Status

We have still not gotten the results from Emmett's LP.  We should receive them tomorrow.  We did hear from our oncologist this week, however.  In advance of getting the LP results, they have already concluded that Emmett does need some type of treatment again.  Their rationale is that this small nodule is in the area of his primary tumor, and it's growing.  "What else could it be," they ask?  The good news is that there ARE three treatment options (all clinical trials), and the side effects are minimal for the first two.

The first option they call "EZH2".  This is an oral medication that Emmett would take at home twice a day.  It shouldn't impact his function or quality of life.  The one downside is that they don't know how much of this drug will cross the blood brain barrier and get to the tumor site.  But it has shown some efficacy on some patients.  And they've already identified the correct dose level.  Emmett would have to check into the clinic once a week on this drug, but otherwise this would be completely outpatient.

The second option is an immunotherapy drug.  In essence this drug tries to activate the patient's immune system to fight the tumor.  This is an IV drug given once every three weeks.  The risk of this drug is that it can potentially unleash the patient's immune system and cause autoimmune problems, though generally just while taking the drug.  It may cause inflammation around the tumor site (and other areas) that may make differentiating disease progression vs. inflammation difficult.  This would also be outpatient.  The correct dose level has also been identified for this drug.

The third option is an "anti-angiogenic" therapy that tries to cut off a tumor's blood supply.  This protocol is out of Vienna would use more traditional chemotherapy drugs, but in a different way.  It requires the patient to spend a lot of time in the clinic with intrathecal therapy (i.e. brain injections) 5 days a week in the clinic along with other oral drugs as well.  So this option would be labor intensive.  The upside is that though this protocol uses traditional chemotherapy drugs, it would be a lot less severe than what he got in his prior chemotherapy treatment.

So those are the main treatment options.

The good news is that Emmett's quality of life would be pretty good with all three options, and especially with the first two.   And it sounds like Dr. Chi will leave it up to us as to when we would start -- we could begin immediately, or we could wait until we start to see symptoms from the tumor...but she leans towards starting sooner rather than later.

The other good news is that in order to be able to start one of these trials, Emmett's tumor must be at least 1 cm in one dimension.  Right now it's only 0.9 cm..and in some strange way, that makes me very happy.  I hope Emmett never qualifies these studies.  I hope that the spot the doctors are seeing somehow reduces on it's own, or turns out to be inflammation or something else benign.  That's what I'll be praying for.  And if it turns out that it is tumor, I'll be praying that it's susceptible these treatments.

We continue to count the miracles we've seen on our journey.  And there have been so many!  We have enjoyed five wonderful, precious, joyous years with this sweet boy since he was diagnosed with a disease that could have taken his life within weeks.  Every single day has been a tender mercy from God that will never be taken away from us.  Five years, five months, and seven days since Emmett's diagnosis adds up to 1,984 days -- 1,984 miracles we've been blessed with.  God has blessed our family so much!  And we are so thankful!  And will always be!

We fast and pray that the blessings will continue!