Courage for Kennedy – Journal


November 22, 2006

Thanksgiving

Category: Gratitude – Melenie 8:15 pm

Wow! It is hard to believe that 18 months have passed since Kennedy was diagnosed. So much has changed and not always the obvious. As I reflect many things come to mind to be thankful for. Here are the top 25…

1. God is in control! I do not have to worry or fret or try to be God because He will take care of our every need.

2. Kennedy is here and thriving.

3. We have a warm house and food to eat.

4. I am blessed with an amazing family that has been my support when I could not stand.

5. God has sent me the most loving and compassionate friends.

6. Austin survived the rodeo season with minimal injuries.

7. Austin survived baseball and soccer with minimal injuries.

8. Kennedy and Austin are thriving in their homeschool environment.

9. That Kennedy was diagnosed at a time when leukemia can be cured.

10. Her amazing doctors who have cared not only for her but for all of us as well (Dr. Olson, Dr. Norwood, Dr. McGann, Dr. Barclay and nurse practitioner, Tricia)

11. The loving nurses who never fail to carry us through (way too many to name here but I will give it a shot…Megan, Lyndsee, Jeffrey, Amanda, Torey, Stephanie (Mad Dog), Heather & Heather, Melanie, Nellie, Louise, Mona, Suzi, Sam, and so many more!)

12. Kennedy’s physical therapist, Amy, who never fails to go to bat for her no matter what and never gives up.

13. All of the cancer organizations who have helped to support us financially and emotionally.

14. All our dear friends and family who continue to show up at fundraisers and help in anyway possible.

15. That Kennedy can walk and talk and jump and play.

16. For the beautiful children we have been blessed to meet on this journey.

17. For the support that has come from all over the US and Canada…it has definitely restored my faith in humanity.

18. For my sister who lovingly stayed with me even when I kept her up all night and to her husband for letting her without complaining.

19. For my parents who are always there in times of trouble and in times of joy.

20. For my sister-in-law who never fails to send the funniest responses to my e-mails and posts the best messages in Kennedy’s guest book.

21. For Austin’s help in caring for Kennedy and being understanding when Mommy could not be home with him.

22. For my amazing husband who continues to love, honor and protect me and who works hard so that I can give my children all that they need.

23. For all of the refining I have endured at the hand of God. He has shaped me so much this year and my heart just desires to be even closer to Him.

24. For Kennedy showing me that quality of life is far more important than quantity.

25. For a life full of blessing and richness.

May we all be blessed with the love of family and friends tomorrow, may the Cowboys win on Thanksgiving and may we be FULL of turkey.

I Chronicles 16:34 “Oh, give thanks to the Lord, for He is good! For His mercy endures forever.”

Love-Hope-Faith-Courage,
Mel

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 13, 2006

Happy Birthday, Keith!

Category: Family,Gratitude – Melenie 2:20 pm

I know that this is Kennedy’s blog, but I can’t let this day pass without wishing my amazing husband a happy birthday. We recently celebrated our 11th wedding anniversary (October 26th) so the last few weeks have been a time of reflection.

In those early years when we struggled with Keith’s addiction issues, I kept moving forward because I knew in my heart that there was the most wonderful man behind all of the confusion and heartache and so I stayed and prayed. I took Peter’s words to heart and worked to win him with a gentle and quiet spirit. Was I always “gentle and quiet?” If you know me, you are laughing hysterically right now…no, but as with this battle, I knew that God had a plan for us. As he worked diligently to overcome his internal struggles, I just continued to pray and love him. I had much work to do myself as I was so unwilling to forgive him for all that we had walked through. There was work for both us to do to heal. And we did and we persevered. Now, looking back, I know that we had to ride out those storms and learn to fully trust and believe in each other to weather this hurricane. We had to be broken down and built back up in such a way that our foundation would not be shattered. Sure, there are small dings, things have been rattled and shaken but it is solid and still holds tight. In those first days after finding out about Kennedy, we made a committment that no matter what lay ahead for us, we would put our relationship first knowing that a strong marriage created a strong family. We would, together, walk this out always knowing that we could depend on one another for strength and security. And it was tough. Many, many nights we were apart. Many times each others needs had to be on the back burner but we kept communication open…never letting a day pass without seeing each other and telling each other how much we loved and missed one another. We knew that this would all be for a short time and our committment never waivered. We have continued to make each other the highest priority regardless of the war waging around us. There were times when he was the strong, decision maker and times when I carried us through. We used our strengths and compensated each other for our weaknesses and through it all we always love each other. Sure we fight and argue and don’t always see eye to eye but our love and committment never fail.

Why am I sharing so many intimate details about my relationship with Keith? Because today especially, I am so very thankful that he loves me so unconditionally. I am continually blessed by having him in my life and could never ask for a more wonderful husband. And now looking back, every single moment, every heartache, every long worried night was worth it and I would do it all again to have the man I’m married to today.

I love you, Keith and I wish you the happiest of birthdays.

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