Sunday, March 9, 2008

Last Day

Some old friends from Pittsburgh sent the girls a care package. There was a neat bracelet kit inside that allows you to slide letters on and off of the bracelet to make it say different things whenever you want. Sophie and Anna both made their own, then put one together for Henry that said "LAST DAY". He proudly showed it to everyone today.

Henry is doing great, more and more active every day. His legs are very weak from being essentially immobile for the last 2 weeks, so he's very unsteady on his feet, and has actually fallen a couple of times when he got away from himself. He complains that his legs hurt if he's up too long, but had endless energy for playing on the floor. He's also been riding his "mogocycle" around the floor at the hospital, which has got to be good therapy for those legs. We know he'll bounce back soon.

He'll be discharged on three antibiotics, to be continued at least until the next admission. He also will need IV nutrition, as he's eating and drinking nothing at all right now. We've been told it takes a few weeks for that to come back, and since there's no talking a 3 year old into eating when they don't want to, we're trying to roll with it the best we can. He tolerates the TPN very well, and his weight is stable.

I am again feeling the anxiety we had leaving the hospital after his first chemotherapy. His immune suppression is much more profound this time, and even though his numbers look good, he's at risk of serious and aggressive infections. This is why they've asked us to stay within a few miles of the hospital - if he gets a fever even fifteen minutes can make a difference between a nuisance admission and a life-threatening infection.

Our time at St. Casimir's will include lots of medical time - appointments, testing, and medications. I don't anticipate that our time there will be particularly restful for Bryan and I, though I can't wait to get our whole family together for longer than an hour. More than anything I'm looking forward to seeing this brave little soul get out of the hospital and see the world again. He deserves it.


Anonymous said...

Great driving Henry! Oh, and I love your hat. I'm glad to hear you get to leave the hospital tomorrow. I'll be thinking of you!


Anonymous said...

I agree that you are an awesome driver Henry. And your mom is a good jumper too.

Jen said...

I'm so glad that you're getting out for a while- our thoughts are with you!

Does your hospital have the Bravery Beads and SuperSibs programs? My daughter loved the bravery beads (the radiation bead is absolutely the coolest), and they had special beads for siblings as well. SuperSibs (for siblings of children with cancer) is an amazing program...we still get presents and encouraging letters from them every year, and they offer a lot of really great stuff for siblings. I can send you info if you don't have them :-)

t said...

Good for you Henry! I am so happy that you are doing so good and now you get to go on vacation! I hope you enjoy your time with your sisters and being with Mommy and Daddy! You all deserve it!

ms. t.

ps. Have you run over any nurses lately?

Anonymous said...

Enjoy your home away from home Henry! You all have to be so excited for today. Keep on riding Henry!

Love, Julie, Brad, Patrick, Andrew and Samantha

Anonymous said...
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Anonymous said...

Dear Henry,
Don't eat asparagus, broccoli, cauliflower, dandelions, easter eggs,fat feta cheese,ground up peas,hot tamales; jellied jerky; kibble or anything you don't feel like eating. Only eat chic a flic (sp), ice cream and pancakes w/ whipped cream and blueberries.
Miss Susan