Thursday, June 24, 2010

June 24: Day -8

Today's entertainment provided by... Mickey Mouse!

I have to laugh. There is a really big day-at-a-glance calendar in our room. It says TODAY IS... then shows the number REALLY BIG. So I am looking at a giant TODAY IS 24, then under that reads Thursday. Under that reads June, 2010. Why am I describing this to you? When I first walked into the room, I thought, what good does that do Bella? She can't read! Now, just three short days into this journey, I realize, IT'S FOR ME!

Time is a paper construct that we all relate to like concrete.

Minutes of the hour, hours in the day, days of the week, they all just fizzle away on this side of the world. Yet, on the outside, I rush through traffic to catch every green light thinking, "Every second counts." I am the architect of my own anxiety. Aren't we all?

Today was a good day! Mommy and Ali went to the annual "Turtle Derby" outside in the plaza. This is a giant fundraiser the hospital does each year where they race... turtles. It's quite possible the funniest thing I've ever seen. Picture this: A blue tarp on the ground that spreads 12 feet long by 12 feet wide. On this tarp is painted a giant circle, like a wrestling ring about 10 feet in diameter. In the center, there is an inner ring maybe 3 feet in diameter. Now picture a 12" tall cylinder that sits atop the inner ring. The turtles are placed inside this holding pen, then, when the announcer starts "the race", the pen is lifted off and the turtles take off in all different directions at once. The first turtle to cross the outer ring in its entirety is the winner. All the departments and nursing units raise money to put a turtle in a heat representing them. It is pure comedy. Then, add dancing, clowns, kids, food, and you have a good time. They even televise the event so we could watch it up in our room.

Needless to say, what's the first thing I see when I turn on the TV? Ali dancing with a clown. Awesome.

Then, Ali went off on an all-day play date with my friends the Spectors. They are sooo great. Logan is my childhood friend from CT who became a researcher of childhood cancer here at U of M. He knows Dr.s Tolar and Wagner. Anyhow, they have just opened their family up to us so generously, we are so grateful. Ali went to the pool, then got to go to soccer practice with the Owen and Ellery! That made daddy very happy!

Ang and I did our afternoon dressing changes with Bella watching an endless loop of Mickey Mouse Clubhouse. The great thing about kids DVD's is that they feature a "Loop Play" or "Repeat Play" feature where it just starts over, and over, and over... and over. This is good for dressing changes because Bella doesn't care! She was sooo peaceful during bandages today. Not a peep. All without any pain meds as well. It is only day 2 of busulfan, so she is not experiencing any side effects from the chemotherapy yet. I tell you, when we do her bandages, there is a serenity that comes upon her. It often leaves as soon as we are done, too. She will either become more animated (or angry!), but it's usually after, not during. I tell you, it IS as if she knows this is all central to her plan. I had the experience today while doing her dressings of being totally and completely present in the moment. There was no world "out there." There was no "Thursday," no "June". Just me, Ang, and Bella, together. This is why I want to thank Erin, Logan's wife, again, because I knew Ali was happy and safe. It allowed me to just melt into the moment. Bandage changes used to be stressful. Now they are sublime moments of care, compassion, and tenderness. I only wish Ali was bigger and could participate in it more, but alas, it is all simply perfect as imperfect as it is.

Bella ordering dinner for daddy...

We headed off the night-time anxiety attack by giving Bella some happy meds (ativan) with her nighttime bottle. This kept her out long enough to slip into a deeeeeep sleep. We also did all her meds in the bottle, and did vitals before the bottle so once she fell asleep there would be no poking or prodding. We get better every day.

Before the meds...

... and after!

Now it is time for sleep. The moment by moment management of Bella's tentacles has left my brain quite tired. She has a lot of lines coming out of her body with pointy valves and connectors. Some of them really tore up her back and aggravated her belly during last night's fits, so great care is given to make sure she avoids unnecessary contact with them. Having Epidermolysis Bullosa and a belly full of sharp valves, lines, and tubes does not make for a good combination!

Thank you again for your comments. You give us so much strength; I hope my words of gratitude somehow capture a glimpse of how GOOD your comments make me feel when they hit my phone throughout the day. Ang and I call each other throughout the day and talk excitedly about all the different comments. We feel so... cared for. Thank you again, and good night.


  1. Just as you look for comments, we look for updates. Despite being exhausted, you are so good with this blog.
    Again I marvel at the joy and love...and the overall cuteness of your sweet girls!

  2. I just wanted to let you know that I pray for your beautiful daughter and your family daily. You are all true hero's in my mind. Thank you for the updates and I hope they continue to be good days!
    War Eagle,

  3. hey from across the hall. we hate those darn stop cocks as well. they used to tear rafi up at night as she would roll from side to side trying to get comfortable. we started to wrap them with mepilex transfer. this helped to a large degree. give it a try, worst is, you've wasted a bandage. the other thing you can do, is get the people here to give you the foam bed, a better version of egg crates, and when bella rolls onto the valve, it will just sink into the foam and cause less damage.


  4. Hi Tim & Ang:
    First of all I just wanted to thank you for the awesome updates, and secondly I just wanted to tell you guys that Bella and Ali are truly beautiful.
    I will continue to check in and also continue to pray that all goes well for Bella. Hang in there guys, you are not alone. Take care. Love Leah's Nana

  5. Just checking in on you guys! I'm so glad things are progressing peacefully so far.

    Ali sure looks like she had a great time.

    Thank you so much for the updates - here's praying today goes well also!

  6. Thanks for the post. I am happy to see that you are all doing well in spite of the circumstances. Are you allowed to leave the room with Bella at all? Hang in there. I am sending plenty of positive thoughts, prayers and energy your way. Lots of love to you and your family, Laura V.

  7. Your "report" is the first thing I look for each morning. I've been wondering the same as the post above - are you allowed to leave the room? I know that germs lurk, but just wonder how much freedom on 5D you have. Does Angelique have to scrub up when she comes from outside? What a delicate balance to maintain.....and you do it so well! So glad Bella had a good night with the sandman. Hugs, Terri R.

  8. I am amazed at how well you are adjusting to all the changes! Thank you for continuing to update us. Last night, while I was praying for all the kids affected by this disease, I couldn't help but send a special prayer for the parents. Stay strong!

  9. I came to your blog from Jonah's. Bella is in my prayers.

  10. Tim

    My thoughts and prayers are with Bella, you and your family. Your courage and faith are inspiring.

    All the best,


  11. In addition to the general love coming your way, we'll send special bedtime restful, peaceful night energy.

    Tell Ali she can do the turtle races again when she visits. Every Wednesday in Nisswa, baby.

  12. Fantastic updates, thanks for letting us share Bella's journey. Sending strength to her to get through the side effects. I know this will be all worth it in the long term. You guys are awesome! Jen.

  13. Still praying for and thinking of you guys all the time. I hope you are having an okay day. I know things will get bad before they get better, but we are all out here praying for you guys - strength, hope, perserverance, peace. Sending many hugs.

  14. My 18 month old has been through several hospital stays and surgeries, not near what sweet Bella is/will endure, but anxiety ridden all the same and all I can say is thank goodness for sleepy time meds. We would not have made it without them. Sweet Bella...and Ali...still praying!!!

  15. Thank you for sharing your family's journey with us and for allowing us to lift you in prayer. I find myself being uplifted by your writing - you definitely have a way with words! Wishing sweet Bella a good night this evening.

    Blessings to your family!
    Susan in NC

  16. I've found myself a lot today wondering how your family was doing and just now got a chance to sit down and catch up. Your blog is so beautifully written. Thank you for sharing your story.