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!

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.

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.

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

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

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

In His hands,
Melenie

I was going to update tomorrow but since I know that if I put it off until I have tons to write, I only want to put it off more so here is the latest and I will plan to update this weekend.

Well, the snow is gone and the sun is shining. You would think that the kids would be heartbroken but this was the 5th or 6th time it snowed already this year at our house and because they homeschool they don’t get snow days so it’s not that exciting anymore…plus, mom won’t go anywhere in it so if they want to do something they have to wait until dad gets home and after working since before the sun rose he sure as heck isn’t going anywhere to do anything. I wasn’t a complete “Shrek” (as Kennedy likes to call us when we are being mean 🙂 after all, I did let them play in the snow and cut back on how much school work they had to do. We did miss 2 weeks at the clinic for counts checks and at least one pt and ot session-thankfully we are at a point where we can miss and nothing too serious will happen.

Kennedy is doing well in OT. She struggles and it is hard work but she perseveres and does not give up. We will be starting a new program for her that her OT has recommended called “Handwriting Without Tears.” For those of you who are homeschoolers, you have probably heard about it or use it yourself. While Kennedy can write most of her letters and numbers, her inability to hold her pencil correctly due to weak grasp in her fingers has caused her to form the letters incorrectly. She grasps pencils, crayons, her toothbrush, her utensils, etc. between her thumb and hand and uses her fingers for balance. She uses the strength in her wrist and forearm to do the things she wants to and because she already has weakness in her hands and arms, she tires quickly. We have purchased plates with high sides to help her and thick handled toddler utensils but she does give up soon and eats with her hands. Very frustrating considering she ate with utensils great when she was 2 years old. She is working hard and truly desires to regain those skills and I know she can do it. I’m just so thankful we didn’t have to wait any longer to get her started!

She had PT with Amy today and was just a bundle of energy! Amy re-evaluated Kennedy with the test she did in August to see if Kennedy was progressing. We both have concerns that she may have maxed out her potential at this point. She is doing well, but not really progressing anymore. Amy feels that Kennedy could be in PT indefinitely and while she would gain some benefits from it, she needs the opportunity to be a kid! I couldn’t agree more. And if she is not making headway, this may be a good time to change the plan. So, we are thinking (and I am praying) and we will regroup next week but it looks like we may do another month and then continue with a home program. Amy thinks we may be able to go as long as 6 months between evaluations but I would like to see us closer to 12 weeks. For a home program we will continue with ballet as she is gaining/maintaining coordination, balance and strength, we will also do horsebackriding, of course, for those skills and we have discussed swimming lessons to help with muscle development. We will continue with the yoga program as that helps in the above areas but also with flexibility and her attention/focusing skills. We definitely plan to see Amy (and hopefully Sean) outside the hospital as we have come to love and adore her very much. It really is a waiting game but it appears that Kennedy will continue to struggle with balance and coordination for many years. That’s ok. Her braces are made to last about a year and she is wearing them every day and doing much better with them on. Plus, you sure can’t beat disabled parking! 🙂 There has be a bright side after all! So she won’t be a triathlete or walk a tightrope…I can live with that!

Let’s see…tomorrow she has her back poke. Yippee! 🙁 She doesn’t mind, in fact, she runs to the procedure room, hops on the table and helps them set-up! What a goofy girl! Who would have guessed that a spinal tap and chemo would be so routine? I remember when it was the most traumatic event of the week! For me it is still upsetting as I know that it is possible for tests to come back with leukemia in her spinal fluid but it is also a reminder of how bad things have been. You know, we go along for 3 months living the good life and this just takes me back to the first days of her diagnosis when back pokes were just one more new thing to adjust to. One more thing I wish I could have gone on being nieve about. It just stinks. But it is over quickly, the results are in the next day and we go back to being happy go lucky for another 12 weeks!

You know, I was looking at pictures the other day of Kennedy before she was dx’d and it was so weird. I mean, I have scrapped pictures from her first 2 years and seen her but she was really still a baby. These were pictures of the year before we found out. She was so blond and so chubby. She was so happy and giggly and was often holding tight to her brother. It looked like somebody else’s child. I know that sounds strange but it was like I had no idea who that little girl was. When I think of Kennedy I only picture her the way she is today. She has been totally bald or had very short hair for well over a year and a half. When her hair has grown in, it is not the same hair she had. It was so strange. Even Kennedy looked at her pictures and commented about how different she looked with hair. She also kept saying she was sick as if that is all her life has been.

When she was first diagnosed, the thought of losing her hair was devestating to her. She was worried she would look like a boy and not look like her mommy (everyone called her my mini-me). When it fell out though, she wasn’t too bothered and was actually relieved when it was finally all gone. We let her cut it a couple of times and you all remember the time she cut it and stuffed it in her brother’s dirty sock! She liked the freedom of being bald (not having to deal with hair in her face, washing it, tangles, have her hair put up) but when people stare at her she is reminded that she is different and she doesn’t like that. She hates being called a boy and her and I have resorted to “boy comments” with “she’s a girl, thank you, she has cancer.” That shuts people up in a hurry. I use to be nice about it and worry about others feelings but decided that it is not her fault and it is her feelings I am really most concerned with. She has worn her fake hair occasionally and has loved the shock value of removing it in public! The other night we took her out to dinner (her brother was staying the night with a friend) and a woman came up to our table and said she had been looking at Kennedy all night and had to tell us what an amazingly beautiful daughter we had. She described Kennedy as angelic. We all graciously thanked her and wondered if she knew how much it meant to Kennedy. People do comment to her that she is beautiful but that time it really made an impression on Kenne. Many times she has commented that she doesn’t feel pretty, she wishes she had long hair or that she just looks ugly (when she had her feeding tube) and as a mom it just breaks my heart. We never think of it at home but I have learned that people are definitely a different breed. I never thought about what it must be like for someone in society to be different until Kennedy went through this and it can be really tough. While I haven’t said anything, the hair loss has bothered me tremendously. I have hated the way people stare or comment. I hate that no matter how good she looks during treatment, the fact that she has no hair tells everyone that she has cancer. You don’t think it does and you all can say it doesn’t make a difference but it does! People (imperfect strangers) have asked us what kind of cancer she has just because she is bald (or has short hair). One of the things I have struggled with as a result (and knew would be a problem from day 1) is that I HATE that people look at her and see her only as a kid with cancer. As if that is who she is! That is such a small part of Kennedy. She is a daughter, sister, granddaughter, niece, cousin, friend, ballet dancer, horseback rider, rodeo queen, student, lover of books, princess, artist, hair and make up stylist, fashion designer, she is imaginative, thoughtful, funny, smart, loving, kind, she loves horses and dogs and cries when she sees them being hurt on TV, she wants to be a mommy and homeschool her kids, she loves pink and wants to grow up to be a princess and somewhere in there, really small and if you look real close, she is also a warrior and is working to win the battle with cancer but it is NOT who she is. I wish they could see beyond the hair. You know, maybe God is working in me by not allowing her hair to grow back all this time. We know kids who have never lost their hair or who have beautiful full heads of hair during maintenance and no one knows they are sick but maybe God is working on my own vanity. Hmmm…not fun. Or perhaps He is speaking to me through my children again. I LOVE that He uses my children to teach me. How they teach us with their spirit and all their innocence. Who couldn’t help but love that? Kennedy has been commenting lately that she plans to grow her hair long and donate it to Locks of Love so other kids don’t have to be bald if they don’t want to. She also plans to grow up and work for Santa making dolls with removal hair for kids with cancer 🙂

Well, as you all know, I could go on and on and on and on but the night is late and tomorrow is a long day.

In His hands,
Mel

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

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

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

2. Kennedy is here and thriving.

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

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

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

6. Austin survived the rodeo season with minimal injuries.

7. Austin survived baseball and soccer with minimal injuries.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

25. For a life full of blessing and richness.

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

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

Love-Hope-Faith-Courage,
Mel

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

“PRESIDENTS CORNER

President’s Corner

Past President – Dick Hartung

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday December 17, 2006
Matinee Performance 2:30 PM

10th Year Anniversary!!!

Nutcracker Tickets

There are 5 ways to order tickets:

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

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

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

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

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

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

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

Make Checks Payable to: THE NUTCRACKER

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

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

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

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

Questions? Call (503) 594-2909

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

Love-Hope-Faith-Courage,
Mel

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

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