~Mighty Oak Needs Your Prayers Please~
 

Asking again for you to surround him with prayers because things look very rough for him. He just got up a while ago and hugged the kitchen counter as he has been doing for some time now. I did not know he was going to pass out as he started putting his hands down like he was going to sit on the floor. I tried to catch him the best I could but he slightly hit his head and banged up his knee pretty bad. I feel guilty about this, I am just sick about it. What the hell was I thinking?? I should be watching out for things like this. I held him as he was out and kept repeating that I love him and it's okay, I love you, I am right here. I felt so helpless sitting on the floor holding him. All the time he was unconscious (2-3 min.) I kept rehearsing in my mind that this is not happening to him.This did not appear to be a seizure but who knows, I will call doctor in the morning.

On another note, tumor markers dropping slightly with the Ixempra. I know it was suggested that this be stopped (DFCI) and a new course begin but we took our chances. We still do not know if this medication passes the BBB. What I do know is that sometimes when there is this much brain met activity, it sometimes deems the BBB dysfunctional and allows medicine to pass. Double edged sword, eh?? We will do brain MRI, bone scan, CATscan and petscan for monitoring, but it will wipe him out.

So he has had 3 Ixempra infusions so far. Next treatment should include Temodar and I want to cut in half the amount of Ixempra. He has lost a total of 100 pounds on this journey and is so frail. I am sorry I cannot provide you with more positive news. I am scared and so is he and I just pray that this is not happening, not now. As I sit here and write, he sits by my side and he is singing Frank Sinatra songs outloud to me. My heart is breaking and smiling at the same time. I love him so much and I am so sad about what is happening to him.>>Believe51

marie, you and ed are always in my prayers. Constantly.
Please do not hold any guilt about anything you are doing or think you are NOT doing. The world is not within your control.

I am holding you in special prayers right now, that you and ed be wrapped in God's loving grace, just as ed is wrapped in your love.

Peace,
Chris

ants
 

Oh, Marie, I agree with Chris you should never feel guilty. You're doing so much. Remember, "an ant...can't...move a rubber tree plant, but he's got...HIGH HOPES. High in the sky apple pie hopes! I've got really high hopes for both of you. You are so well educated about your options AND have great instincts and the drive to keep on doing what you need to do.
Big blessings and loving light to you. Celeste

Thank you Celeste, I'm sure that's what ed is singing...or maybe luck be a lady tonight...

Marie,

There is no room for guilt on your journey. It is too full of love for anything else!

I am keeping Ed and you in my thoughts and prayers and lifting Ed up for healing, strength, comfort.

Dear Marie -
Lots of prayers coming your way through the night and to greet you in the morning when you have a long day ahead. We know you want to anticipate everything, but that is impossible, honey! You are a giant among caregivers, and now that you are home with your darling hubby, don't be even more hard on yourself.

Maybe it is time to ask for some additional home care so that you can have a bit of a break to do the things that matter the most to you - like just being together.

Oh Marie! It must be so terrifying to see Mighty Oak unconscious. You cannot blame yourself. You fight so much for Ed and you give him so much love. We all admire you so much.
I hope you were able to reach a doctor and that Ed is better now. He is singing Frank Sinatra songs?? What an exceptional man! You are both in my heart. Michka

Lots of love and prayers being sent to you and Ed.

Karen

praying hard
 

for you both.
Jackie (down under)

Dear Marie,
Sending you and Ed a triple strength prayer.

A prayer for your continued calm and focus on your journey. You amaze me and I HATED to see you beat yourself up in this post. You are establishing unrealistic expectations for yourself. You're doing a GREAT job.

A prayer for Ed's body to accept the new treatment and react well.

Finally, a prayer for the 2 of you to continue to feel the presence of your love for each other and bask in the warmth of it's glow.

Love....Lori

Dear Marie, You are the best wife EVER!!!! Please don't add guilt to your many feelings inside you.

I was sad reading your post and my heart truly goes out to Ed and to you. Marie, I am holding you, Ed and Joy (and Jennifer) in prayer this morning. Marie and Ed, all I can think of to say to you is that I am so sorry for what you two are having to go through. Although this may sound trite....it is meant and felt from the bottom of my heart. Please know I love you and my heart hurts for you.

Love and Peace,

Mary Jo

Marie many, many prayers going out for Ed and you as well.

You are doing such a great job.

Marie, please get some help for you to help Ed. Your battle has been long and there's more to come and you need some help, girl. As I pictured you two in your special world with Ed singing and you going from magic to worry, I know your heart is aching. And I know it would be hard to let someone else into your space with Ed. I understand that part a lot.
You're incredible Miss Marie. You give all you have to give and then give some more. You sweet thing, I'm sending some energy and magic your way from my little world here on the coast. Thank you God, for our being able to slip into that magical world when we need it most. Much love and prayer to you both, ma

Dear Marie,
You and Ed are ever in my prayers too.

Barb A.

Marie,

Thank you for being you and letting us into the most intimate moments in your fight. It's the way that you reveal each and every detail that makes us all feel so close to you and Ed. You are the best gift that Ed could ever hope for.

I'm giving my strength to you and Ed!

Marie,
Lots of love and prayers coming your way.
You are a wonderful person.

HUgs,
Gemma

Marie,

My heart aches for you and Ed this morning as I read about what you went through last night. I want you to know that there is never a day that I don't think about you two.

I hope that today is a better one.

Love, Alice

lots of love, hugs and prayers coming your way!

Marie,

Please do not feel guilty. You are such a wonderful person, wife and caregiver. I know that things are really difficult for you right now and how scared you must be. My heart hurts for you and Ed this morning. I am asking God to wrap His love, comfort and peace around you both.