There's no place like home.

My cancer survivor 7 year old is in a phase of chemotherapy called “maintenance” which calls for low dose oral meds that allow hair to grow.  Her gorgeous pixie-like head needed a little trim (to prevent any mullet-like style) so we headed over to the beauty salon on Friday.  It was mostly wonderful.  Some people looked at her in the way that stabs me, (oh that's the little girl with cancer) but I ignored it on this occasion and focused on the fun and the achievement of this milestone.  I haven’t always been graced with the ability to flip that switch.

The last time Phoenix got her hair cut was in the first phase of chemo called “induction”, and we had been living at Riley Hospital for a few weeks.  Phoenix’s hair was always wild and not combed and orange/red/blond and beautiful.  I always thought it was her feature that told the world exactly who she was.  It would say “Here I am to run wild, dance, sing, karate chop, kiss boys, make up crazy stories (lies?), make you think I’m a brat and make you fall in love with me.”  One of our first days in ICU a sweet young nurse named Jessalyn gave Phoenix two French braids that made her look adorable and kept the hair from needing brushed.  Phoenix would have called it “Dorothy hair”. But because she was in a coma-like state for many weeks, her hair became matted and hard…and then I could see that it was starting to fall out.  Unfortunately when chemo takes your hair it doesn’t happen overnight.  It gradually comes out in clumps over weeks.  A time came when I knew the braids had to be cut out, and I knew when that happened I would see the hair falling out… and then I would be faced with the physical fact that my baby had cancer.  (Until this point I could tell myself that I had a sick child in a coma…which could only be trumped by a sick child in a coma with cancer).

Phoenix, Nov 2011, the day of her hair cut.
The tape on her face is holding her feed
tube in place.

So I planned the haircut.  I asked my mom in law to bring her scissors and her haircutting skills.  I asked my mom to come and assist. I cried it out the night before, so that I could do what had to be done with a clear head.  I didn’t want Phoenix to hear or feel my sadness, because if she was conscious enough to know anything was going on she would already be confused.  So the day came, and we did it as a team... and it devastated us all.  The more we cut, combed, & washed, more hair would fall off her scalp.  We went through the motions.  Tears fell.  I held her, Pat snipped, Mom moved her head and toweled here and there.  We all told Phoenix that she was getting a great haircut and she would feel so much better when we were done.  I’m very sure she did.  But we, the three women that loved her the most, did not. 

We get used to physical oddities in the people that we are around often, and after a while we no longer see them, you just see the person.  Strangers see them immediately and fixate on them.  They either stare too long or look away too quickly.  You do this, I do this… it just happens.  When I looked at my child that happened to not have hair, I saw the child I described above, before the sickness.  When you see a bald child, you see a sick person that might die and it makes you feel sadness and pity.  When I see that look it destroys me.  I can only imagine that it is a gazillion times worse for any person battling the disease.  I mean, here we are, normal people, going to the pharmacy or a restaurant, getting things done for the day…and then someone gets caught giving us that look.  I used to hate it because it forced me to look through those eyes and see the sick child suffering, instead of the brave child getting treatment so she can heal.  That brave strong child that deserves applause and hugs…and wants you to save your pity for something that has already given up or died.  When I see it now, which is much less often, it stings me because we’ve come so damn far…but I no longer care for Phoenix to be looked at as normal…she is so much more….and she’ll tell you all about it.

Phoenix, this past weekend, at a fundraiser for Hello Gorgeous, an organization that gives women going through chemo a full spa day & makeover, to help them feel beautiful and normal.