Sunday, August 18, 2013

Back in Business, Day -9

Some upsides to being back in the hospital:

1. The nurses are now responsible for Sam's medicines and lines and such. Big relief to not be the primary providers of medical care.

2. Yeah, that's all I've got.

No, seriously, we are grateful to be moving forward. Even though this new step is scary and unknown, and brings with it some frightening possibilities, it's time to move forward. Sam was not in any sustainable place, and this is the only possible option. And so we are here.

Sam has officially moved into room E585*, an east-facing room with a big bathroom (the jackpot!). It's all decked out in frogs and turtles and Sam's favorite stuff.
Carrying in some of his stuff (like the hat?)
This kid is serious about decorating...

The mostly-finished product -- decor to be improved upon as time goes on, of course!
It was the first time that Sam was admitted while the whole family is in Milwaukee, so everyone came over to bring some of the stuff and check out his new digs. Then they trooped back over to Old McDonald's House for their own playtime and bedtime....while Sam and I (mom) settled into hospital routines. A snack...

 Some Uno....
And finally a whole poleful of medicines. Wow, there's a lot of details involved in this BMT (bone marrow transplant) process. Sam's on a heparin drip, a couple of prophylactic antibiotics and antivirals, and a bunch of fluids. Plus antifungals and some other stuff I'm sure I'm missing. Remember how I said I was happy to turn it all over to the nurses? Yep....especially when he spiked a small fever this evening. None of these meds are particularly reactive, so they drew cultures and hopefully there's nothing that should be cause for concern.
THIS is only the beginning....
Tomorrow is Day -8. From now on, our days are numbered, first in countdown, and then in countup. The countdown days are the "minus" days and the countup days are, you guessed it, prefaced with a "plus." It's just how it is done over here in TransplantWorld. Tomorrow is the first of three days of twice daily Total Body Irradiation (TBI), which is new, scary, and comes with a whole host of long-term side effects. We are most hopeful that the most lasting long-term side effect of TBI will be ridding Sam of the leukemia forever. Can't wait to be on the plus side....

And so I type this from my perch on the couch in Sam's room...the whoosh of the IV pumps has already lulled my boy to sleep and I am so grateful to put him into the skilled hands of our team. I pray for their knowledge and skill, their training and their experience, their strength and fortitude that will guide us down this path. Where they lead us, we will follow.

My phone lit up with messages today from so many of you...sending good wishes and love to us as you knew that today was the day. Both Michael and I continue to be simply overwhelmed by the love and support -- it carries us along, it buoys us up. Thank you.

Today is the 18th day of the month. It's silly to read too much into these things, right? But I can't help but hope that beginning today, the CHAI day of's good, right? I'll take what I can get....

*Sam's address at the hospital is:
Sam Sommer, E585
Children's Hospital of Wisconsin
P.O. Box 1997
Milwaukee, Wisconsin 53201-1997
*Don't feel that you have to send him anything!


  1. May you, Sam & your family know only success, strength & peace. God bless.

  2. I'll be with Sam every day as always. My prayers are with him as you
    count down and up and through to the best of health.

    All my love.


  3. Phyllis, I just wanted you to know that we're thinking of you and Sam and sending our love for Shmuel Asher and his entire family!

  4. Refuah shleimah
    Ellul should be a good time to make a new healthy Sam.

  5. Sending positive thoughts and vibrations Sam's way!

  6. We've been thinking of all of you and praying very hard for smooth and successful sailing through these uncharted waters. I can't help but think that Sam is like Nachshon -- bravely leading the way to freedom while we watch nervously from the shore. So while he may be nose-deep in the water now, we'll keep the faith and rejoice as he emerges triumphant on the other shore.
    Much Love,
    The Kalmans

  7. thinking of you and your beautiful family. Sending love, hugs and prayers your way!

  8. Sam's Omaha Fan Club is cheering you on! As you begin this next part of the journey, we pray for brilliant, compassionate, kind and loving doctors, nurses and caregivers (that includes parents, too)! Thinking of you every step of the way!

  9. You are all a constant source of inspiration! We continue to pray and send love and compassion! The Schroeders

  10. Here's to knowing that every - is really a big, fat +!

    Hugs, prayers and good wishes going your way