Medical Update

We wanted to provide a brief medial update.  For those less familiar with Emmett's treatment history, we started him on the Dana Farber protocol for treating ATRT in March.  The protocol involves an induction phase and a maintenance phase.  The induction phase involves surgery, chemotherapy, radiation (with chemotherapy), followed by more chemotherapy.  Induction typically lasts about five months.  The maintenance phase consists of more chemotherapy but at a lower intensity than induction chemotherapy.  The maintenance phase lasts seven months.

The key metric in determining survival is whether the tumor is gone at the end of induction chemotherapy.  Those who have survived have been tumor free at the end of induction.  Those who have moved onto maintenance therapy still having bulk tumor visible on their MRIs have eventually passed away.  Unfortunately Emmett still had tumor on his C7 nerve root between his spine and his left brachial plexus on his 9/5/12 MRI at the end of induction.  This left our doctors scratching their heads as to the best path forward.

Our oncologists recommended two measures for getting rid of the remaining tumor.  Option one is high dose chemotherapy with stem cell rescue.  Option two is drastic surgery to remove the tumor which would leave Emmett physically disabled to some degree, but to what extent they can't say.  The oncologists recommended doing surgery first followed by high dose chemotherapy with stem cell rescue to mop up any remaining cells.

The neurosurgery team was not so anxious about a surgery that would leave Emmett with a disability, especially if the oncologists couldn't convince them that the surgery improves Emmett's chances of survival (which they can't).  Meanwhile, the stem cell team came back indicating that they wouldn't accept Emmett as a patient if he still has bulk tumor because stem cell alone wouldn't be enough to get rid of the remaining tumor.  This left our oncologists leaning harder on the surgery team.  Twice in September we told our oncologists we'd like to move forward with surgery, albeit hesitantly, and twice the surgery team refused to schedule the surgery.  Needless to say there's been a fair bit of friction between Dana Farber pediatric oncology and Boston Children's Hospital neurosurgery over the last month.

One thing that makes this so difficult is that there is no clear best path forward...how much are you willing to sacrifice to increase your child's chances of survival?  What if there's no guarantee that you're increasing their chances of survival at all?  Where does it leave you if your medical teams cannot agree with on what path forward presents the best outcome for your child?  Honestly there are no best answers, no clear best path forward.  Dr. Chi indicated that this is probably the most ethically challenging case she's had to consider.

Finally, in early October, our doctors came forward with an interim plan: conduct two more rounds of chemotherapy similar to what he received previously in induction, then re-evaluate to see how the tumor has responded.  If the tumor shrinks or remains stable, that strengthens the case that we have some control over the tumor and justifies surgery to remove the bulk of it.  If the tumor continues to grow through therapy, that indicates that we can't control the tumor so removing bulk still doesn't pose a good long-term solution and other options need to be considered (what those options are we have no idea).  So we started down this path early this month and are about to start the second round of chemotherapy today. (In the meantime we're pursuing second opinions at other hospitals to make sure our doctors haven't missed anything.)  Emmett also had a round of intrathecal chemotherapy in September while our doctors were struggling to come to consensus on what to do.  He also had an MRI (to serve as a baseline for these two interim rounds of chemo) in conjunction with the first round of chemo this month which indicated no significant changes since early September.

The good news is that Emmett continues to do well clinically!  He has lots of energy and spends every waking minute of every day wringing out every ounce of fun he can.  Sad as it is to say, he's been our strength through it all, often buoying us up when it should be just the opposite.

Clearly this has been a difficult time for us...much prayer, pondering, fasting, introspection, and soul searching.  We appreciate so much all of you who are praying and fasting with us!  (Go City View!)  We're anxious to move forward with therapy, but we're also loving absolutely every second of every day we get with Emmett having full use of his arms.  (Though yes, his left arm is already somewhat impaired).

We've seen many miracles throughout Emmett's treatment and we feel strongly that more are in store.  Please pray they continue!

Emmett enjoyed seeing his name re-written on the scaffolding outside 9 North.