Saturday, June 26, 2010

June 26: Day -6


This has to be short. Windows of time on the unit are brief to blog as sleep is more important. It's like that phrase that no one ever can actually follow for newborns: Sleep when they sleep. Yeah right. Well, in this case, we HAVE to.

Day -6 came and went rather uneventfully on the unit. No news is good news around here! This is the last day of busulfan, the first chemo drug. Tomorrow, begins 4 days of cytoxan. Bella's nurse described it as "pure hell." Great. Thanks for clouding my space. It's the really icky stuff. Yeah, I said icky. The good news is that after tomorrow, we don't have to do daily dressing changes. busulfan leaks out the skin, whereas cytoxan leaks out the urine. Sooo... diaper changes will happen every 2 hours round the clock. They begin Bella on a saline flush tonight to start to really mobilize her system to flush flush flush so that when they administer the cytoxan tomorrow morning at 10am, her body is already is fast flush mode. This will help protect her kidneys from any unnecessary collateral damage. Combined with an oral drug she is already taking called ursidiol ( I think I got that right), her liver and kidneys are as protected as they can be.

Ali and daddy enjoyed a play date with Logan and Ellery at their house today. Unfortunately, daddy didn't get to play soccer (no game today) and watched as the U.S. were eliminated from the world cup. I'll skip my thoughts on the world cup to spare you since 98% of you probably don't follow soccer. Suffice to say, I'm proud of our boys, but hoped they'd have gone further.

Bella is still in great spirits most of the time, but stayed up from midnight till 4am this morning, so clearly, sleeping through the night is history.

Chillin' after her daily dressing change...

Here are the photos from yesterday I promised. Thank you all for your ongoing support and for sharing about how you stay balanced! That was great to read. I want to know more about you as well. This is a special connection we all have. At no time in human history could any of our ancestors walked this path together in such a way. I am deeply grateful to be alive right here right now, today, in 2010, in Minneapolis, MN, inside a little hospital room, listening to thunder rumble through the windows that don't open. This room is not very big, but I know I speak for Ang when I say we don't feel alone in here. Thank you for coming and staying with us through this. We're all better for it. See you tomorrow.

Check out how well I balance!

The Tentacle Pole...

Ali rocking her kid's face mask...

Bella doing tummy time in physical therapy

Bella practicing standing in PT...


  1. This is like my nightly bedtime story...
    Thank you for posting, even in your exhaustion.
    Can't wait to read the happy ending...and the sequel...

  2. Praying extra for the next few days while Bella gets the icky stuff. Hoping she tolerates it okay. Lots of hugs and warm wishes to you guys during the next few weeks. Please give your adorable daughters a hug for me. Love Leah's Nana

  3. Hey, thanks for posting again and for more pictures. She looks great in spite of all the meds. I love those socks that look like shoes! Hope you are enjoying the games. Everyone is Crazy for "football" here right now in Germany. Who are you rooting for now that the U.S. is out of the running? Thinking of your family daily. Laura V.

  4. I love the picture of Ali in the mask. What a doll! Praying for Bella today as she starts the new medicine. I too am a soccer fan and am bummed that the U.S. lost. What organization are you playing soccer with? I play with Cities Sports Connection (CSC).
    Minneapolis, MN

  5. Side note of possible diversion... we were sad about the World Cup here too! Both Mason and Maxwell are in club soccer and avid fans.
    Prayers and good energy are being sent your way.

    "Love one another and help others to rise to the higher levels, simply by pouring out love. Love is infectious and the greatest healing energy."
    -- Sai Baba

    -Michael and Robin Setto