Courage for Kennedy – Journal

April 30, 2006

Finishing Radiation and Moving on to Long Term Maintenance

Category: Family,Fundraisers,Treatment – Melenie – 10:18 pm

Before anyone starts beating down my door I thought I would get back to Kennedy’s journal. In this case, no news has been good news. Kennedy finished her radiation and came through with minimal acute side effects. She had a dry scalp and “burnt� ear canals. It really hasn’t seemed to bother her but they were peeling like crazy for a few days. The radiation oncologist gave us some ear drops to heal them faster but she flat out refused. Because they were not hurting her or itching and were only peeling, I let it slide and chose not to make a big issue out of it. The RO said it was up to her and they were mainly to relieve any discomfort. She also was more unsteady on her feet than usual but they chalked it up to all the anesthesia; I think it was a combination of that and radiation. Tuesday of that week, she had her usual clinic visit and started another four days of Ara-C. From the Ara-C the previous week, she also needed platelets. Unfortunately, it was already late in the day so after her appointment on Wednesday we went to Day Treatment for a unit; the good news was that they were ordered the day before and were waiting for us. The rest of the week went pretty well. On Friday, my cousin, Heather, went with us to the clinic while Kennedy had her chemo and had the opportunity to watch our big brave girl. Heather did her senior quest on ALL and we were able to share tons of information with her. I shared lots of pictures with her and she was able to gain more understanding of what families walk through on this journey. Oh, I forgot to mention that after Kennedy’s last radiation appointment, she received gifts and they had doughnuts and juice waiting for her. She did not want to be done with it. She really enjoyed all the wonderful people that made being up so early bearable if not pleasurable. In fact, Dr. Rose told me that it was wonderful for him to see us every morning with smiles on our faces. I had decided that no matter how afraid I was, I would not pass that on to Kennedy. I went every morning smiling and sending positive vibes. What she didn’t know, of course, was that inside I was terrified and spent our waiting time with my hands upon her precious head praying for protection and healing of the healthy brain cells and for God, in his infinite wisdom, to seek out the leukemia cells and completely destroy each and every one. She always felt it was a fun place to go and never once showed any signs of fear. Ok, now back to her last day. They even gave Austin a gift, a Cal Ripkin Jr. bear, for being the “best camera man ever.� Everyday after we would get Kennedy in the room and she was asleep, Austin would head out and adjust the cameras for Dr. Rose so he could watch her on the monitor. He got really good at it and they felt he deserved a reward for helping. I will work on getting the pictures up this week. Becky explained to me how to do it so I hope to get those updated. Kennedy also was able to keep her mask from radiation and plans to paint it. She would like to get a wall “lamp� and use it as the shade. She loves it and was so proud to show it off at Grammie and Daddy’s work, to Auntie and the girls and to her Papa. While to most, if not all, of us think the mask looks a little freaky, she thinks it is the best and loves trying it on for everyone. Ok, so that ends our week. I’m trying to remember what we did over the weekend but I’m so tired that my brain is not recalling it. If we did anything important with someone we love, please do not be offended, it has been a long day and I’m just tuckered out!

The following Monday, Kennedy and I just rejoiced at sleeping in and having no where to go until it was time to take Austin to school. Heather joined us again on Tuesday when Kenn returned to the clinic for her favorite, “Mean Christine�-I mean Vincristine, and her last PEG injection. Heather and I took her earlier in the day (when the stores are virtually empty) to Old Navy and she was able to pick out some goodies including the cutest denim skirt and an I Love Mom t-shirt. She did well with her last “leg pokes� and was happy to find out they were over. Of course, she needed more platelets so after we finished there we headed back to Day Treatment. I ran down to get Kennedy a snack and she decided it would be a good time to do some climbing and slipped causing her to have a very dark bruise down her entire shin. It didn’t hurt much but because her platelets were so low, it looked horrible. Her platelets haven’t been great anyway so it pretty much looks like we beat the tar out of her and of course, she wants to wear her new skirt all the time or with the warm weather, shorts. I just know that one of these days someone is going to question us about the way she looks, especially when her hair comes back in! The rest of the week we pretty much laid low because her ANC is shot. Thursday we did go to Austin’s first baseball game. Before the game even started, he got hit square in the nose with a ball and blood was just pouring out of both sides. I thought, “oh, great, first game and already he broke his nose!� He didn’t, of course, but I was all excited about it anyway! Daddy and Kim dealt with it and he was back and ready to go when the game started. He got the first hit and first run of the game so that was encouraging for him. By the end though he was tired as he had been up since 5am so he could go to work with Keith for “Take Your Child To Work Day.� He was cranky and wanted to give up after striking out but the last time he was up at bat he hit it again and made another run before it was over. This is his first year with kids and coaches pitching and it is very frustrating to spend your time at the plate dodging balls instead of swinging at them. He’ll get it though. In his game on Saturday, he actually got to pitch and Keith said he was the only kid to strike batters out so that made him pretty proud! We also received the check from Papa’s Pizza and it was over $660!!! Thank you so much to everyone who ordered that night to help our girl. We all had such a great time! Kennedy enjoyed seeing everyone and playing with the kids and I enjoyed visiting. I tried very hard to make it around to everyone but I’m sure there are some people I missed. I was so busy socializing that I didn’t get any pizza to eat until we got home after 10pm! I loved it though so I really didn’t mind. T-shirts and bracelets are selling like crazy and we have made well over $500 to date so if you want one, please e-mail me soon before their gone! Let’s see, what did I miss…Saturday we stayed home and Sunday we ran to my Auntie’s Sue’s so I could get the last pictures to Heather and sign off on her project and then headed to Doug and Kate’s so Keith could buy the truck box from my sister and brother in law, Caryn and Jeff, and we had so much fun we stayed for dinner. Everyone was well and it was a small group situation so we felt good about having Kenn there. She had fun and really misses being with other people. She is such a little social butterfly. Oh, I just remembered, when we were at Day Treatment on Tuesday, we were able to see her PT Amy! Kennedy has been having some problems with her leg braces so we think we have them fixed now. It was so wonderful to see her! Kenn misses her so much! She also had a CD for us of pictures her boyfriend, Sean, took at St. Baldrick’s of Keith getting his head shaved and of her and Kenn. She is the best and I hope this insurance thing gets resolved soon so Kennedy can get back to working with her.

That should wrap it up. Grammie and Papa were in Idaho the last few days putting my Grandma Marty to rest with Grandpa Jesse. We really wish we could have gone but there is no way the Drs would have allowed Kennedy to travel that far. A lot of family was there and we miss them so much but hopefully someone will get a reunion planned for very soon and we can see them then (hint, hint!). They will be back tomorrow and the kids can hardly stand it. What on earth would they do if they actually had to live far away from them? Silly me! They would NEVER allow that to happen! Tuesday Kenn has more chemo and blood (if she doesn’t go in tomorrow for that!) and then we lay low again for the next week. Tuesday, May 9 will be the one year anniversary of her diagnosis and is already stirring up a lot of emotion for me. It is also the day she is scheduled to begin long term maintenance. I am starting on the journal entry for that day now as I know it will be difficult and rewarding and will not be written in an hour or two. I have some more good news to share in the next few days when I have more details too (and NO, I AM NOT PREGNANT!) so watch for that. Also, it looks like we are finalizing plans for Kennedy’s Make A Wish trip…FINALLY…and we should be flying out June 20th and returning on June 26th . If you haven’t heard, her wish is to meet the Disney Princesses so we are headed to beautiful, sunny southern California! I’ll have more details soon. And finally, please pray for direction for me…the Lord is asking me to make some decisions about my future and I just want to be sure that I am doing His work and not lighting my own path. It is something that I would enjoy but is stepping out of my comfort zone and I am concerned about my ability to do all that He is asking. I know that He would never ask me to do something big without Him but this isn’t at all where I thought I would be heading. It would be an opportunity to share all of the amazing things He has done in our lives and allow us to minister to others but as with all plans that we only have a small window to see, it can be scary to step out and do what we are called to. Just pray that I will be able to hear His voice clearly and follow His direction for my life.

Please pray for:
And all the other children we have come to care about as they continue to battle cancer and it’s lasting effects
Pray for their families as they walk out this journey

Jeremiah 29:11 “For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.”

James 1:2-3 “My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience.”

According to my bible, “patience transcends the idea of bearing afflicition; it includes the idea of standing fast under pressure, with a staying power that turns adversity into opportunities.”


2 responses to “Finishing Radiation and Moving on to Long Term Maintenance”

  1. aprilb says:

    So happy to hear how you ALL are doing!! So GLAD Kennedy is DONE with radiaiton!!! Wow! What an amazing little girl! What an amazing mom too! and brother Austin and dad! I LOVE reading your LONG updates!

    Can’t wait to hear about what you believe God might be calling you to!!! Whatever it is…you can do ALL things through Him who strengthens you!

    Hope to bump into you some time! As always, you are in our prayers.

    Joshie’s mom,

  2. Tiffany says:

    you will definately be in my thoughts and in my prayers

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