Tuesday, June 18, 2013

Francine's (my recipient's wife) Perspective

I will never forget that day in the Oncologist's office (Sept 1st 2009) when the Doctor told us that Giles had AML and that the prognosis was not good. He handed me a box of tissues and told me to keep them.

He said we could try treatment that would consist of a 30 day stay in the hospital with very strong Chemo in hopes to put the AML into remission. He said there was a good chance Giles would not make it through the 30 days of treatment and if he did, the AML may not go into remission.

Without hesitation Giles told the Doctor he would fight and he has been fighting ever since.

One of the most memorable days was on day 33, when they initially thought the AML had not gone into remission and while it was risky they would repeat the chemo. We were certain Giles would not make it and I told the head of the cancer ward that Giles needed to see our dog, Deuce. Could she help me figure out a way to make this happen? She said absolutely, we will prepare him and you go get your dog Deuce.

Since this hospital did not allow dogs they bundled Giles up with gloves, face mask, blankets and took him outside to the benches at the entrance of the hospital. As we pulled up to the curb Deuce saw Giles sitting on the bench and slowly walked up to him jumped on the bench and calmly laid down in Giles' lap. A few minutes later I turned around and saw hospital staff, patients and visitors stopped to watch this precious interaction all with tears in their eyes.

We got through the 30 days and all the months that followed of chemo and hospitalization, with the support and help of our friends and family.

Feb 2010 I received the call from Moffitt saying they had found a perfect match and we were to start to prepare for the transplant.

While so very grateful for this precious gift, my thoughts were, Will he make it? What will happen and How will we manage this?

Moffitt is 3 hours away and after his initial 30 days in the hospital it would require 90-100 days in the "clean apartment", which meant re locating for this period of time.

Giles could not be in contact with Deuce (or any animals) for the 100 days.

We were told that we needed to ask friends / family for help as care givers.

I work full time, had just started a new job and since Giles retirement I am the "bread winner" for the family.

We are both very independent people and asking for help to this extent was very difficult.

We are blessed with very generous and giving family and friends.

Thankfully my parents had moved to Orlando Florida a few years earlier and Deuce and I moved in with them for this duration.

After work each day I would commute the 1 hour from Orlando to Tampa each night during those 30 days.

Caregivers: We needed care givers for 16 weeks and each care giver needed to attend a class on exactly how to care give for the BMT patient.

During the class we found out what the donor would be doing and we all asked many questions as we were really interested in knowing what they would be going through.

I remember being told to ask no less than 6 people to care give to allow proper rest and breaks for each care giver. They also told us that if you didn't have anyone to provide care giving they would not go through with the transplant. It really hit me again how much you needed the generosity of other's.

Our friends and family were so generous in offering to provide care giving to Giles and also to allow me to work at the same time.

The plan was for me to work during the week and on Friday afternoon drive to Tampa to relieve the care giver's and ready the apartment for the next week's set of care giver's.

Since they weren't exactly sure when Giles would be moved to the clean apartment and Giles would be at his worst in the first 4 weeks, My mother and I took the first two weeks of care giving, then came his Sister Barb and her husband Fred, who lived 2 hours away.

Next was our good friends Gail & Bill, I can still remember Gail's expression when I told her what they would have to do as care giver's: Ensure he ate 3 times a day; took all his pills; drank X amount of fluids each day; took his temperature 3x a day, walk with him for 1 lap around the apartment complex and drive him to Moffitt each day for his appointments. She looked at me like I was kidding, two days later Gail and I were talking and she said I cant believe how hard it is to get him to do these basic things.

Care giving also meant cleaning the apartment from top to bottom each day.

Our good friends Peter and Liz came and provided a week of care giving. Giles sister Nancy and her husband Joe came from California for two weeks as care givers.

Giles' son's both took time off from their jobs and flew to Tampa for a week of care giving, thankfully by then Giles was feeling more human and could enjoy their company.

Care packages: So many people sent cards and care packages with puzzles, paper plane making books, etc since we were apartment bound you needed to find things to do inside.

Skype was also a big help to allow the ease of communication.

My mother bought camera's for our laptops so we could Skype each night and Giles could see Deuce and Deuce could hear Giles' voice.

On July 5th we came home, 96 days after admission ready to face our "new normal" and the rest of our journey and thankful for you Kylie, our good friends and our family.

No comments:

Post a Comment