Friday, March 9th

Today was our second day of proton therapy. This time when we arrived, the machine was not down so we were able to get in on schedule. Hannah was very excited to be there today for two reasons-first, it was toy day Friday, and second, they were going to take out her port catheter tubing for the weekend. They usually access them on Monday, and leave the needle on until Friday when they can take it out for the weekend. Also, each Friday, kids at the proton center get to pick out a toy from a large toy area. It's another way to make the kids feel comfortable coming for treatment. Hannah said last night that she had a hard time sleeping because she was so excited about toy day Friday.

So while your child is receiving treatment, you sit out in the waiting room trying to seem normal, like you're there for a dentist appointment. They must be able to tell the new parents from the ones who have been there for awhile. Today we met another family from New Jersey. They are here for their second round of treatment, a thought that never had crossed my mind before hearing this family mention it. Their son was diagnosed with a spinal cord tumor when he was 6 years old, 3 years ago. The docs could only get a portion of it out since it was right on the cord. When they tried to get him into proton therapy, they were rejected because they were only taking medulloblastoma cases (like Hannah) at the time for a special study. So, the family decided to go to Loma Linda in California. Loma Linda only had one pediatric proton radiologist, and right before they were to leave, the doctor was in a car accident, so Loma Linda was unable to take them in until the doctor recovered. The family told us they then called back the proton center here and basically begged them to take him in. They said that with regular radiation treatment, 97% of kids with this tumor are dead within 2 years. At this point, I was crying, but this mom was so calm and reassured. I guess you get stronger as you progress with this. The mother said they got their strength from their son, instead of the other way around. Her son had a successful treatment the first time around, and just recently developed another tumor deep in the brain, inoperable, so they are treating it with radiation. I guess I tell this story to show that sometimes when you think you're the only one with this terrible thing happening to you, and you're trying to figure out "why us", you realize that other people are also experiencing these problems, sometimes even worse than you and they made it through and that you can too.

Hannah had talked the night before about how she was going to try and stay calm when she was waking up (after anesthesia). Unfortunately, it hasn't worked yet, but we'll keep trying. We've had 2 days of therapy to date, and we're learning that you count your time here not in days and weeks, but by treatments. We have 30 in all, so 28 to go. It seems like an eternity, but you just continue to forge through as best you can. As the inital shock of this wears off, everyone goes back to their normal lives, but we're still here in this nightmare of a life.

Hannah is still continuing to progress. Her emotions seem to be calming down a bit, so she has less and less irrational outburts. They call is "posterior fossa syndrome", where the posterior part of the brain has undergone surgery or other trama and the patient undergoes an emotional and/or physical change. They become different in that they may be overly emotional at the slightest of things, or experience strong emotional outbursts at odd times. We did notice this with Hannah, and have noticed also that these have become less frequent and less strong in nature. It's all about time with the brain, and time is healing. Hannah is also experiencing some double vision and blurry vision, also as a result of the surgery. For now, the doctors are recommending we wait and see if the double vision perists, since this is a typical side effect of the type of surgery she had. So, we'll wait.

A special thanks to our friend Don, for his visit to us this week. Hannah enjoyed visiting with Don, and her new friend "Softie, the bear", and Don was here at a good time for Hannah :)

XOXO to all,

Kim and Dave