We enjoyed swimming (our villa was right next to one of the pools), fishing, riding the Amberville train and this was all before we even got to any of the parks! We also went on an airboat ride and played miniature golf.
We were all sad to leave the village but after our week was up we stayed at the Contemporary Hotel in Disney. The kids thought it was cool to have a monorail running right through the hotel! (though when the time came Lauren was not too keen on riding it, she kept saying "can't we just take the car?")
Lets see-
We went to Universal Studios and Islands of Adventure where Timmy rode every ride he could. Most 4 or 5 times! Lauren was happy with the carousel of Seuss characters and One Fish Two Fish which she rode 3 times. We had special passes so we didn't have to wait in line which Tim thought was just "awesome". Lauren had a special meet and greet with Lassie after an Animal Planet Live show. She also got some one on one time with Barney after his show. The park people and characters were all great. As soon as they saw Lauren's Give Kids the World button they were all over her. They danced with her in shows and did special things with her and Timmy. I was a little concerned at first that she would be afraid of the characters because they're so big but she just ran up to them all, even the super heroes and the scarey looking Green Goblin.
At SeaWorld the kids got splashed by Shamu, fed and touched the dolphins (Lauren said they feel like hard bouncy balls), fed the sealions and touched stingrays.
We went to Gatorland and Jungleland Zoo where we all fed the huge alligators. Lauren and Timmy got their picture taken with an alligator on their lap and a snake around Lauren's neck. Yes - both alive! At the zoo they each got to hold a small gator by themselves. Lauren was so funny. Every time she asked the "gator guy" a question she called him "Mr. Crocodile Hunter"
On Saturday we moved over to the Contemporary hotel and did the Disney parks (Epcot, Animal Kingdom, Magic Kingdom and MGM Studios) the last four days. Once again Timmy went on every possible ride (even Tower of Terror and Rockin Roller Coaster at MGM) the more wet or wild the better, while Lauren preferred the shows, parades and meeting the characters (though she did like Dumbo and Its a Small World). Both kids got to dance in the finale of The Lion King show at Animal Kingdom and in the parade at Magic Kingdom. We watched an awesome fireworks/laser show at Epcot although I think Lauren slept through most of it! We all enjoyed having breakfast with the characters at Chef Mickey's.
At all of the parks the people (and characters) were so nice and always went out of their way for us. They made sure Lauren and Timmy got to meet and have pictures taken with all the characters they wanted. At MGM they even set up a special meet and greet with Belle and the Prince after the Beauty and the Beast show. Lauren sat on her lap and they talked about Minnie Mouse and Barbie (two of lauren's favorites).
We all had a fantastic time on this trip and got to meet some really great people both at Give Kids the World and at the the parks. Everyone went out of their way to make this a really special and very memorable experience for not only the kids but for Bill and I too. None of us wanted to leave, especially Lauren. She looked out the window of the plane and said "Goodbye Disney World (and Minnie) I'm going to miss you." For her it truley was a "magical" time.
I did take tons of pictures and I promise to get them up online soon but unfortunately I have to go pack (even tho I just finished unpacking) for Round 7 of antibodies. We will be leaving this afternoon for the Ronald McDonald House and have to report to clinic first thing tomorrow morning. During this 2 week round Lauren will also be having her 3 month scans to make sure she is still NED (no evidence of disease).
Ahhhh back to reality!
As always - thanks for checking in on us and for all the continued prayers.
Friday, November 2 - I can't believe it's November already. Where the heck did October go?! I guess being away for most of the month didn't help. Lauren and I got home from Round 7 last Friday. I think she had the least pain this time around. Some days there was no pain at all and on others the pain hit late in the infusion or actually after it was done and didn't last long. On one day she was doing exceptionally well (no pain, no hives, no grumpyness) then we realized that they forgot to put the antibodies into the saline. She had gotten two hours of plain saline. Needless to say we had to restart and go for another two hours. Thankfully it was a day that we had an afternoon scan scheduled and we had planned to hang around anyway.
Lauren also had her three month scans during this round. For some reason every time she has scans scheduled something always goes wrong. This time it was forgetting to give us the contrast that she was supposed to drink before the CT scan on Tuesday. That caused the scan to be cancelled. No problem though cause we still had another week of antibodies so they rescheduled it for the next Thursday. It made it a full week with bone scan Monday, MIBG injection Tuesday and MIBG scan Wednesday but still ok. Then on Monday afternoon I get a call that all the MIBG injections for the next day were being cancelled (something about a bad batch of isotope) so therefore no scan on Wed. The only opening they had was for Thurday. Great! Now Lauren had two scans scheduled for the same day with overlapping times! Finally it was decided to do the MIBG scan then and just forget the CT scan as we could do that one at home. whew! as I said...it's always something! And I'm happy to report that all scans so far are NEGATIVE! She is still NED YEAH!!
We got to do some fun things at RMH this trip. One night we went to the Big Apple Circus which was a lot of fun. There were a few dinners with clowns and magicians. A wild west party with cowboy hats and BBQ food. And of course Bingo. Two nights Lauren was able to get her face painted. Once she was a butterfly (of course!) and then a tiger. Both were really awesome. We also named Lauren the official dog greeter for RMH. Anytime she saw a dog she would yell to the owner "Scuse me, can I pet your dog...just for a minute? Almost everyone said yes and Lauren's one minute would turn into 5 or 10. She even asked one lady if she could borrow her dog. She reassured the woman that she didn't want to keep it, just borrow him for a little while.
We've been keeping pretty busy since we've been home. Shortly after we got home Friday, Sharon came over to watch the kids so Bill & I could go out to dinner for our 10th anniversary. Thanks Sharon!! On Saturday Timmy had his last soccer game of the season. And when we got home we were happy to see that Grandma, Pop Pop & Melissa had stopped by for a visit. Lauren loved showing them all the Halloween decorations and Timmy was happy that they brought up Pumpkin pie!
On Sunday we went to a fundraiser at Timmy's school across the street. It was called "Trunk or Treat". There were about 80 cars parked in the lot with their trunks opened and decorated for Halloween. Bill decorated the truck in a Men in Black theme with all kinds of aliens complete with him dressed up as an MIB agent. He really did a great job. Once everyone was set up they put out bowls of candy and the kids went around trick or treating to all the cars. Lauren was dressed as a tiger and Timmy a skeleton. Their costumes looked great. All the kids had a blast as well as us parents too!
On Tuesday Timmy was sent home sick from school. He had a low grade fever and a severe headache. Well, by 6 pm his fever was up to 105 so we took a trip to the ER in Newton. He was not a happy camper about having to go to the hospital. He was afraid they were going to keep him there overnight. They ran some bloodwork, said it looked like a viral infection and thankfully sent us home. Unfortunately he had to miss school on Halloween which meant he missed the parade and parties :-( He did however get to go out trick or treating that night so he didn't mind too much.
Lauren was excited because Jen & Devon came over to go trick or treating with us. She couldn't wait to get her costume on and go out. She had just enough energy to go around the block. By the time we got almost all the way around she had decided she had enough candy and wanted to go home. What a difference from last year though. Then she had only made it to 4 or 5 houses and had to be carried up to all of them.
It's hard to believe it was one year ago yesterday that we checked into the hospital and Lauren started her last chemo for transplant. Thursday Nov. 8th (Timmy's birthday) marks her one year anniversary. That's the day she received her stem cells back. After PT today Lauren and I went over to the hospital to visit Billy who was having his last day of radiation. We all went up to the floor to say Hi to the nurses. It was weird looking at "our" room and thinking back to this time last year.
I am so thankful for where we are today and for how far Lauren has come. I want to thank everyone that has helped us through the last 20 months.. We sincerely appreciate all that you have done and all of the continued thoughts and prayers.
Sunday, November 18 - Let's see if I can get through this update without my computer crashing for the hundreth time :-)
Lauren is feeling and looking great. She had a checkup at the Valerie Center on Nov 8 and had blood drawn for counts and HAMA test. Her poor veins are so shot that it took a couple of tries to get the blood. She was not a happy camper. She kept yelling "This is the worst day of my life!" Since it was so much trouble finding a good vein and since Lauren had a CT scan scheduled the next day (for which she would need an IV), I talked them into leaving the catheter in overnight.
Lauren breezed through her scan the next day. It was the first time she'd ever done a scan without sedation of some kind. She told them she didn't want any sleepy medicine and that she promised to lie very still. I was so proud of her!
Last Saturday we had Timmy's birthday party. Fourteen 7 year olds at the bowling alley. What a blast! Lauren made her bowling debut. I never knew they made bowling shoes that small! She had a great time. I think she even came close to beating Aunt Nean LOL
This past week was pretty normal. Preschool Mon, Wed & Thurs and physical therapy Tues & Friday. Lauren is making great progress in pt. She still fatigues easily but you can definitely see she has stronger, better muscle control. Since she's doing so well Karen (her therapist) said that hopefully after the first of the year we can cut back to once a week. We also saw the orthopedic this Friday for a checkup on her back. I'm happy to report that the scholiosis/kyphosis curves have not progressed from last time (July). She's still on the borderline for needing a brace but since there has been no progression and clinically she looks so good, we get to hold off again Yeah! And this time he said we can go six months between checkups.
After pt on Friday Lauren had a lunch date at McDonalds with Billy. (Billy is just a few months younger than Lauren and also has nb). It is so cute watching them hold hands and hugging each other. First we met them at the hopsital and got to visit with some of our favorite nurses. We even got to see Dr John & Dr Sheryl. Everyone commented on how great Lauren looks and nobody can believe how curly her hair has come in. Lauren also got to visit with another favorite friend, Sue, who was inpatient this week.
Friday night we all went to a fundraising event at the Lake Mohawk Golf Club in Sparta. It was called the Festival of Trees and was put together by the Jr Womens club of Sparta. There were 31 christmas trees that were decorated in different themes to be bought by silent auction. We got involved because the monies raised this year are going to the Valerie Center. Bill and I decorated a tree in honor of Lauren and called it "Butterflies in Winter". The trees were all magnificent and the kids loved looking at them all. Lauren did get a little upset when she realized we weren't bringing her tree back home with us. Bill said a few words about the Valerie Center and Lauren was presented with a beautiful bouquet of flowers.
Timmy had a karate tournament yesterday in which he came in third in his group. He got another trophy to add to his collection. We are so proud of him! Last night we all went out to dinner with grandma, grandpa, Uncle Gary, Aunt Nean, Uncle Dylan & Elizabeth for grandpa's 60th birthday. Lauren serenaded everyone with her version of "God Bless the USA". We had such a good time. I honestly can't remeber the last time my whole family has gone out together.
And last but not least Lauren's HAMA results are in. She is still negative so Round 8 is scheduled for Dec 10 - 21. While I'm a little bummed about having to go back for more antibodies, at least we'll all be home for Christmas!
Have a Happy Thanksgiving everyone!
Monday, December 3 - I hope everyone had a great Thanksgiving and didn't eat too much! We had a great day. We started off very early with a train ride into the city for the Macy's parade. Thanks to the Valerie Center and CNA Insurance, we had a perfect, inside view for the parade. We were on the 20th floor looking down on the entire grandstand area. There was a ton of food and the people were wonderful. This was the first time any of us have gotten to watch this parade up close and it was a lot of fun. The kids loved watching all the giant balloons go by. After we left the city we drove to my parents house for dinner where again there was a ton of food. After dinner Lauren had a ball decorating grandma's christmas tree.
The next day we drove down to Bill's parents for the weekend. We took the kids to see the Holiday Light Spectacular at the PNC Arts Center. What an awesome light display! We also went to Allaire State Park where we rode an old steam engine train with Santa and then walked around an old village set in the 1800's. It was a nice relaxing weekend. Bill and I even got a chance to go out and start Christmas shopping.
Yesterday was the Valerie Center's annual Christmas party. The kids got to dance and play and we all got to visit with a lot of friends that we haven't seen in a while. And of course there was a visit from Santa. Lauren waited so patiently for her name to be called then ran up and jumped right up in his lap. What a difference from last year when she wanted nothing to do with Santa! Everyone commented on how great she looks and what a spitfire she is. At last year's party she had just gotten out of the hospital (from her transpant) the day before and wasn't feeling very well. It's hard to believe that was a whole year ago.
After the party the kids and I came home and Bill caught a train to Washington where he will be all week for work. He managed to get all the lights and decorations up inside and out before he left which was no small feat. Anyone that has been to our house during this time of year knows just how much "stuff" Bill puts up for christmas. Now it officially feels (and looks) like Christmastime even if the weather outside feels like springtime!
Originally Lauren and I were to be heading to Sloan for antibodies this coming Sunday but there has been a change of plans. Lauren was exposed to chicken pox at preschool this past week. If she's going to get them it would be between 14 - 21 days after exposure which of course is exactly when she was supposed to be in for the next round. While her immune system should be well enough to handle this, for a child with low or no immune system it could be deadly so we are not allowed to be in clinic or at the RMH until at least 21 days after exposure. Since I don't want to be away over the holidays we rescheduled round 8 for Jan 7 -18. We also found out that Lauren will need another eye surgery for her strabismus (eye crossing) but we're going to put that off til after the holidays too.
While I definitely welcome the extra break, I had gotten myself geared up and ready to get this round done and over with. Oh well. Now it looks like I'll have time to do all the things that Bill was going to do for me while I was away. Like bake 15 dozen cookies for a cookie swap!
Well that's about it for now - As always, Thanks for keeping us in your prayers.
Sunday, December 23 - Just a quick update to let you all know that Lauren escaped her chicken pox exposure without incidence. Part of me is glad that she didn't get them but another part of me wanted her to so we could be "done" with it and not have to worry about it the next time it comes around. Because of that exposure and a second one the following week, we've decided to keep Lauren home from preschool until we get back from this next round of antibodies (mid Jan). We can't afford for her to be exposed again and delaying the round again. Thankfully Timmy has already had the chicken pox so he can't bring them home to her.
Right now Lauren is getting over a sore throat/cold that Timmy came home with the week before. This was actually the first time in almost two years that we were able to stay home with a fever and didn't have to report in to any doctors or clinics. What a weird (but normal) feeling!
In a way I'm glad Lauren's next round got pushed off til after the holidays. She's been able to do more holiday stuff this year. She helped bake cookies, cut down the Christmas tree, decorate the tree and wrap presents. She was able to go to the "Breakfast in Bethlehem" at our church and has even gotten to see Santa a number of times. All the stuff she missed out on last year.
For the last two weeks the kids have been practicing for a little Christmas pageant that will be put on at our church during tomorrow's Christmas eve mass. Lauren is an angel and Timmy is one of the three wisemen. They are both very excited. Lauren can't wait to wear her feathered wings. She looks adorable! After mass we'll be heading up to my parent's house for Christmas eve dinner.
I still can't believe that Christmas is here already and that in another week this year will be over. Thank you everyone for helping us through another year, for all the good thoughts and the many prayers.
May you all have a wonderful and blessed Christmas. We'll see you in the new year!
