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update from momworld

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Hi,
I know that it has been awhile since I have been on and that is because my daughter has taken a turn for the worse. She had another brain hemorrhage the week before the 4th of July. Surgery was done to stop the bleed and thats when the docs discovered that the tumor went from a quater size to the size of a mans fist, in just 3 months, on Etoposide. So after a very long discussion with her team and I, the decision was made that there will be no more surgeries and due to the growth rate and sensitivity to bleeding, they do not give her very long. I made them give me a number(which they never would before) of how long she has and they finally said, mathmatically of course, 3 months or less. They think more on the less side though. Our goal now is to make sure she has no pain. She is home now and hospice is involved. We will see how the rest of this journey goes. My daughter is strong and a fighter. She has surprised the doctors before. I am trying to take it day by day,but man is it hard. Anyway, I don't have alot of time to post but I will keep you all updated.
Sorry to deliver the bad news but you guys have been my rock for 2 1/2 years and I really need you now

sonfollower
Posts: 26
Joined: Nov 2010

I am so sorry to hear about your daughter. You are in our prayers right now for comfort and understanding.
This monster is so aweful.
Thank you so much for the courage to share this new. Unfortunately, this news all part of the disease.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

You are and will always be in my prayers. We are all on here to support you, as close by your side and we can be. Take care, I wish I could give you a hug..
Brenda

Beckymarie
Posts: 358
Joined: Aug 2009

My thoughts and prayers for your daughter and family. I hope you can find some peace in this painful process.
Becky

PBJ Austin
Posts: 346
Joined: Mar 2009

Warm hugs, thoughts, prayers, peace and comfort to your family during this difficult time. We will always be here for you.

connsteele
Posts: 232
Joined: May 2011

I am so sorry to hear of the recent downward turn of your daughter. I know how tough it is. I look back on when we were in the same situation and wonder how we did it, but we did. Please take comfort in knowing that you and your daughter have shared a special bond that can never be broken, in this life or the next. As the hospice chaplain told us a week before our son passed, "you are walking on sacred ground."

Since his passing I have struggled with why he had to go through all he did. I have found comfort in the song from the musical "Rent." It helps me to realize that even though his last year was tough, it had value and purpose, for both him and us. Here are the words:

Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

How about love?
How about love?
How about love? Measure in love

Seasons of love. Seasons of love

Five hundred twenty-five thousand
Six hundred minutes!
Five hundred twenty-five thousand
Journeys to plan.

Five hundred twenty-five thousand
Six hundred minutes
How do you measure the life
Of a woman or a man?

In truths that she learned,
Or in times that he cried.
In bridges he burned,
Or the way that she died.

It's time now to sing out,
Tho' the story never ends
Let's celebrate
Remember a year in the life of friends
Remember the love!
Remember the love!
Seasons of love!

Oh you got to got to
Remember the love!
You know that love is a gift from up above
Share love, give love spread love
Measure measure your life in love.

The video link is:
http://www.youtube.com/watch?v=kbQVJeDb9tQ

Love, prayers, and hugs,
Connie
m/o David
dx medulloblastoma 1985, age 8
26 years remission
dx AA3 April 2011
passed April 14, 2012

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear Momsworld,

I'm so sorry to hear that your daughter is struggling. She has fought so hard and so valiantly. I'm so in awe of how such a young person can be so brave in the face of a foe like cancer. She really is amazing.

My son is also a fighter. He is losing the battle though. He had a brain bleed too, while doing Avastin, so he won't be getting Avastin any more. We are very sad because he had good results while doing Avastin. But the treatments took a terrible toll on him. He could still do chemo, but I don't know if he could survive the treatment. I don't know if our NO will authorize any more treatments.

I also pressed for details about a month ago, and our NO tentatively gave David 4 to 6 months. They said its difficult to predict, and he could die sooner from a brain bleed, stroke, blood clot, infection, etc. So we are trying to cherish each moment and live one day at a time. It's extremely difficult--I'm sure that I don't need to tell you how hard it is.

I think of you often and I will continue to pray for you and your little girl. Stay strong! (I tell myself that several times a day. Our kids need us to be strong. Now is not the time to falter or waver in our strength or our faith.)

Love and blessings,
Cindy

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Tina:
I am very sorry to read your post. My heart hurts for you and I am at a loss of words. Enjoy every minute with your daughter, which I know you do anyway. You are an amazing Mom - providing continuous love and care for you daughter and that is always which she needs. I sometimes get so feeled with fear on this illness that I do not check this site as often. I do not know Sarah's journey. What I do know is I cling to my faith and I will continue to for the rest of my life. I will pray for you and your daughter. I pray for all on this site. God Bless you Tina. You are in my thoughts and prayers.

Edna

danishguy40
Posts: 3
Joined: Jul 2012

dear moms world i am new to this site but i want to send you my prayers. so sorry to hear about your daughter. if you care to talk i am always here. again i will light a candle and have my church say a prayer for you and your family

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Your daughter is an inspiration for us all. Thank you for sharing. I will be thinking of her.

xoxo

J.

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

I am so very sorry to hear this news. All of us are here for you. Your daughter is blessed to have such a devoted Mom! My God bring you strength during this time, and give you comfort. As always you will be in my prayers.

Michelle
Mobile, Al
DX: 10/20/09 AA3

lben
Posts: 2
Joined: Aug 2012

Heaven has another angel to watch over us. Love you so much, Gramma B

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

Please ler Momsworld know that my prayers are with her and the family!!!

Michelle
Mobile, Al

sadinholland
Posts: 233
Joined: Apr 2011

My prayers are with her and her family as well!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Tina:

I am so sorry to read the latest post. My prayers and thoughts are with you. Your daughter will always be with you - she is a part of you. There is no breaking the bond between Mother and child.
Philippians 4:14 "I have strength for all things in Christ Who empowers me." I will pray for your peace and comfort during this most difficult time.

Love, Edna

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