Day 13

Sunday, June 17, 2012

I have terrible hair.  In fact, my brother aptly nicknamed me AfroSue when I was 10.  Since the 7th grade, I have been chemically treating my tresses to take out the curl and the frizz and make it a little more manageable and a lot more attractive.  As an adult, I found a process that continues to work well for me, and with the occasional frequent blow out, I like to believe my hair looks pretty normal most of the time.  (Not this month, but I have a good excuse.)

I was sure Ari was going to have Matt's hair color and my hair consistency and the kid would be doomed for life.  But to my surprise, Ari has the most beautiful hair ever.  I'm not exaggerating.  It is blond and thick and floppy and straight (but with body!).  "Wow, he has amazing hair!" is a phrase we hear quite often.

And ugh.  I knew this post was coming but that doesn't make it any easier to write.  This morning, we found hair strewn throughout Ari's hospital crib and all over his pillow.  Even the slightest touch to his gorgeous locks made strands fall out.  As he was eating his morning pasta and pickles, we watched it fall from his scalp to his chin, get stuck in his mouth, and wound around his little fingers.  They say once it starts shedding, it only takes a few days until it is all gone.

So in order to make the falling-out process less itchy and less traumatic (for him), we took scissors to his precious mane and cut as much out as possible while he napped.  I hear every one's "words of wisdom" and I know it will grow back and I know he won't know it is gone (or at least I hope not), but this classic cancer effect makes me ache inside.  

This makes it real. 

Until now, he looked healthy.  He looked like everyone else on the outside of the hospital.  And he didn't look like everyone else on our floor.  But in a few days, he will look like a kid with cancer.  When we stroll through the garden downstairs, the people eating their lunch will know.  When we leave the hospital and go back to the park and playground, the other parents will know.  And when we're anywhere and everywhere, strangers will know.  I dread their looks, their whispers, their feelings of sorry for me and pity for Ari.  And I regret the looks I gave and feelings I had for other families in the past.   

But you know what?  If we're out of here, it means Ari is doing well.  It means treatment is working and he's on the road to recovery.  His baldness will be a trophy shining for all to see that he is running a race and coming in first.  I am and will be so proud of his progress and of our collective efforts.  I won't be able to stop the sad eyes and thoughts of others, but I will do my darnedest to ignore them.

And until the hair grows back, I may buy Ari this shirt.

Post-haircut (I know he looks sad, but it's only because he was waiting for his second lunch!  He still looks adorable and damn good looking.)

I think we'll save the hair for the scrap book:


Daily update (it's only 3pm but hopefully this doesn't change by the evening):

GREAT news!  The last blood culture came back negative for the bacterial infection which means the antibiotic is working!  He will need 2 more negative cultures before they replace the permanent IV line but we are thrilled with these results.  His fever is gone and he is feeling much better.  He still is not himself and is spending most of the day resting (and eating and watching videos) but we are happy to see his spunk and humor returning.  He is once again flirting with every cute nurse and eating the noses of all of his stuffed animals.  His counts continue to improve and we hope it's just a matter of time before his blood shows no cancer and the good cells begin to regrow. 

Tomorrow morning is another lumbar tap (shucks) but at least this means they can do all pokes and pricks for the day while he's under anesthesia.

We are still in a "closed" room because of Ari's viral infection (they don't want it getting out to other kids) and because the bacterial infection still makes him extra prone to other bugs. 

We haven't changed his diaper in about 4 hours so I imagine we will be changing his sheets very soon.  Maybe I will do it this time as my father's day gift to the best daddy in the world!


Willie,  June 17, 2012 at 9:51 PM  

One bacteria down, two to go. Great news. You are both so good. I am blessed to have you as my grandson's parents.

Liana Mitman June 17, 2012 at 11:33 PM  

Glad his meds are working- happy daddy's day to Matt!

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