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Barrett's Message Board Messages

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Hi all. Hope this post finds you doing well. I just wanted to tell you that I was watching Good Morning America this morning and they had a story on a new vaccine for brain cancer patients. They are doing studies and trials on it in San Francisco I believe. They remove brain tumors and use them to make a vaccine which they then inject into the patient...they are hopeful about this one. Just wanted to share the news. Take care. Rauna
Are you still wanting information on the end stages? If so I would be happy to share my mom's journey with you. Please let me know. Rauna
I am sorry that you are going through this. I know with my mom it was a hard thing to watch...This disease is terrible. The neurological changes come very quickly and the others, the not eating, drinking, or taking medication, and the confusion quickly follow. We had hospice care at mom's house. She told us before she got really bad that she wanted to die at home and so that's what we did. I was there with her 24/7 except for maybe 3 days out of the 6 weeks. I don't know if you have read the post titled my experience but that was how the end was with my mom. Let me know if you need anything else. Praying for you and your family... Rauna
Christine What other problems is he having if you dont mind me asking...my mom was bed-ridden from Dec. 23 until she passed on Feb 24. I know that it really got her down waking up to not being able to walk or feed herself anymore. We constantly had to fight infection because her blood counts were so low even after she was off of chemo for almost 2 months. She had bed sores that we battled everyday and as soon as we would get one healed she would develop another one somewhere else. Let me know if you need to talk. Rauna
Just wanting to wish you peace... Rauna
Christine - That's a hard one. My mom was on Temodar from Feb until Nov. She seemed to be doing well on it as far as side affects went...in Nov is when they found the inoperable tumor. So really Temodar only worked for a while for her...then they put her on Camptosar (CPT-11), she had one treatment of that and I noticed immediately she had trouble with balance, she was more dizzy, and had diarrhea, the day after the second treatment she was in the hospital with an infection because her blood counts were low. she had a UTI that she didn't know about which went septic and almost killed her. My basic theory is this...I know and understand that your father wants to live, my mom did too and she fought hard with all of her might...I always focused on my mom's QUALITY of life, not the QUANTITY. I wish she was here with me today...I miss her more than anything in the world...but I didn't want her to hurt and I didn't want her to even try to the CPT-11 but it was her decision, she was afraid of doing it but was also afraid of not trying it in case it did work. The day of her second and last treatment of CPT-11 was the LAST day i had with my mom as she was...she was never the same again. I wish there was a clear cut answer to this question as with all of the questions that come with this disease. I hope I have helped at least a little. Let me know if you need anything. You are in my thoughts and prayers, Rauna
If anyone has any questions about what to expect at the end or about anything to do with caregiving please let me know. I would be happy to help. Rauna
If anyone has any questions on what the end was like or anything from a caregivers point of view please feel free to message me. I'll answer any and everything that I can. Rauna
Hello all. Just wanted to take a few minutes to share the final days of my moms life... My mother passed away at 4:15 am on the 24th... She took her last sip of water on the 18th, ate her last bite of yogurt on the 20th and said her last words to me on the 20th. I attempted to give her Dilantin to her at midnight on the 20th and she refused it and then shortly after her breathing changed, she would inhale with a snoring sound and exhaled with a moan and then at the end of the moan you could hear the beginning of the death rattle. The nurse was called that morning at 330am to check her oxygen, which was at 82, so a concentrator was ordered and i was informed that mom was in the beginning stages of the dying process. I gave her an ABH suppository and morphine for pain and to keep her relaxed so that she didn't have to labor to breathe. The next day, Tuesday the 21st, she didn't wake at all to take any medication, I tried desperately to get her to sip water but she couldn't swallow anymore. Her urine output during this time was VERY minimal from Sunday to Tuesday she only produced about 400ml in that span. Wednesday afternoon as soon as the nurse got there in the afternoon mom began to labor, her oxygen fell to 66 even with the concentrator on, we turned her to give her ABH again and tylenol beccause she had a temperature of 104, we waited 15 minutes and her oxygen fell to 54 and I thought that I was going to lose her that afternoon. I was at the head of the bed looking at her and whispering in her ear telling her it was okay to stop fighting, that she had been so strong, and that she could let go so that she wouldn't hurt anymore, I told her that I would be okay...that everything was okay and i let her know over and over how much i love her how proud i was of her (still am) and she opened her eyes briefly when i told her she was the perfect mother and she squeezed my hand...a few minutes later she began to calm down and her oxygen climbed back up to about 70. The next morning, Thursday the 23rd, her breathing seemed louder, and that was the first time in all of this that her vitals were different...her BP had stayed high which was normal for her up until the day before she passed, there was no modeling on her skin, only a little darkness around her face and her hands...throughout the day her skin changed dramatically... I can't describe to you how fast these changes took place...Thursday morning her urine was VERY dark, her BP was lower, her breathing loud, she was unresponsive to anything...by Thursday afternoon her BP had dropped even more, her breathing became more labored and her eyes were open, pupils dilated...she had 2 seizures...unlike any other seizures I have ever seen, they happened more in her face than anything, very traumatic to watch...at the time she had the seizures she had been without dilantin for 4 days and was running a 105.5 temp that we could not get to come down any at all...we gave her ABH again to help calm her and reduce seizure activity again and to keep her comfortable. The nurse left at 10pm Thursday night and when she did her respirations were at 16 a minute...we continued giving morphine every hour and at 2am her respirations were at 7 a minute. I debated on turning her because the nurse had explained to me that in the course of any turn or administration of medication mom could pass away...i decided to turn her at 220am to give her tylenol and ABH suppositories...i knew in my heart that she would not make it through the night and i wanted her to be as comfortable as possible when God came to take her home...while turning her to the side the fluid from her luns began draining out of her mouth, the nurse said that was normal, when i positioned her and got her settled her respirations had dropped to 5 a minute. i kissed her and told her how much i love her and told her to walk on around the corner and go to God. at 415am she just stopped...no last sigh, no noise, just stopped breathing. i held her and kissed her until the nurse got there and my family and i made sure her nails were painted pretty like she would want, and when the nurse asked if i was ready for her to call the funeral home i told her no, i laid and held her, she was still warm, i tried to take all of her in... we buried her the next afternoon, graveside services just like mom wanted, ive done everything just the way my mother wanted no matter how much it scared me...i've drawn my strength from her, from watching her grace, her bravery, her courage through this whole ordeal...i spoke at her funeral, i stayed until she was covered, i stayed after everyone was gone and i've been there everyday since...making sure i've said the things that i want to say. i know that she is with me always and i know she wants me to go on with my life but everything is so raw right now...i'm trying but its hard. it was a painful thing to watch but i would do it all over again if i could...this experience taught me many things... thanks for listening... rauna
I lost my mother at 415 this morning... I cannot describe what I feel right now... I'll share my experience soon. Thank you for all of your kind words. Lost, Rauna
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Brain Cancer

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