Trying to get a bunch of doctors in a room is like herding cats. They never come at the same time two days in a row and they often say conflicting things. Add to that, I called Dr. O's cell and it turns out it was the middle of the night in Berlin. He was really nice about it, and he and the pulmonologist discussed the state of Adrienne's lungs so that we all understand where we're at.
The long and short of it is: it's the tumors that are causing the breathing problems, and the liver and other issues are secondary to that, minor issues really in the scheme of things. Adrienne's lungs aren't scarred beyond repair and the situation is reversible if we can get rid of the tumors. Everyone is worried about giving more chemo while she is so immunosuppressed but we feel like we have nothing to lose, and it shrunk everything significantly the first time. Adrienne's counts are still in the toilet (a little uptick today) but we don't feel like chemo poses any more risk than the rest of the situation. So, we'll make a go-no-go decision on Wednesday for chemo. The trach is risky, but not any more risky than anything else, and they think she's strong enough to get through it. We'll talk to the ENT tonight and do it in the next day or two. We aren't making a permanent decision by putting the trach in and everyone agrees that it's a temporary solution. The goal has always been to get her to SGN-35 and just pray that it works. In the meantime, we don't want to cut off any options or make a permanent (disastrous) decision.
Thank you for all the notes and comments. We had talked a lot about "what if" before this all happened and Adrienne was clear about what she wanted and didn't want, but she wrote a healthcare power of attorney that allowed me to make decisions without restrictions. I don't want to make any final decisions as long as she's comfortable and not in pain, and she is comfortable and not in pain. As long as Adrienne wants to fight, we'll be here.
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24 comments:
So thankful that you've all gotten through another day with options still available. Thank you so much for the update...you have no idea how we are all "stalking" this blog for news. ((HUGS))
Susan
That sounds like a very good plan. I'll be thinking of you and Adrienne, and hoping for GO! on Wednesday.
Alison, you and Adrienne are amazing and if there is anyone that can heard a bunch of docs..no doubt it will be you. Wishing you all the best and I'm behind you all the way.
Love,
Erica
LOL on the herding cats - great analogy. It shows how amazing you are that you can still have a sense of humor. So glad that there are still options. Adrienne is truly a fighter and you her manager.
Alison you are the best mom in the world!! You are so devoted and are amazing the way you handle the doctors and see to it that Adrienne gets the best care. You explore every option and have always done what is best. You are both truly amazing and I am holding you both close to my heart as you go through this ordeal. and to quote you " As long as Adrienne wants to fight, we'll be here." We will be here also to send positive thoughts and prayers your way. Through your blog we have all come to care for and love Adrienne and We will be here for you and Adrienne. Whatever decisions you have to make we will all be here to support you. Sending lots of positive thoughts your way that things will improve!
Donna Boston, Ma
I've been checking all day to hear how things were. Of course, my fingers are crossed and I'm remembering you all in my prayers.
Alison, you and Adrienne are amazing. Such admirable strength. Much love and many prayers,
Julie (beightler68)
Well Alison, the amazing saga continues.
We've been awaiting your decision, and we're sure it's the right one. You must have gone through agonies making it. We'll of course continue to look for only the best results.
We remain with you and Adrienne in spirit if not in body.
Love,
Mom, Ed, and all your friends and supporters here in San Jose
I continue to think of and pray for you, Adrienne, and the rest of your family every day. She is a strong girl, and she's got the best advocate anyone could possibly have in you. Here's to chemo on Wednesday and a quick shrink of those tumors.
sending hugs and warmth...
Sounds like a plan is in place if everything lines up. Good to hear that they feel there are options. Thank you for the update on the blog, I am checking this blog on the hour, hoping for some good news. You are such an inspiration to me. Take care Alison and I know you are taking great care of Adrienne.
Sharon
please type on your blackberry from the icu a primer on caregiving (as if you have the time or energy). it should be required reading for new parents as part of the new healthcare reform. one foot in front of the other. there are no wrong decisions (just hard ones) when you are guided as you are by level-headedness in the midst of this utter crap, ardent love for Adrienne, brilliance, and utter resourcefulness. Prayers from the matzah ball capital of America http://www.msnbc.msn.com/id/21134540/vp/32330681#32330681 (eeeeewwww)
So glad you managed to talk to the (famous in lymphoma circles) Dr O, and have worked out options.
I've followed this blog for quite a while ... don't really have anything to add to what everyone else has said, except that like everyone else, I am hoping and praying that things will take an upturn and the way forward will be easier ... :)
Great! Susan is so right about all of us "stalking" this blog. I must have checked for updates 5 or more times today at least. Always on my mind..as the song goes. xoxoxox
Both of you extraordinary women never cease to amaze me. So good to hear a new plan is in place. And I second everyone else . . . thank you so much for taking time to update us.
Bonnie
Alison and Adrienne, I continue to watch and pray for you.
Patti Connery
Sending all the strength and love you need.....the plan sounds sensible.........here's to continuing the fight!......<3
Just echoing what everyone else has said and sending love...LOTS of love!
Lisa
This sounds like Alison/Adrienne find the plan, work the plan, mode of operation . . . good for you. I hope you can get some rest today, too.
Karen, Clare's mom
Love and hugs to get you through the long hours of today and each day...!
Think of you and praying like crazy,
Stacy xo
Alison, everything sounds very reasonable and doable. Let's fight the beast, and everything else will fall in line. Thank you for sharing the decision with us - I feel more confident that Adrienne will pull through this period and will be ready for SGN-35.
Love and hugs, Marsha
Alison, To echo Susan I stalk here as well hoping each day to find good news. I know you must be relieved to have a plan in place and I know those decisions are so difficult. We are all rooting for Adrienne she has touched so many hearts (even those of us who haven't met her). Thank you again for keeping us up to date.
((HUGS))
Carol (mom20)
Dear Alison,
Feeling heartened by the latest news/update. I know it is almost minute by minute but the latest sounds positive and so relieved to know Adrienne is not only getting the greatest care but is not experiencing pain. Go you little fighter go!
P&A
Dear Adrienne,
You are a HERO among us. Stay strong, keep fighting, and keep making that lemonade out of the lemons. You CAN do this.
A Mom
Alison,
I'll "second" what so many others have said here: sounds like you've got your plan of action and, I know that you put so much thought into every step you take. There's a multitude of love, positive thoughts, wishes and prayers backing you!
Fight on, Adrienne!!
Lots of love to both of you, Alison and Adrienne and, to your family.
Sandy
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