Courage for Kennedy – Journal

March 2, 2008

Thank you…

Category: General,Gratitude – Melenie 9:25 pm

I so appreciate all the moms who emailed me privately and/or posted in the guestbook to let me know that not only are my feelings totally normal but that they understand. Nearly everyone was the mother of childhood cancer survivor or patient. They really know this area best. They were also the ones I was most afraid of offending by my post. Thank you…thank you for not being judgmental. Thank you for “getting it.” Thank you for lending an ear and a shoulder. I really appreciate all of you…these are the moms whose children were fighting the same time as Kennedy. They are the same moms who are also dealing with the long term effects of treatment and forging ahead. Some are even moms still (or once again) in the trenches. I salute all of you.

This is still quite a journey. Not just the bump in the road we had hoped it would be but it is truly a marathon.

Some days I just feel on top of the world…so happy that she is here and rejoicing in her laughter. I love seeing soft, wavy hair adorning her head. To see her running and playing, no longer tied by an IV or feeding tube. Those are happy days.

Other days, I just wallow in the depths of pity. So sad for the childhood lost, the skills unachieved, the years of struggle ahead for her.

It really is a roller coaster. Each day that passes though, brings more and more happy days. We look forward to a future for Kennedy and hold tight to Jeremiah 29:11. We claim that for her, for us and for all the children who have fought, are fighting or are yet to fight.

Overall, it is a good, good life.

His grace is sufficient…

February 22, 2008

Two Topics

Category: General,Gratitude,Treatment – Melenie 11:28 pm

Yes, I have two separate things to talk about…oh, where to start…this should be a long one…are they ever short??

Hmmm…Kennedy had language therapy today (lt or slt) and did well despite being tired. Her random “holes” became evident when today her processing was right on! Sometimes not so much but today it was and the “holes” were somewhere else! Her processing you say? Why, yes, I did say that! JR and Kennedy played Slamwich! and Kennedy was right on the money. Visual processing, mind you, but processing none the less. Wow! She was taking names and kicking butt! Then later I gave her what seemed to be a simple instruction and she was totally lost. That’s how things are some times. Sometimes it is just easier to say “coat,” than “Kennedy, get your coat on.” You just never know how things will be that day. Also, when calling Keith tonight, to come to mom’s for dinner (she is just across the driveway, after all), Kennedy remembered to say “Hello, Daddy” first! We have been working diligently on phone manners. Kennedy would often just dive in to what she needed to say (before she forgot) and wouldn’t ask for the right person or even greet them. Now, everytime she calls, no matter who it is, I remind her to say “Hello” first. I’m hoping we have set up a pattern. We’ll have to see what happens the next time she calls someone.

She also had her physical therapy (pt) evaluation with AS. I’ve probably posted the therapists names all along but I have recently become aware that some may not want their names posted in a public forum with so many identifying remarks. If I have done that to anyone, and you don’t like it…please e-mail me and let me know. Let’s see…she appears to be scoring just where we thought she would…below 4 years old to about 4 1/2 years. It is also evident that her reflexes are not returning and may very well never return. Apparently, the pathways between her brain and her lower legs has been severly damaged because they don’t talk well to each other. No point in surgery as they don’t really have anything developed to fix this problem. She has amazing range of motion though! We’re not sure what we are doing right there…ballet maybe?…but we are not going to change anything in that department. She still hyperextends her knees when she walks and her pt is very concerned about that. It is important to protect her knees or the long term effects of walking that way could be devastating…man, I sure wish I had spell check on here! The goals are to get Kennedy to her best and protect her from further damage. So, she was cast for new AFOs (leg braces) which she is just “thrilled” about. At 7 years old, it is hard to comprehend if you can walk, run and dance to your standard why you would need to wear them. Falling is routine enough for her that it is simply not a reason. She’s excited now because they are new again, but we will have to come up with a motivation when that wears off. No night splints though, so that was good. We will be seeing AS for about 8 weeks to work on balance and coordination, so that will be fun. With deficiences in muscle tone, balance and coordination and at least 3 years behind in gross motor skills, riding a bike without training wheels will be impossible for now…at least we thought. AS is looking in to bikes with a lower center of gravity and other assistance to help her…and still look like a normal bike. Please pray for the finances to cover such a bike as I expect it to be way out of our price range. When Kennedy needed a stroller that would fit her, it cost $500!! We LOVE the stroller and are so thankful to the Wheel to Walk Foundation for the generous donation (a little plug here doesn’t hurt)! How we will get a bike I’m not sure…it’s hard enough just to cover her insurance premiums and medical bills alone…and she is no longer receiving chemotherapy!

Ok, topic number 2…I can’t be around cancer families. There…I said it. I feel horribly guilty and ashamed at this realization but I can’t hide it any more. Now, I know that families we have grown to love so much read this and to them, I am truly sorry. It is not personal and I don’t think it will last forever. For now, it is severely anxiety inducing. The secret is out. I know that you may think I am avoiding you…and I am…well, not really you…it is the cancer I can’t hardly face. It hurts me terribly to say it but at the thought of facing anyone’s cancer, I feel very physically ill. I do continue to follow several blogs and pray for all of you every single day, but like Kennedy, I just want it to go away. Not you…just it.

It is my heart’s desire to help families and I know that someday that will be my reality…but not today…and I know that God has something to do with that. I know that I will be of no use to any family where I am at now. I have much work and healing to do first. You see, I am broken. I have been trampled on and beaten down and am simply worn out. God needs to spend some time with me rebuilding before I can reach out. My faith is strong but my spirit is weak. I want a time out. I want some time to regroup and process this journey I have traveled.

It’s like I have been walking and walking and running and climbing and made it to the top of the mountain and it has taken so, so long to get here and while the view is spectacular…just a few lingering clouds that won’t give up…the weather is managable and for the most part, quite pleasant. But my boots are worn clear through and my feet are throbbing. I have overdeveloped leg muscles and my skin is battered and bruised. My back aches and as I look at my massive pack beside me, I feel so thankful I wasn’t carrying it at all but that my Friend…who never let me doubt the purpose of this journey and provided all that I needed to survive…He also carried that enormous pack. I never would have made it all these miles otherwise. I’m burned and scraped up but here, and just trying to rest for a moment and take in the view.

When I look far below me at the base of this mountain, everything looks so small and far away. I can hardly remember the valley I leisurely strolled through before embarking on this journey. I was moving so fast that I couldn’t appreciate the vast richness that surrounded me. It is absolutely breathtaking from this point of view. The grass in the meadow is so lush, it must have felt soft and fresh beneath my feet. I should have walked barefoot and really enjoyed it.

The trees are so tall and provided the most luxurious shade to rest under but I was just too busy and blazed right on through. The river from which cool, clear water flowed looks like just a trickling creek from this height but I heard it as I passed. I should have watched it as it flowed peacefully over rocks and logs bringing life and refreshment…but I had somewhere to be and something to do. Life surrounded me, nourishment was there to replenish me, cool shade abounded to protect me and I was too busy.

Then, I hit the rocks. No more cool grass, no sweet water and no comforting shade here. Just hard, hot, unforgiving rocks to struggle over and under. Occasionally, there would be an overhang that would provide shade and sometimes fresh water would flow from between the rocks but when I looked up, I was awed by the magnitude of what was still left to cross. I would turn to my Friend and beg to turn around, to repel down the side back to the valley floor and He would encourage me, promising me that the other side of the mountain was far more than I could imagine. More trees, lakes and rivers so clear you could see all the way down and grass so lush it would be like sleeping in a cloud. And so I pressed on. There was no point in going down anyway, I could trip and fall and that would be the end of me.

He would carry the pack the whole way….He promised. And He did. When it was more than I could bear, He handed me more manna or cool water…and sometimes nothing else would do but to carry me. He couldn’t carry me the whole way though. If He did, I could not appreciate all it took to get to the top. I could not feel the accomplishment of being pushed beyond my limits and succeeding. I never could have finished this race before. I was busy, overweight, overstressed and rundown. I was weak, emotional, whiny and selfish. He picked the worse climbing partner imaginable. I thought, He made a mistake. But He insisted that I was the one…and without Him…I wouldn’t have made it ten feet…not even over the first boulder.

And now, I sit. I sit and I reflect and it is time to rest. I see them…fellow climbers…fellow hikers. Some are so in shape…they just zoom up this mountain….hair flowing behind them…face towards the sky…no cares in sight…and sometimes their path up here is smooth with steps thrusting them forward. Others…their boulders cause them to hang sometimes by one hand…just four fingers…but He has a harness on them…He is safely attached…He is holding their one arm with both hands very tightly. He is never afraid. I ask Him why some paths up this mountain are so easy and some so crippling…I simply can not understand. Each path can only belong to one person. Each is uniquely different. Each person must take their path and overcome their boulders…some big and some small…some can walk beside Him the whole way…although no one on the mountain walks alone or is strong enough to carry their own pack! Others must be carried many times and must never let go of His hand….some walk hand in hand with Him. Those who try to climb alone are often seen slowing, stopping and falling. They are determined to climb regardless of the fact that their packs are pulling them down and their missing vital safetly equipment. It will take them longer to get to the top…they may never.

Here I am…I am breathing in and blowing out. I am looking at this mountain and taking it all in. Where I have come from. It’s another perspective up here. Not bad…just different. I can see more clearly. Sometimes on the mountain, I felt surrounded by storm clouds. It was pretty hard to see above or below me. I could only see My friend and exactly where I was at that very moment. Sometimes I couldn’t see even the very next step but my Friend told me exactly where to put my right hand and then my left foot and then my right foot and my left hand. He already knew where the perfect spot was. I was often grateful for the clouds. Had I been able to see how high the mountain really was or how steep the next cliff would be, I might have just let myself slide back down. I would have sat and stayed there in utter despair and disbelief. His words never failed to encourage me to just take the next step.

I have to sit and just think. I can’t yet tell the other climbers about my journey. I am out of breath. I can breathe deep enough, but at this altitude it is difficult to talk without running out of air and feeling as though I may suffocate. My Friend knows though. I don’t have to tell Him. He was there the whole time. No words need to be spoken…we are kindred spirits.

New climbers want so much for me come and get them. I just can’t. I don’t think I could climb this again. Not right now. My body and heart and mind just hurt too bad. Someone else will go. Someone who has had time to rest and heal their wounds. Whose heart and chest are no longer burning with the fire of running. Someone whose cuts are scarred over and whose bones have repaired. They are strong enough to get back down and up again. Several helped me. My Friend knew that seeing climbers who had already been all the way to the top and could come back down and climb again would renew my hope. They could help carry me and inspire me. He always chose wisely. Some climbers had a fairly easy trip the first time and could go up and down multiple times and some had a terrible go of it, but had healed well and were ready to help one more. Some just healed and pondered and moved down the other side of the mountain to the next valley. The thought of heading back down and then back up again was more than they could bear. He knew. He was all right with that and was happy to send them on their way. He would be there for the next journey.

Again, here I am. I’m not ready to go over to the other side, nor am I ready and willing to head back down from where I came from. I sit here. I think…I pray…I reflect…I pray and I wait. I don’t know how long I’ll be here. You can join me if you wish. I won’t talk much. I may not be as friendly as I would like. I’m pondering. I’ll be very glad you are here. I’ll smile and nod and can listen sometimes. And I’ll pray…for me and for you.

Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies. ~Erich Fromm

Damaged people are dangerous. They know they can survive. ~Josephine Hart

Prosperity is a great teacher; adversity is a greater. ~William Hazlitt

February 18, 2008

Feeling Better

Category: General,Treatment – Melenie 12:31 pm

It’s true…I am feeling better. I’m still not happy about the situation, but I am not feeling super angry or like having a pity party anymore. It’s time to pick up the pieces and move forward. Ultimately, my goal is to raise Kennedy in to the very best woman she can be…whatever that is. I want to take her strengths and help her to use them to the best of their ability and to help compensate her weaknesses as much as possible. I also want to give her tools to navigate through this world and teach her to be able to ask for what she needs and wants in an effective manner. Much the same things every mother wants for her child. That is my plan. So, we will be using the resources available (her language, occupational and physical therapists, Mrs. Darling (her tutor) and I will be reading, reading, reading and
researching, researching, researching) and I am working on some things (tools) to implement at home to encourage and teach her to be as self sufficient as possible.

I forgot to mention about her last appointment that Kennedy had her first blood draw without her port. It could have gone better. We numbed both arms in the crook of her elbow. It took several minutes to decide which arm to use (which had the more prominent vein) and they attempted the right one. Bad choice. It did not go well. They were unable to get the needle in enough to get blood. They pulled it out slightly, pushed it further in and dug around in her arm to no avail. Not good at all! Kennedy just started screaming her head off and crying and asking us to put her port back in! To her credit though, as angry, scared and upset as she was…she held very still. When it became obvious that it was not working, they pulled the needle out and bandaged her arm. She was still crying but went back to eating her Valentine’s candy from Adonna. Until they returned. She had no idea that they were not done…to her utter horror they wanted to try the other arm. Another nurse made this attempt and it went right in with the problems what so ever…didn’t even have to go in very deep…drew blood and they were all done and Kennedy (although crying) held totally still and didn’t feel a thing. Thank heaven for that! I don’t think either of us could have endured another failed attempt. But all is well now.

Overall, not a good day. We also got her OT and SLT evaluations back on Friday. It was what we expected but that doesn’t make it any easier to handle. Let me break down the results in the easiest way possible starting with language and the good news first:

In expressive vocabulary she scored at the 8 year old level! Woo Hoo! She could use tenses of verbs properly and was able to express herself very well.

In word class-expressive she scored at the 7 year 6 month level…almost right on target! Again, we were very happy here.

In word class-receptive she scored very nicely at 7 years 11 months.

In her ability to structure words, she scored at 6 years 11 months…really only about 5 months behind…not bad.

Her ability to formulate sentences, she scored at 6 years 4 months…ok, a year behind but still doing okay here.

Her ability to recall sentences was a little lower at 5 years 11 months but that was expected.

Finally, her ability to comprehend concepts and directions…5 years 3 months…over 2 years behind. This was expected and did not come as a surprise but none the less, not exactly what we would like for her.

Kennedy’s ability to identify pictures and use correct terms (expressive language) has improved significantly from before, so that is fantastic. We have been working with Kennedy by giving her the proper names for things and sometimes it is hard for her to recall the specific word (she called broccoli celery the other day) she always names with in the catagory and often self corrects. She is getting better at accessing that file in her brain.

We have come up with some workable goals and were approved for 24 weeks of weekly sessions with her therapist. Thank heaven for good insurance.

Now, for occupational therapy…not quite as well here. Again, I will give the catagory and then the age equivelancy.

For fine motor precision (activities such as drawing, folding and cutting), Kennedy scored between 5 years 2 months and 5 years 3 months…over 2 years behind (she is 7 years 4 months now).

For fine motor integration (activities including the reproduction of drawings and geometric shapes) she was in the age range of 5 years 8 months to 5 years 9 months…better.

For manual dexterity (reaching, grasping and bimanual coordination with small objects) she scored “below 4 years.” The test is for 4 years to 21 years and if your score is too low, it will only say “below 4 years.” How far? We are not sure…perhaps as much as the 3 year old range. Hmmm…that’s over 3 years behind. It makes perfect sense why buttons, zippers, snaps, shoe laces (although she can tie), brushing her teeth, using utensils, brushing her hair, writing, etc. can be difficult tasks for her.

Finally on this one, upper limb coordination…well, she scored in the 3rd percentile but it wasn’t too terrible. She was about 5 years 6 months to 5 years 7 months. Again, this was not a surprise to us.

What is so frustrating for us is that this is a child who was on time or advanced developmentally prior to treatment. She had wonderful verbal skills and coordination. Her brother was even teaching her how to play songs on the piano…an impossible task now. She had radiation at 5 years 5 months and as you can see…she really got stuck there. She had over 30 rounds of intrathecal (in her spinal fluid…think sometimes weekly and at the very least quarterly spinal taps with chemo injected directly in to her spinal fluid) chemotherapy between the ages of 4 years 7 months and 6 years 10 months during which time period she also was heavily sedated often and would sometimes spend up to 14 days in a drug induced coma state. She also lost her abilty to walk and talk at one point. Nearly every skill she has had to be relearned at some point…sometimes more than once. None of these scores surprise us but we are bothered by them.

So, we have goals we are working towards. She is making steady improvement (sometimes slow) all the time and is a very happy child. We have the most awesome therapy team who are willing to go the extra mile for us and always willing to research and come up with new ideas…we couldn’t ask for more.

Let’s see…this week Kennedy has her PT eval and I know Amy will have a plan for her legs and feet…that is encouraging.

Optimism is the foundation of courage. ~Nicholas Murray Butler

An optimist is the human personification of spring. ~Susan J. Bissonette

and finally…

A pessimist is one who makes difficulties of his opportunities and an optimist is one who makes opportunities of his difficulties. ~Harry Truman


February 23, 2007


Category: Family,General,Gratitude – Melenie 2:43 pm

I know this is not January anymore but this is a great way to reflect on 2006 anyway and helps me to look forward to 2007…so…here goes!

1. What did you do in 2006 that you’d never done before?

Let my (then 9 year old) son ride bucking horses and bulls and walked with my daughter through radiation. What did I do personally? I learned to crochet and knit on a loom!

2. Did you keep your new year’s resolutions, and will you make more for next year?

Last year I was too consumed to make resolutions but I have a couple of goals I would like to accomplish this year.

3. Did anyone close to you give birth?

Right off the top of my head I would have to mention my cousin Kelly, my cousin Amanda and a couple of nurses we know (although it is highly likely that there are more).

4. Did anyone close to you die?

Not close to me but I have known of several children who lost their battles with cancer in 2006.

5. What countries did you visit?

Just the good ol’ USA (and not much of it!)

6. What would you like to have in 2007 that you lacked in 2006?

A handle on our finances and healthy children.

7. What dates from 2006 will remain etched upon your memory, and why?

January 9th~Kennedy came home after being in the PICU!-even if it was only for a few days, May 9th~Kennedy started LTM, June 3rd~Austin’s first bull and bareback rides at St. Paul.

8. What was your biggest achievement of the year?

Biggest achievement? Surviving and coming out a much better person.

9. What was your biggest failure?

Failure? Not getting my parents house on the property before October.

10. Did you suffer illness or injury?

Thankfully nothing worth talking about.

11. What was the best thing you bought?

Our house and property with mom and dad.
12. Whose behavior merited celebration?

Kennedy learned how to walk and talk again this year and is now running, jumping and dancing. Austin for overcoming fear.

13. Whose behavior made you appalled and depressed?

Usually mine…

14. Where did most of your money go?


15. What did you get really, really, really excited about?

My family-they are just absolutely amazing!

16. What song will always remind you of 2006?

In My Daughter’s Eyes-Martina McBride

17. Compared to this time last year, are you: a) happier or sadder? b) thinner or fatter? c) richer or poorer?

a) I was pretty happy to still have my daughter this time last year but I am more content now.

b) about the same

c) I really see this one in a very different light…I would say richer!

18. What do you wish you’d done more of?

Organizing and exercising.

19. What do you wish you’d done less of?

Definitely eating!

20. How did you spend Christmas?

I spent Christmas morning at home with Keith and the kids then that evening with our dear friends, Will, Rhonda, Jonathan and Megan.

21. Did you fall in love in 2006?

More in love with Keith as I do every year.

22. What was your favorite TV program?

Law & Order SVU and Nanny 911

23. Do you hate anyone now that you didn’t hate this time last year?

I don’t hate anyone, now or last year.

24. What was the best book you read?

Oh, I read so many wonderful books this year! The most memorable? Probably…Tuesdays with Morrie. I also loved The 5 People You Meet in Heaven, As Silver Refined, Lost, Confessions of an Ugly Stepsister,
The Memory Keepers Daughter, The Da Vinci Code, Breaking the Da Vinci Code, The Other Boleyn Girl, When the Day of Evil Comes, Portrait of a Killer: Jack the Ripper Case Closed, Who Owns Death, Quintilian On the Teaching of Speaking and Writing, Home Sweet Homeschool and so many others…those are just the first ones I can think of.

25. What was your greatest musical discovery?

Kenny Chesney-Be As You Are

26. What did you want and get?

Another year off of school to be with my family.

27. What did you want and not get?

My whole house clean and organized.

28. What was your favorite film this year?

Again, saw some really good ones but my favorite was The Family Stone (his family was so much like mine!)

29. What did you do on your birthday and how old were you?

I don’t remember much from my birthday last year only that I was with my family and I turned 33.

30. What one thing would have made your year immeasurably more satisfying?

An organized home.

31. How would you describe your personal fashion concept in 2006?

T-shirts and jeans or yoga pants.

32. What kept you sane?


33. Which celebrity/public figure did you fancy the most?

Regina Ellis, executive director and founder of the Children’s Cancer Association, for rising out of the tragedy of losing her precious daughter and doing something amazing to help families whose children are in medical crisis all over Oregon and SW Washington.

34. What political issue stirred you the most?

Many…let’s start with the election.

35. Who did you miss?

Our family who now lives in Montana and of course, my grandmother whom I think of every single day.

36. Who was the best new person you met?

Definitely, Rhonda 🙂 I’ve met so many new people this year but she is absolutely a kindred spirit.

37. Tell us a valuable life lesson you learned in 2006.

I am NOT God nor do I want to be.

38. Quote a song lyric that sums up your year.

No, life ain’t always beautiful.
Tears will fall sometimes.
Life aint always beautiful,
But it’s a beautiful ride.

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 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, 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,

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…


October 12, 2006


Category: General,Gratitude – Melenie 9:20 am


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

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

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


October 3, 2006

Kennedy is a Mouse!!

Category: General,Treatment – Melenie 9:43 pm

Yes, she has a part in this year’s production of the Nutcracker! Kennedy will dance the part of a mouse! Her audition went well, she was the youngest there, and while it was still difficult for her because of her problems with strength and coordination, she listened and followed directions and gave 100%! It was hard to watch her struggle with things such as skipping but the smile on her face gave no sign of worry 🙂 and that gave me encouragement. She worked hard and the next day was sore. She still has a lot of tightness in her tendons, ligaments and muscles so it was hard to walk but by Monday she was off and running again. She has her first costume fitting and program pictures next week and she is so excited! You will all have the opportunity to watch her scurry across the stage on Saturday, December 16th (shows at 1:30 and 7:30 pm) or Sunday, December 17th (2:30 pm) at the Canby Fine Arts Auditorium in Canby, Oregon. It is performed by the Clackamette Youth Ballet and is an incredible production. Please check the CYB website for more information regarding tickets. It will be a wonderful way to celebrate the Christmas season.

Kennedy returns to the clinic tomorrow for her monthly IV Vincristine, counts check and Pentamadine. There is always a lot of anxiety for her regarding being accessed when it has been so long so please pray that it goes well. She also starts her 5 day steroid pulse-yippee for us! The last few times though she has done really well. We did have a bit of a scare last week. My friend, Jackie, brought our horse, Chaz, as well as her horse, Ladybug, for us to enjoy at our house and Kennedy was walking Ladybug and had her foot stepped on! She screamed and even cried for about 10 minutes (I would have cried much longer myself!) but then calmed down. Of course, her foot began to turn purple and swelled but it wasn’t long before she was walking fine on it. I called the clinic who sent us back to our regular pediatrician but suggested we have it x-rayed because no matter how good she felt it could be broke (she is more likely to break a bone because of the high doses of steroids she has been taking for so long) but thankfully it was just badly bruised. I was so relieved! Not just because a break would have been terrible for a 5 year old, but because it would have created more weakness and tightness in her muscles and she would have been devestated to be out of ballet and the Nutcracker. But, as with many things this past year or so, it all worked out just fine 🙂 It hasn’t even deterred her from wanting to ride as she could not wait to ride yesterday when we went over to care for Chaz. It sure looks nasty now though!

Saturday we went to Portland’s Saturday Market and had a blast. We were even able to get some amazing donations for the upcoming Spaghetti Feed and Silent Auction from a variety of artists! They were just wonderful and so generous. For more information please see the link to the event. I want to personally take the time to thank those who have contributed to the event so far:
The Mouse Factory
Jim’s Woodworking
Cycle of Gold
Rileyville Soap
Gypsy Camp Creations
Spoonman Creations
Moppethill Farms
Stonewear by Fronks
Pterylae Designs
Candy Castle
Beard’s Framing
Les Schwab
Bonneville Hot Springs Resort and Spa
Oregon Zoo
Vista Balloon Adventures
Portland Children’s Museum
Portland Rock Gym
Enchanted Forest
Sunriver Resort
and there are more, I just don’t have all the details yet but I will add those soon. If you have a product you would like to donate, or know someone who would, please contact me via e-mail at and I will be happy to discuss it with you. Remember the event is just over 2 weeks away and we are really getting excited! It is going to be such a blast!

Austin is doing well in soccer. They are a little frustrated because while they all give more than 100%, our team is so small that they do not get to rest and are really tuckered out by the second half of the game. Most teams we play have about 15 players and can swap out the entire team while we often have 1, or if we are lucky 2, subs to swap. Makes for a long game but they sure are getting good and learning to play as a team.

We have not finished the neuropsych testing yet. Three hours was just too much for Kennedy so we have to return in a few weeks. I am going to a conference next Friday to learn how to better educate her and get a deeper understanding of the possible challenges so I’m hoping to take come away with some good information. The kids are doing great homeschooling and are really enjoying it. It can be a lot for me some days but we are still working out the kinks. Overall, I think we are off to a good start.

On another note, we did qualify and get approval for the health hardship to put another house on our property so that my parents can continue to help us with Kennedy. We even found a house! The problem has been financing. Please pray for things to come through. Because of Kennedy’s mounting expenses, we are at our limit as far as our debt to income ratio and can’t get a loan for it as the property is in my parent’s name. They of course, have the loan for the property but adding even a small loan to buy the house and move it is proving difficult. Winter and cold weather is coming making this an urgent need and our house is just not big enough. We are leaving this in the Lord’s very capable hands but are concerned, as anyone would be, about how the pieces are going to come together. Any suggestions or prayer would be so appreciated!

Other than the above, we are staying busy. Mostly the kids keep us hopping and with Kennedy’s 6th birthday just over a week away and the holidays fast approaching we are very thankful for all of our blessings no matter how crazy they make us sometimes! I was thinking today about where we were just a year ago…finishing up IM1 and wishing there was an end to our every other week hospital stays. Wow! What a difference a year can make, huh?

Finally, please pray for Kaeli and her family. She was just recently (9/26) diagnosed with ALL and as many of you know, this is just excrutiating for her and her family. Tomorrow is Day 8 of induction for them when they find out if her leukemia is in remission so extra prayers tomorrow. My heart just hurts as I remember what that first week was like.



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!


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!