Tuesday, May 20, 2008

RELAY FOR LIFE UPDATE...91 LUMINARIAS!!!!

Yes, we went from my last update of 69 luminarias to 91, WOW!!!! We got 10 new orders just today! And then as I was typing up this update, I got an order from Hannah's Girl Scout Troop for 9 more bags! That will bring tears to your eyes! Thanks so much again everyone. I know it's really going to be a special time for Hannah and our family to walk around the track on Relay day and see all the bags that the girls decorated, and all the bags with Hannah's name on them also. I better start practicing my stone face for that night, I have a feeling it's going to be very moving.

Boston...it was two things-Fun and Tiring! We went right to the aquarium when we arrived on Saturday, just like old times (well, sort of). It was fun, Hannah was very excited, and it was strange being there without Hannah in a wheelchair. I remembered how hard it was for her to see some of the things and how it was more difficult to get around. We had a good time, then went over to Legal Seafood for lunch. Again, different from last time, not having to worry so much about Hannah eating. We used to go there and she would eat 2 raviolis, this time she ate some salad, a roll and half of her chicken fingers.



We then headed to our hotel to check in for some serious swimming. We were in the pool and hot tub for about 2 hours, and it probably would have been more had I not pulled her out. Hannah met another girl and boy in the pool that were visiting from Chicago. Very nice family, very friendly (and outgoing) kids. The little girl become pretty comfortable with Hannah, was touching her head, and asked Hannah what happened to her hair. We told her and she said "Cancer Survivor, Well better to be a cancer survivor than a cancer deader" The frankness of a seven year old, Hannah just took it in stride. We said YES, much better!


Hannah was pretty tired after the travel and the aquarium and the swimming. After dinner and a movie in our room, she was beat and started to have a stuffy nose. She went to bed, but woke up at 12:00, 1:00 and 3:00 with a stuffy nose, crying. The night before her big "test", I was thinking oh no. It was reminiscent of the days in the hospital waking up hour after hour. But she rallied and was ready to go in the morning. The neruopsychology test is a very draining and long test for anyone, especially an 8 year old. She came out after 2 hours for a break and she was crying. She was tired, frustrated and just wanted to stop. She said she was having trouble with some of the test. But, we talked and took a break and she went back in. After a short break for lunch, she went in again. The test in total took about 5 hours for her to complete. The doctor did express her concern over Hannah's processing speed. It was evident that this was an issue for Hannah. This is one of the more common side effects of full brain radiation-slower processing time. It takes about 4 weeks to receive the full report, so we'll be waiting for that. But it is what it is and can't be changed, it' all ok. We can use the report to help Hannah with any special accommodations in school, so that will be good.

After the test we headed over to the proton center and saw all of our favorite people-Rachel, Ron, Jim, Paul. It was so great I totally forgot to take a picture :( We then headed to Spaulding, but most of our friends were out. We did get to see Lynette and Renee and a few others, but Hannah was really looking forward to seeing Mary and Audrey who both weren't there :( We did drop off the Wii though, and got a great email from Audrey...they loved it! It was very strange for me to go back to these places as a non-patient now. It really made me feel happy and sick to my stomach at the same time. Odd, I know.

There was some excitement at Massachusetts General Hospital. When we arrived we saw camera crews packing the place. Senator Ted Kennedy had been brought in by helicopter after having a seizure. It was announced today that he has a malignant brain tumor, a glioma-but they have not clarified whether it is GBM-glioblastoma multiforme, which is the most common in adults his age, but also the most serious. It's a stage 4 grade cancer, nearly alway fatal, and quickly too. As another cancer mom said to me tonight, well the good thing is it will bring more light to the brain tumor fight. That's how you look at it, if you're on this side.

I have more exciting news to post tomorrow about the Cans for Cancer school fundraiser AND the new pool that's now a real pool,

xoxo Kim