It’s that time again, time for another Super-JJ update!!  Sunday, October 9th marked JJ’s 100 days post-transplant.  This is an important milestone in the world of bone marrow transplants because it marks the point when he begins to be monitored much less frequently.  I’ll start out by saying that he is doing incredibly well, considering everything that he’s been through this year. 

JJ was given the transplant department’s stamp of approval, meaning that they ran a barrage of tests and decided that he was doing well enough post-transplant to be transferred back to the care of the Neuro-oncology department.  His blood counts are holding steady and he no longer requires weekly blood draws at home (yay!).  His initial immune system testing showed that his ability to fight off infection is still very limited and wasn’t worth doing any further in-depth testing at this point.  While we were hoping that he’d be further along, the doctors reassured us that it can take upwards of a year to get his immune system functioning at a relatively normal level and they’ll check again in 3 months. 

JJ no longer has to go to weekly clinic appointments and will only be seen about once a month.  He was taken off his overnight IV feeds because they believe that he is eating and drinking enough to properly sustain him and flush his numerous medications through his system.  He still has his line in his chest, but because it is no longer being used, we hope that it will be removed very, very soon, since this is where his greatest chance for infection comes from. 

Two weeks ago we met with Dr. Sun, the neuro-surgeon who performed the 34+hours of surgery to remove JJ’s tumor.  As we suspected, he wants to go back into JJ’s head to help reinforce his skull where the incision was made.  Because his tumor had been so large, the pressure of it pressing against his skull caused the actual bone to thin.  After his surgery, the thin edges of the skull along the cut began to disintegrate and prevented it from healing properly.  This means that the piece of skull that was cut (from right above his ear, down along the back of his head and directly up the middle to his forehead), is just sort of floating there without being attached to the rest of his skull. Because the brain fluid isn’t being properly contained, the side of his head is squishy and soft (it really does feel as icky as it sounds when you touch it).  The surgery will hopefully correct this by using pieces of metal to bind the floating bone to the rest of the skull and may require the use of some synthetic bone to make up for the disintegration.  Although it sounds complicated, the neuro-surgery team made it seem as though it is fairly routine.  The most serious risk is that of infection, but as long as that doesn’t happen, JJ should only be in the hospital for 3-5 days.  Because his immune system is still highly compromised, he will be in an isolation room within the ICU to help prevent him from coming in contact with all the various germs. We’re keeping our fingers crossed that we are able to get our favorite ICU nurse Maria who took care of JJ before and after his tumor removal!!  His surgery will probably be in the next few weeks, and although we are dreading going back to the hospital, we are anxious to get this next bump in the road over with. 

  Our days right now consist of helping JJ catch up on all the skills that he should have been mastering during the 6 months that he was locked up:) We’re deep in the trenches of potty-training, and working hard to normalize the meal-time experience (use your fork; no you can’t have all 972 of your toy cars on the table with you).  Jaxson celebrated his 1st birthday last week and had a fantastic time with his friends and family, eating cake like it was going out of style!!  We wish JJ had been able to come help his little brother get his party on, but hopefully by next year, JJ will be back in action!!

I had really thought that this was going to be a short blog entry, since it seems like not too much has happened in the last month or so.  But anyone who knows me, knows that keeping it short is not one of my strong points:)