Thursday, September 26, 2013

Count & Lift - BMT +29 and +30

Michael: Sam is counting the minutes. He is ready to get out of here. He knows he has to eat, but doesn't feel like eating. He tries new things and gets a few bites in before he is done or disinterested. Sam is doing great with his meds and swallowing his pills like a champion even as more pills are added as we wean him from IV meds. He doesn't even blink. He has his eye on the prize, sees where he wants to be on the other side of the window. I wonder if he dreams of the food he will eat outside just as he fights eating any food on the inside.

Phyllis: No kidding. The kiddo has been cooped up in here forever! Okay, just 40 days....I feel sometimes like we're on an ARK!

Michael: I promised to scare him with the scariest dinosaur movie ever. He was totally up for that (FINALLY!) so we watched Jurassic Park together. Sam thought it was amazing, not as scary as he thought it would be, and that the dinosaurs were out of this world ("Dad, why didn't they bring Samuel L. Jackson's arm on the helicopter with them?" "Um, Sammy, I think the dinosaurs ate it." "Oh, right, yeah, that probably happened.")

Phyllis: You showed him WHAT? Okay, fine. Hospital rules....

Sometimes they let BMT kids go out on a "pass" before they are fully discharged. They know that he's ready to be out in the "real world," but they're still monitoring how he does with the meds, etc. Also, they are reluctant to release a kiddo right before the weekend. So we're here....but Sam has already requested a pass...It doesn't matter how much time you get a pass for, out is out. And Sam can't wait to get out.

Michael: check out Sam's newly reduced IV pole -- just fluids and daily anti-fungals. He handles all the rest by PILLS.

Phyllis: Our kid is a rockstar. He takes after his dad.
Michael: Today we waited for our pass. We waited and waited and waited. The doctor said she would be here....and then she got caught in a meeting. We waited and waited. We even watched Jurassic Park. AGAIN.

Phyllis: We waited over at RonMac for the call too! We all wanted to go out on that pass.

Michael: Finally it was time. We got Sam all hooked up to his IV fluid backpack and he was ready to roll. He will need to be on IV fluids all the time, so this was also a practice-run for us. I was armed with his two o'clock meds and here we go....
With Nurse E, who helped get us all set up!

Mama + Sam
Phyllis: Sam totally wanted to go to the zoo. But because it took us an extra couple of hours to get out of the hospital and because it turned into a beautiful sunny day....well, our plans were thwarted. What's that, you say, how could sun thwart your plans?

Michael: Well, the doctors told us that we had to be extra careful about sun exposure because of the skin GVHD. It can make it much worse. So we nixed the zoo and went to....McDonald's for lunch!

Phyllis: He didn't each much more than a handful of fries but we were happy.

Michael: Then it was off to RonMac, for a relaxing family afternoon. I caught this rainbow on the wall of our room when we walked in -- a good sign for sure!

And then, like that, it was all over. Time to go back to the hospital.

Phyllis: There were tears. I was so scared that he would be upset going back in, and he was. But then I reminded him that it was an excellent practice at being out of the hospital!

Michael: Things were rough on our end too, so we had frozen yogurt to make us feel better:

Phyllis: Sam took a bath, he ate an orange, and things settled back into normal. I asked him what he thought about going out and he said it felt "weird." Also, he noticed how heavy the bag of fluids was in the backpack and how tiring it was (so I said maybe it was better that we didn't go to the zoo!). We also talked about the idea of "managing expectations" and that seemed to work for him!

He was clearly worn out from the day's activities but he continues to do well. He's still itching on his hands and feet, so hopefully they will figure out how to level his immune suppressants to make that go away....

He might be counting down the minutes, but it's nice to have a little lift-off every once in a while. This outing was just what we all needed to help everyone see the light at the end of this part of the tunnel. There is still a long road ahead of us, and we know that we're not there yet....but it's nice to be together as a family, to share ordinary moments and just hang out together.

Michael: How's the wifi over at the hospital, Phyl?

Phyllis: Terrible tonight but oh are things over at RonMac?

Michael: Everyone's asleep! Guess we should call this one a day?

Phyllis: Good plan, honey...good night!


  1. A taste of freedom.
    G-d willing he'll feast on freedom until 120.

  2. "Mama and Sam" picture? Oh, my heart.Wonderful to see Sam out and about!

  3. Pretty soon, it will be time to shout from the mountaintops::: Free at last! Free at last! Thank God Almighty Sam is free at last! xoxo