Friday, June 25, 2010

June 25: Day -7

First off, I forgot the camera, so this is a rare, photo-free post. I'll double up tomorrow. I just love bringing you in through pictures as well as words. I feel like the clearer you can see what we see, the clearer your prayer and intention can be.

T-7. Last night, Bella woke up at 3 am and rocked, dry-heaved, hiccupped, and cried her way to 6 am this morning. That was a drag. At one point around 5ish, our night nurse Julie walked in to me sitting in the chair pushing Bella in her stroller with one hand back and forth in the darkness and silence. It was the only thing I could do. She asked, "Would you like me to rock her for you (so you can get back to sleep)?" The staff here is like that. They are simply amazing. They walk in at night and use a big mag flashlight to work by if the lights are out rather than turn on any lights and possibly disturb the patient or parent. They KNOW how crucial rest and sleep are to everyone's outcome. That is really cool. I don't have to feel apologetic about wanting and needing sleep.

Bella gets physical therapy 3-4 times a week as well. The have a mat and toys and we go to work for a little while in the mornings getting her to stretch out her hips. Her hip flexors are really tight, and will develop abnormally if left the way they are, so we have to get her standing and tall kneeling as much as possible to release those muscles. We also have a chaplain, child-family life specialist, social worker, occupational therapist, and respiratory therapy (should it be needed) available. In addition to having a Care Partner that will work just with our family for the duration of the BMT, Care Partners stocks Unit volunteers almost every day. This is awesome, because they just come and take Ali and go play while mommy and daddy do bandage changes. Good services.

Bella is on a combination of ativan and benedryl to offset the onset of nausea, which typically begins today. So far so good. Having said that, I am back at RMH tonight for respite, so I hope things are quiet and uneventful up on the unit till I return tomorrow. Fill you in then!

We take it one day at a time, there is plenty to chew on just within a 24 hour period. Bella's tentacles are a moment by moment ordeal. Ugh. Imagine how fascinated YOU'D be at 12 months to have all these cool tubes and wires and plugs and valves coming off of you! So far, the busulfan has been gentle to Bella. We don't expect the same from the cytoxan which begins on Sunday.

Tomorrow, Ali gets to spend the day again with Erin, Logan, and the kids again as it is Ellery's birthday party tomorrow! Also, I get to play soccer again. Even though I aggravated an old injury last weekend, my brain needs the release, and the net effect is still positive. We are looking into finding a nearby Zumba class for Ang to plug into. That's her stress relief. It's all about keeping the equation of stress and stress-release in balance. When the stress side of your equation spikes, don't fool yourself into thinking the typical amount of stress-release will suffice. Remember Newton's Laws of Physics? Every action has an equal and opposite reaction. This is the yin yang duality of the universe explained in a most succinct way. You got 3 new stressors? You better find 3 more stress relievers. The last thing Ali and Bella need right now is a parent sidelined by a stress-induced illness or disease. It is our JOB to be well and healthy right now.

How 'bout you? Is your equation in balance? If not, what is ONE thing you can do the day you are reading this to move it closer to even? Post that thing as a comment here. Tell the community. Make it public and that'll REALLY get the fire burnin' to get in gear! Don't make the mistake of thinking you're "taking time out for yourself," that is a load of..... You are building IN your ability to be the person you want to be for your self, your family, and your community. Get in balance. Thanks for enduring my soapbox! :)


  1. My biggest de-stresser, is going for a walk. Also, blogging helps a lot. I have PTSD so I have many different things to help with stress. There isn't one that always work though, sometimes you have to go with what you feel you need in that moment.

    Praying for you guys.

  2. Even though I HATE the elliptical and don't love working out, it makes me feel a lot better afterwards... plus, it's just "GETTING OUT," which doesn't happen around here much. I admire Ang for doing Zumba. It proved nothing to me except how white and uncoordinated I am. :) Glad Bella (and you guys!) are hanging in there. Ali's just going to think she's on a super vacation. I'm so glad there is so much for her to do and so many people happy to love on her. Praying for you guys - hope, peace, strength.


  4. I need to run and continue yoga to keep it closer to even. Thank you for this post Tim, I do feel much anxiety over taking time out for myself and I do know it is a load of ___. It is my job to be the best parent that I can be. You all are amazing!
    Big hugs and big prayers.
    -Robin Setto

  5. So glad to hear you both are managing your stress, I believe my own lack of self care when my infant was undergoing surgeries and health issues brought on my leukemia just three weeks after grace was declared well. Keep it up and stay well, positive and centered. My prayers are with you!
    Angela Ostermann

  6. So glad to hear things are going well... keep that positive attitude!

    I recently started running, and along with crafting, it is helping to keep me balanced and sane :)

  7. A large pot of tea helps and I like to work things out in my mind when I am gardening. Weeding is particularly therapeutic. If that doesn't work then writing about my troubles always puts things back into perspective :)I hope these next days will go very quickly for you all. My thoughts and prayers are with you, Laura V.