On Friday we went with Sharon and the girls to the Sussex County Fair. We go to this fair every year but last year Lauren missed out on the fun She had just gotten out of the hospital and was too weak to do much. Plus she didn't have the immune system to be around all the people. Well, she made up for it this year. She loved the Merry go Round, the Ferris Wheel and the little train. She didn't quite get the concept that you had to have tickets to ride and that you had to get off once the ride stopped. When she went on the train the first time she adamantly refused to get off when the ride was over. Luckily we had more tickets! While Timmy loves all the big daring rides (even when he was three) Lauren seems to go for the slower, tamer ones. She begged to go on a little roller coaster type ride but was crying to get off halfway through. She kept saying "I want to go back to the Merry go Round, I want to go back to the Merry go Round"! After all the rides the kids played some games then we ended the night watching the fireworks. The kids had a great time. Hopefully we'll be able to go again one night this week.
Lauren also had her physical therapy evaluation on Friday. It went very well and Lauren had so much fun "playing" there that she cried when it was time to go. I'm glad she liked it so much because we'll be there twice a week for at least the next three months! The physical therapist (Karen) said she looks great but that we have a lot to work on. Lauren has a lot of muscle weakness and limited range of mobility (movement) from all the surgeries and "down" time this last year. It is most apparent in her legs but after watching her with Karen I could see it's really all her major muscles. Her left side is weaker than the right which is the side of her chest the tumor was on and the side she had the most surgery. Some of it could be from nerve damage from the surgeries and might be permanant but nerves take a long time to come back so we won't know for sure for a while.
Tomorrow (Monday) Lauren has a checkup at the Valerie Center. I'm a little anxious because it will be the first blood draw without her line. I promised her we'll use lots of "magic" (emla) cream. They'll check counts and we'll send blood to Sloan for the HAMA test. (HAMA results should be in on Thursday)
Lauren started her 5th cycle of Accutane today. We had to postpone the start of this cycle due to a skin infection on her arm from the PICC line bandage. Because of the side effects to the skin, if she was on Accutane the infection would not have healed and could have gotten out of control. Only one more cycle of Accutane after this!
Well I'll end here as Lauren is standing next to me begging me to read her a book. She says I've typed enough!
As always, thanks for checking in on us and for all the thoughts and prayers.
Thursday, August 9 - Well the HAMA results are in and Lauren is still negative. We were so hoping that she was positive so that she could be done with treatment but that just isn't the case yet. So she's scheduled for Round 6 of antibodies Aug 27 - Sept 7. It will be her first round without a line so they'll have to put in a peripheral iv on the first day and then one the following Monday. She told me that she is a little afraid of getting "poked" but she is still glad she doesn't have a line anymore.
Lauren's checkup at the Valerie Center on Monday went well. Her counts were great and she's gained a little weight. She was a trooper when the time came to draw blood. She screamed a lot but held really still. When it was over she told everyone how brave she was and showed off her "sparkling" bandaid.
Due to the extreme heat, we haven't done a whole lot this week. Lauren doesn't do well at all in the heat plus she's not supposed to be in the sun much while on Accutane. I also had to put drops in her eyes 3x a day for the past four days to dilate her eyes for a checkup at the eye doctor today. The poor kid has been living in sunglasses. So for all these reasons we've spent much of our days just hanging out in the cool air conditioned house.
We did get back to the fair on Tuesday night and again the kids had a ball. Lauren rode her three favorite rides again while Timmy headed for the hang glider ride and the rollercoasters. Then we all walked around and Bill and I actually got to see the rest of the fair! Unfortunately our walking was cut short by a thunderstorm that blew through (and I swear it rained only over the fair grounds). We took shelter in the closest solid barn (a tent had blown down earlier in the week) and it happened to be the rabbit/fowl barn. Well Lauren was thrilled because she had be begging all night to see the ducks!
We were down in Morristown again today this time to see the eye doctor. By using the drops to dilate Lauren's eyes she was able to see that there has been an increase in her farsightedness. This means that there is a chance that with stronger glasses we "may" be able to avoid a second eye surgery. We'll check her eyes again in about two months. Hopefully the new glasses will help.
After the eye doctor we went across the street to the hospital for a 50's party on the pediatric floor. Lauren immediately made a beeline for the playroom, waving to the nurses as she ran past. Everyone commented on how great she looks and "all that hair"! It was nice to be there as a visitor and not a patient. The kids had a good time watching a magician and playing bingo and of course they came home with an armfull of goodies. Thanks Michelle and Kelly! Lauren was in a really good mood and even talked to some of the nurses (in the past she's been known to yell at them and tell them all to "go away") though she told me she was really sorry that we forgot to bring "Cheezer" with us. She told me to tell Gretchen that she promises to remember him next time! :-) (long story)
Tomorrow we are all heading down to Pop Pop's house (Bill's parents) for the weekend. We have a party on Long Island on Saturday and Patrick's (Bill's nephew) christening on Sunday (Bill and I are the godparents). It's been a long time since the four of us have been down there all together so we're really looking forward to it. Some much needed R&R. Hopefully this heat wave will break soon!
Have a great weekend everyone!
Tuesday August 21 - Well we've spent the past week or so just kinda hanging out doing normal stuff. We all really enjoyed our weekend trip to Pop Pop's house. It felt so good to just get away and relax! The kids got to swim in the pool only once because we finally got some much needed rain. We had a good time visiting at Paulette & Conrad's house too. It was great to see everyone!
We ended the weekend with Patrick's christening and again had a wonderful time. The kids did really well at the church tho Lauren did have one small meltdown towards the end.
Since Bill and I were the godparents we were in the pew with Maureen, Dave and Patrick. Timmy & Lauren were sitting about 4 pews back with grandma & Pop Pop. There were, I think, 6 children being baptised so there was a lot of people in the church. Well about 10 minutes into it, while the priest was talking, Lauren "whispers" up to me (as only a 3 year old can) Mom, I really have to go Pee! Everyone laughed. Thankfully she let grandma take her to the bathroom. Then things were going along fine until Lauren realized I was holding Patrick. She started sobbing "But you can't be Patrick's godparent....You're MY parent!" She kept saying this over and over. So after the actual christening, I gave Patrick back to Maureen and Lauren came up and sat on my lap. She snuggled against me and said "there, that's better" I think she just wanted to make sure I was going to give him back and not take him home with us!
After all the excitement of the weekend we pretty much just realxed this past week. Lauren was still on Accutane so we had to watch being in the sun. This round was horrible on her skin. By far the worst yet. People kept asking me if she rolled in poison ivy or had chicken pox. Thankfully the cycle ended on Saturday. Her skin still looks terrible but it's slowly starting to improve. I figure by the time we start the next cycle in three weeks she'll be just getting back to normal.
We also went to two sessions of physical therapy which Lauren calls "playtime with Karen" She's doing really well and although she has a long way to go, we can already see improvement. We'll go twice this week then miss two weeks while we're in the city for antibodies. Speaking of which Lauren has decided today that she doesn't want to go back for antibodies next week. This is the first time she's ever said this. I know it's because she's anticipating the "poke" for the IV and I'm sure she'll be fine once we get past that.
Today we had a "family" day and took the kids to Fairy Tale Forest. They thought it was great that daddy took the afternoon off and met us there. Lauren loved looking in the windows of all the miniature houses and guessing which fairy tale the scenes were from. Of course she had to ride the merry go round and the fire trucks too! We got there right when it opened so it was nice and quiet. And we were just about done when the buses of camp kids arrived. Perfect timing! We all had a good time.
One last note. Lauren's Make a Wish trip is almost finalized. We'll soon be heading off to Disneyworld to meet Mickey Mouse! I'm not sure who's more excited - the kids- or Bill and I! We'll be staying at a place called Give Kids the World that I've heard is awesome. We'll have passes to all the parks and attractions. A limo will take us to and from the airport. I can't wait.... a real vacation!
Well we'll be leaving for round 6 on Sunday so I'll try to update when we come home for the weekend.
As always, Thanks for checking in and for remembering Lauren in your prayers
