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:
Oliver
Joshua
Gage
Rebekah
Madeline
Warren
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.”

Hope-Faith-Courage
Mel

March 7, 2006

We Are Honored To Be Living With a Queen!

Category: Family,Fundraisers,General,Gratitude,Treatment – Melenie 9:42 pm

I wish I had a good excuse for not updating Kennedy’s site but I really don’t. After receiving her last dose of Methotrexate on February 24th we were blessed with a two week break! She still had to go to physical therapy on the 31st and a counts check in the clinic on March 3rd but otherwise we had a taste of normal life again. Oh, and thanks to my cousin, Amanda, in beautiful Calgary, Canada! My hands are back to normal and feel so much better! I love all the products! Thanks to those who have ordered wrist bands and T-shirts! We could not do all that we do for our family and especially Kennedy without your support.

Did I mention we have a queen in our midst?? It’s true. Kennedy is the Coos County 2006 Honorary Fair and Rodeo Court Queen! Queen Alyssa, Princess Rachelle and Princess Jenny blessed Kennedy with this incredible honor! Alyssa and Rachelle (and in spirit, Jenny) arrived with their entourage in tow to crown our girl with gifts that included 2 pairs of Wrangler jeans, rodeo tops, 2 sashes and a pin, boots, belt and buckle, hat and crown, picture of the court, honorary plaque and her very own stuffed horse. She loved it and could hardly speak!! It was a wonderful surprise and she stripped right down to change in to her new gear! These girls traveled over 4 hours one way to crown their queen and invited her to the Coos County Fair and Rodeo in July but also to attend other events with them in her “queenly� clothes. She is looking forward to a fun filled summer! She carries the picture and won’t even let us put it on her wall. That night we went to pizza with our family and she had to have all her get up on! She felt like a star! Thank you, girls for making our little princess part of your court this year and we can’t wait to see you again!!

One fun thing we did was go to Soft Star Shoes in Corvallis on the 28th. The team of “elvesâ€? were awesome! They absolutely spoiled us! Austin was able to pick out the colors and style he wanted and even helped them make his new moccasins. He was very interested in how they were put together and even came home and made his own shoes for us out of construction paper. What a creative mind! They worked, measured and came up with 2 styles that work well for Kennedy. They fit snug over her brace and yet are easy to get on and off. She also picked the colors (pink…no surprise there) and was able to help in their production. Or at least sort of…she really liked the play area they have set up and found the play food to be the best part of her day. So we spent a few hours there learning how they do what they do and they even showed us some new styles they are working on! They are adorable and everyone should check out their website soon to see them. The kids were hungry and exhausted but the elves even wanted mom to have a pair of her own. They are absolute heaven! Did I mention that all 4 pairs were donated by Soft Star Shoes? I keep trying to tell them that they are angels disguised as elves! They are a wonderful and make beautiful shoes for kids and moccasins for kids and adults. Everyone should take the time to check out their work and support local businesses in Oregon. They have been in business for over 20 years and are only 2 hours from Portland. Their link is on our site and we are even quoted there…twice! I also have catalogs so feel free to ask me too.

On our way home, we stopped at Willamette in Salem and saw some of my professors and friends. That was so much fun as most people haven’t seen Kennedy since this past summer or when she was first diagnosed. We spent more time than we had planned there but it was worth it. It made me realize how much I miss my “community� there and that returning even for 1 or 2 classes in the fall will be rejuvenating for me. They all invited me to bring Kennedy and Austin if I need to and I will appreciate the ability to work with them even when I can’t be in class because of the kids. We also stopped by the Willamette Store and I made the mistake of telling the kids to just put their stuff on the counter and have her start ringing it up because I was visiting. It wasn’t bad but I wondered where the pens, notepads and bouncy balls came from. What??? I didn’t remember any of those!

Kennedy did well in physical therapy. She has returned to her pre-PICU status so that is good and now she will only be going 2x per month for now. Part of this is how well she is doing and part of it is 3 weeks of steroids coming up. There is really nothing they can do with 3 weeks of Vincristine or steroids until it is all over and we see what damage has been done. It’s not like we can really even maintain her abilities just because of how the drugs work. As we have all along…we hope for the best and prepare for the worst. She does love her new braces and shoes and she is walking so much better.

Tuesday we went to lunch with Athena, Breanna and Mackenzie at Papa’s Pizza (check out the page under fundraisers that Papa’s Pizza is doing to honor Kennedy) That was so much fun for Kennedy. Just to run and play with her pals. The play area is deserted at lunch so she had a real blast. Her ANC was high and I just wanted her to have a good time. I had fun just hanging out and having adult conversation about something other than Kennedy’s cancer. I love all of the incredible families we have met but I know they will agree that feeling “normalâ€? and talking about everyday things once in a while is one of the best things we can do for our spirits. We picked Austin up from school and then headed out to Auntie’s to get the girls for a couple of days. My sister had to have surgery on Wednesday and I knew she would need that night and the next morning to put all the pieces in place. The girls were raring to go and so we packed my car with car seats, bags, pillows, blankies and babies and away we went. I told Grammie and Papa that I found these two little sad girls on the side of the road with no families. They just laughed! Emily thinks that is the funniest thing when I say that. Wednesday was an early day but we all survived and had a lot of fun. Thursday I went to see my sissy and got a reprieve, thanks to Grammie, and headed to the grocery store.

Our weekend was pretty quiet. We had Amber Saturday night and stopped by Auntie and Uncle Jeff’s on Sunday. Keith treated us and Grammie to Chang’s as we know that soon Kennedy’s ANC will be shot and there will be no more eating out for us. It was delicious and we felt ready to start the week. Oh, I forgot to mention that on Friday Kennedy had her counts check. Her ammonia levels were still above normal but everything looked really good and ready to roll on Tuesday with chemo.

Monday was uneventful as usual. Oh, how could I forget??? Many thanks to the kids at Oregon City High School for fundraising this past month (thanks, Tiffany for all of your hard work in getting it started) and for the youth at Mountain View Community Church (especially Becky) for the benefit concert this past Saturday. You guys are all so wonderful!! I don’t have all the numbers yet but hope to soon and will post them when I do. Tiffany is doing a presentation on Thursday about ALL and Kennedy and I are hoping to make it. Also, the drawing has been done for the Timberline packages raffled off at the Indoor Garage Sale and I will post those winners ASAP.

Okay…today. Kennedy’s counts were perfect for starting chemo (we knew that they would be) and even her liver was looking good. Her enzyme levels are still up but her ammonia was in the normal range. Does this mean we are free and clear? Sorry, no. Tricia, the nurse practitioner, reminded me that those numbers are with her supportive care meds and she has had no chemo for 2 weeks. They do not expect them to remain that great over the next 2 months while she is getting Delayed Intensification 2 but it was certainly the best place we could be going in. She had her LP and intrathecal chemo, her IV Vincristine and Doxorubicin. She was scheduled to start 3 weeks of steroids (run…run for the hills!!!) but there was a problem with the pharmacy and prescription so we had to have the oncologist straighten it out and she will start tomorrow. Whooo…one more day before the nightmare begins. We do have dates for radiation and a full-plan now so check the DI2 page under her treatment schedule. Because she is scheduled for full cranial radiation, she would not have gotten the 6TG anyway so they are doing nothing to replace it. Kennedy is having some problems with runny, crusty eyes and nose but the NP thinks it is because she has very few eyelashes or nose hairs to keep the dust, germs, etc out and therefore, more fluid is needed to keep them clean and clear. She also has a rash under her tape on her NG tube so we switched to one that is more hypoallergenic. Her skin is so sensitive that it begins to break down from the constant wearing of tapes and bandages. Overall, she is doing well and is in the best place for starting a re-induction type therapy. She is doing absolutely fantastic compared to where she was a few months ago. They are finally breathing a sigh of relief and sharing how close she really was to dying at Christmas. They have collectively agreed that telling us would not have helped and they were holding on the slim hope as much as we were. I’m really struggling emotionally with this. I absolutely trust that God is in control and has a plan but losing Kennedy is not my plan. I am amazed at how close we can come to death’s door and still be pulled back. Kennedy is suffering post traumatic stress from the experience so emotions are constantly being scrutinized and in our face lately. When does the horror of cancer ever end?? Isn’t it enough that we have to deal with the whole cancer thing? Why are there more effects that just keep hanging on? And guess what?? We still have 1 year, 5 months and 12 days left of treatment if things go “according to plan.� We may be almost to the end of the worse part, but we aren’t even half way through! Then we have another 5 years of frequent doctor’s visits (every month the 1st year, every 2 months the 2nd year, every 3 months the 3rd year and then every 6 months for years 4 and 5) before she will only need to go every year. 6 ½ years before they will say she is “cured� if she has no relapses. She will be almost a teenager!! Sorry, this is not my cheeriest entry…it must be the day.

This is supposed to be a place to write about my feelings and by the time I write about what we have been up to I’m ready to be done. Maybe tomorrow…tonight I’m exhausted and I know I have a busy day planned playing with my nieces and taking care of my sissy. It will be a nice reprieve and a chance to regroup and think about where I’m at and where I’m going. If I wouldn’t let so much time pass…I wouldn’t have quite so much to write…I would have more time to write about where I’m at. Today…I’m struggling to get my footing. I know that the ground I walk on is solid, but my feet are tired and slick. Today is just not my best day. Please don’t tell me that I am taking on too much, you know exactly how I feel (unless you possibly can) or that I should “lighten my load.� I know that I am doing exactly the things that God would have me to do in this moment but I have a right to sometimes feel like the burdens I am carrying are heavy. God will bless us for our faithfulness in this walk but as we are refined in the fires, it can be painful and difficult to bend. After all, He could never call us to work HIS miracles if we could do it all on our own and of our own power. We are NOT miracle workers except by His hand working through us. It doesn’t mean it is easy or fun or painless but the rewards are greater than all the monetary riches everywhere. Today is just not as pleasant as I would like.

Love-Hope-Faith
For without these we would have Hate-Despair-Darkness

Mel

February 21, 2006

And the World Keeps Turning…

Category: Family,Fundraisers,Gratitude,Treatment – Melenie 8:04 pm

Kennedy had physical therapy today and it went really well. She got her new orthopedic braces and they are helping her so much. The bad part?? No shoes fit over them so we had to buy sandals until we can go down to Corvallis to meet with the elves (I really think they are angels!) and have some shoes made for Kennedy. She had a great time and moved with a lot more confidence. She also had her home health nurse come out for a nutrition assessment…the insurance is precertifying nutrition but we have heard this song and dance before. They said if we do the assessment they will start paying…I won’t hold my breath. They have paid for NOTHING so far despite the fact that there have been life and death decisions to be made.

I also bought Kennedy the most beautiful pink Easter dress, hat and purse. I haven’t gone all out since her 1st Easter but it is a way for me to hold on to hope for the next 2 months as we revisit the worst part of our journey. I am determined that she will be healthy and thriving for Easter Sunday and will look dazzling in her new dress. Easter will be the perfect day of celebration…the day Jesus beat the devil and gave us all everlasting life. The day the King cheated death.

Thank you so much to my cousin, Amanda for sending me all the wonderful products to return my hands to their pre-diaper days and all the pampering supplies! What a tremendous blessing this is to me and I can’t possibly thank her enough. They smell wonderful and I appreciate not only the goodies but also all of the instructions to go along with them. When Kennedy recovers, we would love to visit all of you in beautiful Calgary, Canada. We are huge rodeo fans and hope to join you for the Calgary Stampede.

The bracelets are in!!!! Get yours now while supplies last!!! Just e-mail us if you would like some of your own or would like to sale some for Kennedy. They are $4 each or 3 for $10!! They come in 5 beautiful colors! They say “COURAGE4KENNEDY” on the front and Leukemia Warrior inside.

I had seen this on Julianna’s website (www2.caringbridge.org/canada/julianna) but saw it again after Josh’s mom posted it there. Many of us, even those not currently receiving chemo, are going through a rough time with cancer and are finding inspiration from each other. Many, many parents suffer post-traumatic stress disorder after it is all over and have a hard time recovering emotionally from walking this journey with their children…sometimes more so than the kids-especially if they are little. Please pray for parents as they walk along side their fighting warriors. Our gut check moment was this past Christmas which is just now really starting to hit us.

“When our family history is written, this will be our watershed moment. Our collective gut check. It was the death of the last of our innocence, and the birth of our resolve. cancer is a bitch. Not only does it systematically dismantle your physical health, but it will gladly steal as much of your emotional and psychological well being as you allow. And if you are reading this and you are just starting down your own cancer path, pay very close attention, because I just typed the five most important words in my entire two and a half years of cancer hell…

AS MUCH AS YOU ALLOW!

It can take away your health or your hair, but cancer doesn’t automatically take away your hope, you allow it to. It doesn’t take away your dignity, you allow it to. And it damn well has no business taking away your resolve, unless you allow it to. Every aspect of your coping is yours to control. When you don’t make the conscious decision to apply that control, you are making the unconscious decision to forfeit that control to cancer. You may not even realize that you are doing it, but no decision is still a decision, but by omission. And cancer will gladly and greedily take as much as you allow it to.

Don’t let it! Stare your demon square in the eye and yell “NO!� Make the conscious decision to fight cancer on each and every front. Physically. Emotionally. Psychologically. Spiritually. Any ‘ally’ you can think of, draw your line in the sand and spit in cancer’s face! I know first hand how difficult it is to do, and I in no way mean to trivialize what is undoubtedly the defining challenge of our entire lives. But you have to do it, man, you just have to. You and the wonderful people that love you deserve nothing less. Do all the things that make life the beautiful commodity that it is. Love like it’s Valentine’s Day every day. Laugh like you’re Chris Rock’s drinking buddy.

Not because of cancer, but despite it.
Luv,
Julianna’s dad

P.S. – and don’t ever let me catch you capitalizing the word ‘cancer’! Remember, it doesn’t respect you, so don’t respect it.”

“If Children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but to HOPE? We have two options, medically and emotionally: give up, or FIGHT LIKE HELL”.

-Lance Armstrong

“It’s not the size of the dog in the fight, it’s the size of the fight in the dog.�
– Mark Twain

Kennedy: Gaelic meaning “hard headed warrior!!”

Here’s to fighting the good fight,
Melenie

February 20, 2006

Who Knew How Busy/Normal We Could Be???

Category: Family,Fundraisers,Gratitude,Treatment – Melenie 10:46 pm

I am amazed everyday when I look at Kennedy at how resilient kids can be. God could do so much with us if only we stayed childlike…it’s no wonder He asks us to come to Him as a child would.

I know that I have been way behind but it is only because Kennedy is doing well and I’m trying to keep up with her. I am more than a week late on getting updates so I will just start there…

Friday, February 10, Kennedy had a 9:30 lumbar puncture with Methotrexate, IV Methotrexate and IV Vincristine. Her counts had recovered quickly so she got 130% of the normal dose. I was a little worried but held on to the fact that she had been doing well. Her ammonia levels had continued to be a problem, so Dr. Norwood moved us from 2x a day to 3x per day. Lucky us…more diapers! We are using more diapers now than we did when Kennedy was a newborn! This took some getting used to because she had been potty trained for almost 2 years when she was diagnosed. She breezed through it and even woke up hungry. Luckily, the people who work in the Heartbeat Café downstairs know us and whipped up some bacon even though it was closer to lunch. She devoured it and we were able to leave at a relatively decent time for a change.

The Indoor Garage Sale was this weekend. Many, many thanks to Katharine Wilson and Willamette Falls Hospital for organizing this event, it was a huge success! Thank you to so many who donated items, handed out flyers, worked the sale and helped with set-up and clean-up. I would like to thank my dad for working all day both days and spending an entire weekend posting flyers around Molalla and Mulino. The event raised over $3400!!! Yes, you read that one right! We were all expecting around $500 and would have been very blessed but this was amazing! Check out the link to the Indoor Garage Sale to find out what that much money is capable of doing for our family!

Saturday night we drove to Albany to watch our friends Adam and Ashley Fults ride in the Cupid’s Cowboy Rodeo at the Linn County Fairgrounds. They both did a great job! Kennedy was so excited to see Ashley, she begged me to take her down to where she was waiting for her ride. Kennedy had a chance to sit on Ashley’s horse, Dandy, and after the rodeo was able to ride Breezy bareback in the parking lot. What a thrill it was for her. We had not been able to see the Fults family since Kennedy was the queen of the last rodeo in October, the Boo Boogie Bash. It was wonderful to see them all again. A lot of people remembered Kennedy and came up to talk to her. The people at the gate selling tickets even recognized her and let our family in for free! She felt just like a celebrity. Kennedy even had a chance afterwards to say “Hi� to Wayne the announcer who has been following her story and was just as happy to see her as she was to see him. It was a wonderful evening…topped off with Christmas gifts from the Fults. Of course, they were horse related gifts! Kennedy was so excited and can’t wait to see them again. It was also Ashley’s sweet sixteen birthday later that week and we hope she will be able to drive up soon and visit with us.

I got a special break on Sunday…my aunt Judy and I had lunch at Sweet Tomatoes in Clackamas and then headed over to Old Navy where she blessed me with a new pair of jeans! Thank you, aunt Ju! It was nice to get away and just talk without interruption. Kennedy got to spend the afternoon with Uncle Mark, Chelsea and Joseph. She was just tickled because she got to help give Waffles and Peanut (the puppies) a bath. She could not stop talking about it all week.

We also traded in our dying minivan. It has not run the same since it was hit on the passenger side and over the last year it was telling us it could no longer go on. Unfortunately, we had no choice but to run it until had to be taken out and shot. Last year we went through several transmissions and it had begun to leak oil like a faucet…literally. It had no reverse, sounded terrible, smoked, was overheating until we fixed the fan and was very unreliable (having left the kids and I stranded several times!). Many thanks to Molalla Chevrolet who saved us. God works in mysterious ways…they happened to have a flyer from the garage sale in their window and we had Kennedy with us. Then the sales manager who negotiated with the bank, his wife had just finished chemotherapy a year and a half ago for cancer. We owed way too much on our van and we were prepared to tack it on but instead, they just ate the entire cost. They sold us a pickup for below blue book and kept the payments very reasonable. Now we finally have 2 reliable vehicles (remember we also have a car that Keith’s friends helped us buy and fix right before Kennedy’s diagnosis). With two parents always running all over this is such a blessing. God’s timing is perfect. We had tried to get rid of it a year ago and could not do it for what we could afford so we ended up putting over $1000 in it to no avail. The sales manager said that he told his wife it was the smallest deal he had ever made but our situation just really touched his heart.

Monday, since Grammie was off recovering, we met up with Auntie, Emmy and Amber for lunch. We went to Sweet Tomatoes and they loved it. Grammie, Auntie and the girls had never been there so it was a real treat for them. It is so fun to do “normal� things occasionally.

Back to Kennedy and our week…Tuesday it was back to the clinic for more counts and to check on her liver function. Her counts were fine; while they had dipped she was still holding her own. Her ammonia levels were down close to normal. We decided to back down to 20mg/2x. We were to return on Friday for a counts check and a liver function check. She also had physical therapy which continues to go well and she is walking better every week. Her new orthopedic braces should be here tomorrow or next week. She still has obvious foot drop/ankle issues, but she no longer toddles around the house. To celebrate Valentine’s Day, we took the kids to Godfather’s Pizza.

Friday, her counts looked great as far as handling the chemo but her calcium was dangerously low and her ammonia was back up. What a mess! So we added Tums to the regimen at 3x per day and continued with the Lactulose now at 3x per day again. Oh the diapers and cracked hands! I swear, if I never have a watery, poopy diaper to change again it will be too soon!! It looked like we were on for her last dose of chemo in Interim Maintenance 2 for Monday.

So what did we do this weekend?? Kennedy’s ANC was so good that we went to 2 birthday parties!!! Now if that is not doing normal stuff, what is? Saturday was Landy’s 7th birthday but first American birthday. Well, first real birthday celebration ever. Our friends, the Wilson’s, adopted Landy from Haiti and he had never had a birthday party before. We loved being part of it and enjoyed the beautiful smile on his face as he opened all of this presents, played with the kids and ate his very own birthday cake. What a blessing it was for us to be a part of the family’s joy. They are an amazing family and we look forward to celebrating future birthdays including those of their children who are still waiting in Haiti to come home.

Sunday was my darling niece and goddaughter’s birthday. Miss Emily is now 5!!! I can hardly believe it myself! We enjoyed a very fun afternoon at Build A Bear Workshop with many friends to celebrate. The kids made their own babies, bought clothes and then headed to the party room for cupcakes and to watch Emmy open all of her gifts. Austin made a dog named Mikey and bought him a football uniform and Kennedy got a purple bear named Princess. The purple bear is the Nikki #3 bear and a portion of the proceeds from the sales go to children’s charities. We found out from a sales associate that the Clackamas store’s proceeds go to children’s cancer research. So, if you are planning to go to Build A Bear, you could help find a cure for childhood cancer just by buying your own Nikki bear. You can’t miss her, she is adorable! Emmy had a wonderful birthday and Kennedy enjoyed the frosting on the cupcakes and watching Emmy open the gift we chose for her. Emmy had a wonderful time. My kids were excited to see Ally, Erica, Ryan, Aidan, Bekah, Emily, Amber, Haley and Conner. As I have said before, we have a new appreciation for the “normal� things…even the kids do.

Last night we did have something interesting happen…or I should say that Keith did. Around 1am he woke up with a sharp pain in his right ear and a lot of pressure that came and went every few minutes. He also had blood in his ear. Because he was getting over a cold, I was concerned that he might have a bad ear infection or worse that his ear drum had ruptured. He was going to go back to bed but I knew it must be bad if it woke him up. I mean the guy can sleep through ANYTHING. I insisted we go to the ER and have it checked out. We did and he had a real live bug in his ear. Not a bacteria but a living bug. I know this is stuff of urban legend but it was a bug and it was still alive!! It was scratching the heck out of his ear drum and causing pain. They drowned it with Lidocaine and numbed Keith’s inner ear. They tried flushing it and suctioning it but the bug had died with its wings open and its legs splayed so it was stuck. They were finally able to get it moved and after using equipment to hold his ear canal open, they used scissor clamps to reach in and get it out! It was an elder beetle which is very common where we live…OUTSIDE! If it would have been me, I would have lost it but you know Keith…he was totally calm about the whole thing. The doctor said it is extremely rare for this to happen to someone sleeping inside. They do see it in homeless people and those camping on the ground (outside). And everyone that he had seen with it had been running around screaming their heads off because it is so painful…not my man! As with all things, he was cool, calm and collected. The nurse joked as were leaving by asking Keith if he had a warm, dry place to sleep tonight…we just laughed. We got home about 15 minutes before his alarm went off so he decided he was awake and might as well go to work. I couldn’t believe it! I would have been staying home whining and sleeping all day. Now I know why everyone describes the guy as a “man’s man.â€? He is one tough cookie. His ear was bugging him (no pun intended!!) but he went after I put drops in it and didn’t complain one time. WE DID NOT TELL THE KIDS IT WAS A REAL BUG!!! THEY ARE ALREADY FREAKED OUT BY THE ELDER BUGS AND THEY WOULD NOT SLEEP IF THEY KNEW! PLEASE IF YOU SEE THEM DO NOT MENTION IT OR EVEN COMMENT ON THE SITUATION!

So today…her counts were great and she received 180% of her dose of Methotrexate and her normal dose of Vincristine. I was very concerned because her white count was over 5. Normal is about 10-14 but because their cancer is in their white blood count, it should not really be above 2 or 3. Dr. Norwood wasn’t too concerned but I did not like it one bit. He said that we have to use IM for a break and we can’t wipe her out all the time. I agree but it still makes me nervous. Her ANC was over 3000 and during maintenance they want it between 500-1500. Kids with higher ANC’s consistently during treatment often run a greater risk of relapse. Speaking of…Dr. Norwood gave us the bran today. While most leukemia kids have a 80% + cure rate, Kennedy is closer to 60% and 75% at best because of her high risk status, slow response and over sensitivity to chemo. He feels that a relapse now (before maintenance) could mean quality of life care for her because her body would not handle the very intensive chemo needed to get her back in to remission and cure her. A relapse during maintenance or in the 5 years following treatment and he gives her a 20-30% chance at survival. He did not feel that she is a candidate for bone marrow transplant because of the heavy chemo necessary to prepare for transplant. I asked him if he thought she was going to relapse and he hopes not…he just wanted us to know what we are looking at. It does worry me…just having this conversation at this point. He also shared with me that when she had VOD over Christmas he did not expect her to survive. He was very pleased and hopeful because she did but he was worried we would have to have “the talk� at Christmas. It has really hit me lately that we almost lost Kennedy. Wow…to even write it feels heavy. Today I just feel worried and have felt all along that we could be without her. I just pray for God’s will and I have faith that she can still beat this. We are coming up on Delayed Intensification 2 which almost killed her last time (DI1) so I have a lot weighing on my mind right now. This next round will include radiation and many changes from protocol that the drs. have yet to agree on. There are many drugs which have to be processed by the liver and Kennedy’s is still not functioning normally. Just sitting her makes me feel sick. Please pray over the next couple of months while we walk out the next test…we are really stepping out in faith. Dr. Norwood told us in the beginning that it is a very delicate dance between killing the cancer and killing the patient…now we know why. I just need more time to process what is happening and then I will be back to share my thoughts, feelings and ideas.

Do not be afraid of tomorrow; for God is already there. ~Author Unknown

The wise man in the storm prays to God, not for safety from danger, but for deliverance from fear. ~Ralph Waldo Emerson, Journals, 1833

Love-Hope-Faith,
Melenie

February 6, 2006

We Found A Stroller!

Category: Family,General – Melenie 10:36 am

Our days just got easier…we were able to find a stroller that is lightweight and will hold Kennedy’s weight. The best part? It was only $40 brand new! We looked everywhere and couldn’t find anything. I was totally unwilling to spend much since she is 5 years old. Even in checking on-line I couldn’t find anything at a decent price-especially after shipping costs were added in. I checked our friendly neighborhood Kmart before giving up and found a great stroller at an even better price. My back will be so much better!

Kennedy is doing great today. I’m going to be buzzing around trying to get things done-like cleaning my car and putting clothes away. Austin went to school and seemed to be feeling well today. It helps that things are becoming more normal around here.

Love-Hope-Faith,
Mel

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

October 26, 2005

Category: Family,General,Gratitude,Treatment – Melenie 10:05 am

While I know that this is Kennedy’s website, today is a very special day. Ten years ago today, Keith and I were married in Yakima, Washington. Ten years! Since October 26, 1995, our marriage has seen many trials including Keith’s drug and alcohol addiction, having our nephew Jay come to live with us and then after six years returning him to his mother, Laura’s (Keith’s mom) disabling car accident, my postpartum depression, both Keith and I returning to school, pregnancy loss, two children, financial problems, the list just goes on and on and through it all we have persevered-we have beaten the odds. Statistically we shouldn’t even be married anymore but our love for each other and committment to making this marriage work never waivered. When we got married we had made a decision that we would work things out and stay together no matter what crossed our path and it has been worth every trial. Sometimes I wondered how all these things could have happened to us over the last 10+ years that we have been together but without all of those trials, we would not be strong enough to weather our current storm and help Kennedy fight this battle. There have been times when we certainly did not like each other very much but we were always 100% committed to seeing it through and I can’t imagine my life now without him in it. He truly is the love of my life.

Ok, now back to my update about the rest of the family! Kennedy had her weekly check-up with the oncologist yesterday and there was both good news and bad news. The good news was her counts are looking great. Her ANC was 2020 and her platelets (while low) were 75 and should be on the rise. She screamed and fought both getting her port accessed and having it deaccessed. Even with her favorite nurse, Sam, there she still fought it with all the strength she had. She gets the week off from chemo and oral meds so she is very happy about that. Her hair is also growing back in (although she never lost all of it) and it is blond and silky soft. Of course, it may not stick around too long but it is so cute! As far as the bad news…the next phase of treatment is going to suck! Please forgive me but that really is the best word to describe it. It is going to be worse than the induction phase of treatment she initially received. She is also having severe constipation problems and we are starting her on a daily medication to help with that. Just adding to her cocktail! They are also very concerned about the way she walks. She has what is called “foot drops” that is caused by the Vincristine and it causes her to have an unusual gait. It has been progressively getting worse and the concern is that after 3 weeks of steroids (which cause muscles weakness and deterioration and makes her very tired and CRANKY) and 6 weeks of Vincristine, in a month she may not be able to walk at all. They have to push the Vincristine to toxicity before they can reduce or discontinue the doses because of its importance in treating High Risk ALL. If they push it too far, she may never fully regain all of her skills so it is a careful balance. We will be talking about options next week but until then she can not use stairs without assistance and must only wear her Soft Star Shoes. Please pray for Kennedy and all of us during the next phase.

Austin is cruising right along. Soccer is almost over (only 2 more games!) and he has done very well this season. He has made significant improvements and they are working more as a team this year. His head has healed up nicely and we don’t anticipate any more stitches or staples for a long time! We have been supplementing his education at home (by his request) and are working on history (War of Independence to the Civil War), science and literature. He is such a sponge right now that he can’t get enough information. I am so excited by his desire to further his education. He is having some sort of stomach issue though. He is having a lot of pain with intermittent problems so we are going to the doctor today. It has caused him to miss school and there is concern he may have developed an ulcer from stress. Imagine that! Stress? We certainly have none of that. He is very sensitive and emotional so we are concerned about him and hope that it is nothing serious.

*UPDATE ON AUSTIN*
I took Austin to see Dr. Skau yesterday and it was determined that he has acid reflux disease. It was no surprise because he is genetically predisposed to it and has been under a lot of stress the last few months. On top of all that, he has very bad post nasal drip which is also causing an over production of acid so he is taking Singular (for asthma and allergies) and Zantac. The doctor said it should take a couple of weeks for him to be feeling better. I’m just worried because he has missed a lot of school because of stomach pain. Pray for healing for Austin.

Love-Hope-Courage,
Mel