I just spent about an hour and a half writing a detailed entry, hit enter to update the blog, and lost the whole thing.  But I don't want to scare people and put up nothing.  Here's the Cliff Notes version:

Jacob started to show signs of fatigue today.  Jodi got into a license-plate bender but everyone is okay.  It was the hardest day yet for Jacob in the hospital but still pretty good with some real bright moments.  Tomorrow they pull out the "big gun" chemo drug.  His blood counts are dropping off.  We definitely feel like we're entering the deep waters.  Please pray against the naseau and mouth sores that typically accompany the drug he gets tomorrow.  The infusion will be around 10:00 a.m. so please think of him then.

That's all I've got left - good night. 

Jacob and Jodi had a good night together and today has been a pleasantly busy one in Room 21.  During and after rounds, the speech therapist and occupational therapist visited for a half an hour each.  They were great.  Since Jacob has been almost completely isolated from other children his age he’s not had any experience with turn-taking, etc. and they have some neat ways of teaching that sort of thing.  Most of their assessment and therapies are play-based and very creative.  For instance, one had him playing a combination of kickball and bowling:&nbs ...

Jacob continues to be strong and cheerful, amazing the nurses and delighting us.  He knows the names of his medicines now and wants to know which one you’re giving him as he opens up.

A new attending physician took over this morning and ordered a nasal wash to see if anything viral is causing Jacob’s congestion.  Our boy was even sweet during this procedure, helpfully identifying for us which nostril had the most “boogies.” 

A rather uneventful day, which is how we like ‘em around here.  Jacob continues to show real courage and a sweet spirit:  he took his chemotherapy today beautifully, actually pulling the large syringe towards his mouth with a grin.  Last night I struggled with this – here’s my boy looking me in the eye and smiling with complete trust while I, his father, feed him poison.  Jodi had some good words for me, reminding us both that the chemo has a specific job to do in this journey of healing – to wipe out Jacob’s cells.  The sickness and hair loss coming his way will be evidence that the chemo is doing its j ...

I have a feeling these entries are going to get quite a bit shorter now.  We spent the better part of today thinking about schedules - who's at the hospital when, who spends the night when, who watches Justice when, who has what cell phone when, when when the heck we're supposed to buy groceries, etc.  Days like these are 100% confirmation of my decision to avoid a position in administration at all costs.

Of course the good news is that we had at least some time and energy to think about all of this.  Jacob is doing very well adjusting to his "new home in Room 21."  He's already asked to "go back to our new home in Cincinnati" (our apartment here) which is hard to hear.  We told him that Room 21 is his new home for now, that someday we'll go back to our new home in Cincinnati.  Altogether he seems to be taking it rather well.  He's on more medicines now and they're really pushing IV fluids ...

Well, we dragged our feet leaving the apartment this morning but eventually got ourselves to the hospital.  We walked in together feeling sadness and hopefulness all at the same time.  After we checked in, the attending physician checked Jacob out and put some of our concerns (nasal congestion, bleeding at the central line site etc.) to rest.  She was anxious to get rolling.  Shortly after 9:00 a.m., Jacob took his first dose of chemotherapy like a champ.  He was awesome about it and the nurses were all very impressed.  This was a real answer to prayer so many thanks to those of you who lifted him up today.

The chemo is so strong that we have to wear gloves to change his diapers.  They've also added anti-seizure meds, anti-nausea meds, anti-gallbladder problem meds, anot ...

(Note:  if you haven’t watched the video on the home page yet, please check it out.  Just click “play.”) 

It's Thanksgiving Day... since my last blog entry, we’ve put up our Christmas tree, assembled a gigantic blow-up Santa / Frosty the Snowman ensemble outside of the family room window, and hung stockings on the mantle.

Between 10:30 and 11:00 this morning we played one last game of “Timber.”  This is a favorite in the Brown household.  The boys take turns standing on a footstool while we give them an announcer’s introduction.  Then we count "1-2-3!" and they jump, crashing and bouncing like a falling tree onto Jacob’s bed.  It’s a great time and can go on for hours.  However, it’s not among the list of recommended activities for young children with permanent central lines.  So we tried to make the last “Timberfest” memorable – Aunt Rebecca ...

Well, tomorrow we head to the hospital at 3:00 for IVIG therapy – this will require an IV site and a transfusion over several hours.  Jodi and I will also have some last-minute meetings with different hospital coordinators regarding the transplant.  We’ll bring Jacob back here tomorrow evening to sleep with Justice for the last time in a long time.  Then on Friday it’s game time:  surgery to insert the central line.  After a weekend of observation, he begins chemotherapy on Monday.

“Just a couple of days left,” was my immediate thought as I made my way to the kitchen early this morning.  After a little reading over coffee, I glanced over at Jodi’s computer and Chloe’s care page update was on the screen (see last blog entry.)  This is what her parents had written there:

Once upon a time there lived a beautiful princess named Chloe Mae Robinson. Princess Chloe passed away at her castle on Hospital Hill, Children’s