Meeting with Dr. Packer

This was a day full of ups and downs, just like a rollercoaster, only this one we can't get off when we want to.

We caught a cab this morning to the hospital.  After waiting in the lobby for a little while we were met by Heather (Dr. Packer's nurse practitioner) and Dr. Packer himself.  Dr. Packer examined Abby, doing all the neural-type tests (hold your hands out, squeeze my finger, retrieve this toy, etc.)  Abby did well for him.

Packer promised to have his pathologist and radiologist look at all our data.  He does have a treatment protocol that he would recommend to us involving radiation and chemotherapy.  He discussed Abby's condition with us at length, never making us feel rushed at all.

He also told us that the information we had been reading about ATRTs being very hard to treat probably referred mostly to tumors in very young children.  ATRTs are a "new" tumor, meaning that they have only recently begun to separate them out and catalogue them separately from other PNETs.  Since new data has been coming in, he said he is optimistic that treatment protocols similar to his can yield good results in kids Abby's age.  Of course, with cancer, there are no absolutes or 100% certainty.  God is good, though.

He expressed some concern over her postoperative MRI scans, and promised to have his radiologist look at them and he would get back to us later in the day.  He also asked that we see if we could have a block of tissue sent to another specialist in Philadelphia to confirm the tumor's ATRT status, since the slides we brought with us did not have all the proper stains.

We started to leave the hospital when Abby began complaining of some dizziness, and then she tried to throw up.  This, of course, is quite frightening to us now, since dizziness and nausea is one of the key indicators of a seizure.  She didn't lose consciousness, though, but just wanted to sleep.  Our nurse here at CNMC didn't seem concerned, especially when we explained how tired we all were, we had had the stomach flu, etc.

We decided to return to the hotel and let Abby nap for a while, then eat some lunch and try some sightseeing.

The first wrinkle there was that the shuttle to the Metro doesn't run during the day. Oops, I misread the sign.  So we got to catch the bus, which worked fine, and the kids were all excited about that.  We took the Metro from Tinley Park to the Metro Center station, and changed trains there to the Blue line to reach the Smithsonian Metro stop.  Upon our exit, we discovered quite a todo on the Mall--the new World War II memorial is being dedicated on Memorial Day (boy have we been out of it), and the whole Mall area is in a tizzy.  Barricades and portapotties everywhere!

A 15 or 20 minute walk later and we were at the National Air and Space Museum.  Wow!  We really wanted to do this for Josiah.  He has been so patient and kind to Abby, and other than a few spats between the two of them it has been great to have him with us.

We enjoyed the museum greatly but unfortunately, Abby's dizzy spell seemed to come and go.  She has complained of tiredness often.  Amy and I carried her for much of the walk to NASM and also inside the museum some.

The worst part of the day, though, came when Dr. Packer called to wrap up his analysis of our data.  He believes that we have not resected the entire tumor, and that there is still a significant amount left in Abby's brain.  This was quite a shock to us, because Dr. Shafron was very happy with the surgery and was almost certain he got it all out.  Packer recommends a second surgery before we begin treatment.

So instead of clarifying things, this trip has really muddied the waters.  On the one hand, we have a good, tested (somewhat) protocol that we could use for treatment.  The protocol is not without dangers, but it gives us a good chance.  On the other hand, now we must consider a second surgery, and this one is almost certain to have some neurological aftereffects that will require therapy for Abby to overcome, if they even can be.

Our next step is to have another MRI done to see if what Packer and his radiologist sees on Abby's post-op MRI is more tumor.  That MRI might not really tell us anything.  I started to arrange appointments for an MRI and with Shafron for Thursday.

And Abby's dizzy spells?  What about that?  I called her neurologist tonight, and it might just be that her meds are out of whack.  She seems to be recovering from each one well.  They don't have the symptoms of a full seizure.  So it seems best to just come home tomorrow and not to try to get her admitted to CNMC to be checked our more thoroughly.

So ends our day.  It's hard to see God in what's going on.  If we hadn't come, we would never have even considered a second surgery.  But Paul says "keep the faith", and so we are trying.  Please continue to pray for us about these things, and pray for a successful trip home tomorrow.

On a lighter note: Josiah's favorite part of the day? "The trains."  Abby's favorite part of the day? "The butterfly." (see photo)  What a reminder and a lesson for us.  They live in the moment so much, appreciating exactly what they see and experience right now.