On to MD Anderson...

Our first meeting with Dr. Demonte was this morning at the MD Anderson Brain and Spine Center. This was a very different appointment than the previous ones. First of all, Lena was the only child in the area. This was a little uncomfortable but I think good for her. She was dressed up and received a lot of positive attention from patients and nurses.

Dr. Demonte reaffirmed everything that had been explained to us by Dr. Whitehead. Lena has a tumor in her cavernous sinus that is either pressing against her third nerve or might actually be a part of the nerve. It is a very rare location for a tumor to appear in a child and there have only be about 20 documented cases (I think I got this right.) Dr. Demonte has performed about 5 of these operations on children which is more than any other doctor in the world. So, although his experience isn't great, it's the best there is. We don't know what type of tumor we are dealign with but we do know that it's located in a very delicate area with a lot of nerves that could be affected if they try to remove it. So, at this time, the goal is to biopsy the tumor to find out what we're dealing with. The doctors would like to relieve the pressure off of the nerve and/or remove the tumor but it doesn't seem like that will be likely for this first operation.

Things we know... or as always, think we know...

The issues with Lena's eye will probably not reverse and most likely will deteriate further after the operation. She has good vision from her left eye but the pupil is still unusally dialated and she has since begun to lose movement in the eye. More than like her brain is adapting to this and using the images from her right eye to compensate.

There is a possibility that Lena carries a genetic syndrome that will increase her likelihood of further tumors developing throughout her life. She will be tested for this as will Kira and Naia.

Lena's operation is scheduled for July 20th at MD Anderson. She will be in the hospital for 4-5 days for recovery. During that time there will be a complete analysis done of the tissue to determine what type of tumor it is. Then we'll start discussing treatment.


Right now Lena is obviously aware that she has been spending a lot of time at the doctor's office. She's had sedation, MRIs, CT scans, blood work, etc. For her, a really good day is a day we go to the doctor and nobody pokes her or takes pictures of her head. :) Kira and Naia are also aware of the visits. However, the girls don't know what is yet to come. We've been spending as many days as possible filled with fun family activities. We swim a lot, have gone to the beach, have gone bowling, do a lot of projects, been to see a play (Aladdin), played at water parks, etc. Our goal is to fill all the girls cups with overflowing love so that they have good memories of this summer too.

I'll keep you posted on what's happening or on when my next mini-meltdown occurs. :)

We'd love to hear from you so leave us a note when you stop in to catch up with us.
Lots of love- Holi