Another 2 weeks of Leukemia

This is Day 36 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 23 is here. 

Leukemia has become the centerpiece of our lives; instead of studying statistics and other computational research I’ve been reading lots on Leukemia, cancer in general and Hematology.  Everything we do now revolves around Leukemia and I’m striving to make The Serenity Foundation become a reality so that my work time can revolve around it too.  I believe I’ve found an excellent way to use technology to help families who have kids with Leukemia and other medical crisis. 

The last two weeks have been a whirlwind of first, dealing with roid rage and roid binges and for the last week, having our little girl come back to us.  Serenity spent a month on steroids and the last week was the worst.  If you looked at her wrong, she would fly into a huge tantrum and hurt herself and anyone or thing around her.  She was also eating like a madman – Last Friday I bought 4 1/2 dozen eggs thinking they would last her a while – by that Sunday afternoon they were GONE!  About every thirty minutes to an hour she was waking up wanting 2 eggs, some yogurt and chips.  She would gobble them down – and by gobble i mean use a fork with her right hand to put a piece of egg in her mouth while grabbing the next piece at the same time with her left hand.  Once she had stuffed 2 eggs in her mouth, she would eat chips and yogurt for a while and then be ready to go back to sleep.  This would go on all night long – for that period, Adria and I got VERY little sleep and what we did get amounted to cat-naps. 

Last weekend she finished her steroid treatment and this week has been a lot of fun!  A lot of her cheek and tummy swelling have gone down and she looks quite a bit more normal.  The best thing though is that she has been her old self again – an extremely happy and fun baby!  She laughs a lot now and plays with the kids all the time, she hangs out with me a lot while I work.  It’s been really nice having her back instead of the Terrible Steroid Monster.  She still can’t walk, but her legs are getting much better, she can scoot around and tries to stand often.  Once or twice she has taken a couple steps – but that’s the most she can do so far.  I think it’s very frustrating for her to not be able to get around on her own at all. 

Holding her has become very similar to holding a long-haired dog in the spring time – you come away COVERED in hair!  When you run your fingers through her hair you come away with a full handful.  I suspect she’ll be bald by the end of next week and her body hair will probably follow soon thereafter. 

During the last week, we’ve managed to take Serenity and all the other kids to the park each night to have a bit of fun.  She really enjoys being in the baby swing and will sit there all night and just swing.  Her blood counts are within the healthy range so we were able to take her to church today for the first time in over a month and she’s been able to go to a lot of public places lately as well – like the museum. 

Tomorrow she starts her next chemo protocol, 6-Mercaptopurine or 6-MP, along with getting her bone marrow biopsy and intrathecal (in her spine) chemo treatments.  Hopefully that won’t set back all the progress she’s made in the last week. 

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

UPDATE: Day 38 is here.