Courage for Kennedy – Journal


February 8, 2007

Counting Down until END OF TREATMENT!

Category: Fundraisers,General,Gratitude,Treatment – Melenie 9:40 pm

So, how close are we? We are exactly 6 months and 15 days from the end of treatment! WOW! August 23, 2007 is Kennedy’s official EOT date and we can not wait. She will be just ecstatic to give up her daily doses of meds as she still asks at least once a week if she really has to take them 🙂 . And you know what? She has survived her battle with leukemia almost 2 years. In 3 months, Kennedy will have her 2 year anniversary of her diagnosis. I have to say, that in those first few days, I could never imagine we would make it this far and yet here we stand so close to the end of the marathon. One of the oncologists once said to me that while many cancer battles are fast, hard sprints, leukemia was more like running a marathon. While it started out hard and fast and your chest is burning and your legs are aching and you wonder how on earth you’ll ever make it one more step let alone the end of the race, you come to the middle and hit your stride. Your body and mind adapt and soon you’re in the zone. Sure the race is long and there is no one to pass the next leg of the journey on to but you realize that you are in better shape than you thought and soon the end is in sight. And you know what, when you look back, it looks long and the hills were high but the scenery was just incredible and the other racers you met were phenomenal and helped to encourage you, as some were veteran athletes, and as you cross the finish line you realize that you were stronger than you ever thought possible. Now, does it mean that I would love another serving of crap sandwich? Hell NO! Does it mean that I am ready to tackle another race…sure…just give me a soft breeze and small hills 🙂 .

So, how is Kennedy doing? Very well actually! She is growing and eating like crazy. Her hair is coming back in and growing so fast she is already making plans to wear it in a bun for ballet. She told me the other day that it was almost long enough for a bun (it is about 1 inch long-hee hee). It is blond and soft and appears to be straight. I hope for her sake it is a little bit thicker than her hair was before. She had her back poke and everything is clear. They are keeping her at 100% dose for chemo and decreasing her lactulose as her liver is functioning very well. They may increase her chemo to 125% at her next visit if her ANC continues to be strong. She has a speech evaluation coming up and we are trying to schedule another hearing test. Cranial radiation basically targets everything from the eye sockets back to the base of the neck and as this includes her ears, we have to be sure that her hearing hasn’t been affected. Her speech is very nasally and not always clear so this will help to see if something is going on there. She also seems to have problems hearing and understanding us so we’ll see if hearing loss is contributing. She had a hearing test before radiation and showed slight hearing loss in one ear (possibly from one of her chemo drugs). She has plateaued in PT so we are taking a 12 week break. She has made very little progress since August. Well, we see progress but her coordination and balance are still that of a 4 year old. Amy said it is just like a toddler who is learning how to do so many things. They concentrate on one area at a time (large motor, fine motor and speech) and Kennedy had to re-learn to walk, run and jump and now she is concentrating on other skills she is behind in. We also received the final report from the neuropsych exam (finally!). Some things were very good and we were relieved to hear that they had not been damaged but some things were not so good and difficult. All of her cognitive (intelligence) abilites are in the normal range and intact! Yea! The MRI had showed no damage to these areas and we were happy to see that she is doing well. Much of Kennedy’s memory is also in the normal range and showing no ill effects from treatment. She does not show signs of either ADD or ADHD. The doctor did confirm that Kennedy does have issues related to fine motor skills and not just in her ability to control her hands but also in motorplanning (copying hand positions, drawings, gestures, etc.). Kennedy does very well with problem solving that is hands on or multisensory. However, she is weak in her abilities concerning auditory processing. This means that she struggles to understand what is said to her as we speak faster than she can process what we have said and it takes some time for her to form a verbal response when spoken to. Her signs of inattention are a result of becoming distracted because she literally loses us when we give too much information. She just can not keep up. She needs visual clues along with verbal to fully understand what is going on. So, according to the doctor, Kennedy’s weaknesses are as follows: verbal retrieval as well as verbal fluenency (what I explained above), phonological awareness, motor planning, very slow processing speed, difficulty with initiation of new tasks (I imagine from the above issue), and lack of sustained focus for verbal tasks. However, she does have her many strengths…the most important one being her intelligence. So, this means we do not explain too much at once, we repeat often, we do not give more than one direction at a time and we repeat, repeat, repeat and we make sure she hears and understands before we go on to the next thing. She is absolutely learning (evident every single day) it just takes repetition. Most of her recommendations were things we were already doing (as stated above) and some were for when she is much older. For instance, a note taking buddy as she will not be able to take notes as fast as she would need to, no timed tests, more time to listen, no scantrons, word banks and math formula banks on tests and help with organizational skills such as color coding and baskets for her stuff. Not too bad. All things I can live with. She is flying through her math book (she’s ahead of her brother in completing lessons) and is learning to read. Not to mention all the other things she picks up! We will repeat neuropsych exams about every 1 1/2 years through grade school and every 3 years after that. The full report was 10 pages long so hopefully I summarized things okay.

On a lighter note, we are going snowmobiling with Candlelighters this weekend and the kids are so excited. A couple of weeks ago we went to McMenamins Kennedy School to see Flushed Away (just Kennedy and I) and had a blast catching up with other families we know from treatment. I have to agree with Mark, it was like a reunion. It is wonderful to see so many kids doing so well. We are also looking forward to spending a few days at the coast in March and in April we will go the Children’s Cancer Association Caring Cabin for a long weekend. Speaking of CCA, they are working with 105.1 The Buzz to raise money to help local cancer children and their families. If you are in the Portland Metro Area, please tune in, but even if you are not you can log on to their website at www.1051thebuzz.com and hear some really amazing stories from local families who have been helped by their program. I don’t know what we would have done without our chemo pals (Amy and now, Lindsay). We had the best time with Lindsay last week when we visited her at work (Hillsboro Police Dept.) and even met Molly’s dad Officer Mike Thompson. We also loved the Music Rx program which brought fun instruments and even funner people to entertain Kennedy. Auntie surely can’t forget Karaoke night in the Starlight lounge of the hospital (YMCA…nuf said!)…and guess what, Auntie, there is a karaoke machine at the Caring Cabin! Woo Hoo!! The program also had therapists who came and played for Kennedy and sang for her in the ICU. I know it brought her tremendous comfort to hear music and familiar voices of people she knew and loved. CCA is just incredible so please check them out at www.childrenscancerassociation.com, and whether or not you like 105.1, tune in for this special event that goes on until 10am tomorrow morning…you will NOT be disappointed. Even $10 can make a difference in the life of a child with cancer.

In His hands,
Melenie

November 20, 2006

Harvest of Hope and the Nutcracker

Category: Fundraisers,Gratitude – Melenie 10:06 pm

First, I would like to share about the Harvest of Hope. As many of you know, Kennedy was very fortunate to be an honored child for Candlelighter’s Ride for a Child event this year. If that wasn’t amazing enough, she was blessed with an incredible gift by one of her riders…a handcrafted hope chest. As if the beautiful picture he took of the lone wild horse on the open prairie or “bird” who rode with him for the entire trip wasn’t enough…Larry purchased the highlight of the evening for our girl. I have saved a copy of this article to give to her when she is older so she will understand the significance of this one of a kind gift.

“PRESIDENTS CORNER

President’s Corner

Past President – Dick Hartung

Scenes of Hope
I witnessed the whole story unfold before my very eyes. I was there in some small way each step of the way. Yet the significance of each independent event was woven into a beautiful tapestry only after the last chapter fell into place. Though the characters are real, anyone reading this article could be that person. Perhaps you’ll see a piece of yourself somewhere in these lines.

It began in the spring as one of the many “to do’s� for the fall Harvest of Hope dinner auction. What creative piece of art could our families work on at camp that could be auctioned at the Harvest Hope? Typically the only oral auction piece of the evening, it represents the heart and soul of camp and the healing touch of collectively creating a thing of art and beauty. Each year, as one great idea gets utilized, it seems to get harder to land on that one “perfect project� for the next year.

She came up with the idea, of course. A mom, so gifted in many things, and certainly no stranger to the cares, concerns, and worries of caring for a child in need. This year we’d do a hope chest. We’d purchase a cedar chest kit and our children and families would paint each side with beautiful panoramas uniquely Oregon. Great idea, thought I, but I had no clue how we would pull that one off. Challenged when asked to draw a stickman, beautiful panoramas on a hope chest were beyond my comprehension.

I first laid eyes on it in late August, at camp. Though it was only in pieces, the top, sides, and front were no longer just slabs of wood. Etched into each surface were now the outlines of those very scenes – Timberline Lodge, Multnomah Falls, The City of Portland, and Haystack Rock. Using a burning tool and postcard images, she had etched a simple outline and patterned a color scheme that each painter, young and old, could use to create their masterpiece. The stickman master was amazed!

I was at camp the first day as children and adults contributed their Picasso skills to the project. I was a Haystack Rock contributor. Because there were no stickmen walking the beach, I gravitated to the easiest objects, two seagulls with relatively straight wings and definitely no feathers. I think I even stayed in the lines. There was much work left for the next day, but I could not stay. The next time I saw or even thought about the hope chest was on a Saturday in October, the evening of the Harvest of Hope.

The completed piece was a thing of beauty. It had been imagined by a loving mom and painted by a community of children and families. Dad had carefully fitted the pieces to form the chest, and sealed the wood to protect the surface. A dear friend, always ready to gift her time and talents to Candlelighters, had “seeded� the chest with a hand knitted comforter and warm little slippers. It was ready!

I saw the family arrive not long before dinner was to start. Their six year-old daughter Kennedy, one of our honored children, was attending as part of our Ride-For-A-Child (RFAC) awards. Precious in her pink outfit, she was shy and snuggling tight into dad’s arms. It was obvious she was not feeling well, and just as obvious that it had been a tough day for mom, dad and brother. I felt bad for the whole family, and worse when mom explained that Kennedy was ill because of her steroid treatments. I wasn’t sure they could stay for the evening, or even long enough for her to receive her award.

She made it to the awards ceremony though, and even managed a little smile as she was awarded a trophy from two of her riders. I was pleased, and hoped her family could now slip away to the comforts of home.

I lost track of Kennedy and her family and the evening passed quickly. The grand finale of the night was upon us, the auctioning of the hope chest. The bidding stalled at about $400, and I resigned myself that this thing of beauty and compassion would not fetch the millions I had envisioned. Then ……. a spark of life from one side of the room, then the other. Two RFAC riders, locked in mortal combat, were wagering toe to toe for that hope chest. $500, $600, $700….wow, I thought, this is more like it. $800, $900, $1000….how great for Candlelighters.

As the bid reached $1,100, all of us in the room finally grasped the significance of this last bid. Lifted high in the arms of her rider, the bid number was being held by none other than Kennedy! The bidding stopped, and it was clear now that Kennedy’s rider was purchasing the hope chest for her. Not only had she and her family made it through the evening, but she had been gifted the most precious item at the auction. Though I could not have imagined it months before, this chest filled with hope and lovingly crafted by so many was destined to be Kennedy’s.

There are many more “hopeful� endings to this story. All nine of our honored RFAC children were able to attend the Harvest of Hope and receive their Cycle Oregon champion trophies. In an incredible outpouring of generosity, the evening’s special appeal to financially support families in treatment raised over $21,000. RFAC announced a stunning $106,000 raised to support Candlelighter programs and services. In a touching display of caring, a guest wrote a check for $500 at the end of the evening to help pay for the hope chest that was gifted to Kennedy.

Where do you turn for hope? I see it, time and again, in the lives of our families and the incredible outpouring of care and support from the community of volunteers and donors that is Candlelighters. I believe, that along with Kennedy, you too can take a piece of her hope chest home with you.”

It was the most incredible night for us as Candlelighters has done so much for our family. Even more than having a mother who had walked in our shoes visit with us just days after Kennedy was diagnosed bearing much needed blankets and gifts for both our children. Even more than providing a fun filled afternoon at Roloff farms. Even more than offering classes about issues that we all face on this journey. Even more than getting our family tickets to events around town we could never afford. Even more than providing lunch and a shoulder to cry on in the playroom when we have spent too many days inpatient. Even more than offering financial assistance to ensure that Kennedy had the formula she desperately needed for nourishment when insurance refused to pay. Even more than helping us to provide Christmas for our children with gift cards to buy gifts, new coats and a full Christmas dinner. They always provide a hope that Kennedy will have a happy, healthy future. Candlelighters does so much for families whose children are fighting cancer. If you are thinking about contributing to a charitable organization this year (and in time for tax season) it is with all my heart that I highly recommend supporting them and all the amazing work they do. Just click on “Candlelighters” for a link to their website.

Now, I know you have all been anxiously awaiting information regarding tickets to the upcoming Nutcracker production…so here it is:

Canby Fine Arts Auditorium
Canby, Oregon
Saturday December 16, 2006
Matinee Performance 1:30 PM
Evening Performance 7:30 PM

Sunday December 17, 2006
Matinee Performance 2:30 PM

10th Year Anniversary!!!

Nutcracker Tickets

There are 5 ways to order tickets:

1. Drop Box in Studio: Fill out an order from and place it, along with payment, in an envelope. Put in the slot in the white drop box located near the entrance of the studio. Your tickets will be mailed or delivered to the studio. Please indicate your preferred method of delivery on the order form. Enclose a SASE or $2.00 P&H if you want your tickets mailed. Orders received later than December 4th and all unclaimed tickets at studio will be held in Will Call.

2. By Mail: Send your order form with payment to:

Nutcracker Tickets
P.O. Box 1924
Oregon City, OR 97045

Remember to indicate your preferred method of delivery and to enclose a SASE or $2.00 P&H if you want your tickets mailed to you. Orders received later than December 4th and all unclaimed tickets will be held in Will Call.

3. In Oregon City: Tickets will be available at The Oregon Book Company Store next to Fisherman’s Marine in the Oregon City Shopping Center on Hwy 99E at I-205. Please bring exact change in the form of check or cash.

4. In Canby: Tickets will be available at the customer service counter at Cutsforth’s Thriftway on 2nd Avenue in Canby, just off Hwy 99E. Payment methods are check or cash.

5. TicketsWest: Tickets available at all Safeway TicketsWest Ticket centers, charge by phone: Portland 503-224-TIXX, Seattle 206-632-TIXX, all other areas 1-800-992-TIXX or on the web at www.ticketswest.com. Tickets are subject to Convenience charge. This is the only choice if you want to use a credit card to pay for tickets. Internet and phone sales made after December 8th will be held in Will Call.

Make Checks Payable to: THE NUTCRACKER

Performance days/times: Saturday, December 16th at 1:30pm & 7:30pm
Sunday, December 17th at 2:30 pm.

Ticket Prices: $15.00 Adults
$10.00 Children (2-11) and Seniors (60+)

Program length: Approximately 2 hours and 10 minutes. (Includes a 20 minute intermission)

Doors open 30 minutes before the performances and there is no reserved seating.

Questions? Call (503) 594-2909

We will be at all 3 performances, so please let us know which one you will be able to attend as we would LOVE to see you there! Watch for Kennedy in Act 1, Scene 2 “The Battle.”

Love-Hope-Faith-Courage,
Mel

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 19, 2006

Come See Me at the Spaghetti Feed and Silent Auction

Category: Fundraisers – Melenie 9:26 pm

Just in case you haven’t yet gotten the word, my friends and family are having a Spaghetti Feed and Silent Auction for me! And guess what? I will even get to be there! And, boy, have I grown and so has my hair! It’s true! I’m not bald anymore! Can you believe it? We never thought I would have hair again 🙂 We are so excited and so many people have worked really hard to put this together and make it a really fun event. Many wonderful companies and people have donated some of the best items to be auctioned off that even I was surprised! I would love to see all of you now that I am feeling better-so many of you I have missed over the last year and a half. Please join us…you won’t want to miss the premier get together of the year!

If you have any friends or family who love spaghetti and fun…feel free to pass this on…the more the merrier!

Love you all,
Kennedy

SPAGHETTI FEED and SILENT AUCTION to Benefit Our Little Warrior, KENNEDY DUVAL

On Saturday, October 21st, join us from 4pm until 7pm at
Parklane Christian Reformed Church
16001 SE Main Street in Portland
(162nd and Main Street between Division and Stark Streets)

Excellent Food (only $6/person for a full meal!) and
Exciting items to bid for including a
HOT AIR BALLOON RIDE, $400 GC TO THE PREMIER SUNRIVER RESORT, A TRIP TO THE COAST COURTESY OF THE SURFSAND RESORT AND PRIVATE ROCK CLIMBING LESSONS! All proceeds will go to help the Duval family care for their little girl!

Kennedy Duval was diagnosed with Acute Lymphoblastic Leukemia on 5/9/05 at age 4. Her family originally had no medical insurance but Kennedy was approved to receive benefits from the Oregon Health Plan for 6 months. That assistance was terminated 11/30/05. Although her father had insurance benefits through his employer, they refused to cover any of Kennedy’s cancer related expenses. She started her chemotherapy in May 2005 and will continue treatment until August 2007. On June 1, 2006, Kennedy was approved for benefits from the Oregon Medical Insurance Pool/Regence Blue Cross-Blue Shield. Her medical bills and care expenses are continually overwhelming because of the period of time that she had no medical coverage. An account has been opened in the name of Kennedy B. Duval Contribution Fund at Wells Fargo Bank (12005 SE Division, St, Portland, OR 97266) / Acct. # 2246146969. Donations may be made at any Wells Fargo Bank. The Tax ID Number for the Kennedy B. Duval Contribution Fund is 83-0484895. Any donations to her medical fund would be greatly appreciated. Please keep her and her family in your thoughts and prayers! For progress updates, Kennedy’s website is www.courage4kennedy.com.

September 20, 2006

New Pictures!! And a change for the Spaghetti Feed :)

Category: Fundraisers,General – Melenie 10:22 pm

Just a quick note to let everyone know that there are finally new pictures in her photo album. There is only 1 picture from her Make A Wish trip but I will be adding more now that I am working out the bugs. Also, there are pictures of Kennedy before she was diagnosed and finally, pictures from her stay in the PICU over Christmas. Finally, I am figuring out the picture thing! Hopefully this means we will rotate some through from the last year or so, so that everyone can see what our girl has been up to!

Now, about the Spaghetti Feed…it is still on but due to unforseen circumstances, we have extended the date to Saturday, October 21st. Only 2 weeks later but that way all the last minute details can get worked out. (I was going to say, “all the last minute bugs” but I didn’t want anyone to think that was what we were serving…hee hee!) So, mark your calendars and join us on the 21st!

Love-Faith-Hope-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.

April 30, 2006

Finishing Radiation and Moving on to Long Term Maintenance

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

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

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

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

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

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

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

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

Hope-Faith-Courage
Mel