Friday, June 4, 2010

I watched tonight as my dad watched his oldest grandchild (my niece, Celine) graduate from high school. Sitting two chairs from him many things went through my mind. Will he be ok? Will his legs get too swollen? What happens if he gets coughing too much? Of course, he did cough and tried to control it the best he could. His legs did swell even though he tried to keep them up a little.

But the one thing I wondered was, will he be here to see his youngest grandchild (my son Jonny) graduate? I know I say I don't try and think too far in the future, but it does sneak up on me. And as I looked at Jonny (and the rest of the family sitting around us) I am again grateful that we atleast had this day together. Each day is a gift from god.

I am also very grateful for the AMY Support group. After only being a member for a few days I have already gotten an outpouring of support. I am inspired by reading about what others are going through and getting their thoughts. I am also excited about the opportunity to go to a meeting in Chicago this month. I talked to dad and he seemed open to it.

Sometimes I wonder if my dad is fully in this fight for his life like the rest of us are. I worry he is losing hope. It was good to talk to my brother tonight. As a family we are very in line with each other. So, I will go to bed tonight and say a prayer for a good day tomorrow. I also send my thoughts and prayers out to the other families fighting this disease. God bless!


  1. I am soo sorry that amyloidosis is also affecting your family. As a daughter who went thru this with my dad last year, I found knowledge is your best defense. I found it helpful to ask the doctors,each time my dad had blood work done,for a copy of his lab results. I have no background in the medical field but the tests results are fairly easy to read. For me, this kept me somewhat "sane" during the difficult journey. The Amyloidosis support group is a good base for information. Do not be afraid to ask questions - no question is unimportant nor silly. Bless you and your family and most of all, your father!!!

  2. Thank you for your note. Finding this support system has been wonderful - being able to talk/type to people that understand. THANKS SO MUCH!!!

  3. I hope you don't mind if I comment on your blog, my husband has AL and it has effected his heart just like your dad. It has been a real nightmare. He was only 56 when we found out and that took one year before anyone would listen. He went through a stem cell transplant, and for 18 months he was doing good. It's back but he is still OK, it's not coming back to fast.He tries to put all the things he enjoys doing into one day and he lives one day at a time.He tries to make memories with his grandchildren.
    I like you are adopted, and so are my brother and sister,and i wouldn't trade my family for all the money in the world.There are a lot of things that are not fare in this life, but I'm so glad I met and married the man I did and we have had a great life together.
    I hope your father does well and that you hold on to all the wonderful memories you have of him, and i hope there will be many more.
    May God bless you and your family
    CP from Utah