Courage for Kennedy – Journal


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