Thankfully everything worked out and we all had a wonderful Christmas. We spent Christams eve at grandma & grandpa's house in Pa with Aunt Nean, Uncle Dylan, Uncle Gary and great grandma Gigi. There was a ton of food and Grandpa outdid himself in the kitchen cooking all the seafood. Timmy was in heaven and must have consumed at least 5 lbs of shrimp. Lauren's not big on seafood but we did manage to coax her to try some fried shrimp by telling her they we big fishsticks. She was a little skeptical - she didn't like the look of the tail - but Bill told her it was just like a little handle. Well she loved them and for the next week asked everyone if they've ever had the 'Fishsticks with handles". After dinner we all opened presents, then sat around playing Trivial Pursuit. Lauren surprised us all by answering a question all by herself. Our team was asked "who is the Ccrocodile Hunter?" Lauren got all excited and starts shouting I know, I know! It's Steve Irwin! I couldn't believe it. I knew she liked him but never realized she knew his name. Hmmm guess she watches a little too much tv!
Lauren and Timmy were up bright and early Christmas morning and were excited to see that it had snowed overnight. After the whirlwind of present opening the kids donned their snowsuits and went out to play in the snow. Last year Lauren could only stay out in the snow for a very short time. This year she can handle it a lot longer and was even able to go up and down the side hill with her sled by herself. What a difference from the last two years. All the activity finally caught up with her by early evening and she started to fall asleep at the dinner table.
Because of the storm Christmes day, nobody was able to travel so mom, dad, Gary and Elizabeth all came over the day after. Lauren gave everyone the grand tour of the house starting of course with her new purple bedroom. Then while the kids played, the guys managed to move my two-ton bedroom set up to our new bedroom (thank you daddy and Gary!)
We spent the holiday weekend with grandma and pop pop and Lauren was in heaven spending 3 days with her favorite little playmate - Candy the dog. And Timmy had his favorite playmate - Uncle Rich! We got to catch up with a lot of family members at the annual Christmas party which was at Aunt Mary's house this year. When we got home Sunday night we had a little surprise waiting for us. It seems that while we were gone a base board heater pipe had sprung a leak and flooded the downstairs den where we've been storing all of our stuff for the past three months. Thankfully the only thing that really got ruined was the ugly wall to wall carpet and trim so it's just a minor setback. We know it could have been a lot worse!
OK - time for the medical stuff:
Since our last update Lauren has had just two doctor appointments. First was the eye doctor who is very happy with how she's doing. Her eyes are nice and straight with the glasses so we keep with them. The second was the orthopedic who is also very happy with how Lauren looks. Her flexability and muscle tone is definitely improving and he thinks her intermittent back/leg pain is due to growth spurts. He doesn't think her kyphosis curve has changed but we'll check that with xrays at the next visit in 6 months.
Now at this point I should have been able to tell you all that Lauren has completed round 14 of antibodies but unfortunately that's not the case. We were supposed to be at Sloan the two weeks before Christmas but the week before I got a call saying Lauren was bumped - again. It seems there were too many kids that needed/wanted to come in that week so we were being bumped for a month. I had/have mixed feelings about this. Part of me was happy because being away right before Christmas with so much going on and so much to do would have been hard and stressful. Plus Lauren really didn't want to go. But the other part of me was pretty upset. I don't like the idea of screwing around with the timing of her protocol. It seems that whenever they are overbooked Lauren is the one they want to put off. They say it's because she's the furthest out (in treatment), doing the best or the least likely to relapse. Well since no one can guarantee the last one (relapse) - it's not a chance I'd like to take. Also we were supposed to do two more rounds before finishing but now there is only time for one. On Lauren's protocol they're only allowed to do antibodies for two years and our two year date is Jan 22. Well there wasn't anthing I could do about it so after a bunch of phone calls to change our dates at RMH, reschedule the appt with the late effects doctor and to schedule her 3 month scans we are all set start round 14 this Monday (Jan 6 - 17). We'll head off to RMH tomorrow afternoon. It's almost hard to believe but 2 weeks from now, for the first time in almost 3 years (2 weeks short), we will officially be off treatment! What a great way to start off the new year. Keep your fingers crossed!
Well that about covers it all for now. I hope you all had a wonderful holiday and I wish you all a safe, healthy and happy 2003! As always thank you for remembering us in your thoughts and prayers.
