Well, we have started DI1. All systems were go on Tuesday; Kennedy’s ANC was over 1500 and her platelets were a whopping 440!!! That is at the top of normal range! She is still a little anemic, not enough that they can do anything, but has been for the last month or so. She had her lumbar puncture with intrathecal Methotrexate, Vincristine, Doxorubicin and they started her on steroids. It sure didn’t take long for the monster to return in our house. Kennedy does okay as long as she doesn’t have the first tempertantrum. Once she is set off, there is very little we can do to make it stop until she becomes exhausted. Needless to say, yesterday was VERY LONG. Today we are at Auntie Caryn’s and I think staying busy is helping. Tomorrow she gets her PEG injection so I’m not expecting a joyful day. She is doing well actually but I expect it to hit her sometime this weekend. She also started physical therapy yesterday. They are very concerned about her response to the Vincristine, especially because she has so many doses still left, and she has begun exercises at home. Dr. Norwood reminded me that until she is so floppy she is unable to walk or sit, they will continue with the treatment. They may also be testing her for a genetic disorder that causes leg muscle weakness in older adults, but kids who are pre-disposed will have severe problems with Vincristine. She has exercises to do at home because in addition to having muscles weakness, she also has very tight hamstring muscles and heel tendons. She has a sticker chart that she uses to mark off doing her exercises and also one for meds (now that she has to take the really nasty stuff). It does help encourage her along. Physical therapy will meet with her once a week for now and will be fitting her with leg splints to wear at night that will help stretch those tight areas. At this point we know that she will struggle with walking, we’re just trying to slow it down.
The kids had a fabulous Halloween. We went trick or treating with Caryn and her family and their friends, Doug, Kate, Ryan, and Bekah, around the neighborhood. Kennedy was determined to do as much as she could be herself and only slipped once. Afterwards though, she was completely wiped out. We drove with Caryn and Jeff over to Kathy’s (Jeff’s mom) but Kennedy had started a serious meltdown so we weren’t there very long. She cried and screamed and fought her seatbelt all the way to Leland road in Beavercreek-a good 45 minutes! I just want to thank God and Zoloft for getting me through this trying time. She did have a great time though. Kennedy was Mulan (Chinese warrior) and Austin was the infamous Captain Jack Sparrow from Pirates of the Carribean. They looked great and had so much fun in their Disney costumes. What little troopers they all were with Emily (a raggy witch), Ryan (a muscular Batman), Bekah (a sweet kitty cat) and our little stinker, Bing as a skunk! They all looked so great and it was the one time all day that it didn’t pour down rain. Talk about luck! They made out with plenty of candy and when we got home there were treat bags from our neighbors, Terri and Greg, as they were worried the kids would not get to trick or treat.
Austin is doing better. He isn’t missing anymore school and seems to feel better in general. He is very responsible about taking his medicine everyday, which is a big help for me. Last Saturday, he had the opportunity to play the goalie position. Keith said he did excellent! Only 2 goals got past him and only because they were over his head and out of reach of his hands. Only 1 game left! While he is disappointed, I am glad that as the weather gets worse, we won’t be spending Saturday mornings in it. He also stayed the night last weekend with his best bud, Skyler and had a blast. Kennedy wanted to go with him but he wanted some time with just his friend, so Emily stayed the night with us. I went scrappbooking, which I haven’t been able to do since Kennedy’s diagnosis, and over 2 days got 38 pages done in Austin’s book. Keith had the girls and I really appreciated the time away.
Okay, I’m going to leave it at that for now since I am on my sister’s computer. 🙂 Hee Hee! I plan to update more later this week.
Love-Hope-Courage,
Mel
