13 1/2days of Treatment for A.L.L.

After 13 1/2 days of being on the drugs for cancer Ainsley is starting to lose her beautiful red hair.

It's really happening.

It started Monday afternoon 8/26/13, day 13 1/2 of the induction phase. And today, day 14 Chris and I will have to tell her what is happening.

Normally, this would be a conversation where she asks "Mama, why does the medicine do that?" "Dad, will my hair grow back?" And we would give her honest real answers. We would tell her how awesome it can be to shave your head and how brave you have to be to go through all this. We would show diagrams and go over the reasons. We would read her the stories from the hospital and Aunt Aleia describing Chemo and Cancer. We would explain how this is our new mission, to become advocates for A.L.L. and for other sick kids.

But in our case she might not ask those questions and we might have to figure out a new way or wait.

I had planned to do a fun thing where I let Ainsley cut my hair and then we dye it whatever color she wanted (probably pink) then we would shave it or something awesome, but yet again my idea is crushed.

Ainsley is not here in full. She has reverted back to a safer place. And we are waiting for her to come back to us.

I cannot imagine being a four year old running around, singing, playing, talking, and being awesome one day and then just thrown into a full swing life change. Here is what I, her mother think she is thinking about or feeling. But I have no real way of knowing.

Getting sick and then waking up in a hospital with a tube down my throat, two tubes coming out of my neck, three tubes coming out of my leg, my feet in ortho boots, a pulse ox reader on my toe, a blood pressure cuff on my leg, a line in my arm and multiple beeping alarms going off all the time. The smell of rubbing alcohol, soap, hospital, bleach, sanitizer wafting throughout the air. My stomach is sick from chemo, my body hurts, I have fevers, I have so many tubes everywhere, I am wearing a diaper with a catheter, and I have no control. My parents dressed in yellow aprons and blue masks all the time, trying to talk to me. Random strangers constantly standing over me; Doctors, nurses, respiratory therapist, physical therapist, child life specialist, cleaning lady. So many people everyday always talking, always coming in, always seeing me exposed laying here.

So when they took the respirator out she said a few words and then she reverted back. She started slowly showing glimpses and then she got a feeding tube out and we had to put arm restrictors on her arms. She started itching and scratching and we had to put socks taped on her hands like an infant. So she went back to infant state.

Our Ainsley is currently taking a vacation and we have stand in Ainsley. The infant like sweetheart that chooses not to talk, not to respond, and to just do her best to get by. When her hair started falling out it became even more real.

She had such a matted mess from 18 days in a bed that tonight I decided to try and brush it out and then ended up cutting it with suture scissors. I only cut the back mats but as I did clumps of hair were coming out with them. It reminded me of a movie I used to watch as a child. Jane Eyre. There was a scene where Jane is in the orphanage and she does something wrong and the mistress violently chops off her hair in large clumps.

I wasn't being violent or anything like that but the clumps of hair were just so sad to me.

We have the same color of hair. It is a beautiful strawberry blonde that gets dark in the winter and light in the summer. People always compliment my ginger babies and as George turned blonde this summer Ainsley now will lose hers for awhile, I feel like I am losing a piece of my little babies. And it makes me a little sad.

So here we are. People are living, people are dying, friends are being amazing, random people are donating to our cause, and supporting us, prayers are being answered, prayers are being felt, People are going to school, My baby boy is bonding with his grandparents, and my baby girl is reverting to a safe place until she is ready to deal with all this craziness.

LIFE JUST GOT REALLY REALLY REAL.

-Andrea

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