Lilly finally started Long Term Maintenance in November. It seemed like we would never get here. This is supposed to be the easy phase. Less intense. Lots of medication at home, but manageable. We were told Lilly could start doing more "normal" things again. What's normal?
We went to see Christmas lights and found Santa, Mrs. Clause, AND Felix! The girls were very excited about that! One day Miss Emery will soften up to Felix. And don't worry Felix, you're not the only one... She wouldn't go to Santa either - only Mrs. Claus. :)
Lilly got to help with Michalla's tree at Festival of Trees. She was asked to draw a picture of the two of them together. I think she did a fabulous job! My Dad tunes the pianos for the festival each year, so we took Lilly early before it was open to the public to see Michalla's tree. It was very special. We sure love and miss Michalla.
Jay surprised us with a Polar Express train that goes around our Christmas tree. The girls were a little surprised! It's been fun!
Lilly got to visit her dance class and see her friends! We are going to start her back in dance in Januray and she is VERY HAPPY about that! Lilly got to help be the "judge" and watch their Christmas dance. She said they all did great and deserved a candy cane off of the Christmas tree! :)
Fun with cousins! Cute Lilly and Megan!
Lilly is getting creative when it comes to painting nails!! Sitting on Doug's shoulders and using his head as a table to paint Melissa's nails... What will she think of next? This picture was taken down in Manti. We went down for a baby blessing. It's the farthest we've traveled since Lilly's diagnosis. It was good to get out and visit with family that we don't see very often.
Lilly had clinic last Friday. She had a spinal tap and chemo. They did a CBC (blood test) to check her levels and her ANC was too low. So, she's not taking any oral chemo for the next two weeks to try and bring her numbers back up and then we will start back on them again, but only at 50% of where she was at. I think she's sensitive to medication like I am. When she started Long Term Maintenance last month, we determined she would take 2,379 pills before she was finished! That's so many!! Granted, we will have to make adjustments here and there, but still....
Another thing we discussed with her doctors is Lilly is having a hard time running and even walking. There's a chemo she will continue to take during treatment called Vincristine that is causing her to have problems. So she started Physical Therapy yesterday. She has exercises and stretches to do each day to try and help stretch her leg muscles out and help prevent it from getting worse, if not a little better. It's hard to see her struggle so much. She runs like an old grandma. Hopefully when she starts dance again it'll help stretch her muscles as well. They don't want to decrease her Vincristine dose unless they absolutely have to because it's such an important part of her treatment plan. If she continues to worsen, she may even have to have braces on her legs for a while. Let's just hope she'll improve from here!
No comments:
Post a Comment