th – the Tuesday right after Father’s Day, Andy had life threatening heart surgery to remove fluid built up around his heart. It was just before this surgery that Andy took the time to call all of his friends to say goodbye. The Doctors did not give him much of a chance of surviving.” But Andy did survive and he spent the next 2 months recovering in Vanderbilt. JoAnne was notably proud of her son “He overcame drain tubes, feeding tubes, 38 days of being on a catheter, staples from lung surgery, stitches from heart surgery and major fluid buildup. Just like the UT experience almost a month earlier, when Andy was wheeled from his room, over 30 doctors and nurses lined the hallway to give him a standing ovation on his discharge.” They were there to show their love for Andy and to recognize what JoAnne had just shared with me – Andy was a fighter.
He was intubated during his critical time on that 10th floor at Vanderbilt and unable to speak. Did not matter to Andy, he was still going to make friends and get to know his caretakers and doctors. JoAnne saved all the little handwritten notes from Andy and one stands out as evidence of Andy’s thought process as he lay in Vanderbilt at one of his lowest points. Remember, at this time because of a breathing tube he could not speak. He was being introduced to a new doctor. Andy wrote “Nice to meet you. May need lots of paper. I’m a talker.
Now he was finally healthy enough to be discharged to the Hope Lodge. A kind of halfway house for Cancer patients. The Hope Lodge is an American Cancer Society special care facility that provides a free home away from home for cancer patients and their caregivers. Andy had a private room (they all are), and there are kitchens for food prep and community gathering areas for activities and socializing. To qualify for consideration, patients need to be actively undergoing cancer treatment and must live 40 miles away (or at least 1 hour). To qualify for a room, every patient must be accompanied by a caregiver and in Andy’s case it was his Mom, JoAnne. The first lodge was based in Charleston SC and according to the Hope Lodge website was “conceived by Margot Freudenberg, a leader in the Charleston medical and business communities, who saw a similar facility while traveling through Australia and New Zealand with President Eisenhower’s People to People Ambassador Program.”
The Hope Lodge was a peaceful place. Andy liked it.
“Mom – can you stay another half hour?” – JoAnne’s daily routine
If there is such a thing as getting into a routine at a hospital, I wanted to hear from JoAnne what it was like. I asked her to share the details of what the days were like with Andy at the Vanderbilt facility. “Being in the hospital for 6 months is not easy but our life in the hospital had “good times” as well. Our former neighbor had earlier moved to Nashville and lived 10 minutes away from Vanderbilt. She gladly opened her home to me and allowed me to stay at no cost whatsoever. The design of the home was such that it had its own guest entrance. I could come and go without disturbing her. What a blessing this home was!
My daily routine was very consistent. Up in the morning at 5:30 because “Andy wanted me there at 7:30 am – everyday”. He also did not like it when JoAnne had to leave at night. He would beg “Mom, can you stay another half-hour?” When I probed why this was so important to Andy– JoAnne answered “Andy did not like being alone – he never did.” So early to rise every day, JoAnne would arrive at around 7:30 am every day. In the Morning she would sit with her son, watch TV, get him a snack, and really retrieve whatever he needed – at this time he couldn’t get out of bed due to a catheter. JoAnne said that Andy would rarely take a nap or sleep during the day. To pass the time between nurse visits, blood tests and X-rays JoAnne would spend time on her computer and Andy would often be on his phone on social media or his favorite websites. When it came time for lunch, some days he would eat what was on the menu, on other days he would coerce JoAnne to make trips across the street to Arby’s or Dunkin’ Donuts for something special. A trip to Sonic every morning on the way to the hospital became a routine as well. Andy would ask for the“Route 44 slush” – a different flavor every day. “From green apple, to mango and cherry – he tried them all”
JoAnne shared insights into a more relaxed atmosphere once they moved to the Hope Lodge. “We had some fun in the Hope Lodge too, as I sewed or watched TV with Andy. We laughed at commercials, talked about politicians and politics. Andy liked a variety of stuff on TV and would watch things like the news and North Woods Law. Many days he would have his infusions around the same time of day and we might watch the same TV lineup many, many times. One series we watched a lot started with “The Doctors”, then in succession “Dr. Phil, Judge Judy, Jeopardy and finally Big Bang Theory (Andy’s favorite). JoAnne went on to say “Of course, you know Andy loved horror and we would watch shows like The Walking Dead and American Horror Story. Funny that he could enjoy those shows with all the blood and gore but was far too squeamish to watch “Trauma – Life in the ER!” JoAnne closed out this part of our discussion by sharing how she and Len had split up the duties of running a home and taking care of a critically ill son. She said “it was Len that carried the home and financial loads so I could be with Andy in Nashville. We both had our roles to play and neither worked without the other”
“I feel so blessed” – Lens daily Routine
Len was emotional about being with Andy during his illness, and that time together had a profoundly positive impact on him. “Andy’s disease was terrible but I feel so blessed for the time we had the last 6 months. I had a perfect chance to share with Andy how much I love him and how much he meant to me. I took advantage of that time. We grew closer in the last 6 months of his life than in the prior 37 years.” He went onto say “When I was home, I enjoyed the quiet and the cat. My role was to take care of all of Andy’s finances. I was in charge of house finances as well. I was responsible for working through the insurance and medical bill issues. Some of Andy’s medicine was$8,000 month”. Len estimates that the medical bills came to be around $1.5MM dollars. They saw almost no bills. Len had been diligent in making certain Andy’s Cobra payments were made correctly and timely. Pretty important stuff when the bills are the size of home mortgages. The insurance company was amazing and would call weekly to check on Andy and offer help or assistance in any way. They called again 2 days after Andy passed and JoAnne could tell that the lady on the other end of the phone was not as chipper as normal. JoAnne asked if she knew about Andy’s passing. She said she had heard the sad news and she was incredibly emotional about it.
Len visited Andy in Nashville every other weekend. He always rented a car from Enterprise. As he completed the first rental transaction he discovered that the man behind the counter was the son of the prior owners of the home that Len and JoAnne lived in – small world. The Enterprise team was amazing in the number of upgrades, the discounts and the free days they provided to Len. On Lens last visit, they knew something was wrong. When Len shared the news that Andy was gone, the entire Enterprise service team broke down and cried – 3 people behind the counter grieving for a stranger that they had only met through his father’s regular visits. Their kindness continued to the very end. The last rental was – no charge. As Len shared with me “I’ve never met a nicer group of people.” In between his trips to Nashville, I was happy to host Len out to my ranch for a shooting session on my private range. In fact, it was Andy who specifically asked if we could get together. It was just like Andy to be concerned for his Dads welfare before his own. Len and I had a great time and Len, like his son, is just a great guy to be around.
Page back Click to continue to part 3 – Andy’s Attitude
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