GroshLink

We know that many of you have been anxiously waiting for more news regarding Eden's condition. On Sept. 15 she had her follow up MRI where we were told that the mass in her brainstem had gotten bigger. We discussed the possibility of biopsy and revisited the possibility that the mass was a tumor and not vascular. Our doctors conferred with doctors from Boston and the experts were split 50/50--half thought tumor and half thought vascular. But they determined that biopsy was too risky.

Meanwhile, Theresa and Eden traveled to Edmonton, Alberta, Canada to visit friends and enjoyed an immensely relaxing and enjoyable time. It felt good to get away from the crisis and pretend that everything was normal. The day after returning to Pgh Eden had a type of MRI called an MRS. We knew there was a good chance that this test would be inconclusive, which it proved to be. Our doctor also sent Eden's scans to the neuro team at Johns Hopkins for them to review it. They are of the opinion that it is a cavernous angioma. This is the same diagnosis we had been given earlier this spring. Treatment is to watch and wait, with another MRI to be done around the new year. JH doctors wouldn't touch it (surgically) with a 10 foot pole.

Eden continues to grow and develop, albeit a bit behind in both areas. She's eating well and seems very content. She's still receiving physical therapy and vision therapy once a week. She tends not to use her right arm much, preferring to grasp with her left. We're working on strengthening her trunk muscles as she does not sit up straight because she prefers to tilt her head to the right. We are also helping her to bear weight on her right arm. Progress is slow, but positive. On an encouraging note her vision therapist said she has never seen a case like Eden's (i.e. crossed eye) improve so much so fast.

I've (Theresa) been trying to piece together all of Eden's symptoms and after discussing them with the physical therapist and Eden's neuro-oncologist we're pretty sure that her reduced use of her right arm and her preference to keep her head to the right is a result somehow of the mass in her brain. She just doesn't show "classic" torticollis symptoms and I was never confident with that diagnosis. What does this mean? Who knows, other than my gut might have been right once again.

How are we doing? It's all relative, I suppose. With lack of clearly good news, we make do with degrees of bad news. I guess today's news is better bad news :) All I know is I'm thankful that Eden is growing and learning and functioning. And she is a delight to our family. Hayley and Ellen adore her and love to play with her. And I could spend entire days laying next to her on the floor laughing and giggling together. And Thomas just smiles to see all the women in the family so easily amused.

Thank you for your continued prayers and support. It means so much to us.

Love,