Last time we were talking about radiation to get rid of a small lesion on the back of Moms head and the medicine that was supposed to make her more alert and coherent. Well, the medicine didn't work... so they did a spinal tap. The Spinal tap came back that the cancer is throughout her brain... we are still waiting on more results. They are no longer talking radiation, the want to surgically put a reservour (sp?) in her head and administer chemo directly to her spinal cord and brain. I'm waiting on a consult with a surgeon and the test results. They are also watching mom to see if her Kidneys are failing, the tests keep showing worse numbers, but a renal scan showed nothing abnormal.
I have had a consultation with Hospice. Mom is going to need either a Skilled Nursing Facility taking care of her, or Hospice to take care of her. I have to call and discuss more details with them... some Hospices will take her if she is undergoing brain chemo, others will not because they consider her still fighting the cancer, so she would need nursing.
The doctor wants to try and fight this because Mom is 58, not 78 and she was responding really well to the Chemo up until now. Otherwise he said he would tell us to just put her in Hospice and forgo the chemo.
This has been really hard. I'm still out of work, thankfully there is the Family Medical Leave Act, because I'm out of vacation days. I used most of them on my surgery 6-7 weeks ago. So I'm not getting paid now, but my job is not in jeapordy either.
I have called my siblings (all 5 of them) and told them they had to start coming to the hospital more. I have been here 24/7 and they have showed up once in a week until I said something. I told them that It's just not fair that they leave me here to deal with this alone. I need help too. They all have shown up.... Even the one Mom and I haven't talked to for over 2 years! I told them what happened in the past has to be put behind them now. They were able to sit and hold hands, and my sister told her that they didn't always get along, but she always loved her and I swear there was a tear that went down Mom's face. Later during that visit my sister thought my mom didn't want her there, I showed her that Mom no longer knew who she was. She started seizure meds in the middle of the visit and when that happens her memory fades. Moms fiance is still coming over, he tells her how beautiful she is and how much he loves her. He's going to have to find a new place to live and wants to take care of my brother as well who's out of work. They really need each other since they would need roomates anyway.
For the first time in many years, all 6 of us (3 girls, 3 boys-- ages 22 - 38) got together and we have all made decisions for moms health and we are all in agreement. Imagine that! We have decided that we will try the chemo because the dr suggested it, but we told him to tell us when she's had enough and we can expect no improvement. We figure better to have tried and failed, then to not try and wonder for the rest of our lives if we made the wrong decision. I was officially named her Health Care decision maker by the siblings and we decided on a do not resuccitate order for Mom. If she stops breathing, she is to be allowed a natural death. We think this is fair... who in the world would want to die more than once.
I've been keeping in contact with the family. My mother has 2 brothers, a sister and mother still. They have told me they are proud of me and agree with my decisions. This means alot. Some of the family is going to try and come visit soon because I told them they can wait, but if they want to see her one more time while she has a chance of recongnizing them, they need to come now. I would rather they come while she knows, then show up for her funeral. I don't know why family always waits to have a reunion at the funeral of family members. Be there when they need you.
If things become a little more sudden, I have to put in orders with the Red Cross here at the hospital to get my brother home from Japan. He's in the Military. If I'm told she has a couple days, a week, 2 weeks, 3 weeks, etc. I'm to get him here.... my brother comes back to the states in about 22 days with his family if he waits because his time in Japan is almost over.
I'm devistated because Mom has always been my best friend and I can't believe this is happening to her. I can't believe it all happened so quickly. I so want her to fight, but I know that's not realistic. She's refusing food, the doctors said that is usually end stages. I think if she just eats a bit, she might have more energy. I want a little feeling of hope. I wake her daily, sit her up and have her eat. As long as she is removed from bed and sitting up, she tries to take a few bites by herself. I'm not going to force feed her, but I'm not giving up on her either. Her motor skills are very bad at this point, she prefers foods she can eat with her fingers because the fork is to hard to hold.
She is less responsive today than she was yesterday. I hope things turn around. But she was in pain, vomiting and was showing signs of anxiety, so for her comfort they gave her some meds to help her.
The hospital has been great, there have been issues with horrible nurses, some missed medications and some bad care, but most have been wonderful. In the whole scheme of things... I don't know if these things would have made anything worse anyway. I really think her time is coming soon.
This really sucks!
Laurie 1|1|I continue to pray. You are doing and exceptional job with everything...what a blessing all the siblings were able to agree......|blessedx5|I_am_blessedx5@yahoo.com|10:08:29|05/21/2011|
, 2|1|Laurie, praying for your Mom, your family and you. You are showing such composure and strength at this difficult time|Gammiesue|snschapin@yahoo.com|10:28:09|05/21/2011|
(((Hugs)))
I love my computer because my friends live in it. 3|1|Oh Laurie! (((HUGS)))..inside..|Skaytes|skaytez@gmail.com|10:58:31|05/21/2011|
I am sooo very sorry you have to go thru this. I have lost both parents..all I have left now is my kids and grandkids. I too had to make some very very difficult decisions but thankfully you have siblings to help you deal with things although you are primary decision maker. I continue to keep you and your mom and the rest of your family as well in prayer and thoughts here. I wish there was something I could do for you. If you think of ANYTHING I can do to help, please DO email me, OK? I Mean that too! I can send you my phone number as well if even you just need to talk or even vent to me. I have big shoulders :) I know it's so very hard and it's a long road to go down... (((HUGS))) again and stay strong. 4|1|Laurie, always have hope when there is some left to be had......I agree it's worth a try with the chemo given her age, if nothing else it may alleviate some of her pain and disorientation for awhile, giving her a better quality of life. My heart goes out to you, to go through this and face the possibility of losing her.....your dedication to her is so beautiful. And that you got all your siblings on board and in agreement, wow....that is a great testiment to the kind of mother and person she is, that you all just want the best for her. Prayers continue, my friend...and you know if there is anything I can do, all you need to do is tell me.|saint6811|waylan@comcast.net|15:32:27|05/21/2011|
" You'll get what's coming to you ... Unless it was mailed."