Goodbye 2008 (and goodbye Ori's hair)

A much overdue update on Ori...

This week he'll have a 6-8 hour day of chemo treatments - his longest day of the entire 3 year treatment schedule. It will start with another spinal tap (or LP, as we've become accustomed to calling them - short for lumbar puncture). Then it will progress to IV chemo.

And we (read: Dad) get to learn how to administer a shot in the arm for three at-home chemo treatments over the next week.

The past three weeks have seen a return to the dexamethasone steroid (oh joy) and a new drug (doxorubicin). This past week, the steroid really kicked in as it brought back the bloated boy with a voracious appetite for cheese and all foods salty, extreme moodiness and over-saturated diapers requiring a midnight change of PJs and sheets nightly.

And this time the added bonus has been a middle-of-the-night confusion for morning, with a whining and crying insistance that we have breakfast and start the day, even though it's been 2:30am or so.

Yesterday was the topper - awake at 3:30am, talking to himself in the crib until his regular 6:00am wake-up time, talking all the way through his nap at noon and going full-throttle all the way up until 6:00pm, when he dropped like a cartoon anvil. This steroid just does a number on his body, from mind to appetite to bladder.

All this and Ori's hair has rapidly been falling out this past week. For that we have the new doxorubicin drug to thank. And to keep him wanting to take his medications, we haven't told him that he's losing it b/c of the meds. Instead we've told him he's losing his "baby hair" (a la baby teeth). That's working amazingly well - save for the stray hairs falling into his eyes and into everyone's food.

But he's still being the sweetest big brother we could hope for - kisses on Andon's head and excitedly saying "Hiiii!" when he sees him in the morning. Andon is a big 2.5 month old, just as Ori was. Andon's weight and height ranks in the 95th percentile. His weight, 15 lbs, is half of Ori's current weight! But he's doing great and, for the most part, is even managing to sleep through many of Ori's noisy, medication-induced outbursts throughout the day or night.

Been a while since we've posted an update - apologies. But now you're up to speed. And as for future events, after this week's big chemo session, there is a likely blood transfusion for Ori in each of the two weeks that follow. Then we'll be inspiringly close to the end of this intensive first 6 months of treatment, when our weekly oncology clinic visits will become monthly, and hopefully our boy will feel more like himself again. :)

Happy New Year! Be well...