Courage for Kennedy – Journal


November 9, 2005

Category: Family,Fundraisers,Gratitude,Treatment – Melenie 12:37 pm

Welcome back for our weekly update on Miss Kennedy and the Duval family. Kennedy just had her second dose of chemo for DI1 and completed her first week of steroids. Has it only been a week? The steroid monster makes it feel a lot longer than that! And we still have 2 weeks to go. Ugh! Her counts yesterday were good but steroids have a tendancy to falsely inflate her white count the first week so her ANC was over 4500 and her platelets were 440. She received more Vincristine (Mean Christine as we call it) and Doxorubicin. They expect her counts to bottom out later this week/weekend so she will probably need a transfusion in addition to her chemo next Tuesday. This will certainly make for a long day. She also had physical therapy with Amy. We talked about options for Kennedy and decided that she will have a brace she wears on alternating legs at night to stretch her muscles and tendons before they get tighter and then during the day, she will wear foot supports to help stabilize her ankle and arch. This will help her to run, walk, jump and climb with more confidence. You can check them out at www.surestep.net. They come in a variety of patterns and Kennedy has decided that she wants butterflies on hers. Amy said that kids really like them and want to wear them because they can do more things. Kennedy is the first “cancer kid” to be fitted with them at Emanuel. They usually are made for kids with Down’s Syndrome. Because of Kennedy’s long intensive treatment and problems with walking, they decided to try it. Most kids with tumors have shorter treatment schedules so while they have some of the same problems, their course of treatment does not warrant orthopedic devices. And while ALL kids have long treatment schedules, Kennedy’s is especially intensive due to her status of being high risk and slow responding. Her intensive lasts almost 1 year and includes many, many doses of Vincristine. We have just recently learned that Kennedy is the only child in the Legacy clinic on this research protocol (COG AALL0232, Arm DH) and only one other Leukemia child is on a tougher program. Well, our baby has been a test study from day 1, why should now be any different. The hope is that it will slow down the process and if the outcome is good, then they will use these supports for other kids. Amy expects Kennedy will have to wear them for the next year at least. She will regain her skills but it could be a long time coming.

Last Friday, Kennedy had her PEG injections. It did not go well. She screamed and fought and took a LONG time getting over it. We went to the store and got Chinese food, her favorite while on steroids, so that helped to calm her down. The weekend went okay. Kennedy and Austin went to Uncle Mark and Aunt Judy’s on Sunday so Keith and I could have a nice break alone! Imagine that! Kennedy only had one melt down (over BBQ potato chips??) but Uncle Mark was able to devert it by giving the puppy, Waffles, a bath. That was enough to change her mood completely. We were so thankful for the time alone. We went to lunch, went to Fishermen’s and bought Keith some new raingear and picked up prescriptions at Walgreens. Not much excitement I know, but when you only get a hour of time alone a week-that was heaven! We picked the kids up and went to Kmart. Exciting, huh? The good news was we got Kennedy’s Halloween costume for next year for $1.56. Yes, you read that one right-it was $24.99 regularly. It was a steal! Of course, Austin could not decide this early what he wanted to be.

Austin had his last soccer game on Saturday. He rocked! He played goalie the first half and dove head first in to the mud to block a goal. It was pouring down rain and freezing and the DD Vipers still kicked butt! During the second half of the game, Austin played forward and got things done. He did get called on numerous tripping and shoving charges despite the fact that he was shoved and Centennial didn’t get called on. Sorry for my little vent. Austin is the littlest guy on the team but he takes no crap whatsoever! He did almost get in a fight and ejected from the game. Within a few minutes he shoved a bigger kid and then accidently flipped him in the air and the kid started following him and talking trash. While Austin would not start it, I knew he would not tolerate getting hit either. I got it all on tape and they almost ejected both boys for name calling. At the award/trophy lunch (at Old Chicago! Yum!), his coach called him “The Enforcer.” He loved it. But you know what they say, don’t mess with the little guy-ours is a firecracker! He then spent the night again with his best bud, Skyler, and they had a blast! Kennedy was jealous but she can’t do everything. She spent the day playing with her bestest friend and cousin, Emily.

Austin has the next few days off for conferences and Veteran’s Day so we had Emily stay the night and tomorrow we are going to the early showing of Chicken Little. That ought to be fun. Grammie wants to see it too so I’m sure we’ll get to go again! Kim and Skyler might be meeting us there so that would be fun for Austin and I. Better get lunch going!

A quick note, Thank you so much to Patti Torres for raising $230 for Kennedy at the 4H horse show in Douglas County, Oregon! We really appreciate everything!

Love-Peace-Courage,
Melenie

November 3, 2005

Category: Family,Treatment – Melenie 2:54 pm

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