Waiting in Boston...

Executive Summary:

1.  The doctors have a identified a slow growing mass, but do not know what it is.
2.  Please pray that Emmett's lumbar puncture comes back clear.
3.  Pray that the mass in question manifests itself as something that is not cancerous.

So we met with the team in Boston this week. In reviewing his prior scans they were able to see something in this location in his April, February, and January MRIs (which were all done in Boston -- how did they miss it? #RadiologistsShouldntFacebook&ReviewMRIsSimultaneously).  So it's been there for a while.  Since his scan in April, it has only grow perhaps 1 mm.  However, nothing showed up in this area in his October 2014 MRI.  So there has been significant change over the course of a year.

This news is both encouraging and discouraging.  The good news is that whatever this spot represents, it's slowly growing.  AT/RT is anything but slowly growing as evidenced by the time that Emmett's tumor grew back in 10 days after his first resection in Boston.  A 1 mm change in four months is not much.

The downside is that we've confirmed that something is definitely in this area, and growing...however slow.

The challenge is that there's no good way to tell what it is.

Though the neurosurgeon hasn't weighed in yet, the oncologist thinks this spot is inoperable...so we can't get a biopsy. 

The next best option is to do a lumbar puncture to take some spinal fluid and look for cancerous cells.  Emmett had his LP yesterday and we're anxious awaiting the results. 

The third option is to wait and see what happens.  Does the spot continue to grow?  Does Emmett start showing symptoms?

Options for treatment aren't great.  Emmett's still too young for full brain radiation.  Without confirming it's cancer, probably the only thing they might consider is stereotactic radiation.  This is a "gamma knife" procedure where they send low energy radiation beams from many angles that all converge at the spot in question.  This way the brain gets a low dose overall, but the treatment area gets a high dose.  Stereotactic radiation only works for spots that are small (less than a few cm) -- if we wait too long, it may not be an option.  One upside to stereotactic radiation is that it would not preclude Emmett from full brain radiation down the road, if needed for future treatments.

We don't know the risks for stereotactic radiation in this part of the brain yet.  A radiation team at Dana Farber is reviewing Emmett's case and we hope to meet with them next week.  We also plan to consult with the radiation oncology team at Massachusetts General Hospital where Emmett received his proton radiation.  If the risks are significant, it would be hard to justify if we don't know for sure this is cancer.

We hope and pray that no further treatments are necessary!  As minimally invasive as radiation might be, the side effects may be significant, and we hope that the doctors come to the conclusion that everything is okay and nothing else is needed.

On the upside, Emmett had an LP and a PET/CT scan back in January which both came back clear.  If the spot existed then, and the tests showed no evidence of cancer, we're hoping the same is true today.

Please keep Emmett, our family, and his doctors in your prayers as they work to determine what this spot is and the best path forward.  We're praying specifically that his lumbar puncture accurately reflects no cancer in his brain and that this mass ultimately is determined to be non-cancerous.

We greatly appreciate your prayers and faith!