ANC......................0
Yes. Her little body is just not recovering from the MiBG treatment. Dr. Yeager has been out of town all week but I would imagine that on Monday when we go back to Clinic he will be prepared to give her a stem cell boost. We are sad but must move forward and not let this get us down. Now that we know she will not be going to Philly for more treatment, we will sit down with Dr. Yeager and Dr. Mosse and figure out what is next. They will give us suggestions as there are many treatment options out there but ultimately it is up to us. I know these treatments like the back of my hand and still i am so afraid of making the wrong choice. As i have said before i think our best option is 3F8 Antibodies in NY and go from there. The big down side to this is we will have to spend a lot of time in NY which will effect the time we get with our family, School, work. Also, this treatment is very painful! Imagine having someone reach into your body and just start touching all of your nerve endings. The pain only lasts while she is getting the Antibodies which i believe is a few hours a day but it is very intense pain. She wouldn't be admitted during her stay, it would be done as outpatient and they would give her tons of pain meds. I am probably getting a little ahead of myself but needed to say the words (or type them) so i can figure this all out in my head.
She had to have platelets today because they were only 13 and she is still having a lot of pain and wont walk hardly at all. I see improvement everyday but its slow going.
My very sweet friend Kelly wrote this poem for Eden that i just loved. Kelly and Eden have a very special friendship and Eden just loves her to death.
E D E N
(by Kelly Hampton)
Eden
with her eyes so bright
thereÂs something special
is it a light
that comes from within
is it her smile
you feel it again and again
Eden
so young and wise
is she an angel sent from heaven
who touches our lives
and makes us glad
that God made little girls
Eden
from the beginning
laughing and healing us
with her love and compassion
always brave, strong
and worried about others
Eden
the sound of her giggles
the warmth of her hand
the feel of her arms around you
hugging all your cares away
(by Kelly Hampton)
Eden
with her eyes so bright
thereÂs something special
is it a light
that comes from within
is it her smile
you feel it again and again
Eden
so young and wise
is she an angel sent from heaven
who touches our lives
and makes us glad
that God made little girls
Eden
from the beginning
laughing and healing us
with her love and compassion
always brave, strong
and worried about others
Eden
the sound of her giggles
the warmth of her hand
the feel of her arms around you
hugging all your cares away
posted by Lisa @ 4:03 PM
3 Comments:
Lisa,
I know what you are going thru, but if it helps, The antibodies got reduced to 1 week, thats 5 days. If she is on the GM protocol, which involves the GM shots, starting on Wed, Thur friday and then m-f while getting the antibodies. The pain, is only for about 15-25 minutes. The 3 hours at the hospital is usually the max. Most of that is sleep time, due to the drugs. After that they are rearing to go, for the quality of life, The RMcD house there keeps them very occupied, it is amazing. I hope this helps, I know that the 3f8's are AMAZING!!!It is a world of difference and a lot to take in, but so worth it!!! Good Luck, I know that God is with Eden and will help you and Rourke make decisions in which road to travel. Next week Codey has to be there on Monday morning and we get to come home Friday night YEAH!!!!
A beautiful poem for a beautiful girl! Thinking and praying for all of you!
What are the exclusion factors to this new 3F8 trial? I cannot imagine that Eden would be eligible for high dose prep chemo any time soon. Does she have to have marrow disease to qualify? Does she need to be NED or close? Just because it hurts, doesn't mean that it is good or bad, just that it hurts, Is it any worse then chemo?
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