Courage for Kennedy – Journal


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.

February 8, 2007

Counting Down until END OF TREATMENT!

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

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

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

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

In His hands,
Melenie