I am updating based on our appointment yesterday with the doctor. It was a very hard appointment. This bleeding isn't seeming to slow down or stop yet, based on this problem the doctor said the following:
~Ask if more radiation is possible
~Ask GI (scope doctor) if another scope would help
~Go to Madison for Photo Dynamic Therapy
~Switch to comfort measures only
We have found that no more radiation can be given, we knew this back in April because we have exceeded our limit of getting safe radiation, we of course do not want to risk a radiation burn which is EXTREMELY painful. We have also found out that a scope would not help, the last scope that was done used a gas to try and stop the bleeding, it may have worked for a day or 2 but then the bleeding sped up even worse, so that has been ruled out as well. My dad truly doesn't want to go to Madison for the PDT. It is not guaranteed to work, it isn't just a short process, and he would be held in doors the rest of the year. The trip would be hard on him and Dr. Guenther, who we trust with everything, said that it wouldn't get my dad much quality of life and that the liver would soon act up even worse. My dad, along with my mom, brother, and I do not want to see the liver act up and have my dad is severe pain and suffering. My dad decided that he will continue transfusions for one more week (through next Monday) and then make a decision on how often to get transfusions and his next steps. We go for blood everyday these days which doesn't leave him any quality of life. He is tired often and in pain from the liver. He is definitely not a quitter and everyone should have nothing but utmost respect for him. No matter what my dad is always my Hero, he is such a special person and I am honored to be his daughter.
Keep praying that this bleeding stops. Keep praying for our miracle.
I love you so much Dad, If there was a way I could take all of this from you I would do it in a heart beat. I hate that you have to go through this. I can't tell you how much I admire your attitude, I cannot stress it enough. You are an inspiration, an amazing person, and my hero. I love you so, so much. Have I told you lately that I love you? You fill my heart with gladness, take away all my sadness, ease my troubles, that's what you do.
Love always and forever,
Your little princess