Courage for Kennedy – Journal


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 9, 2006

Children’s Cancer Association

Category: Fundraisers,General,Gratitude – Melenie 5:07 pm

For all of those families living in the Portland Metro area, please tune your radios to 105.1 The Buzz for their 28 hour marathon to raise money for an incredible organization, the Children’s Cancer Association, which does SO MUCH for local families with children fighting cancer. They provide the chemo pal program, the music therapy program, the Caring Cabin at the Oregon coast, Cancer Pages, the family resource room at the hospital and so much more. They have been essential to our survival these past 9 months. Kennedy has a wonderful chemo pal, Amy Guthrie, she loves karaoke, we have used vital resources in the Cancer Pages and we are looking forward to using the Caring Cabin soon. They are auctioning off incredible prizes until 10am tomorrow and many people are calling in to share their stories. It was very emotional for us but we just couldn’t seem to tear ourselves away from the radio. The CCA was started by the Ellis family who lost their daughter Alexandra to cancer. Rather than be swallowed up by their loss, they have given back so much to all of the families facing the same journey.

http://www.childrenscancerassociation.org/

http://www.1051thebuzz.com/

For those outside the Portland, OR area, you can listen to the show at the above address.

Thank you everyone for everything…update about Kennedy to follow tomorrow after her LP and chemo.

Love-Hope-Faith,
Mel

February 7, 2006

Just Another Day in Paradise

Category: Fundraisers,Gratitude,Treatment – Melenie 6:50 pm

My day started early with Kennedy throwing up formula all over me at 5am. Not exactly how I had planned it. The benefit was that I had some time to pray after cleaning everything up and waiting for the alarm to go off. I’m sure that is what helped my day to run much smoother. After getting the kids up and ready, I got a call from Keith letting me know that traffic was a disaster because of all the gawkers checking out the flat tire on the side of the road. Great…Austin ended up being 10 minutes late and Kennedy was 15 minutes late. It turned out ok because she wasn’t up to doing pt so Amy just worked on casting her feet to make molds for her new foot/leg supports. Kennedy continued to be sick despite not being hooked up to her food. Our appointment at the clinic wasn’t until 1:30 but we decided to see if we could get in since it was 10:30 and I hated to run all the way home just to come back to Portland. Despite being completely booked for the morning, Dr. Olson said it was absolutely fine and to work us in. Kennedy took a short nap (thank God) while we were waiting for her cream to work and did great the rest of the day. Her bilirubin was almost normal but her enzymes and ammonia were still too high. It’s always something, but she did just get more chemo last week. Her white count is dropping and her platelets are lower but not critical. They will check again on Friday and Dr. Olson said it was okay to leave Kennedy accessed-much to her delight. They were then able to squeeze us in for her occupational therapy evaluation at 1:00 (like I said, God sure worked out timing for us today!) and she definitely needs intensive work here just as she does with physical and speech therapy. I will have more information when I get the official reports-she just had a LOT to say today. We then headed down to the business office to work something out with our bill (now nearing half a million dollars!!!) and it looks like the hospital may write off 100%!! This is the hospital, day treatment, pharmacy when inpatient, therapy, clinic, radiology and radiation therapy, etc. We are not holding our breath but she said the committee is aware of our situation and are just waiting for the rest of our paperwork to come in. What a blessing that would be and would leave us with managable medical expenses (10-50 thousand) and care expenses. Please continue to pray for God’s prevision and hand in our financial situation. The insurance continues to be such a pain! They are pre-certifing almost everything (at the wrong hospitals but that’s another story) then not paying for anything-just reviewing and denying. We have always believed that God has a plan for EVERY SINGLE piece of the puzzle and the finances are just another piece. I meditate and pray daily and continually recite Jeremiah 29:11. I KNOW that God has a plan and a purpose for all of this and while He did not give Kennedy cancer, by allowing it to occur His will will be done and lives will be blessed and changed through this. He is such an awesome God! Am I ever mad???? Absolutely! Am I ever down and depressed? Sure! Do I ever question what in the world is going on??? Daily! But I know who is in control and because of that I can always move forward. One look at my daughter and I can’t help but have faith.

So tonight…Kennedy is still freaking out every time I even mention turning her food back on. I may just have to wait until she is out. Once she starts vomiting the idea of putting things inside her tummy is enough to upset her. She told me today that she wishes this stuff would just get out of her head (Kennedy has decided-after getting to ride in the front of the truck one time-that she gets car sick now in the back and I told her I thought it might be all in her head. She agreed and now she wishes all the bad things in her life would just get out of her head. Don’t we all!). We did get a pleasant surprise in the mail…we had turned in our receipt from Kennedy’s nutrition to Candlelighters and they were able to reimburse us for $750! That will definitely help. Many thanks to the wonderful organizations out there that help “cancer families.”

The rest of us are doing well and just moving along. We are planning to go the rodeo in Albany this weekend. We haven’t been back since Kennedy was the rodeo princess. Also, the t-shirt sample will be here tomorrow so they should be ready very, very soon as should the bracelets. The Indoor Garage Sale is this weekend and there are upcoming fundraisers planned including a benefit concert on March 4th and a raffle of some fabulous prizes from Timberline lodge-including a season’s pass of skiing valued at over $700 for next season!!! Thank you to Timberline and the staff and students at Oregon City High School that are working hard to raise money to help with Kennedy’s medical expenses-especially Tiffany Redwing for getting the word out about our girl to the OCHS community. Thanks to the many businesses in Molalla and Mulino who were willing to post flyers for the upcoming Garage Sale at Willamette Falls Hospital (and to Kennie’s papa who spent his Saturday morning going everywhere to ask) and also to Spurs in Molalla for their very generous donation.

In My Daughter’s Eyes-Martina McBride

In my daughter’s eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter’s eyes

In my daughter’s eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter’s eyes

And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It’s hangin’ on when your heart
has had enough
It’s giving more when you feel like giving up
I’ve seen the light
It’s in my daughter’s eyes

In my daughter’s eyes I can see the future
A reflection of who I am and what will be
Though she’ll grow and someday leave
Maybe raise a family
When I’m gone I hope you see how happy
she made me
For I’ll be there
In my daughter’s eyes

Love-Hope-Faith,
Mel

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

February 5, 2006

Another Week Down…How Many More to Go??

Category: Treatment – Melenie 12:09 pm

Well, we’ve finished another week of treatment. Now we just have until August 2007 until we are home free!

Kennedy had a clinic appointment on Friday. Her blood counts are stable. They think she probably could have tolerated 100% dose but not 120% which is what they would have given her. Her liver function counts though looked terrible again. She had lost more weight and was now down to 38lbs so the feeding tube had to go back in. Her liver is not able to function anywhere near normal without enough calories, fat and protein so when she is not eating it starts having problems again. Her bilirubin was back up as were her ammonia levels (al was in the normal range and her bili was close to normal). This is such a delicate dance. We also increased the Lactulose again-lucky mommy! I changed 8 poopy diapers in one hour this morning. My hands are just cracked, raw and dry from washing and when I got in the shower last night, they just burned from the hot water. The insertion of the NG tube did not go well as you can all imagine. I don’t blame her really, I can not even fathom how horrible it must feel going in. Thankfully, and with much prayer, it only took about 24-36 hours for her to get used to it and stop gagging this time. Unlike the last time, where she was vomiting for 5-7 days, she did not vomit at all. I was so proud of her.

Kennedy had wanted to see Rebekah, a friend from the clinic, all day and didn’t see her until the NG tube was in and she was hysterical. I would have loved to visit too but Kennedy was in full blown melt down mode. Rebekah looked great and we ask that you pray for her family this week while they are put through a battery of end of chemo tests and await the results. Ewings Sarcoma is a nasty cancer and we just come against the enemy and claim healing and a long blessed life for Rebekah. You can meet Rebekah and find out more about Ewings at www.helprebekah.com

Yesterday I took Kennedy with me to go stamping at my friend Kristy’s house. It was great to get out and visit with everyone after not seeing them for so long. Kennedy had a blast playing with Jayden, Jadwyn and Tennisyn. She spends so much time around kids with cancer that playing with other kids is a luxury. Her ANC was at 1800 Friday so I just let her play and be a normal kid. Kennedy is feeling better today and we even went out to Chang’s last night with Grammie and Papa. Austin did not like it as well as he thought he would but I think he didn’t realize that the food was uncooked and you made it yourself. I think he thought it would be like a chinese buffet. Kennedy had some soup and rice with plum sauce and the adults of course, overindulged! We then hit Winco. Kennedy loves going shopping so she was thrilled. Now, I LOVE Winco prices but I HATE the store…kind of like shopping at Walmart.

Thank you everyone for your prayers. I am feeling much better and truly believe that I am on the mend from my little mess last week. I’m sure the medicine helped but prayer was the turning point. It is so hard to take care of Kennedy when I feel so crappy. Austin is also doing better. I think the majority of his problem is stress and anxiety though. Keith did have his appointment on Friday and please pray for him as he fights quitting chewing and smoking. This is a difficult enough task normally but add stress and it can be a downright battle. He is playing poker this afternoon and then we will all be watching the Superbowl-GO SEAHAWKS!!

So this week we have a counts check on Tuesday along with physical therapy and Friday Kennedy has an LP w/Methotrexate in her spinal fluid, IV Methotrexate and more Vincristine. She is having a lot of leg pain and struggling to walk so continued prayer for that. We are trying to find a stroller that will accomodate “steroid weight” but is light and compact. She has a jogging stroller but it is so long that it doesn’t fit well in the elevators or offices at the hospital. We are hoping to find something this week as it is getting very difficult to carry her all the time with her weight fluctuation and my back.

Please pray for all the kiddos fighting cancer, dealing with side effects and complications, recovering from treatment and facing long term complications. Also continue to pray for those families who have lost their dear children.

Love-Hope-Faith,
Mel

February 2, 2006

Everyone’s Falling Apart :)

Category: General,Gratitude,Treatment – Melenie 8:13 am

Another exciting week in the Duval/Platts house…Austin had some kind of tummy problem and missed school both Monday and Tuesday (I think it’s stress :)), Kennedy had her appointment on Tuesday and Wednesday, and I had a Dr’s appointment on Wednesday for my cough. So what are the results of all of this?

Austin is fine and back in school. I think the poor kid is working through a lot emotionally this year and having a hard time being away from us during the day. That would certainly create some tummy upset for me!

Kennedy did well on Tuesday. Her ammonia levels were in the normal range and while her enzymes and bilirubin are still high, they were closer to normal. Her platelets were 80-they haven’t been over 100 (140-440 is normal) since her last round of chemo. I expect she will need a transfusion by next week. It has been almost 3 weeks since she got her last dose of IV Methotrexate so she was definitely due. She also got another round of Vincristine (mean Christine). Today, Wednesday, she had to have her PEG injections. I put off telling her until the very last minute and she went in to a crying frenzy. I can’t really blame her-I would not be happy about getting routine shots in my upper thighs. She did well and insisted that she only wanted one nurse to do it despite the fact that she could only do one at a time. Kennedy also had to give a urine sample (no small task for a 5 year old with chronic diarrhea) and her urine was very concentrated so even though I told her we weren’t going to, her port had to be accessed for counts and fluid. Boy was she ticked off after all of that! She also had physical therapy on Tuesday and because Austin was there she did fantastic and we didn’t have any tears (her, I or Amy!) She made “Austin/worm soup,� she raced him on her scooter and played beach-volleyball. We talked about her new braces and our insurance “pre-authorized� them (which means that they will let someone make them and then refuse to pay for them) so Amy will be taking casts of Kennedy’s feet next week. After we get them in about 3 weeks, we will head to Soft Star Shoes in Corvallis to have new shoes made for Kennedy. Everyone should check them out as they make wonderful shoes for kids of all ages (infants to 100 years) and they are donating shoes to both Kennedy and Austin. They are not elves-they are angels in disguise. Kennedy was also supposed to have her occupational therapy evaluation in April (crazy, huh????) but after Amy explained to the OT department what it was all about, they are working to fit her in over the next two weeks. It is necessary for her to have her evaluation to start her boot-camp regimen. As most of you remember, she recently lost her NG tube, unfortunately, she is not eating enough and it looks like it will be going back in Friday. Wednesday her bilirubin and enzyme levels were back up and her protein levels were down which is a sign that she is not eating enough. She was also dehydrated and required a bolus of fluids before we could go home. Tricia, the nurse practitioner, told her if she didn’t eat dinner or breakfast she would be getting it back in on Thursday. She did eat dinner so hopefully she’ll eat breakfast too. Because she has control over very few things, she has chosen food as her battleground. This only makes getting her to eat or drink more difficult. If she gets below 17.5 kg it goes in for sure and today she was at 17.8 kg. Good thing we didn’t donate the formula and bags or take back the pump, huh? Other than that she is very active, playing, talking up a storm, walking better, antagonizing her brother and very, very happy. She looks great and her spirits are the best they’ve been since Thanksgiving. It’s hard to believe we almost lost her at Christmas.

Well, she’s doing better but apparently I’m falling apart. I finally was able to get to the doctor today (Wednesday) and I have a nasty lung infection but not pneumonia. I am on my own cocktail of meds now and hopefully will be better soon. That muscle I thought I pulled in my side the other night? Turns out I had a rather large, nasty ovarian cyst that ruptured while I was coughing. Nice. I had an ultrasound today (boy, there is a funny story to go with that one-you’ll have to ask me when you see me) and it was obvious to the radiologist what happened but I had to wait another 5 hours to get the info from my doctor. She told me not to do any heavy lifting and to take it easy-yeah right! Of course, I’ve been carrying Kennedy on that side since it happened because I thought it was just a pulled muscle. She said it would take a while to heal but should be fine. I guess it is always something. I figure with all the crap I’ve been through, it should be my turn to win the Powerball this week.

The way things have gone this week, Keith should be very afraid for his appointment on Friday. It probably won’t start out so great since I left a list of things for the doctor to talk with him about. Hee Hee 🙂 Well, you all know how he is…he’ll go in there and say that he’s “fine.â€? He’s just cruising along-being Keith-and is looking forward to warmer, dryer weather for working in.

Mom and Dad are doing great-planning their trip to Idaho in April for Grandma Marty. We all wish we could go but know that the Drs. will never release Kennedy to travel that far. Please pray for my mom as she gets ready to have carpel tunnel surgery next week and again in March. Pray for total and complete healing. My sister also has an upcoming surgery so please take time to pray for her as she heals.

Continued prayers for Oliver as his family makes some very tough choices during their difficult time and pray for Maggie and Nikolette’s families as they learn to move forward without their girls. Prayer for children finished with chemo who are now dealing with long term effects and/or lingering problems and those who are just learning to move forward without chemo…Warren, Rebekah and Joshua. Prayer for kids who are still fighting…there are many.

Many thanks to all who have taken the time to give to our family in so many ways-we are continually blessed by your love and prayers. God is so good and we should praise his holy name with all of our heart, mind and spirit. Praying many blessings for all of you.

Diseases of the soul are more dangerous and more numerous than those of the body. ~Cicero

I must give credit where credit is due…all of my quotes come from a wonderful site called “The Quote Garden” at www.quotegarden.com; check them out!

Love-Hope-Faith,
Mel

Watch for another raffle fundraiser with incredible prizes donated to Courage4Kennedy by Timberline lodge. If you love the snow and love to ski these are definitely for you!!! T-shirt proofs and bracelets proofs have been made and sent so look for these soon and don’t forget the upcoming Indoor Garage Sale. It is not too late to donate or help out…click on Indoor Garage Sale to find out how.