Hi there members of Team JJ,

  I know its been awhile since I’ve updated the blog, but mostly that’s because I’ve been keeping everyone updated via Facebook.  But just in case there are others out there who are not on our Facebooks, I thought I’d fill you in on what’s been going on.

6 weeks ago JJ had his regular scheduled 3 month MRI.  It’s always nerve wracking (we cancer parents call it “scanxiety”), but we really weren’t overly concerned.  JJ was put under anesthesia for about an hour and a half while they did a scan of both his brain and his spine.  He did fine during the procedure and was back at home by noon.  The hospital usually notifies us that same afternoon about the results, mainly so we don’t spend the night worrying that something is wrong.  I started doing just that when by 5:00pm, our nursing coordinator hadn’t called.  My immediate feeling was that something was off, that perhaps they had needed to seek out a second opinion.  After a very restless night, I woke up early and left a message for our oncology nurse, Philippa. 

Philippa called me back later that afternoon, and as it turned out, I was right to worry.  They had found a spot on his brain that looked larger than it had 3 months prior.  This was not what we wanted to hear; the cancer might be back.  JJ’s oncologist, Dr. Torkildson scheduled another MRI for 6 weeks later because they needed to give the spot a “chance to declare itself” if it is cancer.  They said that there’s a chance that it could be an imaging error, for example, the positioning of his head could have been different in the two MRIs, which may have caused the spot to look smaller 3 months ago, when it was in fact the same size.  They also said that it could have been caused by the way that the MRI was cut (it takes the pictures in 2mm squares and then puts them back together).  We are keeping our fingers crossed that it is an imaging issue but we are VERY aware of the fact that ATRT is highly milignant and more often than not reoccurs when treated only with high dose chemo/stem cell transplant. 

When we met with Dr. T in person, he said that this is not something that is highly worrisome, but it does raise concern.  JJ’s next MRI is scheduled for Tuesday, April 3.  After that we’ll have a better idea of what the future holds for the Moisa family.  We are obviously living on pins and needles, waiting to know the answer.  I can’t even let myself think about what we are going to do if the cancer is back.  He’s had such a tough year already and it seems like he’s just starting to feel semi-normal again.  Putting him through another year of hell just seems like torture.  Obviously, if the cancer is back, we have no choice but to go ahead with more treatment.  The doctors have told us that the most likely option is going to be focal radiation.  Because JJ was too young when he was originally diagnosed, his treatment plan didn’t include radiation, but now that he’s 3, it is a viable option.  We are seriously hoping that he doesn’t have to go through that, but we understand that his chances for long-term survival are hugely increased if does go through it.  Children who undergo radiation for ATRT have a 60-70% chance of survival, whereas those who are treated with only high dose chemo have about a 14% chance.  JJ’s chances were even lower than that because of his young age. 

Please keep JJ in your thoughts and prayers on Tuesday, as this is a serious crossroads in his recovery.  The next few days are going to be agonizing, waiting to find out if this is a relapse or not.  Fingers crossed that it is an imaging error, but while we hope for the best, we prepare for the worst.  Love and thanks to all of JJ’s supporters.  All of you make such a difference in our lives!!