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 even introduced a few new moves like the "Sideways Earknocker" and the “Backwards Buttdrop."  Anyway, we had fun.    

Right after the last timber we left for the hospital.  Both the preparation and the surgery today went very well.  The pediatric surgeon met with us afterwards and we asked him how Jacob did.  He responded, “He did well,” and then added, “and actually I did pretty well too!”  Jacob took a long time to wake up and when he did he threw up a little but the nurses told us that’s a pretty common reaction.  Right now he’s receiving medicine through the line while he sleeps and it seems to be working perfectly. 

This surgery has always seemed to me the point of no return, the final commitment. 

And after our meeting yesterday with Dr. Filipovich, I’m glad.  We’ve known for some time that Jacob’s case was considered a severe one.  But Dr. Filipovich related a recent conversation she had with another doctor in Philadelphia who is trying to compile information about all of the known NEMO cases.  After studying Jacob’s genetic information, he told her this was the most profound NEMO problem he’s ever seen and immediately asked, “When’s his transplant?” 

Actually, that changed a bit yesterday too.  Everything has been pushed back six days.  Whereas we were supposed to stay in the hospital this weekend and start chemotherapy on Monday, they’re now going to send us home tomorrow.  Our new admission date is the Friday after Thanksgiving, November 24 – one week from today.  This means he’ll start chemo on November 25.  His new transplant date is December 5.

We’re choosing to view this as a blessing.  It took me a while to adjust because I’m impatient by nature and this is the second delay we’ve experienced.  Nevertheless, we think it’s for the best.  This new calendar will give the doctors a full week to assess the central line and ensure that it’s problem-free.  It also means that Jacob will not have to be in the hospital on Thanksgiving Day.  And finally, Jodi is beside herself with excitement that Jacob will now be able to help decorate the apartment early for Christmas. 

So it’s all good.  Our decision to move forward with transplant has been confirmed beyond all doubt.  Jacob has taken the first big step with today’s surgery.  There’s now a catheter coming right out of his chest.  He calls it his “heart highway” and if you ask him what’s going to ride on his heart highway he’ll say “bone marrow for the BIG immune system.”

We continue to be awed at the support we’re receiving.  Thank you – the encouragement is keeping our spirits up.  Please pray that Jacob’s line treats him well and that he remains 100% healthy for the next week so that we can bring him back next Friday with his game face on.