Hi there, friends and family!  It’s time for another update on JJ’s condition to help keep everyone in the loop.

JJ has been home now for about 3 weeks, the longest that he’s been out of the hospital since this nightmare began!!  He’s enjoying every day and is living it up like a fairly normal 2-year old.  He has clinic appointments at the hospital every Thursday for monitoring, which will continue for quite a while, I imagine. 

JJ had his first post-transplant MRI two weeks ago, which was looking for any new cancerous growth or abnormalities.  While his brain looked clean, his spine showed an area of fluid building up.  This condition is called a “Thoracic Syrinx” and is basically a sack of brain fluid that isn’t draining properly.  While it sounds serious (at least it does to me), the doctors are not overly concerned with it.  They just plan on keeping an eye on it to make sure that it doesn’t press up against any nerves.  It’s not a life-threatening condition, but it could cause some neuropathy or nerve damage.  Because of this, he’ll probably receive MRI’s more frequently than was originally planned.

Towards the end of September, JJ will be transferred from the Bone Marrow Transplant department (BMT) back to the Neuro-oncology department, where he started out.  This means that BMT is satisfied with the results of the transplant and he will be managed by the neuro-oncology doctors and nurses from here on out.  Hopefully by then he will be ready to have the line removed out of his chest and we can stop giving him overnight IV feeds and finally be done with all the daily line maintenece.  Other than that, there really isn’t much else to report, medically speaking. 

On a lighter note, we are super excited to announce that JJ once again has eyebrows and eyelashes!! You truly don’t realize how important they are until they are missing.  His hair is also starting to grow back, making it look like he’s got a buzz cut.  Believe it or not, these simple little things are making him look a lot healthier!!

Because JJ can’t be around a lot of people, we spend our days just hanging around the house and going for long walks.  While it may sound boring to some, this is exactly the existence that we’ve been looking forward to!!  He wears his mask (which makes him look like a duck), any time he’s outside, in the garage, or in the car.  It’s so great that he doesn’t fight us about the mask, because  a lot of kids absolutely refuse to wear one. My only issue is that people constantly stare at him when we’re out walking…I want to tell them “Go ahead and stare, you are witnessing a true miracle child who’s been through more than you could even imagine!!”

It’s definitely been a huge, exhausting adjustment being home again.  When all of this started, Jaxson was just a tiny little baby who was pretty much stationary.  Now he is almost a year old and is into EVERYTHING!! Jaxson loves being home with the family and has adapted very well to his role as little brother.  He loves to take JJ’s toys and Ipod, showing us exactly the type of little bro he is going to be…a pesky one:) 

Once again, we just want to  extend our sincerest thanks to all our friends and family for the immense support that we have received over the last several months.  You guys are amazing, to say the least. The Team JJ wristbands have been a huge success, raising $4,500 towards JJ’s future Disneyland adventure.  We’re hoping that this time next year, JJ will be living it up at the Happiest Place on Earth!! Thank you everyone for helping to make this happen!!

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