Courage for Kennedy – Journal


July 13, 2006

What a Blast!

Category: Fundraisers,Gratitude – Melenie 11:21 pm

We had such an amazing time tonight at the Charlie Brown musical sponsored by Prayer For The Children. There is truly some amazing talent in that show! The music and singing were exceptional and every one of us loved it. They are characters we all grew up with and loved and the songs are fantastic. Snoopy was great and was just full of boundless energy. I do hope everyone gets a chance to catch the show this weekend before the cast returns to school. If you don’t, you will really be missing something!

Kennedy was able to come early and meet the cast and while she was excited all day, she was very shy when we arrived. They had this really huge chair for a prop that we hoped she would sit in but she had no interest before the show. Only about the time the show was about to start, then she wanted on stage! Isn’t that just like her? She eagerly went up during intermission to draw for the raffle and didn’t even mind that there was an audience 🙂 She loved the show and even began dancing when Snoopy was singing about his “Suppertime.” After the show, the cast met her again on stage and she was a lot more friendly. She gave Andrew a “Courage 4 Kennedy” t-shirt and handed out bracelets to the cast. They loved them and she took a lot of care in choosing just the right color for each person. They also signed a copy of the program for her and we joined them for cake at the “Opening Night” celebration downstairs. Several people came up to meet us and wish her well as she continues her battle. She left a very tired but very happy little girl.

The show was wonderful and children of all ages would find it very entertaining. I do hope you all get a chance to see this amusing production!

Hope-Courage-Faith-Love,
Mel

July 12, 2006

A Musical to Honor Kennedy! Come and Join Us!

Category: Fundraisers,Gratitude – Melenie 9:41 pm

“You’re a Good Man, Charlie Brown”

July 13-16, 2006
July 13th & 14th at 7:30pm
July 15th at 2:00 & 7:30pm; and the 16th at 3:00pm
Columbia Arts Center
$10

Information:
With music and lyrics by Clark Gesner, “You’re a Good Man, Charlie Brown�, originally opened on Broadway at Theatre 80 St. Marks on March 7, 1967 and ran for 1,597 performances. Based on the award-winning comic strip, “Peanuts�, by Charles M. Schulz, the show chronicles the daily struggles of down-and-out Charlie Brown and his friends as they attempt to make sense of the world around them.

Location:
Columbia Arts Center
400 West Evergreen Blvd., Vancouver, WA

Many, many thanks to Prayer for the Children for putting on a 3rd benefit fundraiser for Kennedy! To date, they have raised more than $2500 to help our family in covering Kennedy’s medical expenses. This weekend, they will be putting on a musical with an award winning cast. The Duval family will be attending opening night (Thursday) but the show runs through Sunday. It should just be incredible and even the youngest members of the audience are sure to have a wonderful time. Please see the attached flyer or go to their website at Prayer For The Children for more details and information about this wonderful non-profit. Feel free to pass this on to family and friends and we hope to see you there!

We would like to thank everyone who has supported us through this difficult year. It means everything to us and we could never take care of Kennedy without you. We continue to hold fundraisers to help cover the mounting costs of Kennedy treatment and thank those who have offered to hold events in her honor (we currently owe more than $380,000 in uncovered medical expenses and must provide separate insurance for Kennedy at the cost of $2500/year) . Over the last year, all of you helped us to raise approximately $35,000! Prayer for the Children is completely non-profit and holds events around the Northwest to benefit local children fighting cancer and other life threatening illnesses. We appreciate all the time, effort and love put in to this production.

Hope-Faith-Courage-Love,

The Duval Family

Come to an Outstanding show!!!

Incredible Talent 2 “Drammy� Award winners, 3 Bach Fest singers,
2 APU Actors….Quite frankly, some of the Best talent in the Area.

Lucas Welsh, Director – The young star of Portland. Having played many
lead roles in Oregon Children’s Theater, and NW Children’s Theater, he
is truly one of the most sought after young professionals in the Northwest.
In June, He won a “Drammy� for his role as “Horton� in “Seussical� the
musical, with NWCT. Bach Festival Singer, 2005.

Jameson Tabor (Charlie Brown) – Jameson is one of Portland’s top young
actors. He has held title roles in numerous shows at OCT, and NWCT. As
a young man, he has already won a “Drammy� Award for an incredible
performance at NWCT.

Mary Lucarelli (Lucy)- Mary is in the young professional’s program at
Oregon Children’s Theatre. She played Lucy with the company this past
spring, and received wonderful reviews. She is an exciting performer
filled with boundless energy.

James Sharinghousen (Snoopy)- James is an alumni of the OCT, Young
Professionals program. He has unbelievable dancing skills and experience.
He has choreographed many company shows, school shows, and
other reviews and productions. A thrilling performer.

Brian Svehaug (Linus)- An experienced performer, Brian was a Wickersham
Brother in NWCT’s “Seussical.� He was Gaston is Christian Youth
Theater’s “Beauty and the Beast.� This year, he won a trip to the OSAA
State Competition as a solo Baritone. He was also picked for the nationally
renowned Bach Fest in Eugene this summer.

Andrew Svehaug (Schroeder)- Andrew is a Vocal Performance major at
Azusa Pacific University in Los Angeles. He was most recently seen as
“Rolf� in APU’s “Sound of Music.� Andrew was also picked to sing in
Bach Fest in 2004.

Colleen Ballinger (Sally Brown)- Visiting the Northwest from Santa Barbara,
Colleen is a very talented actor. Having performed as “Maybel� in
Pirates of Penzance, “Cossette� in Les Miserables, and “Sally Brown�
once before, she is excited to be with us.

Slowed Down to a Trot

Category: Treatment – Melenie 9:29 pm

We had our first clinic appointment in a month and it could have gone better. Kennedy was very upset about getting her port accessed but did settle down quickly. Her ammonia levels were very near normal which was a good sign. If that continues perhaps we can lower her dose of Lactulose. Her counts were falling too. Dr. Norwood thinks that it has been caused by a build up of 6MP and Methotrexate in her system. It may be that she does not have all of the enzymes necessary (in part because of the damage to her liver) to process them and we may need to make adjustments to her dose. For those who love numbers (and other families who understand them), her wbc was down to 1.3 (normal range is 4.5-13), her hemoglobin was 9.3 (nr is 11-14), hematocrit was 29.1 (nr is 34.7-46), platelets were only 49 (nr is 140-440) and her ANC was only 660 (nr is 1500-8500). Needless to say, we are returning to the clinic in a week to recheck her counts. The doctors checked protocol (from what I understand, Kennedy is the only kid in the clinic in LTM on AALL0232) and are holding her 6MP and Methotrexate until next week but we continued with the Vincristine and steroids. Kennedy was thrilled! With 6MP you can’t give anything to eat 2 hours before and 1 hour after and she HATES it! Now she can eat all the way up until bedtime. 🙂 She is one happy camper. So, that went fine. She is holding steady on her weight despite eating everything and they think it has a lot to do with the fact that she is very active and burning more calories. We’re still working out the details for pt and ot but hopefully she will be starting that soon. Hmmm…as far as treatment, I think that about covers it.

Oh, speaking of treatment, Kennedy pretty much remembers (or at least she mostly talks about) the things she liked about treatment. Leave it up to a 5 year old to find a whole list of things she enjoyed/enjoys about cancer and it’s treatment! She told me the other day that her favorite was radiation! She actually said that she loved it and wished she could still go! Ever heard anyone say that? She was very fortunate to only have 8 days of treatment and remembers absolutely no pain. She loved the staff over there and was thrilled when we were done every morning because we would go to Auntie Caryn’s house. She mentions how much she liked Diane and Melissa from Child Life, hospital bingo, late night trips to the Heartbeat Cafe-usually for cucumbers or bacon, all her most favorite nurses, Karaoke night, the fish tank, the wagons, the playroom, baking cupcakes and cookies, playing with her friends who were also inpatient, tubbies in the cool tub room, all the movies, pushing the call button over and over and over, ice water, decorating her windows with Auntie, having visitors, the Music Rx cart, pt and ot, etc. The list could just go on and on and on. I’m not sure if she does not focus on the bad things or if they are just suppressed and will resurface at a later date. It’s so hard to tell at this age what is really going on with them. Well, I’m happy for now that she is looking for the positive.

Well, I just have to update about Austin, for those that haven’t heard yet! Things went fantastic for him this past weekend! His rodeo was in Clark County at the Saddle Club and boy was it HOT! Austin qualified on both of his rides and was currently in 2nd place for both PeeWee Bullriding and PeeWee Bareback as of Saturday. (He will actually get paid!) That is awesome (especially since this was his 3rd rodeo ever!) He scored a 59 in bareback and a 61 in bullriding. And to think…he was so nervous he didn’t decide he would ride for sure until the last minute. I think there is just too much time to think about it! He would be nodding his head yes and saying no but they would sit him on his roughstock and he would nod for them to open the gates. Both times after his ride he was just beaming! He received LOTS of encouragement from the senior riders and that sure boosts his confidence. We were so excited that Aunt Lori, Doug and the kids came just in time to see his bareback ride and Papa Mike, Aunt Linda, Ellissa and Tyler were able to join us for the day. His next challenge? To take up breakaway and team roping and goat tying. After all this…not a problem! If you havent’ seen the pictures but would like to, just feel free to e-mail me and I promise to respond in a timely manner. They turned out fantastic!

So, in conclusion, things are cruising along with some minor bumps in the road but we keep our eyes on Him and keep moving right along. Today? I am very content.

Success seems to be largely a matter of hanging on after others have let go. ~William Feather

All of us have had the experience of a sudden joy that came when nothing in the world had forewarned us of its coming Рa joy so thrilling that if it was born of misery, we remembered even the misery with tenderness. ~Antoine de Saint-Exup̩ry, Wind, Sand and Stars, 1939, translated from French by Lewis Galanti̬re

Hope-Faith-Courage-Love,
Mel

July 5, 2006

Day 51

Category: Treatment – Melenie 10:38 pm

Yes, we are on day 51 of an 84 day cycle in LTM and LOVING it! Kennedy is handling the meds well (especially considering how difficult the first year is) and seems to be cruising along. Her hair is growing back in! She has very dark eyelashes and much thicker eye brows (not bad considering she had very small, thin eyebrows like her mother before she got cancer). Her hair is much thicker and she seems to have a lot more of it. Of course, it is only about 1/4 inch long but she has been bald for the last 8 months! Up close it looks very blond but when you see her at a distance, the area where her hair is looks dark…hmmm…not sure what it is going to do yet. Everyone EXCEPT Kennedy hopes that her hair comes in curly. There is a very good chance since her father, both grandfathers, brother, nana, aunt Amy and auntie Caryn, and many others have curly hair. For those who did not know Kennedy before her diagnosis, her hair was in a chin length bob cut, very thin, fine straight and light blond. She was, however, born with a beautiful head of auburn hair much like her brother’s. We’ll have to see! I’ll get pictures posted if I ever figure out (and have the patience to download them on dial-up) PhotoBucket! Grrr!!! I know that everyone would love to see photos of our trip but I am having a pain of a time getting them loaded to the site. I may just give up and put them on a disk for Becky. She doesn’t have to fight dial-up and she is VERY computer literate. Thanks, Becky, for all you do! I mean, if I had just asked her first, I would have had all my pictures in chronological order in a few minutes instead of spending hours trying to rearrange them only to have the computer put them back in the wrong order!!! I love my computer but this week it has driven me almost to the point of taking a hammer to it! Ok, not that bad but I’m just not feeling very good being outwitted by emachines and AOL.

Well, other than that…we had a very relaxing 4th of July. Somehow that sounds like an oxymoron but it’s true. We had the Wilson family over for a BBQ and let the kids have a TON of sparklers. Between those and the pop-its, they were thrilled. Our neighbor must have gone across the river because they provided a beautiful fireworks display in the sky above their house. Thank you, thank you! After 4 days of the absolute extreme fireworks in Disneyland, we were fireworks-ed (is that even a word???) out. It was fun and the kids crashed as soon as their friends left…so did Keith for that matter 🙂 Other than that we have been pretty much laying low. Kennedy has her next clinic appointment and IV chemo on Tuesday…because we are not going all the time anymore, it causes a lot of anxiety for her.

Oh, on a good note, Kennedy is going to return to physical and occupational therapy! As many of you know, she has really struggled and lost many of her skills including her strength and balance and with our horrible insurance (Primary PhysicianCare) she was not able to get the care she needed. Well, those days are over! OMIP pays for 60 visits a year! We do have a $500 deductible (I think we may have already met that) and then it is 80% up to $1200 out of pocket, then they cover 100%!! That is such good news! We are hoping that there is a way to work out the previous bills (December through May) that now total over $400,000 as some are beginning to head to collection. We are doing everything we can to buy some more time but that is A LOT of money. That is my biggest project right now. We do NOT feel that the Lord is calling us to file bankruptcy so we are leaning on Him to provide a solution however He sees fit. I’m just continuing to walk it out if faith. After all of this, I realize there is NOTHING to fear when we follow Him. It sure isn’t fun though.

And, I am returning to school this fall. This is the first year that I have not been excited to go back. Please, no offense to those professors who read this, it is just that I want so much to be with my family and moving ahead with the plans that the Lord is sharing with me. I need to take 3 classes or lose my substantial grant and scholarship money so that is weighing heavy on my heart. When I pray and spend time with God, I know that this is what He would have me do but it isn’t on my agenda…of course, none of this was and it turned out to be an abundant blessing. The good news is that I will be able to graduate next spring and then can do the work that He is calling me to do. I will be home with my family as much as I would like and will be serving Him. Who could ask for more?

There is one thing I know I need to address. Not only am I feeling it in my life but in reading other families blogs and in talking with other parents there is an overwhelming feeling that so many not in the thick of this experience seem to think that when a child is in remission that the trouble is all over and we are just moving back to our pre-cancer normal. I have to speak for all of us and say that we can NEVER go back to our pre-cancer normal. Not just because our whole perspective has changed dramatically but because we are still in the thick of dealing with cancer. Kennedy was in clincial remission by day 15 of treatment (May 22, 2005) but as you all know, it only got harder after that. We saw NO RELIEF until exactly one year after she was diagnosed and are still dealing with cancer every single day. Sure, Kennedy, looks and feels much better than she has in a long time but there are many things you can’t see with your eyes. She will not be considered cured unless she does not relapse before she is 12 years old…she is only 5 1/2 today. Once she is 12, she will still see an oncologists once a year for the rest of her life. Before she is 12, she will see the doctor as frequently as once a month or as little as once every 6 months. The long term effects of cancer treatment and cranial radiation are staggering: drops in IQ, short term memory loss, learning disabilities, hearing loss, cataracts requring retina transplants before the age of 18, seizures, they are easily distracted, they have slow processing speeds, damage to the heart muscle, heart muscle tissue scaring which can lead to congestive heart failure, irregular heartbeats, infertility, problems with tooth development and cavities, chronic muscle weakness and pain, decreased reflexes, unsteady walk, future cancers (for Kennedy in particular-brain tumors from radiation), poor nervous system function, scarring of lung tissue, etc. We won’t truly know the extent of possible effects until 2+ years after treatment ends. True, many kids grow up with no residual effects but many don’t receive as intensive treatment as Kennedy has and as many others have had. Many times, Kennedy’s chemo has been pushed to the point of toxicity…times when she could not walk, could barely sit unsupported and no one will ever forget what happened in December. No one can tell us whether or not Kennedy will ever have a normal functioning liver. Statistics mean nothing when it is your child. I know several families right off the top of my head who are dealing with many complications despite the fact that their children have been off treatment for some time. I am so thankful that Kennedy is here…I can’t sing the praises enough…but it is too early to assume that our life is “back to normal.” Things are better, easier but very different than the typical “norm” that we had before cancer and the road is still long. We are moving forward but we know that it “ain’t over til it’s over.” So we rejoice in the blessings we have today and plan for the hard work still to come. I haven’t even began to touch upon all of the emotional stuff for Keith, me, Austin and Kennedy…many, many parents have post traumatic stress issues, relationship/marriage problems, mourn the loss of friendships, overwhelming finances, anxiety and for the child who feels forgotten there lies years of healing and as you can imagine, there is emotional healing needed for the cancer child who has lost not only the innocence of childhood, but also years of their life spent in hospitals and away from doing the “norm.” We are doing fabulous in light of all of this and feel very fortunate but please remember that we still face the dragon, his effects and the fear that he could some day rear his ugly head again. To those families who have lost their children…not a day goes by where they do not think of, love and miss their babies. Not a day goes by that we don’t think of your babies and are thankful that their stories touched our lives.

“In war, there are no unwounded soldiers. ~José Narosky”

“The appearance of a disease is swift as an arrow; its disappearance slow, like a thread.” ~Chinese Proverb

“The greatest oak was once a little nut who held its ground.” ~Author Unknown

And last but certainly not least:

“The race is not always to the swift, but to those who keep on running.” ~Author Unknown, in reference to Ecclesiastes 9:11, “I returned, and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill; but time and chance happeneth to them all.”

And one from me:

“Hell hath no fury, like a momma fighting the cancer dragon!”

Faith-Hope-Courage-and most importantly Love

Mel