Courage for Kennedy – Journal


November 10, 2006

Category: Family,Fundraisers,General,Gratitude,Treatment – Melenie 1:43 pm

Boy, as usual there is so much to talk about! Let me start with the fundraisers…we had such a great time at the Spaghetti Feed and raised over $1700 to help cover Kennedy’s expenses! There were some wonderful items to bid on and we also gave away a DVD player and boombox with remote. Everyone had a blast and we greatly appreciated those who spent the evening with us.

The Holiday Shopping Extravaganza was also a success although we are still waiting for the final count. As with most bazaars, it really picked up late in the day. It was wonderful to visit with everyone and Kennedy has so much fun just playing with the other kids. I will have more info regarding funds raised soon.

This will be all for the fundraisers for this year but we plan to start up again in February with a Pizza Day at Papa’s Pizza. Check back for more fun events coming up…

Kennedy is doing well. She just had a lumbar puncture last week and it must be clear of leukemia because no called to tell us otherwise 🙂 Her counts were high for someone on chemo, so they raised her meds to 100% and we are going back next week. We’ll see how things are…everyone is surprised that her bone marrow seems to be recovering so quickly and efficiently. Not necessarily a good sign for a leukemia patient. I mean, you want it to be able to produce healthy cells, but when they are getting chemo and their bone marrow is trotting along as if nothing is going on, that can be concerning. We’ll see…perhaps she’ll have to take a higher than recommended dose. After all, Kennedy has yet to do anything by the book 🙂

We finished up her testing with Dr. Hoeveler, the neuropsychologist, and even without the final report, she was able to confirm that the changes we have seen in Kennedy are really there. She has very slow processing speed, short term memory loss and attention deficit issues. Many tests would not be tolerated by Kennedy and so she spent time testing more specific areas that she recognized were a problem. I also had the opportunity to attend a conference at Doernbecher Children’s Hospital in Portland and it appears that with intrathecal chemo (which Kennedy is still getting and got a lot of over the course of a year) and total cranial radiation, there is damage to the white matter portion of her brain. The grey area is where all of the thinking goes on and the white area is where the pathways are. So, she knows what she wants, needs to do, etc. but making that happen is the hard part. That explains a lot of things actually! While they can not restore the “super highways” that have pot holes, weak pilings, cracks and sometimes missing pieces all together, they can be bypassed. She has a connection with music in regards to memory and we have discovered several programs that can teach children new (more concious) ways of doing things we all take for granted (i.e. getting messages out to body parts to work, tapping in to memory, redirecting, etc.) We are waiting for the final report and researching ideas. We are very fortunate that the mover and shaker in the world of neuropsychology and the man at the forefront of damage in oncology kids is here in Portland. Please pray for clear direction in what would be best for Kennedy. All of this has given me much needed in sight in to teaching Kennedy (i.e. homeschooling) and I have already seen improvement by using a different approach. While I want it to not be overwhelming or frustrating for Kennedy, I also know that if my expectations are too low that is all she will be willing to achieve. As you can imagine, much of this is heartbreaking as she is such an intellegent child, she just can’t get that out. To go back and see where she was prior to treatment to now is difficult (she was signing fluently by 18 months, taught herself to ride a bike before she was 2, and doing basic phonics and math before she was 4). Now, I know what you all are thinking (and I have already heard it) that I should be so grateful she is here and I absolutely am, but it doesn’t mean that I am rejoicing about her struggles. She is very intellegent, now we just have to find out how she can express that.

Kennedy also continues to make progress in physical therapy. She is making steady progress and we see improvement in areas such as walking, balance and coordination. While she still has a lot of work ahead, she can run and jump and dance. I was talking to a friend the other day and it occured to me that less than a year ago, Kennedy could barely sit unsupported and could crawl only a few feet. Even 6 months ago her walk was stiff legged and was really her rocking back and forth, so she has made tremendous progress!

We had her occupational therapy evaluation and finally (we have been waiting a year in December) it looks like Kennedy will be receiving services. Some results were what we expected and some were pleasantly shocking! In her visual-motor integration (copying shapes) she scored at 5 years 6 months…not bad! For visual perception (finding shapes and designs that are exactly the same from ones that are similar) she scored at 8 years! That was fantastic! When it came to motor coordination, such as tracing and staying in the lines while writing, she scored as a 4 year old. This was using skills such as fine motor control. This made me upset, not at Kennedy, but because 6 months ago she was only a year behind but because of insurance problems (we HATE Primary PhysiciansCare) and the fact that Emanuel has far more kids needing OT than therapists, Kennedy has fallen further behind in this area and now will have to work much harder to catch up. After much prayer, we have decided to take her to Tualatin to Meridian Park for OT so she can receive services sooner (within the next couple of weeks) than sit on the waiting list at Emanuel for God knows how long and possibly not get services before her evaluation has expired. So, more commuting…that is our life! Of course, there is much more in the report (decreased upper body strength, difficulty completing gross motor coordination tasks, loss of balance, difficulty with motor control, difficulty learning new motor tasks, required extra time to process directions and instructions, etc.) as you can see, most felt rather defeating, we are thrilled that she will be able to FINALLY get the help she needs. The therapist also sent home many fun ideas to get started on that will help Kennedy. It’s tough to read the report because while we noticed that she struggled, now we know how much.

So, she is doing well with school though and making steady progress. She is not satisfied to learn her social studies and science so I have modified her brother’s stuff so they can be studying the same thing. With repetition, she seems to be able to comprehend and retain at least half the information we give her. We also have a friend who teaches at Austin’s old school who we’re working out details with for her to work with Kennedy. The neuropsych doctor said Kennedy definitely qualifies for special education and I am thankful she is not in school because with her intellegence, it could be very defeating when she realized what that meant. Instead, it means I can get help with homeschooling from the district (I can get help anyway, but specific to Kenne’s needs). Now, I know that families with children who are in special education classes may very well be upset by my comments, but I am accountable for making the best choices for Kennedy and at this time, I don’t think public school special education is the best choice for her.

Now, Austin is also doing well and helps his sister with school. He is such a sponge and even when I spend 4 or more hours a day with them (him especially) he still wants more! He is almost done with soccer and is interested in learning how to snowboard, so with safety points at Keith’s work, we are able to get him a board and bindings. He already has the clothes he needs and a helmet so he will probably use his rodeo earnings to buy his boots. You know, I was worried about his socialization but with homeschool friends, soccer and other actitivites, he is more social now than before! Kennedy gets plenty of socialization too from ballet, friends, and activities and because she has no idea what school would be like, loves being home and playing with kids of all ages. Amazingly, they get along very well for the amount of time they spend together and the fact that we live so far out in the country.

Keith and I are just trucking along. Keith and the kids have had a nasty round with 2 colds already this year but seem to be on the mend. He just keeps working (although hates working out in the pouring rain) and getting things done here. He would love to have some dry days to finish the fence and put the barn up. Makes it hard to set posts in concrete when it is so dang wet outside. He did get 25 trees downed though and that cleaned up. I think he just loved playing on the equipment! I spend all my time taking care of the above for the kids. It seems we are never home. I’m hoping to work out something so I can finish school (I only need 7 classes to graduate) but I don’t see me going back in the next few months. I just don’t have 15 hours to spend away from home. It’s not even the homework that worries me, it is the time away. We’re also in the process of organizing a non-profit. With the help of my family and friend, Rhonda, we are planning to meet needs that are just being missed in our area. So that is exciting and I can’t wait to be able to help other families like us.

With the holidays upon us, I am dealing with a wide range of emotions. This time last year, Kennedy had finished her “planned” hospital stays and things appeared to be moving in the right direction. Sure, we still had some nasty treatment coming up (including radiation) but overall, we thought we had conqured the worst of it. But then Christmas came and all the complications we had including Kennedy with one hand in Jesus’s. I am so excited for Christmas (it feels like we missed it last year) but am also very apprehensive. I’ve been dealing with a lot of anxiety and uncertainty anyway, but this just adds fuel to my fire. Because Kennedy is doing so good (including her counts just skyrocketing) I’m terrified that we are on the brink of disaster. I know that to those families who have not walked this it seems very silly and that I should be happy she is doing so well, but I can’t help but be cautiously optomistic. I know that her chances of relapse are much higher than that of the average ALL kid (40% as opposed to 15% or less), and I know that we have done everything shy of a bone marrow transplant, but when it is your child it is either she is 100% cured or 0%. You can’t cure her 60%. I hope and pray that I am wrong on this one. But I can’t help but plan for if she does. And what is the plan? It depends on which doctor you talk to. What is my plan? I would like to go to St. Jude’s if we decided to start treatment over again-especially with her liver not functioning normally. Now, my plan is not to go to transplant (she has a higher than normal chance of developing VOD again which would be fatal), but if that is the best thing, we would either go to Minneapolis or Duke. Why am I telling you all of this when she is doing so well? Because I can’t help but worry about it everyday. We have known several kids who relapsed recently and what happend with Gage really shook us up. And with the holidays fast approaching and the fact that Kennedy can’t seem to follow the plan 🙂 I just need to work through my mind the worst possible case scenario. Crazy, I know and torturing too.

Ok, enough about me…Kennedy’s hair is growing back and falling out so most of the time she has this great faux hawk thing going on with patches of missing hair. Lovely, I know 🙂 She does not seem to be bothered by it, which is great, but I have resigned myself to the idea that her hair will not be normal until she is completely off chemo next fall.

And because I am so emotional lately anyway, please use the links here to find out about the Harvest of Hope and the Nutcracker production.

Continue to pray for us and so many other families…

Hope-Faith-Courage-Love,
Mel

October 12, 2006

HAPPY 6TH BIRTHDAY, KENNEDY!!!

Category: General,Gratitude – Melenie 9:20 am

KENNEDY IS 6 YEARS OLD TODAY!!!

Our precious girl turned 6 at 9:18 this morning. Wow! And the best news? This year she is running, playing, laughing and she is not hooked up to any chemo! As many of you remember, last year she was inpatient in the dreaded 3530 getting high dose Methotrexate and recovering from treatment. Not today, my friends! No, she is enjoying her new DVD The Little Mermaid, eating everything in sight (no tube feeds for this girl!), looking forward to having her favorite Hitchin’ Post pizza and can’t wait for her party on Sunday afternoon! Does life get any better than this?

NO WAY!! Today is a day of celebration! Today is a day of rejoicing! Today is a day to praise our all mighty God who is the giver of life and protector! Life is such an amazing gift and I have to use one of my most favorite quotes ever! As Auntie Mame would say, “Life is a banquet and most poor suckers are starving to death!!!” So, today, in honor of Kennedy and the gift of life that is precious beyond words…go out and enjoy the banquet! Do something new! Choose a new path! Grab an adventure! Be kind to others! Pay for that person behind you at the drive thru! Sign up for that language class! Offer a loving word to someone who really needs it…maybe yourself! Remember…do not waste a minute…we can NEVER get back time…so take the kids to the park or share a candlelight dinner with someone you love. No matter what you do today…live.

Please take a moment to send birthday wishes to Kennedy either through the comments or her guestbook. Today is a VERY special day!

Love-Hope-Faith-Courage,
Mel

September 14, 2006

Where, Oh Where, Has the Duval Family Gone? Oh, Where, Oh Where, Can They Be?

Category: Family,Fundraisers,General,Gratitude,Treatment – Melenie 9:14 pm

I’m certain that many of you think we have fallen in to the deep abyss, and maybe we have, but it is the abyss of Long Term Maintenance and we LIKE it! No news has certainly been good news for us and it really is a matter of just being very busy.

Kennedy was seeing the oncologist once a week to check her counts as they had been fluctuating but with her meds at 50% they seem to be holding steady in the “good” range. I agree with them when they say it is better to give “some” consistently than 1 week on and 1 week off of chemo. She is doing so well now holding her own, that she does not have to return to the clinic until her next dose of chemo and monthly IV antibiotics are due on October 4th! Oh, what will we do with all of the free time? Hmm…how about getting back to the business of life? She also had her first maintenance lumbar puncture and I was far more nervous about it than she was! She just cruised in there like it was no big deal and by that afternoon was running around like a monkey. Who would have ever guessed that spinal taps would become so routine! She is doing well and has the most beautiful blond hair growing back in! And just like she had hoped, it is very similar to her “pre-cancer” hair only it is much thicker! I am so jealous!

Austin has kept us on our toes too! We had back to back rodeos all of August and he did really well! In fact, one weekend, he made more than all other 7 rodeos combined! He has also started soccer so now our time is filled up taking him to practice and games. It is so good for him to have something that is all his and does not include Kennedy. For so much of the last year, he has had to deal with all of her needs coming first and now he gets to have his time and he LOVES it. We are really proud of all that he has accomplished this year and we are looking forward to some down time this winter for him to rest. He has been active in sports continuously since April. No wonder he eats so many carbs and stays so thin. We really are trying to put some weight on him but with growing and sports we just don’t stand a chance.

I’m sure the question on everyone’s mind is how am I liking school? Well, I wouldn’t know because I extended my leave of absence. Kennedy still has her clinic appointments but we have also added physical therapy and will be adding occupational, and hopefully, speech therapy. In addition, we are discovering that Kennedy is already facing some long term effects of intrathecal chemo and radiation such as short term memory loss and attention deficit issues. I thought perhaps it was just me and maybe I was blowing things out of proportion but her physical therapist even notices these changes from just 6 months ago. We knew that her liklihood of developing neurological complications was greater than most but we did not expect to see them occur so soon. It means lots of repetition, 1 step instructions, reminders and redirection. So we have a neuropsych exam coming up on Tuesday and will be anxiously awaiting the results. She also had an eye exam, as some of you know, she wore glasses prior to her diagnosis and her vision has improved so she no longer needs to wear corrective lenses! She was thrilled. We also had the opportunity to set a base line for her eyes as radiation will cause future complications. As part of her cranial radiation, the backs of her eye sockets and eyes were targeted putting her at risk for cataracts as a teenager along with other vision issues. Dr. Aaby told us for now she looks good and we don’t have to come back for another year. That was good news, too!

Kennedy is back in ballet! She started this past Tuesday and was able to step right back in where she left off! Her class has 3 other dancers ranging in age from 5-7 years and all at the same ability. Her ballet teacher did not know until after the first class that Kennedy has leukemia and was very impressed at how well she did. It was very emotional for me as this is the 1st time in over a year that she has been just like all the other kids. There was absolutely nothing that made her different. She danced the same, had beautiful hair just like them, was healthy, had red cheeks after dancing, giggled and laughed and played and she was just another little girl in a pink leotard and tights. In fact, with the exception of her cousin, I think this was the first time she played with other girls her age. It was just awesome! She will be auditioning for a part in this year’s Nutcracker and I will be sure and have more info regarding that! Could it be possible that we will be like all the other families again? Kennedy looks so great now that it is hard to imagine it has only been a short time since she was so sick. So, what will I do about school? That is a very good question and one I do not have an answer for at this time.

In addition to the above, we are homeschooling Austin and Kennedy this year. You read that right! For years we have talked about embarking on this journey and with His blessing have finally stepped out in faith. We start Monday so wish me luck! We had a plan but it was not God’s plan and now we seem to be in alignment with His will making everything a lot smoother. Austin is ready to roll and can’t wait to head out on this new adventure…Kennedy is excited too but we are moving a little slower and right at her pace. We are anxious to meet new families in the area and have heard about many fun homeschool activities so there will be more news there.

Wow! Could my cup runneth over any more? Well, in addition to all of this so far, we also have some great fundraisers coming up. We have been able to get Kennedy’s medical bills down to around $90,000 and they may come down even more. That is a huge improvement and all of your help has been greatly appreciated. On Saturday, October 7th we are having a Spaghetti Feed and Silent Auction. Please check out the link to the right for more information. In November, we are having a shopping day and more information will be sent about that, too! We are really excited. On Tuesday, September 12th we had another Pizza Party at Papa’s Pizza in Portland (say that one 5 times fast 🙂 and it went well. I don’t have the final numbers yet but if you missed this one, no worries, there will be another one in the spring. Thank you everyone for all that you have done, not just in providing funds for her medical and care expenses but in all the other things you do. I could not do this without your support. Thanks to Becky for renewing this site and helping me keep it together. Now, if only I would take some time to update, huh?

Wow! Another novel…guess it’s time to hit the hay!

Faith-Hope-Courage-Love

Mel

August 2, 2006

Two steps forward, one step back (but lots of fun along the way :)

Category: Fundraisers,Gratitude,Treatment – Melenie 11:30 pm

Sigh…I sure hate it when I wait so long to update. I just keep putting it off because I know that it will take a while to catch it all up and this appears to only make things worse not better. We have been busy and I have a lot going on with me that make updating the site seem overwhelming, but since I can’t seem to get much sleep…it seems like a good time.

After being taken off chemo for a week, Kennedy’s counts recovered and she was started at 50% of her recommended dose. We had to return in a week for another counts check and with hopes of getting her back to 100%. We did have a blast that week and we even went to the zoo with Auntie Caryn and the girls! That was so fun. We hadn’t been there since the summer before Kennedy was diagnosed and Amber was a baby. Boy, things have changed. Kennedy and Emily weren’t afraid of the goats, and therefore did not need Austin to protect them, and Amber was not a baby but a very happy and curious toddler. She was wide eyed the whole time! We were there when it opened in the cool morning and were able to leave before it got super hot-and before traffic on the west side got just crazy! The kids were exhausted but really loved doing “normal” kid stuff. Hmmm…maybe we’ll get a family pass for the kids for Christmas 🙂 Then that weekend, Austin rode at Spirit Mountain in the horrific heat. He spent a lot of his waiting time helping out in the arena and loved it. We made sure he had his hat and lots of cold water and made him sit in the shade for the hour before his ride. He covered his steer but it was so hot there was little buck in the bull which made for a lower score. He didn’t care and clearing the 6 seconds gave him more confidence for this weekend in Newport where he will ride both a steer and bareback.

So, it was back to the clinic on Tuesday to meet with Dr. Olson for counts check. And they bottomed out again. Well, her counts were cruddy, although not bad, but her ANC was shot (320). I just kept thinking that I had let her ride horses on Saturday-even without a saddle-and I hoped she hadn’t gotten any “germs.” She was fine and seemed very happy to be off chemo for another week. Mom, however, was concerned! I asked Dr. Olson if she was worried about Kennedy being off chemo and she said that leukemia cells are far more fragile and if her marrow can’t come around to producing healthy cells she was confident that it was nothing to worry about. There is a lot of research going on to see if it is better to give more and have them bottom out, or just give lower doses more consistently. She even said that while they do not really want kids off chemo during maintenance, a low ANC was better than a high one. A low count indicates that they are sufficiently suppressing the bone marrow while high counts could mean resiliancy to the chemo. We still must continue with the Lactulose as Kennedy’s liver counts only stay close to normal with the higher dose of supportive meds; without it we are asking for trouble. More about future liver issues in another entry. Oh, Dr. O also decided to test Kennedy to see if she has the necessary enzymes to process the 6MP or if her body metabolizes it slower and we can give her a lesser dose and have the same results. We should know the answer to that question next week. I also asked her, as it has been the hot discussion on my ALL-Kids list, whether or not she would be considered cured at 5 years off treatment and have ths same risk as someone who had never had leukemia. She said that we like to think that BUT our oldest survivors are less than 40 years ot and they often have many long term complications or develop secondary cancers because of the overly intensive treatment they had… there are also very few of them. It wasn’t until about15 years ago that they were really getting good at curing leukemia so those “kids” are our baseline and some treatments have changed even since then. They are only making predictions-guesses if you will. The fact that there are more survivors is very encouraging and many go on to have little physical complications. There are however, those that had more intesive chemo, radiation and such who developed/have other issues. There are no guarantees. Now, as my mom said, there are never any guarantees about anything but that is not reassuring. We discussed having a neurocognitive exam for Kennedy to give us a baseline but also because she is having some short term memory issues. Sometimes she does fantastic and seems right on it and other times she will just keep asking the same questions and gets confused and angry with us. Dr. O said now was a good time to jump on it before she has anymore IT therapy. We can already see that she needs more repetition (and not just because she is 5 as we are seeing differences from a year ago) but also one step instructions as opposed to 3 steps-she just won’t remember what we said. I called today and was able to get her in on the 12th of September. There are benefits to being in treatment-they told us for non-oncology kids the wait is 6 months! This will at least give us a starting point-had I been clear headed in the early days I would have demanded one much sooner.

I became overly concerned about this after a discussion with other high risk leukemia kids whose parents chose more IT therapy as opposed to radiation to reduce the number of cognitive issues especially in girls and children under 6. Now, IT has it’s own complications (as you can imagine when you are doing routine spinal taps and injecting chemo in to the spinal fluid) and has proven to cause many of the same problems as radiation, but not generally things such as brain tumors and cataracts that have been complications of rt. When I asked Dr. O about that yesterday, she said that there is nothing out there that proves more IT is better or more effective than radiation. Especially for Kennedy who has had other complications, more IT would not necessarily be our best choice and was really not a viable option. As I have said before, Kennedy really is only going to get one chance. Of course, if she were to relapse we would NOT give up hope without trying another round but we understand that we are taking a very big risk of losing Kennedy to the many complications that would likely occur with another round of induction and intensive chemo or a bone marrow transplant. So, no regrets. I will NOT second guess our decisions regarding treatment-we have made the VERY BEST choices for Kennedy with the available information. I would rather deal with a life time of long term issues than have a life time without her. We just want to know where we stand and continue to monitor it so that she will have the best life possible, full of health and happiness!

Ok, more of that later, I promise. So, last weekend we went to the incredible community of Myrtle Point, Oregon for the Coos County Fair and Rodeo. Kennedy was chosen as their honorary court queen and had a blast fulfilling her duties! Many thanks to Coos County Fair and Rodeo and their court (Queen Alyssa, Princess Rachelle and Princess Jennifer) and their families who did so much to make us feel welcome and really pampered us! Kennedy rode an adorable pony (she still calls “Buffy” the dalmation pony 🙂 with a gorgeous spray of red flowers and a shiny red tiara in the local parade. She had been working really hard on her princess wave and she was ready! She delighted the crowd with her beaming smile and just radiated sunshine. We were also interviewed by the local news crew (Coos Bay/Roseburg/Eugene) but she wouldn’t say a word! It was the first time we have talked to the media and we were really caught off guard. As a rhetoric and media studies major, I was leary about allowing reporters to frame us as the “poor cancer family.” If they are going to tell her story, I want it to be a story of hope and faith…the story of a wonderful girl who is also a dancer, artist, animal lover, princess, little sister, preschooler, etc…not just a cancer kid. I hadn’t expected them to be there and had no response prepared. I do hope that if you had the opportunity to see it, that I did okay 🙂 Later, we fought her to take a nap so she would be ready for her grand entrance at that night’s rodeo and despite being cold, she looked fantastic! She was escorted by the court as they spoiled her rotten! So many thanks to everyone who made this all possible and thanks to the Myrtle Creek Motel for putting us up for the night and the Fortune family for taking care of our Bailey girl for the night. It was also a wonderful weekend for me as I finally had the opportunity to meet Patti! She attended the Boo Boogie Bash last October and brought Kennedy’s story to Coos County. Her daughter, Lupe, is the dairy princess and adorable! It was so great to finally meet you! It was so fun and we made some wonderful friends. We just can’t wait to see them again in September and we really hope to have them up to our neck of the woods soon.

On our way back, Keith and I decided to check out the Wildlife Safari. I was there when I was about Kennedy’s age and really didn’t remember too much about it. It was fun and it was neat to get so close to the animals. Pretty spendy though so we took lots of pictures to scrapbook with and the kids said they could wait to go again when they are grownup. It was just a lot of driving through with most of the animals in the shade away from the road. It’s a great thing to do if you are in town but not a repeat event like the Oregon Zoo.

Well, this Tuesday Kennedy had another counts check and as expected she recovered and is back on 50%. She is “scheduled” for an LP w/methotrexate and Vincristine next week but I won’t be surprised if she bottoms out again. She also has to get her monthly antibiotic, Pentamadine, so it will be a long day regardless. We were able to see Dr. O again and this time I had a few more questions. I had wondered what percentage of Kennedy’s bone marrow had been leukemia blasts when she was diagnosed. I, of course, hadn’t thought to ask at the time just because it wasn’t a high priority. Turns out it was 97% leukemia. Whoa. That is a ton! I then asked if it would have made a difference had we brought her in sooner (would she have been standard risk as opposed to high risk)…the answer was maybe. Her biggest concern with that would have been that Kennedy would have been under treated and probably would have relapsed…much worse. She was showing signs that something was different in the couple of weeks leading up to diagnosis, but nothing that would have even warranted a doctor’s visit. She did stress that had we waited even a few days, it could have had a very negative impact on the outcome for her. We also discussed Kennedy’s vision (she wore glasses prior to diagnosis but hasn’t since) and because of her cranial radiation to the optic area, she recommended we see a pediatric specialist who routinely seens children with brain tumors or leukemia…in NW Portland, of course! We see that dr. on the 5th of September. Kennedy also has 1 big cavity and 1 small one so we are working to get her into the dentists office to take care of that. They are just wonderful and are going to do everything to accomodate Kennedy’s medical needs. We’ll have to fit that in soon. We are also trying to get her back on schedule with physical and occupational therapy. Unfortunately, due to insurance problems, her OT evaluation has expired and we need to get scheduled for another one. We waited 3 months for the last one! Ugh! Did I also mention that I have to return to school in a few weeks? And, I have to go full time? I could just scream!!! No wonder I’m not sleeping! All the anxiety about caring for Kennedy’s needs and being gone so much again! Now, don’t get me wrong…she is doing well…we are just starting to deal with the complications of treatment and I do realize it could be worse, but I still have a hard time watching kids breeze through treatment and moving on while we are living with the prospect of a life time. They told us this would just be a bump in the road-they lied. It is not a bump…it looks like a mountain. I am grateful to have Kennedy and cherish everyday I have with my family but I wish that we could just finish up and move on as if life is normal. I really don’t want to offend the families that are doing so well and I don’t want to minimize the stresses you are dealing with off treatment, it just doesn’t seem fair. Life is not fair and I know that we are probably some where in the middle as far as difficulty but it sucks!

When our children are born we have hopes and dreams for their life. We invision a wonderful future and while we know that it will contain disappointments and heartaches we do NOT ever expect them to involve cancer. I guess I’m letting go of the life I had projected for her and instead am moving on to accepting that the picture could be a little different. Now, she can certainly go on and do all of the same things and experiences I had hoped for her…just with a different perspective…a different outlook…who knows…maybe a better, brighter, more appreciative one. I think that when you have something so life changing happen…so unexpected…you have an appreciation you never could have had before. We have a new love for life…a new passion…a new sense of fulfillment. No longer are we consumed with getting ahead and feeling as if we have to have more but the sense that all of this is an amazing gift…a gift to be cherished. It is my desire to live each day bringing quality to my life and lives around me. Ok, today while I was lying around in my pjs and wallowing in self-pity I was only radiating yuck but I will not stay there. Yes, I am overwhelmed by responsiblity…it doesn’t help that I had to pay bills yesterday either…but my life is rich and I am continually blessed by the people who are in it and by the experience of it. Speaking of…I am making plans for after graduation; plans inspired by prayer and conversation with God to have the chance to help bring quality of life to those around me. I am so excited but am waiting on His perfect timing to discuss them and get things moving with them.

Ok…fundraisers! They are coming up! MARK YOUR CALENDARS!!!

Tuesday, September 12th-Papa’s Pizza “Eat for Courage” event-ALL DAY!
Saturday, October 7th-Spaghetti Feed and Silent Auction-with really incredible items to bid on!
Saturday, October 21st-Shopping Day! Get a head start on the Christmas season!
TBA Annual Carwash!
TBA Texas Hold’em Tournament and Silent Auction! This is the one everybody has been waiting for!
TBA BBQ Raffle-Now is your chance to own YOUR state of the art BBQ!

I’m sure I have far more to say but I am exhausted. Please pray for Skyler Jones family as they deal with the loss of their precious girl. Also continued prayer for Joshua Brenneman’s family who is dealing with some very heavy decisions regarding complications from treatment. And for Kaitlin’s family as they too are dealing with some issues right now that would worry any cancer parent. And as always, pray for the many children dealing with cancer, whether on treatment or not, and their families and especially those families that are moving forward without their precious babies.

Oh, how could I possibly forget! Please pray for Austin this Sunday afternoon as he will be riding both bareback and steer in Newport at the youth rodeo! As always, pray for protection and strength! I will let you know how that goes next week! Also, if anyone would like to have an opportunity to watch him ride this year, he will be riding at the Polk County Fair on Saturday, August 12th in Rickreall just east of Salem. See you there!

“The future is called “perhaps,” which is the only possible thing to call the future. And the only important thing is not to allow that to scare you. “ ~Tennessee Williams, Orpheus Descending, 1957

“A preoccupation with the future not only prevents us from seeing the present as it is but often prompts us to rearrange the past.” ~Eric Hoffer

Faith-Hope-Courage-Love,
Mel

July 13, 2006

What a Blast!

Category: Fundraisers,Gratitude – Melenie 11:21 pm

We had such an amazing time tonight at the Charlie Brown musical sponsored by Prayer For The Children. There is truly some amazing talent in that show! The music and singing were exceptional and every one of us loved it. They are characters we all grew up with and loved and the songs are fantastic. Snoopy was great and was just full of boundless energy. I do hope everyone gets a chance to catch the show this weekend before the cast returns to school. If you don’t, you will really be missing something!

Kennedy was able to come early and meet the cast and while she was excited all day, she was very shy when we arrived. They had this really huge chair for a prop that we hoped she would sit in but she had no interest before the show. Only about the time the show was about to start, then she wanted on stage! Isn’t that just like her? She eagerly went up during intermission to draw for the raffle and didn’t even mind that there was an audience 🙂 She loved the show and even began dancing when Snoopy was singing about his “Suppertime.” After the show, the cast met her again on stage and she was a lot more friendly. She gave Andrew a “Courage 4 Kennedy” t-shirt and handed out bracelets to the cast. They loved them and she took a lot of care in choosing just the right color for each person. They also signed a copy of the program for her and we joined them for cake at the “Opening Night” celebration downstairs. Several people came up to meet us and wish her well as she continues her battle. She left a very tired but very happy little girl.

The show was wonderful and children of all ages would find it very entertaining. I do hope you all get a chance to see this amusing production!

Hope-Courage-Faith-Love,
Mel

July 12, 2006

A Musical to Honor Kennedy! Come and Join Us!

Category: Fundraisers,Gratitude – Melenie 9:41 pm

“You’re a Good Man, Charlie Brown”

July 13-16, 2006
July 13th & 14th at 7:30pm
July 15th at 2:00 & 7:30pm; and the 16th at 3:00pm
Columbia Arts Center
$10

Information:
With music and lyrics by Clark Gesner, “You’re a Good Man, Charlie Brown�, originally opened on Broadway at Theatre 80 St. Marks on March 7, 1967 and ran for 1,597 performances. Based on the award-winning comic strip, “Peanuts�, by Charles M. Schulz, the show chronicles the daily struggles of down-and-out Charlie Brown and his friends as they attempt to make sense of the world around them.

Location:
Columbia Arts Center
400 West Evergreen Blvd., Vancouver, WA

Many, many thanks to Prayer for the Children for putting on a 3rd benefit fundraiser for Kennedy! To date, they have raised more than $2500 to help our family in covering Kennedy’s medical expenses. This weekend, they will be putting on a musical with an award winning cast. The Duval family will be attending opening night (Thursday) but the show runs through Sunday. It should just be incredible and even the youngest members of the audience are sure to have a wonderful time. Please see the attached flyer or go to their website at Prayer For The Children for more details and information about this wonderful non-profit. Feel free to pass this on to family and friends and we hope to see you there!

We would like to thank everyone who has supported us through this difficult year. It means everything to us and we could never take care of Kennedy without you. We continue to hold fundraisers to help cover the mounting costs of Kennedy treatment and thank those who have offered to hold events in her honor (we currently owe more than $380,000 in uncovered medical expenses and must provide separate insurance for Kennedy at the cost of $2500/year) . Over the last year, all of you helped us to raise approximately $35,000! Prayer for the Children is completely non-profit and holds events around the Northwest to benefit local children fighting cancer and other life threatening illnesses. We appreciate all the time, effort and love put in to this production.

Hope-Faith-Courage-Love,

The Duval Family

Come to an Outstanding show!!!

Incredible Talent 2 “Drammy� Award winners, 3 Bach Fest singers,
2 APU Actors….Quite frankly, some of the Best talent in the Area.

Lucas Welsh, Director – The young star of Portland. Having played many
lead roles in Oregon Children’s Theater, and NW Children’s Theater, he
is truly one of the most sought after young professionals in the Northwest.
In June, He won a “Drammy� for his role as “Horton� in “Seussical� the
musical, with NWCT. Bach Festival Singer, 2005.

Jameson Tabor (Charlie Brown) – Jameson is one of Portland’s top young
actors. He has held title roles in numerous shows at OCT, and NWCT. As
a young man, he has already won a “Drammy� Award for an incredible
performance at NWCT.

Mary Lucarelli (Lucy)- Mary is in the young professional’s program at
Oregon Children’s Theatre. She played Lucy with the company this past
spring, and received wonderful reviews. She is an exciting performer
filled with boundless energy.

James Sharinghousen (Snoopy)- James is an alumni of the OCT, Young
Professionals program. He has unbelievable dancing skills and experience.
He has choreographed many company shows, school shows, and
other reviews and productions. A thrilling performer.

Brian Svehaug (Linus)- An experienced performer, Brian was a Wickersham
Brother in NWCT’s “Seussical.� He was Gaston is Christian Youth
Theater’s “Beauty and the Beast.� This year, he won a trip to the OSAA
State Competition as a solo Baritone. He was also picked for the nationally
renowned Bach Fest in Eugene this summer.

Andrew Svehaug (Schroeder)- Andrew is a Vocal Performance major at
Azusa Pacific University in Los Angeles. He was most recently seen as
“Rolf� in APU’s “Sound of Music.� Andrew was also picked to sing in
Bach Fest in 2004.

Colleen Ballinger (Sally Brown)- Visiting the Northwest from Santa Barbara,
Colleen is a very talented actor. Having performed as “Maybel� in
Pirates of Penzance, “Cossette� in Les Miserables, and “Sally Brown�
once before, she is excited to be with us.

June 28, 2006

Loved Disneyland! Thank you so much Make A Wish!

Category: Family,Gratitude – Melenie 9:41 pm

While we are totally exhausted and need a vacation from our vacation, we had the most amazing time in Southern California! Many, many thanks to Make A Wish, Sheraton-Anaheim, Disneyland, Knotts Berry Farm, Alaska Airlines, Oregon Limo Service, Super Shuttle, Medieval Times and everyone else who made this possible for Kennedy. Her wish to meet the Disney Princesses definitely came true!

Things started out bumpy and some weird stuff happened but we just kept our smiles and laughed. Our limo was late because of crazy directions, our flight was delayed, I thought I broke my finger the 2nd day at Disney park, Keith lost his wallet (but it was recovered with everything in it), there was confusion about Kennedy’s dinner, there was a communication error between the staff at Knotts, the beach was a big disappointment, and we almost didn’t have a ride from the airport home…and through it all, we did what the Duval’s always do…we kept our spirits high, had a good laugh and enjoyed all the wonderful things that were going right!

Disneyland absolutely exceeded our expectations! It was fabulous! I felt just like a little kid and even gushed to Mickey Mouse that I had waited 33 years to finally hug him and have my picture taken! Everyone was wonderful and even when there was a mix up at Ariel’s Grotto, things were cleared up and we were taken care of. The park was immaculately clean and the staff was exceptional. We had the most amazing time. We saw the parade twice and the fireworks 4 times and each time it was as awesome as the first night. Kennedy loved the time she had with Sleeping Beauty (a private meet and greet in City Hall) and was in awe of all the characters. The kids got tons of autographs and I took over 800 pictures! It’s true!!! Kennedy’s favorite ride was the Haunted Mansion and the Dumbo ride. Austin’s was definitely Splash Mountain! He even talked Grandma in to riding it and later that evening I rode with him. I was scared to death! I just knew that I was going to fly out of the log! We never had to wait in line more than 5 minutes and were treated fabulously. The stores are amazing and expensive but we knew what souvenirs we wanted ahead of time so we stayed very close to our budget. All the characters were great and I was thrilled to have my picture taken with the evil queen from Snow White at the Villan’s Lair. I could gush and gush and would still not be able to do Disney any justice so as soon as I figure out the pictures (this week for sure) I will let them speak for themselves.

Knott’s Berry Farm was fun but after spending 2 days at Disney it was hard to really enjoy it. The kids loved Camp Snoopy and the best part was we were able to have a private meet and greet with Snoopy himself! Kennedy was even part of a musical show and got to dance and be spun on “Grandma’s Feather Bed.” We have lots of those pics too. Now, if all that wasn’t enough…we also had dinner at Medieval Times! WOW! That was just incredible and I highly recommend to everyone if you are in a city that has Medieval Times…you absolutely HAVE to go! It was 2 hours of the best food (and the kids loved that you ate with your hands!) and the entertainment was just awesome. We will definitely do that again regardless of price as it was worth every penny.

We spent Saturday at the beach. Let me just say that we are spoiled here in Oregon! I will never again take the Oregon coast for granted and let me just personally thank all the tree huggers out there who fight to keep our beaches so beautiful. We asked the hotel about where we could find a “quaint” coastal town to spend the day and they sent us to Laguna beach…if that is quaint, please do not take me to a popular hot spot! It was huge and crowded! We drove up the coast in hopes of finding a smaller, quieter town and ended up paying $10 to spend an hour or so at Huntington beach. Apparently most of the coast in California is privately owned or owned by the Parks Dept. who charge $10 for a day use pass! The beach was cloudy, cool and more crowded than Pacific City in 70 degree weather and perfect surfing. It was crowded and not even close to as clean as the Oregon beach. Now, before I offend anyone in California, please understand that this was my first experience on a coast other than Oregon and Washington. I’m sure many Californian’s LOVE their beach and would be quick to defend it…I would love to give them the opportunity to visit the Oregon coast and our many small coastal communities and see how peaceful the beach can be on a cool, misty afternoon with absolutely not another soul to see for miles. Our communities here are friendly, inexpensive, quiet and feel as if very little has changed in the last 50 years. I will now understand the treasure we have here.

The weather was incredible in California but I’m sure many of you Oregonians were enjoying the sun and warmth here too. We had the best time and extended our stay by 2 days. We spent Sunday in the Disney park taking in everything and revisiting the rides we loved. Grammie and Papa left around 5 pm to rest in their hotel but we just wanted to drink it all up and we didn’t leave until about 11:30pm. None of us wanted the time there to end. But, we were so glad to be headed home on Sunday. Kennedy was exhausted and slept from the moment the plane taxied down the runway until we arrived at our gate in Portland. I have to say that we truly live here in God’s country. Oregon is so beautiful and green and was such a welcome sight, especially from above. We had a whirlwind trip but are so glad to be in our own beds and back to a routine.

Ok, I would love to tell you the stories…about the Bug’s Life show, Grizzly River Run, almost breaking my finger, meeting Sleeping Beauty, etc…but I am exhausted.

Who knew last year that life could be so good now?

Faith-Hope-Courage,
Mel

June 14, 2006

No news is good news and other ramblings from a very busy family!

Category: Family,Gratitude,Treatment – Melenie 10:40 pm

I know, I know…I said I would be better and while I have been very busy, it is really no excuse to keep you all at the edge of your seat chewing your fingernails! I will give you a rundown of the lowdown with some details but because of the time, it won’t be as detailed as the majority of my posts 🙂

First let me say, that it is ALL GOOD news this round! Where should I start? I know…the top 10 things we have done this month!

1) Kennedy has been named an honored child for the annual Candlelighter’s Ride for a Child event! Less than 10 children are honored a year and Kennedy is excited to be one of them. Kennedy has 3 riders who raise awareness and funds for Candlelighters by sharing her story. We felt very privledged to meet with them on Sunday afternoon and all of us are excited to follow them as they train and fundraise through the summer. They will be riding in September with Cycle Oregon but will be busy over the next few months preparing for the event. We will celebrate with them at a banquet in October. If you would like more information or would be interested in donating to Kennedy’s team to support Candlelighters, please visit their website at www.4kidswithcancer.org.

2) Austin has taken up a new sport…rodeo! It’s true! He has actually rode bareback and bulls (okay, steer in his case)! His first rodeo was the 1st weekend in June and while he didn’t make it the full 6 seconds, he was VERY proud and ready to do it again. He had a few strained muscles in his neck but we bought a neck roll which will hopefully prevent that! I will be posting pictures soon! He also finished up baseball and was one of only two kids to hit a homerun this year. One of his teammate’s grandfather gave Austin a $5 gift certificate at Dairy Queen! What a surprise!

3) Kennedy officially started maintenance chemotherapy on her 1 year anniversary, May 9th! A process that normally takes 7-9 months took us exactly 12 but we know that we have done everything possible to kick cancer’s butt! May 9th was certainly a day to rejoice and praise God for all that He has given us!

4) Kennedy has new insurance! You read that right! After 6 months of fighting with PPC (by the way, if you have them for an insurance provider…run the other way as fast as you can!) we contacted our state and US reps, the BBB of North Carolina, the governor of Oregon, the Oregon Dept. of Consumer Affairs and many others, with their help we were able to get Kennedy insurance through the Oregon Medical Insurance Pool and Blue Cross/Blue Shield. We have a $500/deduct and an out of pocket of $1100/year. Fantastic! We were also advised that due to our extinuating circumstances we had the right to ask for retroactive enrollment back to December 2005. They are expected to deny the first time but we will continue to appeal. My only prayer is that Kennedy’s providers (not her oncology office!) can hold off sending our bills (now around 500K) to collection as we walk out this process. Some have been very demanding and we have used Kennedy’s fund to pay them with the hopes that we will get the money back when this is worked out. It is true that we have to pay separate premiums of $207/month in addition to what we pay for the rest of us to have coverage through PPC but we are able to use the money in her fund to cover this expense and keep her insured. We are thrilled to get her back in to PT and OT rehab as she needs it very much.

5) We MOVED! If you haven’t heard, we bought a house and property with my parents! We will be adding a second house this summer so everyone will have the space and privacy needed. We just love it and plan to get a horse soon for the kids with the hopes that they will continue their love of rodeo by adding more events! I have always wanted a horse so this fulfills many life long dreams for me to…hmmm…maybe mom should take up some event, huh? The property is absolutely beautiful and our house is just perfect for us. God’s timing is perfect! The price was much lower than what we had been looking at and the payments came in at just where we needed for everyone’s budget and amazingly…4 adults were able to agree!

6) Kennedy’s Make A Wish trip is almost here! She has been cleared for travel and things have come together. We leave next week for the trip of a lifetime. We will be spoiled completely by MAW and have absolutely nothing to pay for except our two extra nights and even then the hotel gave us an absurdly good deal…especially because it is peak season! Check back soon for pictures! We also had an incredible MAW Bon Voyage party. Many thanks to Joy and Wendy (her wish granters) for the pink balloons, pizza, strawberry pink cake and goodies wrapped in (what else?) pink paper! Thanks to Amy and Chuck (Kennedy’s Chemo pal) for coming and remember that Austin is SUPER too!

7) Kennedy is doing AWESOME in maintenance! Her counts are staying steady and exactly where they should be. Even her liver is functioning at or near the normal range (with meds of course) and is showing signs of healing! That is an answer to prayer! She is doing so well, that we are waiting 4 weeks before we have to return to the clinic! I’m not sure what we will do with ourselves!

8) Things are becoming “normal” again. No longer is cancer in our face 24/7, always staring at us…mocking us…we are not constantly thinking about it. We are filling our time up with the things we love and want to do and doing less of what we have to do. Who knew that even in treatment things could feel “normal” and the old routine could come back? It feels so good to be just a family again and not a “cancer” family all the time.

9) Kennedy is growing hair!!!! She has eyelashes and eyebrows coming in! Her head is fuzzy and soft instead of shiny and smooth! Dr. McGann told us that in a month we will hardly believe she was bald! She can’t wait!! It is very blond again (much to her delight) and we are just at the edge of our seats to see if it will be curly (her dad, brother, aunties, both papas, nana and many other relatives have curly or wavy hair) or straight like it was before (and like grammie and mama’s). She has big plans for her new hair and will be anxious to show it off!

10) Finally, we were able to attend the Rose Festival Grand Floral Parade!!!! The weather was perfect (a big surprise for those who have attended in the past) and even though Kennedy was covered in sunscreen…mom forgot and was slightly burnt.

It has been a fantastic month! Prayers? Definitely for all of the children still fighting cancer, those who have earned their angel wings and those still dealing with the effects of treatment. Prayer for Kennedy as she is making a new transition and working things out emotionally…prayer for us for wisdom and strength over the next few weeks while we find our new place. Prayer for our upcoming trip and prayer for upcoming fundraising.

You are all so incredibly wonderful and we know that we could never do any of this without His amazing strength and never ending grace and your continuous, loving support…it really does take a village.

Happiness is a form of courage. ~Holbrook Jackson

We tend to forget that happiness doesn’t come as a result of getting something we don’t have, but rather of recognizing and appreciating what we do have. ~Frederick Keonig

Don’t ever save anything for a special occasion. Being alive is the special occasion. ~Author Unknown

Oh, many congratulations to Lyndsee and Jeffrey on their upcoming wedding! You guys are so wonderful and we have been blessed by having you care for our family.

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