Courage for Kennedy – Journal


May 12, 2007

Happy Mother’s Day

Category: Family,Gratitude – Melenie 10:22 am

To all those mothers that got more than they asked for…enjoy…and to all mothers who never give up and always keep going when they can’t take one more step…to everyone…Happy Mother’s Day.

Some Mothers Get Babies With Something More
written by: Lori Borgman
Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants.
She smiles demurely, shakes her head and gives the answer mothers have
given throughout the pages of time. She says it doesn’t matter whether it’s
a boy or a girl. She just wants it to have ten fingers and ten toes.
Of course, that’s what she says. That’s what mothers have always said.
Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a
perfectly healthy baby with a round head, rosebud lips, button nose,
beautiful eyes and satin skin.
Every mother wants a baby so gorgeous that people will pity the Gerber baby
for being flat-out ugly.
Every mother wants a baby that will roll over, sit up and take those first
steps right on schedule (according to the baby development chart on page
57, column two). Every mother wants a baby that can see, hear, run, jump
and fire neurons by the billions. She wants a kid that can smack the ball
out of the park and do toe points that are the envy of the entire ballet
class.
Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more.
Some mothers get babies with conditions they can’t pronounce, a spine that
didn’t fuse, a missing chromosome or a palette that didn’t close. Most of
those mothers can remember the time, the place, the shoes they were wearing
and the color of the walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It felt like recess in the
fourth grade when you didn’t see the kick ball coming and it knocked the
wind clean out of you.

.
Some mothers leave the hospital with a healthy bundle, then, months, even
years later, take him in for a routine visit, or schedule her for a well
check, and crash head first into a brick wall as they bear the brunt of
devastating news. It can’t be possible! That doesn’t run in our family. Can
this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely
sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes
appear as specimens without flaw – rippling muscles with nary an ounce of
flab or fat, virtual powerhouses of strength with lungs and limbs working
in perfect harmony. Then the athlete walks over to
a tote bag, rustles through the contents and pulls out an inhaler.
As I’ve told my own kids, be it on the way to physical therapy after a
third knee surgery, or on a trip home from an echo cardiogram, there’s no
such thing as a perfect body.
Everybody will bear something at some time or another. Maybe the affliction
will be apparent to curious eyes, or maybe it will be unseen, quietly
treated with trips to the doctor, medication or surgery. The health
problems our children have experienced have been minimal and manageable, so
I watch with keen interest and great admiration the mothers of children
with serious disabilities, and wonder how they do it.
Frankly, sometimes you mothers scare me. How you lift that child in and out
of a wheelchair 20 times a day. How you monitor tests, track medications,
regulate diet and serve as the gatekeeper to a hundred specialists
yammering in your ear. I wonder how you endure the cliches and the
platitudes, well-intentioned souls explaining how God is at work when
you’ve occasionally questioned if God is on strike. I even wonder how you
endure schmaltzy pieces like this one — saluting you, painting you as hero
and saint, when you know you’re ordinary.
You snap, you bark, you bite. You didn’t volunteer for this. You didn’t
jump up and down in the motherhood line yelling, “Choose me, God! Choose
me! I’ve got what it takes.” You’re a woman who doesn’t have time to step
back and put things in perspective, so, please, let me do it for you.
From where I sit, you’re way ahead of the pack. You’ve developed the
strength of a draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July,
carefully counter-balanced against the stubbornness of an Ozark mule. You
can be warm and tender one minute, and when circumstances require intense
and aggressive the next. You are the mother, advocate and protector of a
child with a disability. You’re a neighbor, a friend, a stranger I pass at
the mall. You’re the woman I sit next to at church, my cousin and my
sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got
something more.

You’re a wonder.

Updates coming soon…watch this space!

February 23, 2007

2006

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?

Hmmm…guess!

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?

God

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 19, 2007

Having fun and staying busy!

Category: Family,Gratitude,Treatment – Melenie 8:31 pm

I decided I didn’t want to wait forever and then have a hard time remembering what needed to be said so I’m jumping on it now 🙂

We had a great time at the Snowmobilers/Candlelighters event. I do not personally enjoy the cold so I was often found indoors but I did get on the inner tube a few times. Kennedy and Austin had a blast sledding over and over and over and over. Keith and Kennedy rode the snowmobiles but Austin just wasn’t interested. Who would have guessed? We were treated so well and there was tons of food if you could get the kids to come inside 🙂 If you haven’t seen it yet, I highly recommend the video Warren made. The link is in the guestbook. It’s really cute of Warren’s brother, Jared, and Kennedy sledding together.

We’ve just been cruising along. It has been nice to have fewer appointments during the week. I feel like homeschooling is more consistent as far as the amount of work we are able to get done and I look forward to getting more involved in homeschool activities and meeting other families. We have decided on a curriculum that we all like and will work for us. I have talked to the kids about the plan for next year and they are adament that they want to continue with this. I hope to return to Willamette and finish my degree but think I can balance better now that my priorities are in order. Especially now that we know what the school plan looks like. I am also looking in to taking a math class or two at OSU online this summer so that will mean only 5 classes to graduate. Woo Hoo! I hate to get this far and then give up.

Kennedy is making steady improvement in OT and continuing with a home program for PT that seems to be working. She has a speech evaluation coming up and I am really hoping we can do that every other week to have more time at home.

Keith has been working on my car and will hopefully have it done soon. It has a blown head gasket (2, I think) and it would have cost us about $1300 in the shop so for around $300 he decided to fix it himself. It is a little overwhelming (although he has done it himself before) because he is tackling it alone and we have no shop or garage and it has been raining but it is progressing. I really need to hold on to my car for at least another year because we just can not afford another payment right now. He has other projects coming up including getting the fence done (that is next weekends plan) and setting up the site for my parents house. I got all of the permits Friday and we are waiting for the final $ to sign the last of the papers then the countdown will begin! The kids are really looking forward to having them home as are we! Kennedy especially can’t remember a time when she didn’t live with Grammie and Papa.

Things are really feeling normal again. With ballet, homeschool, friends, family, baseball starting, fewer appts. and such we are encouraged that normal will return. Kennedy even has 2 birthday parties this weekend (her friend, Mackenzie, and her cousin, Emily). Tomorrow night we will be having dinner out to celebrate with Emily (6) and family. Wednesday night Kennedy is being honored by the Clackamas High School Wrestling team who have been raising funds for her benefit this season. We saw them when the season first started and Kennedy is very excited to see them again. Of course, it helps that her very favorite nurse, Megan, is married to the wrestling coach, Jayson, and we get to see them again as well. We are deeply touched by the dedication of these young men and their inspiring coach 🙂 So, we are looking forward to that.

Let’s see…what else…Oh, big news in Montana! I hope Aunt Amy doesn’t mind me sharing 🙂 We are heading to Montana in April for Aunt Amy and (soon to be) Uncle Alan’s wedding. This will be the farthest Kennedy has been from home (with the exception of her Make-A-Wish trip). We still have to get the OK from the oncologist on Wednesday (they haven’t let her travel over the mountain passes except once) but I don’t see any problem with it. We are really so very happy for them. We just adore Alan and the kids are excited about gaining 3 new cousins! Doesn’t get much better than new playmates!

Yes, we have clinic on Wednesday and steroids start again. Kennedy did so well last month that they gave us 4 weeks off. It has been so nice! It will be a long day with her monthly Pentamadine (preventative antibiotic) but I’m not complaining. I hope her ANC hasn’t gone up because then they will be increasing her meds and that will mean only 1 week before we have to go back. We are also scheduled to go on vacation (5 days at the beach) the week of Vincristine next month so I’m hoping that we can wait and go in on Friday when we get back to town instead of Wednesday. We’ll see. She’s on a research protocol so they may be pretty strict about it. I would hate to change our plans now.

We also got our date for the Children’s Cancer Association Caring Cabin in April. We are just ecstatic! Everyone that we know that has gone has had just a wonderful time so we can’t wait. I wrote in my last journal entry about the radio-a-thon with 105.1 The Buzz and wanted to let all of you know that they raised over $230,000 for CCA which will be used to help local families like ours who have a child with cancer. That is just awesome!

Well, better get to reading Narnia before they bug me to death! Then I hope to hit the sack early.

Love-Hope-Courage-Faith,
Melenie

Oh, we are planning to do a couple of fundraisers this year. We just haven’t had a moment and my absolute best fundraiserer (Rhonda) needs prayer as she battles with medical issues. They are in the works and details will be coming soon.

January 18, 2007

We Are Still Here!

Category: Family,Gratitude,Treatment – Melenie 11:08 pm

It is no excuse to say that we are busy or that “no news is good news” or any of that other crap…I just plain haven’t been updating the site. There…no excuses. I finally decided I better get to it since my sister-in-law wanted to know what was up with Thanksgiving in January 🙂 You know, I am always checking other people’s websites and wondering why they haven’t updated IN A FEW DAYS but am not considerate enough to update Kennedy’s! What is wrong with me?

Ok, that is not what you all came here to read so let me catch you up on all the fun around here 🙂 After Thanksgiving we had a bit of a scare when Kennedy began falling to her left side (I mean, her left leg was covered in bruises while her right leg was showing not a single shade of purple, blue or green) and had a day where she was slurring and stuttering. Now, Kennedy does have some speech issues, but not like that! I commented to her doctor because it was unusual but didn’t really suspect that anything was wrong since she seemed better when she woke up. They immediately began to panic and ordered an MRI for the next morning along with an EEG and extra blood work. They suspected that it was possibly a stroke, seizures or a brain infection. WHAT??? Never mind that we had just spent that morning getting a 2 hour MRI to check for degeneration in her weight bearing joints (both hips, knees and ankles). That had not gone well…when they accessed her port, they poked her in the wrong place and tried to draw blood out of her chest! I just about had a heart attack but Kennedy took it all in stride and even informed the IV team member that it was in the wrong place without even a tear. She did manage to make things right and Kennedy was asleep in no time. Ok, the results. Kennedy does not have a degenerative disorder (AVN) but does have signs of osteopenia (early stage osteoporosis) and while her bone length is fine, the diameter of her bones and their density has been altered by the steroids. Not so much that they are willing to make a change in her medication but she is now taking regular calcium supplaments in addition to her daily meds and the calcium in her diet. God is amazing and I believe that He is protecting her bones and joints. Remember she was stepped on by a 1000 lb. horse this summer and while her foot turned the most awful shade of black, it was NOT broken. There is no medical reason why her foot and toes should not have been at least cracked if not shattered except that God and his angels were watching out for her. Psalm 91:11-12 “For He shall give His angels charge over you, to keep you in all your ways. In their hands they shall bear you up, lest you dash your foot against a stone (or horse).” He knows. And as far as the brain MRI and EEG, there are significant, non-specific changes to the white matter of Kennedy’s brain. No sign of stroke, not that one side is more damaged than the other, no bleeding or bruising, no lack of blood flow to any area and no signs or infection or seizure activity. The changes that they are talking about are ones that I have previously discussed that have been known to cause memory loss, attention deficit and slow processing. It is disheartening to know that these “changes” can actually be seen, that there is visible, physical damage. Now, how do I feel about all of this? I feel that Kennedy is in the very capable, very loving hands of God. Sure, I worry about the changes to her bones but she can still walk. She can still run. She can still dance. She is jumping and playing and growing. The changes to her brain and the effects of these changes…not thrilled but she talks, thinks, learns and laughs. And you know what? I KNOW that God is healing her brain too. I have seen improvements in her memory, ability to recognize order and patterns and while she still struggles with her attention, I see improvement everyday and I know that we can teach her and retrain her brain so that she will be able to do anything she wants. It may take her a little longer to figure it out but her intellegence has been protected (the parts of her brain that affect her ability to comprehend and her intellect are intact as if nothing has happened). In the last few weeks, I have had an overwhelming peace about Kennedy’s future. I am clinging to God’s promise in Jeremiah 29:11 that He has a hope and a future for Kennedy, a future that is good.

So, that is where we are at. Kennedy is now at 100% of her dose and her body is doing well as is her liver function. She did crash when her chemo was at 125% but recovered quickly and has done very well at her current level. We have reduced her liver medication with great results and there is continued hope that her liver function will return to normal when her chemo ends in August. Praise God! She will have to be careful with her liver as far as medication and alcohol but there is no reason why she should not be able to live a normal life without future complications as far as her liver is concerned.

I spent much of Christmas reflecting on how far we have come on this journey and what the future holds for us. Last year, Kennedy was knocking at death’s door and everything was very uncertain. Even when we brought her home, she could not sit unsupported, had lost her ability to walk and could barely crawl, her speech had been disrupted and she would soon have another feeding tube. And what did this Christmas season hold for us? She danced 3 performances of the Nutcracker in two days! She baked cookies, played with cousins, decorated the tree, wrapped presents, visited with friends and family, old and new and joyfully rang in the new year. It is amazing what a year can do for your life. In 525,600 minutes a whole new life can happen…a whole new chance at life can be yours. The minutes have already started for this year…how will you spend your share of 525,600 minutes?

I promise more to come…Kennedy and Austin are excited about rodeo starting, I’m writing a book this year and starting on a new venture, financial freedom, new adventures to undertake…come along on this journey with me.

“When written in Chinese the word “crisis” is composed of two characters – one represents danger and the other represents opportunity.” ~John F. Kennedy, address, 12 April 1959

“Optimism is the foundation of courage.” ~Nicholas Murray Butler

In His hands,
Mel

Please pray for a house for my parents (this has certainly been a trial of it’s own!)

Also, continue to pray for Gage as he battles AML and Donovan as he becomes an angel and of course, the many children fighting the cancer dragon.

And many, many thanks to my fellow homeschool moms who adopted our family for Christmas. You made an AMAZING difference and truly blessed us all with your love and generosity. And thank you to Candlelighters and the NE Optomists Club for helping us to have the most incredible Christmas this year. We are continually blessed and amazed by God’s people and His out pouring of love and compassion upon us. We truly serve an AWESOME God.

This is our song of 2006. I have changed a few of the lyrics (my apologies to the writer but I had to make it personal). My lyrics with appear in italics.

Seasons of Love (from Rent)

Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

How about love?
How about love?
How about love?
Measure in love

Seasons of love. Seasons of love

Five hundred twenty-five thousand
Six hundred minutes!
Five hundred twenty-five thousand
Journeys to plan.

Five hundred twenty-five thousand
Six hundred minutes
How do you measure the life
Of a woman or a man?

In truths that she learned,
Or in times that he cried.
In steps that they took,
Or the bonds that were tied.

It’s time now to sing out,
Tho’ the story never ends
Let’s celebrate
Remember a year in the life of friends
Remember the love!
Remember the love!
Seasons of love!

Oh you got to got to Remember the love! remember the love,
You Measure in love, know that love is a gift from up above, Seasons of love.
Share love, give love, spread love. Measure measure you life in love

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

September 14, 2006

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

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

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

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

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

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

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

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

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

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

Faith-Hope-Courage-Love

Mel

June 28, 2006

Loved Disneyland! Thank you so much Make A Wish!

Category: Family,Gratitude – Melenie 9:41 pm

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

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

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

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

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

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

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

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

Faith-Hope-Courage,
Mel

June 14, 2006

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happiness is a form of courage. ~Holbrook Jackson

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

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

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

Hope-Faith-Courage,
Mel

May 9, 2006

One Year…Very Long

Category: Family,General,Treatment – Melenie 6:14 am

May 9, 2006

I have thought about this day many times over the last year. There were times I thought this day would never come, or that it would come and go without my precious Kennedy. She has proved herself strong and very courageous. We have all been stretched in ways we never imagined only to discover that our lives are abundantly richer today than they were a year ago. Rich you say? Yes, beyond our wildest dreams. This has been the longest, hardest and most rewarding year of my life. I, personally, have been held to the flames until I was sure I would melt in to oblivion only to find myself strong as steel. I could not have truly lived without this last year.

What is it like finding out your priceless gift has cancer? This sweet, innocent child that you love and protect with your life is facing a fierce dragon intent on devouring her? I felt as if my life was moving at the speed of light and came to a very sudden, and painful, stop. You are literally colliding with a brick wall and you don’t see it until your entire body is consumed with fiery pain. I heard someone say one time that it is as if you are watching out the front window as your child plays joyfully in the road. A screaming car races around the corner and tears directly towards her and you are paralyzed, unable to yell to her or run to her…you are helpless to save your baby. That is exactly what it feels like. Before I share another moment with all of you, it is vital to see where things were only six months before…

As the winter season began, I was preparing for finals, writing my grant proposal and planning my next semester while anxiously anticipating my senior year of undergrad. Did you notice that entire sentence was all about me? That is where my life had been for the previous two years or so. Sure, I loved my family very much but I had become focused on what was going to fulfill me (and then surely it would be fulfilling for everyone else too, right?). I had worked hard to get to Willamette and had won awards along the way. I was career bound and would make a huge difference in the future of mankind when I graduated. Somehow, though, it wasn’t as fulfilling on the inside as it appeared on the outside. I spent too much time away from my family and my marriage had been harmed, not to mention friendships that could not be nurtured because I simply did not have the time. All my worldly knowledge (and I use the term lightly now) had only created more doubt in my faith. Sure, I knew exactly what I should say and do and I was always quick to give God praise for my many accomplishments but inside I was on very shaky ground. It came to a head one day as I was driving home that happiness and fulfillment always seemed to be just over the next hill. Like when you are chasing the end of a rainbow and can never quite get under it. It was always when the next big thing happened then I could be happy. Only when it did…the “happiness� was fleeting and the sacrifices to get there were many. As I came to this conclusion, I called out to God in a way I never had before. I mean, I had gone to him with an open heart in the past, usually in major crisis, but this was different. My faith was so weak that it was more of a mocking tone. At first, I challenged God to do something …anything so that I could see Him. You know, strike someone down or clear the cars ahead of me so I could be on my way, but then it became a true prayer. I wanted God to show himself. I mean really touch my life in such a way that I could not deny His existence. Show Him in all His glory and put His hand in every aspect of my life. Not something corny like changing the color of the sky but to do something powerful and meaningful and give me a firm foundation to stand on. Now, I know that many people will say that I was bordering on the “big� sin…you know, out right denying His existence…and I was but not with an evil heart. I felt so lost and weak that I knew the only way I could get my feet on a firm foundation again, if not the first time, was to “put out the fleece� so to speak. And boy did I!!! I had no idea then what I was asking for but after all that I have learned about God, I would do it ALL again in a heartbeat. He is an amazing God!

The days passed and it appeared that God was going to do nothing. My life continued on as it had been and as spring semester picked up, I forgot all about that afternoon; days went by fast causing weeks to fly. Little had changed and I began working on my research project and preparing my application for grad school. When I wasn’t at school, I was working at the capitol, doing homework (sometimes staying up for more than 24 hours!), running my kids all over the place between my sister’s and their activities and finding time to spend with my husband. I was so busy that I couldn’t see the signs that something was wrong until it was all in hindsight. That will forever be my burden. On Monday, May 9th, I had turned in my last final and Kennedy and I traveled to Newport, Oregon so I could gather court transcripts for my project. She slept the whole way there as the rain pounded my car. She was tired and whined until I carried her. Obviously she was well behaved as we waited since she had little energy. I had taken her temperature that morning and it was low grade so I assumed she might be getting a cold bug. She had gone to the bathroom before we left and I thought it was slightly pink but couldn’t really tell and because she was having no pain and I could not confirm it, went about my day. On our way home we stopped at the very, tiny library in Toledo to read old newspaper articles on microfiche. Again she waited patiently and read books as I poured over them looking for specific information and making copies. I took her in the restroom to go and her urine was bright, blood red. We were out of there! There was no mistake this time that something was wrong. My cell phone was out of range so I hurried along the mountain highway and headed for Philomath to get a signal. I was sure she had some raging bladder or kidney infection. The nurse at the pediatrician’s office assured me it could very well be something that could be treated with antibiotics and to just drive straight there and they would get me in.

We were unable to see our regular doctor but thankfully Dr. Stanton was there. Kennedy gave a urine sample and it was the color of cranberry juice. After a few minutes, he came in and began asking further questions. He told me that there were no bacteria in her urine but it was full of blood. He asked me about her bruises and I immediately became defensive. Sure, she had bruises, but we live in the country and she played outside a lot. I did mention though that she had some odd bruises on her fingers and pelvic area. He noticed an enlarged liver and spleen, again, this meant very little to me. The final call was the petichae on her legs. Now, petichae is when your platelets (or clotting factors) in your blood are so low that your blood literally seeps out of the veins and rises to the surface. The Saturday before, she had helped her dad mow the lawn on the riding mower and had developed hives. I assumed that it was leftover from that. Dr. Stanton pushed on them and they did not blanche. He asked questions regarding her appetite and sleep patterns that I explained away with easy and normal excuses. He left the room and I began to panic. He returned a few minutes later to inform me that Kennedy needed to be admitted for further testing and treatment. He told me that she could have a slow growing Meningiccocal. Well, that sent my heart in to a panic. I assumed that we would be admitted to Portland Adventist since his office is on the same campus. He said no, that we needed to go to Emanuel right away. I asked if I could go home and get some clothes or something. Again, the answer was a definite no and an insistence that we proceed to Emanuel. I needed to talk to my husband. So far the biggest tragedy we had was that my son had his cheek split open by a baseball only 5 days before and had needed stitches. I called Keith and told him something was terribly wrong with Kennedy and that he needed to meet me at Emanuel ASAP. I was shaking and very upset, so Sonja drove us to the ER and I left my car behind. I’m not sure if anyone has ever had the pleasure of arriving at a large, trauma hospital children’s ER waiting room but typically they are full of vomiting, coughing and sneezing children. We spent all of 2 minutes in the waiting area before we were rushed back to an examining room. We never even saw a triage nurse or anyone in admissions. I knew we were in trouble. I didn’t remember until we arrived at the ER that on our way out of the pediatrician’s office, he told me that if it was childhood leukemia, that it was very treatable and many children recovered from it. Ok. Later I found out that while he knew what her diagnosis would be, he was unable to confirm it and tell us without a blood test and because of the severity of her symptoms he knew it was in her best interest to get to a hospital immediately.

Doctors and nurses flooded our little ER examining room. Questions were flying at me and they began a series of blood tests that only seemed to cause additional pain for my baby. But soon she was feeling as if she had more energy and was actually walking all over the room and talking up a storm. My mother, Austin and Keith arrived and still we knew nothing. Grammie took Austin home and shortly after they left, the ER doctor came in with the news no parent should ever receive. She began by assuring us that Kennedy did not have Meningiccocal. Ok, that was good, right? And that it wasn’t like she had diabetes. Ok, what the hell is that supposed to mean? Then she told her us that her white count was 213,000. We were still dumbfounded. We had no idea that a normal white count is between 10-12,000 and that anything over 50,000 made her at a high risk for relapse. Finally, she told us that Kennedy had leukemia. Literally, time stood perfectly still. It was if all sound and movement came to a screeching halt right there that night. Nothing else could have been more important in that moment. Then I was shaken back to reality. What???? No frickin’ way was this happening to her. I looked right at the doctor and told her there was a mistake because we had NO health insurance. I asked if it could be anything else…anything in the world besides cancer. Right at that moment, I would have taken Meningiccocal or diabetes…just not cancer. No one could tell us what kind she had, what treatment would look like, when she would get better…nothing until morning when we could meet with a pediatric oncologist. Pediatrics and oncology should NEVER be in the same sentence, let alone be the title of one of the most important people in our daughter’s life.

Keith called his father; I called my mom and my sister. My sister came to hospital and spent the first of many nights with Kennedy and me. That was the longest night of our lives. Kennedy received red cells and platelets and all we got were many med students with questions that only made that night more painful. I just could not accept that Kennedy had cancer. I would not accept it! There just had to be something else. We could not pay for treatment, Kennedy had been relatively healthy, Keith was starting a new career, I had big plans for my senior year, Austin was playing baseball and the season had just gotten underway! This could not be happening! I had no idea what we were going to do…about anything. This just was not going to happen to my baby.

The next week is a whirlwind. In the following days we were asked to make decisions no parent should ever have to consider. Kennedy’s white count was so high that they discussed options such as pheresis, a process of draining off the white blood cells, but no hospital in Oregon or Washington would even consider doing it on a patient so young, or a possible transfusion exchange. Both were scary options. The oncology team told us that Kennedy would have to start chemo immediately and while they knew it was acute lymphoblastic leukemia, they had no idea which kind and whether or not she had favorable genetic markers. We had three options…first, we could go with what is considered standard treatment for high risk leukemia, second, we had the option to move to Memphis (and would need to leave within an hour) because Kennedy had been accepted in to a program at St. Jude’s or third, we could put Kennedy in a phase 3 clinical trial being conducted by Children’s Oncology Group. While we seriously considered going to Memphis, all of Kennedy’s treatment would have been covered 100%, the thought of leaving my husband, son and all our family and friends during the most difficult time of our lives was more than I could bear. I left all of it in Keith’s very capable hands and he decided to sign Kennedy up for the comparison trial by COG. Despite all the insurance problems, we still know it was the best decision. We believed, and still do, that no matter what the outcome was (at this time they gave Kennedy a 75-80% cure rate) by having Kennedy on a study, we could make a difference for future children with high risk ALL. Kennedy began COG AALL0232 arm DH within hours. Keith signed all the papers and we read them later just to get the ball rolling. Do we ever think we should have gone to Memphis? Sure. But we stand firm knowing that we made the best decision we could at the time with all the information we had. Chemo began right away along with a multitude of tests. During that week Kennedy had spinal taps, bone marrow aspirations, ultrasounds, an echocardiogram and x-rays. It was crazy! We met so many people from her “team� that we had no idea who was who. Everyone had an opinion, asked tons of questions and had lots of instructions. I was terrified to take her home. She was getting all kinds of medicines that I could not even pronounce let alone keep straight. I made lists of everything I needed to remember. She was terrified. She began making herself throw up every time she lost control of a situation or out of sheer terror. She was hurting, scared and felt terrible…and there was nothing I could do to help her. In fact, I was the one who had authorized all it and stood by helplessly as they poured toxic poisons in to her veins through a tube in her arm. I still could not believe this was happening to us.

One thing I did know…God was in control. When I was faced with the scariest of all demons, the possibility of losing my precious daughter, I turned first to God. And then, it all came back to me. The conversation with God in the car that afternoon. I knew right then, at that very moment, that God had a plan. I had no idea what that was but I knew without a doubt that many blessings would come as a result of Kennedy having cancer. I did not think it was fair, I did not like it, I continued to be afraid and I was mad but He was in control. I had to believe that wonderful things were going to come because of this trial. I did not know if they would be for me, Kennedy, Keith, Austin, my family, our friends or perfect strangers but I did know that He was going to use this experience to make a difference in someone’s life. He had a plan to use this hardship on our family to change the course of someone’s future. I decided right then that I could not believe in God if he made little children suffer without a greater purpose, so I would follow Him to witness at least one good and perfect thing that made every heartache worth while. I made a conscious decision to trust that even if Kennedy died because of her disease, it would be for a higher purpose or greater good for someone who would be lost otherwise. Now, understand that losing Kennedy would be one of my greatest sorrows and certainly the worst thing that would happen in my life so far, but I needed to know that if she died it would not be in vain. I made up my mind that I would follow God where ever he led me on this journey if He could promise me that astonishing things would come from all of the sadness we were about to face. And as I write this I can assure everyone that amazing blessings have occurred as a result. I have been willing to step out in ways I never could have imagined and have seen God do awesome work because of it. And you know what? I know for certain that His work is not done. I know that all of us, including Kennedy, still have work to do here. I have no idea what it is, but from what I have seen so far…it will be magnificent and it will be all for His glory.

This year has been the hardest, longest and most rewarding year of my life and I know it was because of my decision to follow God. Please do not think that I have always been happy with God or that I have always been upbeat and positive…if that is the picture I have painted I have done a poor job of expressing myself. I have spent many nights in a hospital bed watching my daughter sleep and working diligently to memorize everything about her in case she did not wake up in the morning. I have cried my eyes out to the point that no tears would come. I have begged and pleaded with God while sitting in a public bathroom to not take my daughter because I just wasn’t ready. I have watched as Kennedy has been poked, prodded, had tubes pushed down her nose, been force fed medication, laid in a drug induced sleep for days and held her when she became so terrified she lost all control of her bladder and vomited uncontrollably. I have seen fear in her eyes that I will never forget as long as I live…fear that haunts me. I have learned that cancer is one of the nastiest evils that exists but that it is not powerful. I have had the opportunity to discuss death, dying, heaven and my five-year-old’s mortality with her. I have watched families grieve as their children succumb to the cancer dragon. I have seen my strong, stoic husband melt in to tears as he holds the hand of our baby, and yet can not hold her because of the many tubes and needles needed to sustain her life. I have watched the disappointment in my son’s eyes because everyone remembers that his sister is suffering but have once again forgotten that he is hurting and missing out too. And I have watched him hold a bowl for his sister as she vomits while trying to choke down his own dinner. Every one of us, including Austin and Kennedy, can define and use appropriately words like neutropenic, TPN, nutrition supplements, intravenous, intrathecal, lumbar puncture, bone marrow aspiration, chemotherapy, liver enzymes, f & n, intramuscular injection, charcot-marie-tooth syndrome, absolute neutrophil count, hemoglobin, hematocrit, oncology, excretion, leucovorin rescue, veno-occlusive disease and CBCs. I’ve overheard Kennedy tell her 5 year old cousin, Emily, that she can’t come play this week because she’s neutropenic but that her counts are recovering and she will be better when her ANC is over 1000. We can all tell you what a normal WBC, RBC and platelet count are. We can tell you what precautions are necessary for an ANC between 200-500. Austin knows what fever and ANC will warrant a 48 hour hospital stay. He can also tell you exactly how long it takes to administer blood and platelet transfusions and at what point they become necessary. They both know the symptoms that indicate that Kennedy has low red cells or low platelets and needs to be tested. They both can rattle off what meds she is taking and the exact dosage and those she is allergic to. We have had to opportunity to stay on both sides of the pediatric unit more than 75 nights and know all the rules of the PICU. Kennedy has had over 50 red cell, platelet or plasma transfusions. She has had more than 100 pokes. We can tell you what food is good in the cafeteria and what to stay away from. We can even tell you who delivers to Emanuel at 1am! We have had all of the nurses on the oncology team many times, except the men, and know which nurse is taking care of Kennedy based on how her room is set-up when we arrive. We know which ones think the farting straw in the arm pit joke is hilarious. I have spent many nights away from my husband and son. We were in the hospital over Father’s Day and most of the summer. Kennedy was in the hospital on Austin’s first day of 3rd grade. Kennedy spent her 5th birthday in the hospital. Austin spent his 9th birthday at the hospital because his sister was inpatient. He did not get to have a party because she was neutropenic and everyone was sick. His entire Christmas break Kennedy was inpatient. Kennedy spent Christmas in the ICU totally unaware of the holiday and Austin spent Christmas morning without his mom and dad. All of these were things we never even considered possible before May 9, 2005.

But, God has done amazing work this past year. We have met the most incredible families fighting the same battle and have been fortunate to walk beside them on their journey. We have heard miraculous stories of children overcoming insurmountable odds. We have been blessed to follow the stories of children who did not survive 2005 but did more in their short lives than some people have the opportunity or desire to do in 80 years. My relationship with my children is stronger and closer than it has ever been. God has spoken to me through my children and I am a better mother because of it. My marriage has proven again that it is ordained by God and continues with His blessing. The many struggles we had in the past only set the foundation that kept us committed to seeing things through and not giving up when it would have been so easy to walk away. My relationship with my family is closer and richer. While I have had to let go of some relationships, some have been restored, others have become stronger and I have learned how to listen not only to those I love so much but to myself. I have learned what are realistic expectations and have learned to accept people where they are at. I have learned that children are resilient and if we would only listen to them they will lead us. I have learned that my husband is a provider, protector, leader and comforter. I learned that my son is not only a delight and joy, his love and compassion for others is inspirational. I have learned that my daughter is courageous, brave, optimistic and looks for something to smile about everyday regardless of the obstacles. My daughter has taught me that dying is not the worst thing…in fact, it can even be considered getting better. I know that God will provide…sometimes I can’t see it and sometimes He provides in ways I never could have imagined but He is FAITHFUL and always comes through. My faith in humanity has been restored. God has created amazing people who are so giving and not just financially but people who are willing to share their lives with us, their food (many, many thanks there!), their homes, their laughter and sometimes their shoulders and boxes of tissue. Everyone is unique and has talents that He can use in remarkable ways if given the opportunity. My faith has NEVER been so strong. I know this will not be the end of being tested but I know that I do not have to be afraid of what the future holds because He will give me everything I need. I have learned that a relationship with God is something that is continuous. We do NOT know everything or learn everything based on one crisis. Believe me, every time I thought, “ok, God, I got it now,� He would gently lead me, or sometimes take me kicking and screaming, to see that I do not have it and need more refining. My friendship with Him is in need of nurturing daily. I have learned that God’s timing is perfect. Nothing could have proven that more than the Defibritide showing up in the PICU on the evening of Christmas Eve. Now that is a story of faith and perfect timing! I have learned that I am not in control of my life and I don’t even want to be. I have learned that I can not be God to others no matter how badly I want to help them. I have learned that we all have a purpose and that if we listen, He will lead us in to that purpose. I have learned that some of the most kindred spirits live hundreds of miles away and some work at Emanuel hospital (Megan, Melissa, Lyndsee, Torey, Amanda, Tricia, Heather-both of you, Wendy, Stephanie, Darcie, Raeann, Brittian, Nellie, Libby, Louise, Sam, Suzi, Colleen, Mona and so many more). Angels are everywhere and if you look close enough you will see that they touch your lives everyday. I have learned that I can do all things with Him who strengthens me and that life is so much easier when I do not lean on my own understanding or try to light my own path. This has been an awesome year…a year of hope and disappointment, a year of sadness and great joy, a year of growth and learning, a year of balance and stumbling and my life will forever be rich because of May 9, 2005.

In Faith-Hope-Courage,
Mel