Quote:
Originally Posted by Al's Wife
Beth,
You and Earl are certainly in our thoughts and prayers. Since the doctor told us on August 17th that Al's MDS had progressed to AML, his platelets have been nonexistent. But since he has had no bad bleeding problems, they don't give him platelets unless he REALLY needs them. He has had petichae (sp?) on his legs really bad and blood blisters in his mouth from time to time, which the doctors say is considered active bleeding, but they still did not give him platelets. So I'm just wondering why some people get platelets regularly even if they don't hold and others (like my husband) don't get them unless they actively bleed out.
Last week he was bleeding internally and we went to the GI doctor who said that basically he would do nothing at this point because it would put Al at worse risk. They did transfuse platelets and, thankfully, the internal bleeding has stopped for now.
No one could have prepared any of us for this, so we have to just live day to day and pray for God's mercy and strength.
I am just thankful that the Emory doctor's words that he had "weeks not months" did not happen, and I am so thankful that Al and I have been able to enjoy some wonderful times together since August. We have actually been on three trips since August 17th and just had Thanksgiving with lots of family present. So we are truly blessed.
Al will start his fourth cycle of Dacogen in the morning but so far we can see no benefits but I'm not giving up. We'll have the all important bone marrow biopsy on December 17th.
I hope you and Earl will be able to find some good days ahead. Believe me, I know what you're feeling and there are no words that can help, but please know that I'm thinking of you and praying hard. As a wife and caregiver, I know you are worried, exhausted, brokenhearted, stressed to the max, and need to be about ten different people. But you have to take care of yourself. At least that is what everyone keeps telling me. 
Thinking of you and praying for better times. |
Linda it is so sad to read about Earl and Al, and know how very difficult it is for each of you.
Your post says everything I wish I could express. it was excellent.
Dean has been doing well for the last three months, but now his numbers are beginning to come down and he has needed a few transfusions. He is on Dacogen and it seemed to be helping for awhile, Dean went almost three months with no transfusions.
I am not able to get on the forums as often as I did. Dean goes to the doctor's office everyday for Neupogen and sometimes Procrit, and now transfusions, along with his Dacogan cycle, and my mother, who is 88, is now in heart failure. So both keep me busy. The end of your post about being a caregiver says it all.
Dean and I will continue to keep you, Beth, Earl and Al in our thoughts and prayers!
Lots of hugs!
Patti