Update

weenan · 11-21-2007, 09:27 PM

Today we had a meeting with all of Mum's doctors. It wasn't a good meeting. I don't even know where to start. So I am just go write it all down, if it doesn't make sense I am sorry.

The critical care Dr. gave Mum a ZERO chance of ever coming off the vent/trach. He does not think Mum will live more than a few days-to a few weeks.

The oncologist cannot treat Mum in her current state :low platelets, infection, heart racing etc. She will no longer get herceptin, because they think that is what is causing the high heart rate and has caused her heart to weaken.

He said that with any chemo combo the success rate is less than 1%.

They advised us not to go ahead with the trach/peg tube surgery, they said it will only prolong the inevitable.

We have decided that we have not given our Mum a long enough chance, she was doing so well a few days ago, before she got this nasty infection.

The Dr's will honor of whishes, so Mum will get the trach/peg tube, and once she is stable (about 10 days), we still start a new chemo combo.
He stated that he will use Tykerb along with others but not sure what the others will be yet. No one seems to think that she will recover. It has all just happened so fast, she went down hill with in 2 weeks from breathing, to needing oxygen to now being ventilated.
Is there anyone that has been this sick and has pulled through?? Does anyone know of any combos that can help???

Her Chemo Dr said that she is to weak for any clinical trials and that most Onclogists wouldnt even have treated her at all.

Please pray, and keep the hope, We need and so badly want a miracle.

Thanks
Nicola

rinaina · 11-21-2007, 09:37 PM

My prayers are with you all, and I pray with you for a miracle. They do sometimes happen and one should never give up the hope. So sorry you are all having to go through this.

tousled1 · 11-21-2007, 09:40 PM

Nicola,

I'm heart broken reading your mom's journey. Only your mom will know when it's time to say stop. Once the infection clears up I'm sure that there will be a chemo combo that will help your mom. Miracles do happen! I will keep your mother in my prayers.

Mary Anne in TX · 11-22-2007, 06:00 AM

I'll be praying for you and your mom and family! What a rotten spot to be in for you all. God bless you, ma

dhealey · 11-22-2007, 07:34 AM

Praying that god wraps his healing arms around you and your mother and gives you your miracle. Never give up your faith in him or hope.

DonnaD · 11-22-2007, 09:47 AM

Thank you for updating us. I have had you in my prayers since your first post.

This is so hard on you, your family and of course Mom. I will continue to pray for healing for your Mom, wisdom for the Dr's. and comfort and peace for you.

Miracle do happen.
Donna

Brenda_D · 11-22-2007, 11:22 AM

One of the toughest things is knowing when to say "it's enough". I know. I took care of my Mom last year, when she was very ill, and I was in charge of her medical care.
I let Mom decide when she'd had enough, and like your Mom, she wasn't ready to give up and fought long and hard. There did come a point when she said it was enough, though. She told me she didn't want to live like that, and she passed a few days later.
Hopefully, your Mom will be able to let you and her doctors know how far she wants you to go, in her care.
It sounds like your Onc has gone above and beyond what most doctors would do. My Mom was lucky enough to have a very caring doctor that went as far as my Mom wanted to go, and didn't give up on her, either.
I think the main thing is to keep her as comfortable as possible, and be there for her.

StephN · 11-23-2007, 12:46 PM

Hi Nicola -
I am answering based on recent history with my family.
I have had the horrible experience over the past 7 months where my father was put on a feeding tube and ventilator via the trach/PEG interventions. This is artificial life support. In the case of my father his heart was bad and his lungs had gotten weak from infection. He did not have cancer or other major health problems like diabetes, etc. His quality of life after that was very poor. He passed away on November 5 from a ravaging infection.

He was never able to wean off the ventilator and the pulmonologist said that he was weak because for him it was like running a marathon every day and this used all his strength. He was never able to really get back on his feet or rehab to any successrful degree because of his weakness and bad heart. It was a vicious cycle as the heart and lungs are closely connected.

The hospitals will recommend this ONLY in patients they feel have half a chance. The doctors really do know which patients have any hope of pulling through. My Mom was not ready to honor dad's Advance Directives as you know how hard it is to know when it is really not fair to subject your loved one to further indignities. The risk of infection is much greater with all these tubes entering the body. If your mom has low white counts now an infection could be terrible for her.

After what I have seen, I have asked my family to never keep me alive that way. I want them to love me by knowing when to let go of my earthly body.

Joanne S · 11-24-2007, 01:23 PM

My heart goes out to you and your mum during this most difficult time. It sounds like Chemo is not what you mum needs now, but strength to fight off the infection/pneumonia. Stay calm and close, and comfort her.

You and your mum are in my prayers,

mke · 11-24-2007, 09:11 PM

After a serious accident my mother was on a ventilator and had a NG feeding tube. It was a bit questionable as to whether she would make it, she was well into her 70s at the time. She just wasn't healing and it was one setback after another. But she managed a turn around, got off the ventilator onto oxygen via nasal prongs and some actual food. It was a bit of a long haul with physio and all but she was discharged home and lived another 5 years or so. My mother didn't have any particular health problems, she was just a bit frail.

I agree with Joanne, chemo is on the back burner and they should be throwing everything possible at that infection.

I am so sorry that you and your family are going through this.

Jean · 11-24-2007, 11:33 PM

Nicola,
I am sorry that your Mom is fighting an infection on top of everything else.
I understand how you feel and know your pain. You want to do everything possible for your Mom. I have been in this poistion myself. Very painful to make difficult medical decsions.

Please know you are in my prayers...your mother is very fortunate to have your love and devotion. You are a great comfort to her.

Kind Regards,
Jean