Update From Vic (aka Dad)

Hi Too all

Xanders birthday is tomorrow March 8th. He is turning 7. He had a big birthday party yesterday.He had 10-12 kids over for a few play hours. The spring weather was awesome. The trampoline was a big hit with 1st graders and for Hillary and Jon. I have got to learn how to tap all that energy. We could solve all the worlds energy problems if we could harness the motion, speed and endurance of a 1st graders birthday party.

This week has been a little stressful. Hillary had her central line put in for her next procedure. I get very worried with the central lines as that is what got septic and almost killed her the with the first 1. She has had this procedure probably 10 times now. She has more scares on her chest than I can count. Fridays line to her artery near her heart was put in without any trouble! Monday she has a bone scan. Not sure what that is. Wednesday, Thursday and Friday she starts photo------

something. It is where her blood is circulated under ultra- violet lite. She is not allowed to go out into the sunlight while doing the program. This program is scheduled for 6 months!!
It is a procedure that will hopefully help her lungs. This is used mostly on lung transplant patients. Her oncologist says somehow it works but doesn't know why. He called it voodoo medicine. It may work but we are getting to the last of the trial options. Hillary has added 40 lbs from the steroids. The extra fluids are putting a lot more pressure on her lungs and Heart. As the ween her off the steroids she is not able to breathe and is back on oxygen. She did manage to stay off the oxygen while the kids were at the house for the birthday party. She still wants to hide it from as many people as she can. She still wants to be independent and thinks she can drive herself to these appointments! A lot of people have offered to help and I wish she would take them up on some driving and sitting with her. Nancy has taken wednesday - Friday off to her. She forgot to tell us about Mondays appointment.

Xander, Hillary and Nancy have also been doing trips to Dartmouth because Xanders best friend, Andy was diagnose with Leukemia 2 weeks ago. Andy is a first Grader. His prognosis is not good. Andy's Parents do not speak much English so it is difficult for them to understand or talk with anyone about it. Xander wants to help but was close to breaking down last week. Way to much emotion for anyone, especially a 1st grader.

On Wednesday we will find out if the $60,000 grant we wrote for the Charlestown Police Station is approved. Hillary still wants to stay active. It going to be a tough summer. Especially if she can't go out in the sunshine. I do have to say her painting and crafts are pretty amazing. Some great looking hobbies projects.

Well thats it for now. We will just keep taking what life gives us. We keep our plans flexible. We are able to react like a cat, even if it is Garfield!!
Vic, Nancy, Patrick & Grace, Allen, Pierce, Preston ,Heather, Jon, Xander and especially Hillary