Well things have been going great! Lauren finished her last round of antibodies mid January and she had all of her 3 month scans at the same time. All scans were fine! She is still NED (no evidence of disease) and the best news of all - we are done!! As of Jan 17, for the first time in 3 years, Lauren is OFFICIALLY OFF TREATMENT!!! Hurray!!! And it couldn't have come at a better time. Lauren had had it. She was starting to really fight things and who could blame her. These treatments are really tough on these kids and there comes a time when you hit the wall. You just don't want to do anymore. So we are very happy to now be finished. But on the flip side it is also a scary place to be. This is the first time since Feb 1, 2000 that we are not actively doing something to keep this monster disease away. During the last round, I put one of Lauren's doctors on the spot and asked him if he would ever use the word "cured" with lauren. He lookd down and said that's a really hard word. He told me he has seen this cancer come back 10 years out of treatment. Another doctor said that if she goes 4 years off treatment with no problems then we could say cured. But what the heck - it's just a word- nothing in life can be guaranteed so I've decided that though I know the chances of relapse are high, I refuse to live our life waiting for it to happen. Some days that's easier said than done but I'm sure as more time goes by it will get better!
During the last round we also met with Dr Sklar -the late effects specialist. Both Lauren and I were very comfortable with him which is good because he will be following Lauren for many years. We were given a complete summary of all her treatment; drugs, dosages etc and a list of long term issues for each. They went over what tests she'll need and how often. Right now they want to follow her every 6 months to monitor her growth because of the radiation she had to her spine. The nb team wants to see her every 3 months for checkup, scans and bloodwork so this works out well. Every other visit we'll get to see both teams.
Since Lauren hit such a big milestone - finishing treatment - we wanted to celebrate in a big way. So with some help we planned a surprise trip to Disneyworld. I wasn't going to tell the kids until we were on the way to the airport but unfortunately the day before we left they had a snow day from school and since I still had to pack we had to spill the beans. They were so excited. Then I sprung another surprise. Uncle Mike, Aunt Val, Jen & Devon were coming too! Well that just sent them over the edge!
So the 8 of us headed out early Sat morning (Feb 8) for Newark airport. Getting there was a breeze but getting to the plane was met with a few snags. When we checked in we were told that Bill, Timmy, Lauren and I were randomly selected for security check and that the Simpsons didn't have assigned seats. This had to be done at the gate and it was an overbooked flight so they told us to hurry to the gate. We sent them up while we got our luggage checked then met them at the security checkpoint where we find out that Devon was never issued a boarding pass. So Mike runs back down to get it and comes back with one that was flagged restricted. Who knows why. Well we finally get through the metal detectors and to the already crowded gate where we find out that the Simpsons can't get 4 seats together and we have to change our 4 together seats because they're in an emergency row in which children are not allowed. They also noted that since we were selected for security check our tickets should have been stamped with a special stamp when we went through security and they weren't so we had to go through security again. Thankfully they had them come to the gate this time. They brought one of those metal detector wands and gave the 4 of us a pat down. Hmmm wonder what all those onlookers thought. Then it was back to trying to find 8 seats somewhat together which we managed to do - grouped 2, 3 & 3, so what if we were separated by 10 or 20 rows - I just wanted to get on that plane!
Thankfully we left all the stress back in NJ and the rest of the trip was awesome. It was cold and rainy at first but the weather got better each day we were there. We went to all 4 Disney parks, Universal, Islands of Adventure and even got to visit Give Kids the World again. The people there are so wonderful. They gave us a complimentary dinner, told us we could use any of the ammenities and even invited us to Mayor Clayton's birthday party. Lauren especially was so excited to be there again. Of course the first thing she did when we got there was ride the Carousel!
What a difference in Lauren this time at the parks. Last time she was afraid of a lot of rides. Not this time! She wanted to go on things again and again! And she loved that Jen could take her on them instead of me. I think she felt like one of the bigger kids. Timmy, Jen and Devon, of course, rode every scary, upside down, flipping, twisting, dangling near miss roller coaster they could find. And since Bill, Mike and Val don't do rollercoasters I got to go too!! Since Timmy was tall enough for them all this time - we rode them all, most 3 or 4 times each. Yes I am a glutton for punishment LOL We went to two character dinners this trip which the kids loved - even the bigger kids :-) And we stayed for the Fantasmic show at MGM which we bypassed last time. What an awesome show! The hotel had a heated pool with a very cool water slide so the kids went swimming most nights, even though the air was cold. Val and I even managed to get in some shopping at Downtown Disney. Unfortunately the week came to an end all to soon and by Saturday afternoon we were back in NJ getting ready for the blizzard that hit on Monday dumping 2 feet of snow on us! Talk about extremes!!
We have gotten more than our fair share of snow this winter. The kids had fun with snowball fights, sledding, building snowmen and making snow angels but I think we've all had enough. I for one am more than ready for spring! Timmy can't wait for baseball to start and Lauren says she wants to go out and make mud pies.
Since being home from Disney we've been keeping plenty busy. We're still in the process of putting the house back together. Lauren is still in preschool 4 days a week and dance and physical therapy one day a week. Timmy is doing Mad Science at school, karate twice a week and he receives his first communion this May so most weekends have been taken up with workshops or religious ed classes. Tomorrow he also has a karate tournament. A whole lot of stuff I know but all normal stuff! We did get to PopPop's house for a quick visit last weekend. We went down Saturday and had a nice dinner to celebrate the Feb/March birthdays. Happy Birthday Pop Pop, Uncle Rich, Bill & Aunt Eileen!! Hopefully things will slow down around here soon so we can go back down for another visit.
Well scans are coming up next month. Lauren and I will check into RMH the week before Easter and stay about 3-4 days. We could probably do it in 2 days but I want to hang around for the results. Plus Lauren and I will have plenty of free time to do some fun things! Between now and then I don't think we have any doctor visits. Oh wait, yes we do Little miss Lauren has her first cavity :-( so in two weeks we have to have it filled. Ok so other than that I think we're free! I'll probably wait til after I have all the scan/blood results before i update again - probably right after Easter
Well I think we're all caught up for now. I'm going to go find some new pics for the front page!
Thanks so much to all of you for sticking with us for so long, for always thinking of us and for always remembering Lauren in your prayers. I could never put into words what that has meant to us or how much it has helped us!
