She's been feeling pretty good for the most part. She finished the third cycle of Accutane on Friday. This round really did a number on her skin, not only on her face but all over, and she had some pretty bad headaches and hip/knee pain. The headaches seem to be gone but the leg pain has lingered. Hopefully that will disappear this week too. And hopefully her skin will start healing up before we have to start the next cycle on the 23rd. I've been trying all kinds of creams on her but even the ones that shouldn't sting do. The only one that doesn't seem to bother her is Aquaphor. And since her skin is so dry she hasn't been too keen on putting sunscreen on (some of it stings on the really dry cracked areas) so I've been trying to keep her in when the sun is the strongest. She still gets wiped out pretty easily when it's hot so there hasn't been too much arguing when I tell her we have to go in.
As most of you know, Lauren's birthday was yesterday and we had a great party/BBQ in the backyard to celebrate. We had a small kids party (butterfly theme) in the morning and the kids had a blast! Then in the afternoon Bill's parents, my parents, Aunt Nean, everyone from the morning party plus more friends and neighbors came over for a BBQ. Lauren partied from 11 am til 10 pm without a nap! And she really kept up with the bigger kids. They played in the sprinkler, with water balloons, water guns, in play tents & tunnels, on the swingset. Basically they ran around with all the neverending energy that only kids have! It was great to see Lauren running around having so much fun. Thanks everyone for helping us celebrate!! And a special thanks to Sharon for all her help, especially for making the great butterfly cakes and cupcakes.
We had another really fun event last Sunday too. We did a Passport Potluck Dinner. There were five families and at each of our houses we had a different part of the meal from a different country. We had drinks from Mexico, appetizers from China, salad from Greece, entre from Italy and desserts from Ireland. The idea was for the kids to be able to try different foods. After they tried the food from each country they got a sticker added to their passport and at the end if they had a sticker from each country they got a prize. The kids did great and we all had a ball! Lauren was really happy because we had the chinese food at our house. Actually Lauren carried her fortune cookies with her and ate in China at each house!
Ok now for the quick medical stuff.......
We went to the Valerie Center today for checkup and counts and everything looks good. Lauren's BUN (a measure of kidney function) was slightly elevated again ( it was slightly up right before the last round of antibodies) But we think it might be due to the Accutane so we're going to check it again right before and right after the next cycle and see what it does. Dr Kline is not overly concerned at this point. We also drew blood for the HAMA test today. I should have those results by Thursday morning and then we'll know if we have to go back to Sloan for round 5 of antibodies.
It's been over a month since our last visit so it was nice to see familiar faces again. Two of Lauren's friends, Susan & Billy were in for checkups too so we got to visit with them for a while. Unfortunately Lauren's craving for a Happy Meal was so great that we didn't get to visit our favorite nurses on the floor :( Sorry guys! I promise we'll catch up with you next time!
We are so thankful for how great Lauren is doing and for how good she's been feeling. And writing about this upbeat news has been easy. Unfortunately we did receive some sad news that is not so easy to write about. During these past two weeks, two children that we had met during our visits to Sloan lost their battle with this terrible disease. Andrew who was 5 and had a great smile. And Rachel, who I called "the little lady", was Lauren's roommate during their first round of antibodies. She would have been 5 this year. (There's a picture of Lauren & Rachel on the photo page). Please say a prayer for the families of these "little angels".
As always, Thanks for checking in on us and for keeping us in your prayers
