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Thursday, June 28, 2012

Wednesday June 27th, 2012

Ella had clinic yesterday.  Her counts were good and she had her chemo as scheduled.

For the first time, her cousin Sara came to clinic with us. She wanted to see what it was like for Ella.  Sara is such a sweet girl and she has a very soft heart. I told Sara what to expect and tried my best to let her know what it would be like. When she saw the needle go in she was very strong, but she cried. It reminded me that I have become numb to what Ella goes through at clinic. I forget how afraid she is and how scary it is for her to get a needle in the chest each time.   Ella did well, and she even posed for a few pictures with her Dr. and her favorite nurse.

Afterwards we went to Build A Bear with Sara and the girls got matching BAB's.  They also had a handful of stores they wanted to visit, including Ella's new favorite Charming Charlies. It's a store full of girly jewelry, purses and shoes.  Lots of glittery things and she loves it.  Ella has not worn a hat of handkerchief all week. She has been very brave and strong.  But, I already knew she was strong.

Ella's Aunt Carrie took her and 3 of her friends to see the opening of Disney's new movie Brave last weekend.  She wore her Brave princess dress, crown and shoes.  She had a blast.  It was really sweet to see her and Carrie have so much fun watching the movie.  The movie theater actually gave them the Brave Standee from the theater.  We had to cut the princess out of it to fit it into the car.  i think I need a wing built on to the house just to hold her Build A Bears.

This week Josh and Ella got to go stay at Grandma and Grandpa's for the week.  They were really excited to go and Steve and I are really enjoying this time alone together.  I got to spend the day painting today and it is nice to have un-interrupted time to accomplish a task.  We have gone on 2 dates and have one more planned for this weekend before I pick up the kids.  I know we need time away, but it is really hard and I miss them both terribly.  When they are not here, it is like a piece of my heart is missing.


Saturday, June 16, 2012

Saturday June 16th, 2012

Tonight I ran away.  I got into the van and drove to Target for orange juice.  We didn't have to have orange juice, but I needed to flee.  I could not endure the pain of seeing my child's half bald head any longer and I just needed to run away.  In the van I turn off the engine and close my eyes.  It is so quiet I can hear a ringing in my ears.  Images of Ella's head with patches of hair missing keep flashing in front of my minds eye and I can't make them stop.  Every person that looked at her today and in their head said 'Oh my God!", flashed there too. I really don't know what is worse- having cancer but having your hair and no one understanding what is going on inside of her OR having cancer and No hair and having everyone stare and imagine the worst.  I'm still in melt down mode, but Target closed so I had to come home.

She doesn't want me to take her picture, so that's why my posts don't have any.

Why is the hair part so difficult for all of us?  I think it is because you have to face it.  You can not hide from cancer when it is staring at you in the form of a child with only 1/3 of her hair. No hiding a balding head.  And it scares her.  She remembers what it was like before and she doesn't want to go through it again. I don't want to go through it again.  I feel so helpless. I'm her mom and I can't do a thing to stop the pain she is in and after spending a month trying to figure out her leg and back pain to follow that with hair loss and to not be able to help her with any of them- it is so damn frustrating. It is also extremely heart breaking.

I walked a few laps with my family at the Relay for Life last night in Huntley.  We all wore our Cancer Butt Kickers shirts and we walked for Ella, Carrie, my dad, and my aunt, but mostly to be there for friends that lost their son last year to cancer.  He might not be here any longer but his journey is still a part of them and I wanted to honor that.  When all is said and done, I know that this part sucks, but I am grateful that she is still here and fighting.  I love my little girl, I just wish I could do more.

I wish there was a cure for cancer. I wish that it was as easy as kissing it and making it all better.


Thursday, June 14, 2012

Ella's Class
Tonight Ella asked me to say her prayers for her.  She has the same prayer every night.  Always prays for the same people in the same order including her cat and dog.  Tonight before I started listing off her people she stopped me and pointed to her head.  I asked her "What honey?" She whispered "Can you ask God to stop my hair from falling out?" Enter sound of breaking heart here.

I thought I would share this picture of her class supporting her this week. I volunteer at the school every week and I have totally fallen in love with all of these kids. The have so much love for each other. it is a pretty cool thing to be able to witness.

This song makes me think of all the little fighters out there.  Give em hell.

Tuesday, June 12, 2012

Tuesday June 12, 2012- Not a little Bit

I picked up Ella from school today. Normally it is a carpool of kids, but as the day had it- today only her. I brought her some ice cream and picked her up at the door of the school.  We walked to the car and she ate her ice cream.  I watched her be happy.  When we got to the car and started driving home she quietly asked "Why am I losing my hair again?" I told her what the doctor told me- "It means the medicine is working". She said "That doesn't make sense- it's been working for a long time and I had hair." Then I told her I agreed and giggled a little because that is what I told Steve when he told me what the doctor said. Then I told her that I was praying that only a little would fall out and it would just be thinner.  She then ran her hand through her hair and held up a fist full of red hair.  She said "Mommy, this is NOT a little bit!" Then we both started crying.  I pulled the van over to the side of the road and she crawled into my lap and we cried together for a good five minutes. She just kept saying she was scared.  I told her I was too.

We scurried off to gymnastics with Avery and Morgan, then to dinner.  She kept pulling her hair out and putting it into a baggie.  She may not be able to control when it falls out, but she is pretty determined to control what happens to it afterwards.  When we got home she asked me to pull out her bandanna's so she could wear one to school.  I asked her if she would like a new one and she said "Yes, and one for all my friends too!" so, off to Hobby Lobby at 7:30 tonight to make bandanna's for the kids in her class, her neighborhood friends, and her family.  Fashionable girls are wearing pink and black zebra stripped headbands this season, and boys will be wearing red and black flames! I finally brushed out her hair at the end of the night.  It is at least 1/2 gone. Neither Steve nor I can believe how fast it is happening.  When she went to brush her teeth tonight she came running out of the bathroom crying because she can see her scalp.  Another 5 minutes of crying and holding.  I really hate this part.  It is such an outward  acknowledgement of what is happening inside her body.  Hello reality.

Ella graduates Kindergarten next Monday. Tomorrow I am going to her class to make their graduation caps.  I really hope Ella can wear hers. I pray she wakes up and no more hair comes out.

I don't think I will ever forget the helplessness I felt tonight when she held up a chunk of hair and told me it wasn't a little.  As her mom, I want so badly to fix this for her. No child should have to endure this.

I hate cancer.


Monday, June 11, 2012

Monday June 11, 2012

Today I am crestfallen.  It has been easy to forget that Ella has cancer.  Just this weekend someone at church came up to me and said they were glad she was done.  I had to let them know that she still has 5 more months plus a surgery.  They were like "oh, that will be easy".  Let me tell you- NOTHING about this is easy. One day isn't easy.  Today Ella started losing her hair again.  We knew it was a possibility, but I felt like she was doing so well, there was no way it would happen. It just seems so unfair, but what part of your child getting cancer is fair?  She is so mad, and I can not blame her.  She JUST started putting piggy tails back in her hair, and tonight I was just pulling hair off the back of her shirt like she was a shedding cat. I'm mad too. So much for it being "Easy"!
We are praying that it stops, and just thins out a little.  Feel free to join me in this prayer.