Living with Leukemia: Going bald at Age 2

This is day 38 of my baby, Serenity being diagnosed with and treated for Leukemia.  Day 36 is here. 

Yesterday we had another clinic visit, Serenity got 3 Chemo treatments; an IV one, an intrathecal one (in her spine) and an oral one. 

Some things to note in that picture: She’s wearing her new medic alert bracelet on her left hand, it has her name, that she has Leukemia and her blood type on it.   She’s also wearing her courage beads, she gets a bead for every major treatment/accomplishment/torture that she has endured – it chronicles her journey through Leukemia treatment and is already half full.  Also, she’s wearing a hat because her hair is extremely thin and we were out in the sun.  She’s holding her hospital ID tag which is gets put on her arm at the next stage of her visit.  She actually ends up with a second one on her ankle when she gets put under.  She has a huge collection of the bracelets now, when we cut them off every week we add them to her pile.  One of her routines at clinic is to have about 6 stickers made from her ID tag and stick them all over her shirt and mine while we’re waiting for her treatments. 

When she gets her intrathecal chemo, they put her under with general anesthesia to do the lumbar puncture.  This is her in the recovery room right after the procedure.  She has to fast for these and wakes up very hungry, it’s a celebration of eating and drinking!

Her hair has been shedding like crazy lately and tonight we decided it was time to shave it – she had big bald patches all over and was starting to look pretty ragged.  Not only that, but every time we picked her up we would come away covered in hair!  Here is a picture of her in the hospital when this all started – with all of her hair:

This is how she looked this evening right before we shaved her head:

 

Shaving her head was a bit of a family event:

And, here is the new Poster Child for Leukemia!

She keeps rubbing her head and saying “Bald!”, then rubbing my head and saying “Daddy Bald!” Then she points to her port and says “port!” and points to my chest and says “Daddy no port”.  She’s pretty proud of having something so cool that noone else in the family does.  

Her new oral chemo, 6-MP, is going pretty rough for her.  She hates how it tastes, so I tasted it – much to Adria’s horror – it doesn’t taste too bad at first, but it does have a yucky aftertaste.  I only put a dab on my tongue, I can’t imagine what 2 mls of it would taste like.  She nearly throws up every time she takes it and it has made her dis-trust any medicine again.  She was doing pretty good at taking them until the 6-MP, not that she liked it but it had gotten fairly routine and easy. 

Living with Leukemia is becoming routine for us, Serenity being bald is kind of the final committment for it – or so it seems.  She now looks a lot more like someone suffering from cancer.

The story of Serenity’s battle with Leukemia begins here.

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