Father's Day, 2018.

Bob Knoch

First post: Nov 9, 2018 Latest post: Nov 26, 2018
Welcome family, friends and thanks for your interest in and support of our Dad. Below outlines his health the past few months. 

Early summer Dad was more tired and increasingly weak. He was using a walker for most mobility. He lacked energy, but pushing to keep up with the vibrant lifestyle and schedule my parents have held for decades. July, he met with his oncologist and had a bone marrow test. He's had chronic, manageable leukemia for years.  

He turned 86 July 29th, we celebrated with loads of family. He was tired, ate very little. Days later, was an appointment to meet with his oncologist, Julie, Jen were on the way when Mom called and said Dad collapsed at home, she called 911, he was transported to Southdale ER. He collapsed due to exhaustion.

Dad stayed at Southdale a few days Jim flew in from Cleveland. The on-call oncologist had his results – he had MDS: Myelodysplastic syndrome a condition that can occur when the blood-forming cells in the marrow become abnormal. Doctor suggested a transfusion to boost his energy. We were hopeful, it didn't do much, so we began our quest to learn and do all we can for Dad and Mom. 

Side story, Dad was invited on the Veteran's Honor Flight to DC on September 29th, depart at 5:30am, return 10:30pm - a massive day of activity, but also honor. He was living for this trip and became our focus. His guardian Karrie, a PA in Oncology at the VA, a perfect match.  

Some syndromes have no known cause. Others occur in response to cancer treatments or chemical exposure.

He was released from the hospital days later, our family met with oncologist, Dr Dien. He walked us through what this meant which aligned to his symptoms - shortness of breath, fatigue, bruising, paleness.  

Treatment options - transfusions, medications to manage symptoms, bone marrow transplant, at Dad's age, the transplant very risky. He was put on Vitamin B6 and transfusions as needed. 

We sprang into action, educated ourselves on this diagnosis and what it would mean. Jim took him to his second transfusion. Each required a day for blood typing w next day transfusion. Each appointment was taxing, required two people to transport him.
Transfusions were not proving the best results. His hemoglobin prior to averaged 7.0, after between 8-9.  

Summer progressed and Dad's MDS. Family was concerned about his health and both parent’s safety. He required so much physical help, this was taxing on Mom and not realistic for her to handle.  

We looked into home help, hired Senior Helpers, which didn't prove to be the best solution. We met with Presbyterian Home's Assisted Living, decided this would be the best next step and eliminate a lot of demand on Mom. He moved in October 1st. 

Oh, he made it to Washington, DC! Karrie was instrumental in making this happen. It was a trip he’ll never forget and was beyond expectations.

His studio apartment was set up in a flash. This process has highlighted the strength of our family; our roles balance the bunch. Jim doesn't know how to cut & paste, so no writing for him, but he can fly a plane. He’s made phone calls with insurance, bank, run countless errands, can fly home at moment’s notice, we are blessed for that. Julie, queen of administration - paperwork, making appointments and a natural nurse. Jen, a project manager, the roll speaks for itself. Larry, medication and moving master – move ins/outs, set ups/tear downs. Tim makes sure everyone is fed. Kym cheering us on from Cleveland.

Orchard Path was lovely, staff incredible, food, oh-so good. But, Dad was lonely, staring at 4 walls and Mom doing the same at home. He wanted to be back home, October 15th, we moved him back.

The next two weeks Dad declined, unable to stand on his own, transfusions laborious with little results. The one hope was insurance approval of an EPO shot.

He was approved October 29, shot was October 31st. Mom, Julie, Jen sat in the room with Dad. The nurse asked Dad how he’s been feeling. He explained his weakness, lack of appetite, inability to walk, exhaustion and said, "I'm a burden to my family and putting them through hell". Spoiler alert: No he’s not, this is what families do. 

He went on to say he's tired of appointments that don’t result in improvements. Asked if there’s any reason to continue treatments if it's not helping. She was fantastic, said we don’t have a cure, this is your story and decision on what you want to do with your remaining time. She brought up Hospice and the wonderful home care he’d receive. Dad said, as he has recently, "I've had a good life, didn't think I'd live this long, my Dad died at 56". He made the decision to move to home Hospice. Then removed himself from the focus, said to the nurse, "you have a hard job".

Dad wanted to celebrate with pastries. He gobbled up donuts and a peace surrounded him.   

Hospice moves fast, we met Thursday with the team, they are angels on earth. Walked through expectations, removed 6 meds from his list of 20. Ordered wheelchair, bed, sleep meds, oxygen. The team gave us an A for being open and starting this process early. Dad’s focus was how we tell people. Hospice can have a bad rap. The team eloquently said, "You're the boss now Bob, and in complete control of your remaining time. We are all dying, you are choosing to make your remaining time comfortable for yourself, family and in your home".  

Dad has not been in pain, we are grateful for that. Our focus is his quality of life and surrounding him with love.

We are sharing his last chapter here. For those that may want to stop to visit - short, late mornings are best. 

Dad's next outing is to vote Tuesday, we will proudly drive this veteran to the polls.

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