the journey continues...

from December 10, 2006 myspace blog

please think good thoughts for my mom, I am really scared right now. the brain tumor is stable according to the last MRI, but she was admitted to the hospital on Friday and they found blood clots in her lung and leg, and she has pneumonia. She was on oxygen and still not breathing well, so last night they had to take her to the ICU.  She was still not breathing well this morning so they had to put her on a ventilator and sedate her.  you can only visit at certain times in the ICU, and when I went to see her I just could not stop crying, it was so scary to see her like that with tubes down her throat and sedated.  she is on lots of antibiotics and a blood thinner for the clots.  my grandparents are coming now and it will be good to have someone here to talk to and hug.  It just kills me to think of her there all alone (since we can't be in there long) and scared.  I just want to take that all away for her.  I know she is sedated now as long as she's on the ventilator, so that keeps her asleep and not aware.. but I just can't stop thinking of her there fighting and not knowing what will happen.  Please God let her be strong enough to pull through this.  the chemo and steroids have really weakened her.

UPDATE 12/21 - this is day 12 in the ICU.  she is off the ventilator now but on a bi-pap machine that forces air into the lungs because she still has trouble breathing. there have been a few times they thought they'd have to put her back on the ventilator.  at one point the doctor told us that if there was family that would want to see her, that they should probably come.. that was so scary to hear.  the doctors are concerned that she hasn't improved as much as they'd expect.  she keeps trying to pull the mask off her face because it's so tight and we can't understand anything she says very well, but if they take it off her oxygen saturation drops quickly.  her poor arms are bandaged up because they've had to stick her so many times, and because of the blood thinners she's on she just bleeds and bleeds.  her kidney function was deteriorating and they thought she'd need dialysis, but that has improved.  i admire her so much, she is still such a fighter.  she has flashed the ok sign with her hands a few times and i can see her say 'i love you sweetie' and pucker up to kiss me through that mask.  i have been massaging her back and feet and i can tell she really likes that.  i tell her every day that she is doing better, even if it's about the same because i just want her to believe it and be able to rest her mind and body to get better.  i believe i know what it feels like in some sense to be a mother now.  i just want to take away all her pain and worry and fear and make it all better. 

thank you so much for all the thoughts and prayers.  you all mean a lot to me and i appreciate it so much. 

UPDATE 12/24 - i'm praying for a Christmas miracle.  I'm so sad this Christmas because I can't even tell mom Merry Christmas.  I can but I don't know if she'll even hear me.  She took a turn downhill on Friday.  The nurse called me at 4 am to tell me they had to put her back on the ventilator and sedate her because her oxygen level was dropping too low.  Then she called again as we were getting ready in the morning to go see her to tell us that she wasn't doing well at all, and that we should come see her.  Her blood pressure was dropping and they started her on blood pressure medication.  They had to insert chest tubes in each side of her to help re-inflate the lungs.  the doctor told us he didn't know if she would be able to recover or not.  He also told us there was 45-60 minutes where her oxygen level was too low and they don't know what if any damage that may have caused.  this is all just so surreal, i think i am numb... on autopilot...  wishing i knew what was going to happen.  i think this is the first Christmas ever that i won't get to talk to her.  and i am scared it won't be the last.  

UPDATE 12/31 - mom has been back on the ventilator for over a week now.  i can't believe she's been in the ICU for 3 weeks now.  they stopped all the sedation over a day ago to see if she will be strong enough to breathe on her own.  she is still sleeping but will open her eyes when i talk to her.  i have such a hard time walking out of her room every time we have to leave.. it just kills me to leave her there like that, knowing she is not ok.  i talked to her doctor at Duke and he said when their patients get into problems like this there's about a 10% chance they'll leave the hospital. and when the tumors start growing again like hers did in August that they usually have about 3-6 months.  but he also said she's never really been the norm since she was one of about 1% that don't have any growth when off chemo for a year.  then the next day he was more optimistic because they did an MRI and her tumor actually got smaller! and she hasn't been able to be on chemo for a month now because of what's going on.  i just keep telling her to keep up that positive attitude she's always had and know she is going to get better, and she nods her head.  i tell her she's my sweet momma and i love her.  i just hate that she has had to go through so much.  she deserves so much more and i am so sad that she has to endure this. she is such an amazing woman and i have learned so much from her.  she has always been there for my brother and i no matter what.  i just wish i could make her well again.

UPDATE 1/8/07 - after being on the ventilator again for 2 weeks, they finally removed it yesterday! She still has one of the chest tubes. Mom is very weak and can't talk very well yet because the tubes can irritate the vocal cords and cause some swelling in the throat, and she is raspy. However, I could make out that she was asking for water first. Unfortunately they can't give her any until the speech pathology people come and test her swallowing and gag reflex because they don't want her to choke or aspirate. Then she asked several times for diet coke, and then orange juice. She is trying everything :)! It was so good to see some of 'mom' back. We are just hoping she is strong enough to cough and keep her lungs clear this time so she doesn't have to go back on the ventilator again. Please pray for her continued improvement and strength.  thanks again!! 

UPDATE 1/21/07 - Mom is in a regular room now, and has been taken off the feeding tube.  We feed her slowly food that has been chopped up, and all liquids have to be thickened. She is off the oxygen now as well. She is still very weak and swollen and has not been able to get out of bed yet or move her legs and arms much. She is pretty confused and a lot of what she says doesn't make sense. I can tell she knows what she's saying, but her sentences don't make much sense... it's hard because she gets frustrated that we can't understand what she's asking for, and that is frustrating!  I wanted so much to be able to talk to her again, and I am so thankful for that.. it's just hard to not be able to really tell what she is saying sometimes.  I am not sure if it's the tumor (which is near the speech center of the brain) or if there was damage from her oxygen getting low.   

The doctor has been talking to her the last couple of days about what her goals are. Does she want to focus on fighting the cancer more and doing more chemo, which would mean going to a skilled nursing facility first for lots of physical therapy? ...or does she want to focus on quality of life, in which case he recommends hospice. She is having a hard time processing it all. I (and the doctors) am not sure when or if she will ever be strong enough again to tolerate more chemo. The last couple of days she has had headaches, so I am going to ask for another MRI in the next week. It's almost been a month since the last one.

I am currently taking family medical leave every Thursday and Friday so I am in Knoxville Thurs-Sun, and my grandparents are still here. They have to leave next week so I will take the leave full time and be here, and just work that out somehow. We really appreciate all of the thoughts and prayers so much, thank you.

UPDATE 1/27 - Mom had an MRI this week and the news was not good. The tumor is about 50 percent larger and there is increased swelling. Her doctor at Duke said she has two options, a daily low dose of chemo (Temodar, which she took before), or hospice. A very tough decision we are carefully considering.. I am here in Knoxville full time for awhile on family medical leave and you can find me in her room. Thank you so much for all of the kind thoughts and prayers. We appreciate it so much!

UPDATE 2/5 -  She has been moved to a skilled nursing facility for physical therapy because she is not able to stand or walk yet.  We are hoping she will improve with the physical therapy at least enough to take care of her most basic needs, but either way I am preparing to bring her home and take care of her.  I know she wants to be at home.  At that point we will probably have to call in hospice because I would need help with things and I know they provide hospital beds, bathe them, give meds, etc..  I am here full time on family medical leave doing the best I can, but it's hard not to go crazy sometimes trying to make the people at the nursing facility do their jobs ;)!

blog comments:

Amy,

Again, I want you to know that I will keep your family in our prayers.  And I am VERY serious when I say to PLEASE let me know if there is anything I can do to help.  If you need me to bring you dinner at the hospital or if you just need someone to sit with you, don't hesitate to call, okay?  I'll message you my numbers so you can call if you need ANYTHING!

Love and prayers,
Kelly

Amy,

I am sorry to hear about your mom.  I called and left you a message and if you need anything please don't hesitate to call, as I am very close to the hospital.  I will keep in touch, and I will talk to Amanda tomorrow for more updates.  I will keep your mom, you, and your entire family in my prayers.

Your friend,

Cory

Your mom is so lucky to have you to take care of her.  You being with her is helping her so much I'm sure!  Again, we're praying for you all!
Merry Christmas,
Kelly

Amy-I just want you to know how much I admire you!  You are such a strong person,.  I know your mom appreciates you being by her side through this difficult journey.  Your words of encouragement mean a lot to her.  I know she enjoys the massages as well.  We will continue to keep you and your family in our thoughts and prayers!  Love you!
Posted by Amy on Friday, December 22, 2006

Our whole family is praying for you and thinking of your mother and family right now.  Love you!  

Posted by Dana on Friday, December 22, 2006

I know that there is not much I can say or do, but I will continue to keep you and your family and my thoughts and prayers. 

Posted by kt on Wednesday, January 03, 2007

I'm praying for you sweets. Big hug to you!!!!!!!!
Posted by Allie on Tuesday, January 23, 2007