Brighter Days Ahead...

Jacob smiled yesterday. He's been reaching out his hand, sometimes for one of our fingers...other times we give him a thermometer or plastic syringe to play with. He kicked back and watched Barney & Blues Clues and we would try to give him his space so he didn't feel we were constantly observing him (which we were). He continues to make progress with the ventilator, and we may be able to extubate him on Sunday or Monday. We understand that we may encounter more bumps in the road, but the doctors are very optimistic.

Jacob has also responded well to the first round of chemo. His liver and spleen are noticeably smaller (based on measurements by the encologists and PICU doctors), which means we could see positive physiological developments in the weeks ahead. These would include an improvement in holding his blood counts (without needing transfusions as frequently) and his ability to retain albumin. These are big steps in controlling (and hopefully eradicating) the LCH.

Last night was tough for both Jacob and the nurses. Around 4:00am it was time to turn him in the bed (this happens every 3-4 hours to stimulate bloodflow and avoid pain of being in bed for weeks). The process isn't fun for Jacob, since he's got multiple nurses manipulating him while making sure none of the tubes and IV lines are out of place. Once he was settled and comfortable, in walked the X-Ray team for their daily chest X-Ray (an hour early). So the nurses had to undo the turning so he was flat on his back. X-Ray was done quickly, but Jacob wasn't happy. One of the few weapons he has left in his arsenal is his perfect timing of the massive poop. So just to make sure the nurses were in on his misery, he opened the floodgates right as the X-Ray people were out the door. New sheets, more turning, the saga continued. Just for kicks he spiked a fever of 102+, and the unrest continued past dawn. By 8:30 his fever broke and he was able to seep into a very deep sleep. His heart rate crept down from the 130s to between 80 & 90. Songs of note during his sleepy journey:

"Promenade" (U2)
"Buckets Of Rain" (Bob Dylan)
"Amazing Grace" (Martin Sexton)
"Dressed In White" (Jonah Smith)
"Orange Sky" (Alexi Murdoch)

Keep the songs coming via email. Thanks to everyone for the continued messages of love and support through email, snail mail and Facebook. It really helps us so much.

We Love You.