Wednesday, December 8, 2010

Boston, here we come.

Summer had a HASTE MRI this morning to see if the cyst is still producing fluid. The scan itself went relatively well. Only one parent is allowed back with her, so Jason took her this time while I waited in the waiting room. Summer wasn't happy about being strapped to the table again, but the nurse asked her to help count to 10 as a distraction. She told Summer that when they got to 10 she would be done and could get back up.

Nurse: "1"
Summer: "2"
Nurse: "3"
Summer: "10. 10! 10! 10!"

When the scan was over, Summer told Jason "that was a great nurse!," gave hi-fives all around and said bye to everyone before coming back out to me. Usually when she's upset about something, she won't say a word and buries her head on our shoulders until we leave, so she must not have thought the whole thing was too bad.

We then met with Dr Geyer to review the results and he cut straight to the point - the cyst is bigger than it was at her 11/15 scan, and is only a few mm shy of the 8/11 scan when it was at its largest. So now we know the Interferon didn't work, and we're officially planning on Proton Radiation at Massachusetts General Hospital as the next step.

Dr Geyer drew somewhere between 6 and 7mL of fluid out through the Ommaya today. He said he could have taken more, but would prefer to draw it out in stages. We'll probably take her in for weekly or bi-weekly fluid draws between now and leaving for Boston.

Also before we go, Summer will probably have another VEP test to establish her visual baseline, and perhaps an EEG to spot any potential issues before we wean her off Keppra, the seizure medication she's been on since her last surgery as a preventative measure.

I called our contact at Mass. General and let her know the status. Over the next few days she'll start scheduling and we'll know more specifically when we'll be there hopefully by the end of the week. Sounds like it will be early January. We'll have a few days of preparatory stuff to do there, and then a week or week and a half of waiting until the actual treatment can begin.

I also put word in with her that we'd prefer to stay at Christopher's Haven if at all possible. It looks like a really great setup - a set of fully-furnished apartments across the street from the hospital. The apartments are reserved for families traveling there for proton radiation, but there are only seven of them, so hopefully we can get one.

As unfortunate as it is that Summer will go through radiation at such a young age, the wait-and-see approach was extremely stressful and emotionally challenging for us, so there is quite a bit of relief in having a definitive plan for treatment.


  1. Thanks for the update Jessica. I've been thinking of you guys. Glad to know you have a plan in place for Summer. She is such a trooper and so are you & Jason!

  2. Grateful for this update, Jessica, and even more so that you'll be heading east for definitive treatment. Our thoughts and prayers, as always, are with you all.