"Dad's Safety Belt"

(Friday, March 19, 2010)

"Dad's Safety Belt"

Update Novel from Emily:

I will never forget the first time I walked down the bone marrow transplant unit at Moffitt soon after Dad was first admitted. A man was walking down the hallway with a safety belt around his waist. A nurse held the back of the belt to make sure if the man fainted, he would fall safely to the ground.

"Wow, I thought to myself. That man must be really sick."

Only seconds later, I saw my dad and brother emerge from Dad's room... Dad wearing a big pink safety belt around his waist with Adam holding on securely from behind.

We all laughed about it that day. "Emmy," Dad said, "I am just glad to be walking!"

On these days I understand Dad's words. Dad is unable to walk now, spending most days asleep in bed. I am grateful for the rest, but at the same time, I wish we were able to buckle that safety belt and take one more lap around the wing.

On Wednesday, I walked into Dad's room to see a bald man sleeping in the bed.

"Oh Sorry," I whispered as I backed out slowly. And then I realized. That bald man fast asleep in bed is my dad! I had yet to see him without a hat and the baldness truly affects a person's look - the chemo look.

It is hard to know exactly what to write to you these days. I will never forget Dad's instructions as he entered the hospital. "If I get too sick to write, girls," he said to Jenny and me. "Keep it light. Tell the truth, but keep it light." (Can't you just hear my Dad saying that to us?)

Now we walk the balance beam - trying to help you understand Dad's condition in the most effective words for prayer, but also knowing that someday my Dad is going to read my words and I want to honor him by keeping it light :)

So, tonight I will try to give you some facts about his condition.

In addition to cancer, Dad has a rare blood disease called Amyloidosis. This is a protein disorder that attacks various organs and starts shutting them down. Dad's amyloidosis was detected in his kidneys several months back. Therefore, his kidneys have pretty much stopped functioning properly. They don't filter as they should. SO.... Dad has extreme swelling (almost 25 pounds or more of fluid buildup)! This fluid buildup is preventing Dad from sitting up, bending his knees, etc. Can you imagine gaining 25 pounds in fluid???

The doctors have given him diuretics to stop the fluid buildup. Unfortunately, the diuretics are causing dad to become dehydrated (leading to the fainting!) So, it is this game right now... Try to drain the liquid, Dad gets dehydrated. IV fluids, Dad gains 17 pounds. Diuretics... dehydration...

And until his kidneys start getting some control (hopefully as a result of the Bone Marrow Treatment) this crazy cycle will continue. While we asked you to pray over his WBC Numbers for a quick release from the hospital, we now understand that we need your prayers in a different way.

Please pray:
For some control over this weight gain/ weight loss situation. Kidney function. No more nausea! Wearing that safety belt again!!!