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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.



  1. Oh, poor little thing! Just 5 months till done, doesn't seem fair at all.
    I do know that it happens more often than you would think in LTM, with the predominate meds being Vincristine and the 6MP. Those two really do a numbers on rapidly reproducing cells and her hair is the fastest. Do you know if she was recently upped on her meds or at what percentage her dosing is at? If her ANC has recently crashed that would be a good indication that her hair cells have taken a pretty good blow. I have also read that vincristine can cause more thinning if your hair happens to be in a growth cycle.
    Hannah's onc also said liver function can cause the hair to fall out. Does your CBC give a liver function/bilirubin number? That might be something to look at.
    At any rate, the hair loss shouldn't last as long as it did in front line treatment. That sure doesn't help with how it is feeling right now. I'm so sorry. Big hugs for the both of you.

    1. Her meds went up a few months ago with height/weight. Her ANC was good at last clinic, but that was 2 weeks ago, so? Her liver was actually a little better last clinic the the time before. Only 8 x the normal. I am guessing it is med increase and growth.
      Thanks for your comments.:-)

  2. I have no words. Devastating. I'm sorry you both have to endure this again.