Courage for Kennedy – Journal


January 17, 2008

Please pray for Gage

Category: Treatment – Melenie 10:48 pm

If you have been a reader of this blog for very long, you know about Gage.

He was treated for Ewing’s Sarcoma while Kennedy was in intensive treatment and we had the opportunity on more than one occasion to get to know him and his mom (and his dad sometimes) through being inpatient, the DTX and in the clinic. After successfully going in to remission, 6 months post treatment he was diagnosed with treatment induced AML (another form of leukemia than Kenne’s) was needed a bone marrow transplant. He again beat cancer and seemed to be doing well. However, today, during routine scans, a mass was found in the original location of his Ewing’s Sarcoma. This is NOT good. While there is a very slim possiblity it is benign, that is not likely. They are actually hoping that if it is cancerous, that it will be lymphoma (treatable by surgery and chemotherapy, right Devon?) and not a recurrence of Ewing’s which has a poor prognosis. Surgery will determine what the next step is.

Please join us in praying for Gage and his family and I encourage you to visit his website here.

Faith is believing in things when common sense tells you not to. ~George Seaton

Things are going great!

Category: Treatment – Melenie 1:25 pm

Sorry for the lack of update after surgery. Kennedy was such a trooper and we are so proud of her! There was a bit of confusion about where we were supposed to be (apparently they had scheduled her for DTX at 8am but no one called us and we went to short stay at 9am like we were told.) It worked out but it would have been easier to be there at 8am and get her Pentamadine done before surgery. Everything came together though and it was fine!

The surgical nurses went on and on about how mature she was…more like a teenager really. She wasn’t worried or anxious and acted like the whole thing was no big deal. We’ve been discussing the port coming out for some time so she was now comfortable with the idea and being sedated is old hat for her so she didn’t much worry about that either.

However, Kennedy has developed a horrible sensitivity to any kind of tape (doesn’t even have to be latex) and where the monitors were attached the skin was really eaten up…and they were only on for 20 minutes. They could not believe it. So, rather than add any more insult to injury, they taped her incision closed. They already had to tape an IV to her hand so they figured the less they had to do the better. Her skin recovered and looks much better.

The first few days she couldn’t stand to look at her incision. She would close her eyes when changing and only where shirts that did not allow for her to see it. Gradually as the redness and swelling went down she felt better about it and was ready to take a bath without freaking in 3 days. It looks great now and the glue is doing a fantastic job with no irritation to her skin.

On a fun note, Friday when Keith was home (he was able to have Thursday and Friday off) she was riding Champ bareback and came in to tell me her hair was blowing on her face and she loved it! She has not had hair in her face for over 2 years! She said it felt so good 🙂 Nothing could have made me happier at that moment.

Well, I have returned to school…ugh! Back to the grind! Better get crackin’ on that homework!!

Mel

January 7, 2008

Surgery on Thursday

Category: Treatment – Melenie 11:10 pm

We met with the nurse practioner today to go over Kennedy’s surgery on Thursday…basically we drove an hour, waited 50 minutes for about a 10 minute appointment. Ugh! They didn’t even do blood work, odd for us after the fact that every single appointment she has had at Emanuel for the last 2+ years has required a port access and blood work.

She basically let us know what is involved in a port removal (not much) and that Kennedy would be down in surgery approximately an hour then when she woke up they would be taking her to the Day Treatment Unit (DTU) for meeting with the oncologist and get her last dose of Pentamadine (antibiotic that she has had to have infused every month since her diagnosis). Woo Hoo!

Kennedy was feeling better about the idea but is still apprehensive (as I would expect her to be). The NP told her that Dr. Bliss would let her have her port if she wanted it…of course, Kennedy said yes! Silly kid! This is also the same kid that insisted on keeping her radiation mask and actually wants to paint it and make it in to something…like a lamp. I just don’t understand where she gets these ideas!

Wow…this is like the last step to a “cancer” free life. My last security blanket. Hmmm…

Please pray for no complications, no infections and freedom from anxiety for mom.

Hope-Courage-Faith,
Mel

January 5, 2008

We’re Finally Back!!

Category: Treatment – Melenie 9:12 pm

Oh, to be writing again! How good it feels!

I apologize as I think this is the longest I have been away from writing on Kennedy’s site ever. We changed internet providers (no dial up for us! Oh, no…we are in the 21st century, baby!) and when that happened I somehow lost my password to Kenne’s site. I had just stayed on and not logged out and when I went back after changing, I could not for the life of me remember the password. My dear friend, Becky, is the administrator and we have both had such full plates the last few months that we never got in touch to get it fixed…but guess what, it is fixed now!!!

Wow! What have we been up to? Well, we finished rodeo season, Kennedy had a birthday, our niece, Devon, finished up chemotherapy and radiation, we had a great Thanksgiving and Christmas, Austin turned 11, we had soccer season, I went back to school, Kennedy returned to ballet and danced in the Nutcracker, we got 2 new baby horses (Hope and Running Deer)…and I’m sure there is much more.

Let’s see…how has Kennedy been…pretty good actually. She is handling being off treatment much better than I am. She LOVES not taking pills and her hair is growing so fast. I just have lots of anxiety about her leukemia returning now that she is not taking any more chemo or I worry about the long term effects (learning disablities, brain tumors, secondary cancers, cataracts and optic nerve damage, walking issues, reproductive health, heart damage, her liver, balance and coordination, etc.) However, for the most part…she is doing most excellent. True, she does have some issues with learning disabilites (especially with her ability to process information which is becoming most evident as she is learning to read), issues with fine motor skills and large motor skills (walking, dancing, running, balance, coordination). In fact, the topic of having her tested for Charcot Marie Toothe Syndrome has been discussed again as Kennedy is having no sign of returning reflexes and the nerve damage in her legs and feet is no improving…it even appears that other issues are showing up such as the fact that her left foot seems to be turning in ward. Her leg braces are too small but we are stretched financially and having a hard time figuring out how to afford new ones. Thank goodness it is almost time for our income tax returns although it is not how we intended to spend it. Cancer wise she is doing very good. Her counts and bone marrow are recovering and her immune system is at about 60% now. We will be checking what immunities she still has from her vaccines although we won’t be able to catch up until next October. She has several that she has already missed so I’m sure she’ll be thrilled about that.

She is growing so fast now, it’s as if she is making up for lost time. Her hair is FINALLY growing and looks great but it is not long enough to put up and too short still to look truly “girlish.” She had a wonderful birthday and was thrilled to have a “real” birthday party this year with bowling, pizza, cake and ice cream, friends and lots of playing and laughter. It was fantastic! She is also still homeschooling and while some days it can be just crazy, she is doing great. We took a break from occupational, physical and language therapy but her oncologist urged us not to take too much time off so that Kennedy does not regress at all. We also had her first post treatment echo and it was normal which was great. They remind us that many of the long term effects (brain tumors, heart damage, cataracts, etc.) will not show up for some time. She still has to see the Opthamologist but she hates it so I have put it off…guess I’ll have to get on that. For the most part…it is all good for her. It’s so great to see her feeling “normal” again.

So, it’s back to ballet. She performed in the Nutcracker in December and loved being both a mouse and little snow. The rehearsals and crazy schedule were exhausting but she enjoyed most of it. She did have one hard night where she just could not seem remember what she was supposed to be doing (having 2 parts was very difficult) and just got yelled at by the director the whole time. She held it together at rehearsal but the minute we hit the car she was bawling. I felt so bad and almost pulled her but realized that it is really a learning part of life and she did recover. Not only that, but she went over her parts again and again and did just beautifully in the performance. It was difficult for her to process so much and then remember all of it especially if someone else did not do their part. She had identified clues around her to remember and when someone messed up it confused her. She had a hard time keeping up on some parts but I know she did her best and after the one bad night, the director realized she was truly working as hard as possible.

Let’s see…mostly we have just been crazy busy. I returned to school and can not wait for it to be over. My heart just isn’t in it anymore.

Well, there are dishes to do and kids to run to bed…hopefully now, though, this will be updated more frequently than every 4 months!

Oh, how could I forget! Kennedy has surgery on Thursday, January 10th to have her port-a-cath removed. Please pray for her as she is not happy about this at all. She had her port put in when she was just 4 and truly believes it is part of her body. As far as she is concerned, we might as well cut off her arm! I know she will be fine once it is over but for now it is hard. Devon has her’s out on Monday so hopefully that will help Kennedy. Also, as she is still seeing the oncologist once a month (checking for recurrence) for the first year, she is not happy about having the blood drawn from her arm instead of her port. We will continue with the Emla cream so that should make the transition easier. Oh, and we had 2 ER visits recently. Not for anything big, she had a fever (b/c of her port we had to go) and for vomiting. Turned out just to be a bug both times.

We hope you all had a Merry Christmas and we are praying for a marvelous new year!

Mel

www.onerisingstarcowboy.blogspot.com
www.igotsomethingmore.blogspot.com

September 14, 2007

To Laughter

Category: Treatment – Melenie 12:24 am

Like a ray of sunshine piercing storm clouds
She shines in the darkest days
Facing Hell’s demonic wrath
with the courage only a child can muster
Unaware, death is lurking
behind every curtain
every door

Her hair no longer crowning her head
Her eyes dance deep in their sunken caverns
Scarlet as a red bloom her cheeks burn
with an inner fire
Yet she laughs and her delightful
sound echos off sterile white walls
down halls reeking of hopelessness and despair
it revirberates from IV poles and
bags of Methotrexate and platelets

Her laughter, her giggle, her hope
midnight is lifted by the melody
Eyes turn, ears hear and hearts
seek her song
Her laugh pushes back death
pushes back sorrow
Pink, yellow, lavender color her world
unaware of black and crimson
she laughs

Laughs with heart
with her whole body
Pain can not rob her of it
Despair can not steal it
The blanket of hopelessness has
no power here

They fall, run, stumble and scurry
for their caves
Chased by chiming bells breaking
the silence
You can not help but smile
You can not help but persevere
You can not help but hope
Your heart desires to tag along with her
to chase the future
To follow her spirit as it is
lifted beyond the
pokes, the scars, the heartache, the cancer
She knows the way
Follow her

September 6, 2007

Yes, another update!

Category: Treatment – Melenie 10:23 pm

While I should be writing for my literature class…I am finding ways to avoid it and this seemed like the perfect place to start! That and I am truly trying to be better about updating…

Here we are…two weeks off chemotherapy. Kennedy had her very last pill, last lumbar puncture and last bone marrow aspiration. All went off without a hitch and Kennedy was cancer free on August 23, 2007. Whoo! With gifts and balloons and a very grumpy girl we said so long to cancer treatment. I thought I would be terrified…remember my last post? In some ways I am but in many ways I am excited and full of hope for Kennedy. I wish so many wonderful things for her new life and her new chance. I wish for her a life of happiness and joy. Rascal Flatts sung it best in their song…

“My Wish”

I hope that the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you’re faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin’ till you find the window,
If it’s cold outside, show the world the warmth of your smile,
But more than anything, more than anything,

My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you’re out there getting where you’re getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God’s grace, in every mistake,
And you always give more than you take.
But more than anything, yeah, and more than anything,

My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you’re out there getting where you’re getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

This is my wish
I hope you know somebody loves you
May all your dreams stay big

I wish this for both Austin and Kennedy. They have endured so much and deserve a life rich with love, happiness and adventure. They have earned a life of joy and peace and that I wish for both of them.

We are doing well for the most part. Kennedy continues to have health related challenges due to treatment and there seems to be no end in sight for those. We will be taking about 6 months off from occupational and language therapy to give us all a break and allow Kennedy to have the opportunity to be a little girl. She was only 4 when she was diagnosed and spent so much of her time consumed with treatment and it’s effects that she just needs time to play and learn. The truth of it is, that she could and would benefit from a life time of physical, occupational and language therapies but I would like her to have more. So, a break is in order. We will continue with an aggressive home program and see them every 12 weeks but I will allow her to just focus on being a kid right now. Good timing, too, since ballet is starting and Nutcracker is right around the corner 🙂 We don’t have all the skinny on the scans of the future but I know that they will include blood tests on a very regular schedule for the next 5 years and then yearly after that, an echocardiogram every 2 years to check for heart damage from chemotherapy, yearly eye exams for cataracts, bone density scans and neuropsych exams on a regular basis…not to mention therapy. Hmmm…so much for being a bump in the road. But…we have KENNEDY!!! She is here and growing and thriving. She walks and runs and plays and talks and eats. She loves and hugs and kisses and cuddles. She screams and cries and has outrageous temper tantrums and I am happy she is here to do all of that and more. I am grateful and very, very lucky and very, very thankful. Did I mention I am thankful?

On another note, for those of you who do not know, Kennedy’s cousin (Keith’s sister’s daughter) was diagnosed the end of June with Stage II Hodgkins Lymphoma. Devon is 12 and is also in a COG research protocol. She recently finished chemotherapy and had her final scans last week. If there is ANY cancer still there she will endure more chemo and radiation so please pray for free and clear scans for her. As with us, this has taken an enormous toll on them including financially so many prayers for that are needed. We have met with a geneticist and while it is extremely uncommon to have 2 members of a family with blood related cancers, there does not appear to be significant evidence that it is genetically linked and that neither Austin nor Chance are at a higher risk of having cancer than anyone else. It just is terrible luck. One benefit is that we know EXACTLY how they feel and can understand where they are at and can help them as much as possible.

Oh, and please check out this video that some moms I know put together for September which is Childhood Cancer Awareness Month. You will not be disappointed…I promise.

In His hands,
Melenie

August 20, 2007

Thoughts on Ending Treatment…

Category: Treatment – Melenie 2:54 pm

I was going to take this time to update on Kennedy’s medical front but with her off treatment day barreling down, I thought I would take this time to reflect on some of the thoughts and emotions that are weighing on our minds and hearts…

“Off Treatment” no words ever sounded so glorious and so terrifying at the same time. As we sat in that family room in one of our first meetings and heard Dr. Chu say that Kennedy’s off treatment day was more than 27 months away our hearts sank to our knees. We could not comprehend the idea that Kennedy had cancer or that her treatment would encompass nearly every day of her life until she was almost 7 years old. It was literally incomprehensible. There are simply no words to describe the hopelessness and despair you feel at hearing your child has cancer. Then to find out that this nightmare had almost no end in sight was more than devestating. We wondered in those next weeks and months how we would possibly survive until the day came when Kennedy would have not a single chemo pill to swallow. As we fought her to take a multitude of pills sometimes redosing after she would make her self vomit, crushing them night after night or diluting them to the point they would safely pass through her NG tube we could not possibly get to the end of this nightmare fast enough. The days and nights and weeks spent in the hospital while she endured 24 hours of continuous chemo, raging, uncontrollable fevers, intolerable pain from weeping sores both inside and outside her body, unable to eat, sleep or even sit without tears and crying or the dreaded “leg pokes” and blood draws and IVs when things went wrong seemed to go on and on and on and on with little hope of ending. But through it all, one day stood out as a beacon of light, a lone tower of hope rising from the darkness of despair…August 23, 2007…the day when life could safely return to normal and we would all breathe a sigh of relief for Kennedy and for all of us…and the day is coming…quickly.

I have watched many, many families pass the day with much fanfare and much worry. No longer under the safety net that chemotherapy provides in keeping the dragon at bay, we must open ourselves up to a world without the shield of poison and hope that all of the swords, daggers and cannons we have aimed at the beast have caused it’s demise and not just sent it in to retreat where it has hidden in the deepest caverns only to gain strength and a new endurance and return with a fierce vengenance. We have seen that happen as well. We have to trust that we have pulled every last scale from the dragon in every hidden corner and dark crevace and ripped every ounce of life from it so that not even a sliver can regenerate and regrow the evil beast anywhere. We have given Kennedy every first line defense currently available. We have soaked her blood with poisons that would devour flesh and scar it forever. We have killed every fast growing cell including the leukemia, her hair, her nails, her skin, her bones and even those in her brain in hopes of destroying the beast forever. She has endured countless pills (more than 2,000), 22 spinal taps with toxic chemotherapy, 8 radiation sessions, 45 doses of IV Vincristine, 4 doses of IV Daunorubicin, 11 (22 total-1 in each leg) shots of PEG, 26 weeks of Dexamethasone steroids, 32 doses of IV Ara-C, 4 IV doses of Cyclophosphamide, 4 high doses (24 hours) of IV Methotrexate, 5 doses of escalating amounts of IV Methotrexate, 6 doses of Doxorubicin, 2 weeks of Thioguanine (6TG) which almost took her life, and countless doses of oral 6MP and oral Methotrexate. We have been assured that we did EVERYTHING possible short of a bone marrow transplant to kill every single last leukemia cell in her body. And the end is almost here…can you imagine how we feel about that?

Kennedy is beyond excited to eat ice cream after dinner! This has been impossible due to her medication. She can’t wait to have hair again! I told her we are going to clean out Claire’s as soon as her hair will hold a clippy. She is thrilled not to have any more pills to take and no more days of feeling like she is going to throw up all day. She wants her energy and strength back and to be rid of her orthopedic braces. She is a girl with a mission!

Austin looks forward to less whining, no steroid rages and fewer appointments to sit through. He wants to never be told again that we can not go somewhere or have people over because of germs. He wants to eat and play at Chuck E Cheese.

And Keith and I? We look forward to all of that and more! And yet chemo is a double edge sword. We hate it and we love it. It has at times made our lives a living hell and yet brought assurance that as long as she took her pills, had her IVs, etc…it would stay away. And now that dreaded, smelly, stinky, yucky security blanket is about to be ripped away from us. I told Dr. Norwood that I can’t wait for her to be off chemo so her hair will grow back and in the same breath asked him if he could just keep her on a low dose forever and ever until she dies a little old lady. They can’t and he won’t. So, we are excited and terrified in the same moment.

I hear, and please feel free to chime in, that many parents feel the same sense of joy and dread. We know that they will be checking very closely (every month the first year, every other month the second, every 3rd month the third year and every 6 months for years 4 and 5 off treatment) and we also know that if a child is going to relapse, it is often going to occur in the first year. I told the doctor I did NOT want to be blindsided again and he assured me that if she relapses I would be. He said we will not see it coming. I think he meant to cause me less worry (I have no control over it so don’t worry about it) but he only made it worse. I HATE walking blind. It is all about stepping out in faith. Trusting that the doctors and us have done everything we can and it is in God’s hands now. It was always in God’s hands, that is true, but you can’t keep a mama from worrying about her babies.

I have more to share…more to comment on…and more going through my mind but just not enough strength to keep doing it right now…

In His hands,
Melenie

August 13, 2007

More News From the Front…

Category: Treatment – Melenie 1:05 pm

Let’s see…where did I leave you all hanging…oh, yeah…what we have been up to fun wise…what else have we done…we’re finishing up rodeo season. Oh, we attended the first 10 mintues or so of the Grand Floral Parade…that is actually a funny story now! We went early (as always) to hang out and visit with my auntie Sue and Ashley while we waited for it to start. We had a blast despite the pending showers and crummy weather (why is it always either rainy or smokin’ hot?) and enjoyed blowing bubbles, drawing with sidewalk chalk and eatin’ but as usual the parade did not start on time and by the time it made it’s way to us…it was time to leave for Austin’s first bull ride with OJBRA in Lebanon. Ugh! We were able to watch it later on TV but were so bummed for missing Sammi and the Centennial High School band! 🙁 Hopefully next year!

Hmmm…I know we have done so many other things that were fun and eventful but my memory is elluding me at the moment 🙂 Oh, we had a wonderful campout with the Barber family at Ft. Stevens. Sure, it rained but we managed to stay dry and the kids had a great time exploring the scary old fort site. Seriously…you could make the best scary movie there and I can’t believe that no one has yet. Breanna even got me when we were walking around and behind us she very slowly opened an old creepy door and almost scared the pee out me literally! It was fun and we can’t wait to camp with them again. Their son has been one of Austin’s bestest friends since kindergarten and his sisters are right at Kennedy’s age and they all play so well together.

Let’s see…our dear friends the Schrepfer’s moved back from Missouri this past week or so and we just can’t wait to hang with them again. We missed them terribly and are so excited they’re home!!!

We have been homeschooling this year and I am amazed at how much we have all enjoyed it. Kennedy has just grown in leaps and bounds and is right on the cusp of being ready to read. With her learning challenges we have had LOTS of repetition but she has progressed steadly and surprised us all. She has just flown in math and loves writing in her many notebooks. We went through some curriculum changes with Austin but once we found what was going to work for him he just took off as well. He has loved geography and learning about different climates and cultures but especially lots about animals. Grammar continues to be a struggle and it is hard on me as communication is key as far as I am concerned. We have plenty to keep us busy through December and have decided that homeschooling year round is really better for all of us. We had the best time at the Oregon Coast Aquarium’s Homeschool Day where the kids got to get up close and personal with animals, make crafts, structured labs where they learned more about the food chain and actually got to touch animals and we even watched a Blue Shark dissection. It was soooo cool! We’ve been to the zoo as well and are planning on purchasing a family pass this year as a family Christmas present. Hmmm…

We went to the Wiggles concert, 2 Beavers games, Blazers game and a modern ballet performance courtesy of Candlelighters and Children’s Cancer Association. We’ve just had fun, fun, fun all around.

I actually went to work this summer (I know…a paying job!) to help cover the continued expenses that Kennedy has and while it was (and is) a difficult adjustment for everyone it does help some. I am also planning on returning to school this fall to finish my BA before so much time passes that I just can’t go back.

Hmmm…medical updates to follow this one so watch this space!!!

Mel

August 2, 2007

We are really here!

Category: Treatment – Melenie 3:57 pm

I can hardly believe that it has been so long since I updated this site. WOW! Is there anyone out there still reading? I do hope so! Actually, there must be as I have had several e-mails from you all wondering what in the world is happening around here 🙂

Well, since February…a lot! Lots of good and some crazy stuff and of course, the usual as well.

I have been continually amazed at how much life can start to seem like normal again. Instead of cancer being a constant in our lives, it comes and goes and comes and goes. I know after talking with other families post treatment that it never just goes away (especially with the long term effects rearing up) but there comes a day when you can carve out a new normal. And here is ours…

Let me start with some of the fun things we have been up to…our horse, Chaz, came home and life has not been normal since! He is such a delight and this fulfills a life long dream for me. He talks to us every morning, noon and evening…almost every time we see him and we all have had a fun time riding him around the Christmas tree farm or on the 56 acres of trails at our neighbor’s house. We also acquired a pony, Champ. He has his delightful moments 🙂 He is an old boy that would like nothing more than life as a pasture pet with occasional trail rides, but the kids have dubbed him a rodeo horse 🙂 He does fantastic for Austin but really gives Kennedy a lot of trouble! Part of it is Kennedy does not multitask well and he takes full advantage of that!

Let’s see…we went to Seaside for 5 days…the weather was fantastic and we played and flew kites and swam in the pool all week. We spent 4 undescribable days at the Children’s Cancer Association Caring Cabin in Pacific City, Oregon with my parents, my sister and her family and my auntie. Again, the weather was amazing and the house was beyond even my unlimited vocabulary! It was like something off of Extreme Makeover or the Street of Dreams! If I ever get a decent internet connection I will flood this website with pictures. Oh, we also went to Montana for 4 days…can we say HEAVEN ON EARTH! We were there Easter weekend for Aunt Amy’s wedding to Alan…Congrats…and it was beautiful. The wedding and the state! Keith gave his sister away…an honor he was beaming with pride over and she looked incredible. Alan is a perfect choice for Amy and we are so happy to acquire another nephew and two nieces. It was good to visit with his mom and his dad’s family over the holiday weekend. What a long drive though!

Oh, how could I possibly miss this! Kennedy’s one true wish came true when KUPL helped her have a private meeting with her most favorite star ever…Gretchen Wilson! She was in town doing a fundraiser at Duke’s for Doernbecher and did a lunch concert for about 40 people at Big Al’s in Vancouver and KUPL got us in to the event. A HUGE thank you to John Paul who made it all happen. Kennedy was in line to have her picture taken but was so overwhemed by the crowd that she started crying. We waited outside while everyone went through then Kennedy was allowed time alone to talk with Gretchen! She is so cool! Really down to earth…like you could invite her to your own backyard BBQ! She signed a couple of autographs (including the picture that Kennedy carried everywhere from the concert Nurse Megan went to) and took a picture and gave Kennedy her guitar pick she used that day. It was so cool. Kennedy had a funny comment to make but you’ll have to ask about it privately!

Mmm…what can top that? Rodeo season started…Kennedy is doing barrels and goat tail tying this year. She will only walk the pony (she has already fallen off twice) but she has more heart than any other kid I know! Inevitably Champ will avoid the goat and blast the end of the arena where someone will have to catch him…Kennedy is NOT detered by this and just jumps off, runs to goat, catches and holds him and ties his tail. She does NOT care that she probably has the slowest time of all the PeeWees…she just got r done! Kennedy’s therapists have repeatedly said that Kennedy has no understanding of the phrase, “I can’t.” It is not even in her vocabulary. Come hell or high water she will see it through till the end!

Austin is again competing but seems to have a bad case of the “sophmore curse.” He had an AWESOME rookie season and even acquired a few sponsors but this year it seemed to elude him. Opening weekend in St. Paul he rocked right in to 2nd place in both bulls and bareback and did decent in barrels and goats, but just crashed after that. He rode in several more NYRA events (Clark County and both Spirit Mountain rodeos) but failed to cover even on horses and steer he just rocked on last year. He competed in Lebanon at the Oregon Junior Bull Riders with much bigger steer and looked fantastic but was always 1/2 a second away from getting a score/time. He also competed at WVJRA in Molalla and his form was beautiful but his steer stopped and his free arm swung back hitting the horns and disqualifiying his time. Then he was plagued by steers that laid down either in the chutes or just outside in the arena. He could not catch a break! But it was all over Saturday when he tumbled off his steer after qualifying and cracked his right collar bone in half. I knew something was terribly wrong as I have seen him take much harder falls and though he jumped up, he would not move his arm and could not stop crying. Now, if you know Austin, crying just ain’t his thing. I have seen him cry initially when injured but as soon as he realizes he didn’t lose his eye (when he split his cheek bone open), or his teeth (splitting his chin open) or his arm (horrific case of road rash down his side) he stopped and wondered what all the fuss was aobut. Not this day. He did stop on the way to the ER and was even moving okay but something was not okay. Keith said he was sure it was bad when he saw the lump on Austin’s shoulder. The ER doctor and nurses thought he had just pulled his shoulder as he was so calm and not crying or wincing over it. In fact, they thought I was being over cautious for asking for an x-ray! Never mind that they assumed we were crazy when we said he had fallen off a bull! One nurse thought we meant a bowl! The doctor asked if it was alive! The x-rays came back with a clean break and even then the doctor said he has never seen a kid Austin’s age so under control with a broken bone. Like father, like son! He was hurting really bad that night and for the next few days but he’s up and raising Cain again. Oh, and we made it back in time to watch Kennedy run barrels with Chaz. 🙂

Well, that’s just a teaser and I’ll update more before heading to bed tonight. We have to be up early though so Kennedy and I can head to Santiam to cheer on our hope for Miss Teen Oregon Rodeo…Tenisha!

In His hands,
Mel

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.