Wednesday, September 11, 2013

Goals - BMT +15

Dr. M had a conversation with Sam today about goals.

Goals for feeling better.
Goals for eating.
Goals for ***going home***

Yep. Those words were said.

Not today. Not tomorrow. Not even this week.

But it's on the horizon.
Way way way off where we can just make it out in the distance....a tiny speck on the horizon....

White Blood Count: 1.2
Hemoglobin 11.6 (in all fairness, he got a unit of blood yesterday to support the recovery)
Platelets 116
ANC of 168
(Just think, in previous rounds of chemo, these would have been phenomenal-going-home numbers. BMT is a whole new ballgame.)
Being silly with the pulse-oxygen monitor
Some things in our way....well, his blood pressure continues to be a little bit of a problem. The combination of steroids and anti-rejection drugs can do that to a body. It's a peril of medicine, right? Each one helps and hurts, and the doctors have to weigh out the benefits of the helping with the hindrance of the hurting...(so far, the fungal problem has not come to fruition. Whew!)

Also, eating. As I've said before, Sam complains that everything tastes bad. (We appreciate all the input from those of you who have experienced similar things...) Now it has become a place where Sam can exert some control. I'm sincerely hopeful that as we start to wean him off of some of the other medicines, like for pain and nausea and fever-reduction, he will actually feel hungry and compelled to taste and try different foods. The doctors are not concerned about this, they say it's completely normal. Of course, as a mom, I'm desperate to feed my kid! But I listen to the doctors on this one, since I know they know what they're talking about. It also helps that he's on IV nutrition, so we're not worried for his health in that way. Still, it's an important part of his recovery. We are currently compiling lists of foods to taste and making charts....

Medical stuff out of the way, we're just working on keeping Sam happy and active. There was a lot of Wii played today with Dad, and a special delivery from Adam of some cool Nerf guns and a bow and arrow set. It provided quite a bit of entertainment today! (Thank you!)
This was after David taped the target to his own chest and let Sam shoot at him! Thank goodness it's Nerf.
Sam also learned a cool math magic trick from a set sent by a friend (thanks, Jill!), and he used it to bewilder and amaze his nurse....
...and then his brother.
And then, in one of my favorite moments of the day, amidst a massive Nerf battle between the brothers, in walks Dr M, of the shofar fame yesterday. Today he joined in the battle....(on Sam's team, of course...oh, and they're not aiming at me, the photographer, but at David.)
There was a whole kerfluffle when David sent a (Nerf) dart right at the doc and he retaliated with a water syringe...and then the Bears/Packers business got involved because David was using a Bears pillow as his shield....and then it really got out of hand....
Um, yeah. That happened.
(His platelets are GREAT. Oh, and Dr M. didn't actually shoot...whew!)

Tonight's Epic Nerf Battle confirmed for me One Important Thing:
We spent a lot of time debating whether or not it was a good idea to keep the whole family together, to uproot our kids from their schools and their friends, and to bring them here to Wisconsin. We agonized over the decision....and tonight, as I watched the boys play and laugh and scream with I watched Sam, full of energy and excitement, and David, totally at ease with the whole situation.... I was able to say this (with tears in my eyes both from laughter and well...all of it):

Best. Decision. Ever.

And that's where we are today.


  1. Great story for today - a day fraught with negative emotion. Thanks for brightening my day

  2. Wonderful report, wonderful pictures, wonderful parents, wonderful kids, wonderful Doc. Love is always the best medicine, and we love you bunches.
    The Kalman Family

  3. What a day! Let Sam know that for awhile, my dad had the record for fastest-ever-escaping-from-the-hospital after a BMT in 1992 - 41 days (that was a big deal back then, from what they told kindergarten Logan). I think Sam's got him beat, no competition.

    If he wants a nerf war, I've got a whole army of teen-people who could get a lot of camo and get behind that idea...

  4. I guess they've changed things. My fried was a divorced mom of four young kids and couldn't see them according to drs instructions. She said that her favorite food for years was ice coffee, that thick stuff like coffee ice cream.

  5. This comment has been removed by the author.

  6. Sending hugs to your whole beautiful family! You are an inspiration. Sam is an inspiration. Wishing you a year of good news and positive energy. Shana tova ug'mar tov!
    Vicky Glikin