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April, my mom just passed away with aml. She was insistant on not having hospice, cause that would mean no more transfusions, but last monday, feb. 28, she was so weak that we had to carry her to the car. Her spleen had grown to be the size of a volleyball, she had alot of pain from that, then she got so weak. We took her to the dr. and he said she only had a few days left, so mom wanted one last transfusion and then wanted to go home and have hospice come in. Well, the last transfusion went into her tissues and not her organs, she got violently sick and was throwing up blood. Her pain was so awful in her legs. They gave her morphine and ativan sp? and that helped, but she never got to go home. She too, was a yellowish color. They put in a catheter, and the last time she said anything was Wed. I still think she knew we were there, but was too weak and medicated to talk. It was a very horrible week, the pain was great, she would moan and it broke our hearts. We never left her. She left us Friday March 4th, a week ago. She died peacefully when for the first time that day, everyone in our family was with her.
If you have any questions, I will certainly try to let you know other circumstances that happened that week, or the previous weeks before she died. My mom was brave and strong, I am so proud of her. Deb
Thanks for all the responses. I have been staying with my mom for the last two days and I am getting ready to go back there today. She is having a bleed in her mouth since yesterday, not alot, but constant. I will be taking her back to the hospital and maybe they can get it to stop, the platelets don’t seem to be working when she receives them. She is having pain on her left side and I imagine it is the spleen, it is quite swollen.
I will be there for my mom, and for myself. I hope and pray I can hold her hand as she is leaving this plane, to go meet my Matthew.
We did go to Omaha, mom saw two different doctors there, that was in the beginning. They wanted her to do the heavy chemo at that point, she was not having any transfusions, but had alot of chromo abnormalities. She opted not to do that. She made it since August of 2002. She has had two pretty darn good years, when they all thought she would be lucky to survive until xmas of 2002. So we have been fortunate. Things are not looking to good now, and there always is those questions of whether she should have or shouldn’t have with the chemo, but we all have to make choices. And that is what she chose. It might have been denial too. Anyway, I know there is not alot of options out there, I just wanted to hear that she would just go to sleep and not wake up, I guess that is what would be easiest. I lost my 20 year old son 5 years ago, and I know losing my mom will be different. It is the correct cycle of life, to lose a parent, not to lose a child. So I guess I see things a little different than the average person, but I don’t her to suffer. I don’t want her in alot of pain. Deb
Terri, Vidaza is out of the question for my mom, she did not do well, got very sick and was in bed for two weeks after the week of treatment.
Gosh, Barbra, I did not know Ron’s blasts were that high. I missed that somehow.
I am afraid of the answers too, but at the same time, I want to know. I am like you too, not wanting my mom in the room, with these types of questions, so I thought this would be a great source of how to go about it.
thanks girls for your replies, Deb
My mom gets transfused when around 8…when she first started getting transfusions she really couldn’t tell she needed them. But the dr. said it is hard on her heart and other organs to go much lower than the 8. Her heart beats really fast and she gets a thumping in her ear when she is in the 8’s. Deb
Jocelyn, my mom’s spleen is very enlarged. It even hurts mom sometimes. She has a full feeling on that left side. I wonder too if it could get so enlarged that it would rupture, is that possible? I guess it is because her platelets are not working right. My daughter was in a severe car accident and lost her spleen, her platelet count is very high, but nothing to worry about. I wish she could give some of those extra to my mom! They used to remove the spleen to increase platelets, but it is only a temporary thing, I think. Anyway, mom’s counts are so low, they wouldn’t touch her.
My mom’s dr. says the neupogen will not work cause mom’s raeb is too advanced. The side effects are not too appealing either. He says he cannot get revimid or the zarnestra until they are approved by the FDA. I hope my mom can hold out until then.
Hi, My mom’s platelets are too low for a biopsy, but sense she was being treated for pneumonia and she was still getting a fever, a radiologist read the xray and saw the mass and they are pretty confident that is what it is. She did have 2 treat ments of the fungal iv stuff, the lst one she did not get a reaction to, the second was just as said in previous posts–she got the shake and bakes. It was not very fun, they gave her darvon and something else and then continued with the treatment and she made it through fine. They would have done more treatments but thought they could treat it orally, so she didn’t have to go through that. She still does not feel all that great, but she did go home yesterday. Deb