Before anyone starts beating down my door I thought I would get back to Kennedy’s journal. In this case, no news has been good news. Kennedy finished her radiation and came through with minimal acute side effects. She had a dry scalp and “burnt� ear canals. It really hasn’t seemed to bother her but they were peeling like crazy for a few days. The radiation oncologist gave us some ear drops to heal them faster but she flat out refused. Because they were not hurting her or itching and were only peeling, I let it slide and chose not to make a big issue out of it. The RO said it was up to her and they were mainly to relieve any discomfort. She also was more unsteady on her feet than usual but they chalked it up to all the anesthesia; I think it was a combination of that and radiation. Tuesday of that week, she had her usual clinic visit and started another four days of Ara-C. From the Ara-C the previous week, she also needed platelets. Unfortunately, it was already late in the day so after her appointment on Wednesday we went to Day Treatment for a unit; the good news was that they were ordered the day before and were waiting for us. The rest of the week went pretty well. On Friday, my cousin, Heather, went with us to the clinic while Kennedy had her chemo and had the opportunity to watch our big brave girl. Heather did her senior quest on ALL and we were able to share tons of information with her. I shared lots of pictures with her and she was able to gain more understanding of what families walk through on this journey. Oh, I forgot to mention that after Kennedy’s last radiation appointment, she received gifts and they had doughnuts and juice waiting for her. She did not want to be done with it. She really enjoyed all the wonderful people that made being up so early bearable if not pleasurable. In fact, Dr. Rose told me that it was wonderful for him to see us every morning with smiles on our faces. I had decided that no matter how afraid I was, I would not pass that on to Kennedy. I went every morning smiling and sending positive vibes. What she didn’t know, of course, was that inside I was terrified and spent our waiting time with my hands upon her precious head praying for protection and healing of the healthy brain cells and for God, in his infinite wisdom, to seek out the leukemia cells and completely destroy each and every one. She always felt it was a fun place to go and never once showed any signs of fear. Ok, now back to her last day. They even gave Austin a gift, a Cal Ripkin Jr. bear, for being the “best camera man ever.� Everyday after we would get Kennedy in the room and she was asleep, Austin would head out and adjust the cameras for Dr. Rose so he could watch her on the monitor. He got really good at it and they felt he deserved a reward for helping. I will work on getting the pictures up this week. Becky explained to me how to do it so I hope to get those updated. Kennedy also was able to keep her mask from radiation and plans to paint it. She would like to get a wall “lamp� and use it as the shade. She loves it and was so proud to show it off at Grammie and Daddy’s work, to Auntie and the girls and to her Papa. While to most, if not all, of us think the mask looks a little freaky, she thinks it is the best and loves trying it on for everyone. Ok, so that ends our week. I’m trying to remember what we did over the weekend but I’m so tired that my brain is not recalling it. If we did anything important with someone we love, please do not be offended, it has been a long day and I’m just tuckered out!

The following Monday, Kennedy and I just rejoiced at sleeping in and having no where to go until it was time to take Austin to school. Heather joined us again on Tuesday when Kenn returned to the clinic for her favorite, “Mean Christine�-I mean Vincristine, and her last PEG injection. Heather and I took her earlier in the day (when the stores are virtually empty) to Old Navy and she was able to pick out some goodies including the cutest denim skirt and an I Love Mom t-shirt. She did well with her last “leg pokes� and was happy to find out they were over. Of course, she needed more platelets so after we finished there we headed back to Day Treatment. I ran down to get Kennedy a snack and she decided it would be a good time to do some climbing and slipped causing her to have a very dark bruise down her entire shin. It didn’t hurt much but because her platelets were so low, it looked horrible. Her platelets haven’t been great anyway so it pretty much looks like we beat the tar out of her and of course, she wants to wear her new skirt all the time or with the warm weather, shorts. I just know that one of these days someone is going to question us about the way she looks, especially when her hair comes back in! The rest of the week we pretty much laid low because her ANC is shot. Thursday we did go to Austin’s first baseball game. Before the game even started, he got hit square in the nose with a ball and blood was just pouring out of both sides. I thought, “oh, great, first game and already he broke his nose!� He didn’t, of course, but I was all excited about it anyway! Daddy and Kim dealt with it and he was back and ready to go when the game started. He got the first hit and first run of the game so that was encouraging for him. By the end though he was tired as he had been up since 5am so he could go to work with Keith for “Take Your Child To Work Day.� He was cranky and wanted to give up after striking out but the last time he was up at bat he hit it again and made another run before it was over. This is his first year with kids and coaches pitching and it is very frustrating to spend your time at the plate dodging balls instead of swinging at them. He’ll get it though. In his game on Saturday, he actually got to pitch and Keith said he was the only kid to strike batters out so that made him pretty proud! We also received the check from Papa’s Pizza and it was over $660!!! Thank you so much to everyone who ordered that night to help our girl. We all had such a great time! Kennedy enjoyed seeing everyone and playing with the kids and I enjoyed visiting. I tried very hard to make it around to everyone but I’m sure there are some people I missed. I was so busy socializing that I didn’t get any pizza to eat until we got home after 10pm! I loved it though so I really didn’t mind. T-shirts and bracelets are selling like crazy and we have made well over $500 to date so if you want one, please e-mail me soon before their gone! Let’s see, what did I miss…Saturday we stayed home and Sunday we ran to my Auntie’s Sue’s so I could get the last pictures to Heather and sign off on her project and then headed to Doug and Kate’s so Keith could buy the truck box from my sister and brother in law, Caryn and Jeff, and we had so much fun we stayed for dinner. Everyone was well and it was a small group situation so we felt good about having Kenn there. She had fun and really misses being with other people. She is such a little social butterfly. Oh, I just remembered, when we were at Day Treatment on Tuesday, we were able to see her PT Amy! Kennedy has been having some problems with her leg braces so we think we have them fixed now. It was so wonderful to see her! Kenn misses her so much! She also had a CD for us of pictures her boyfriend, Sean, took at St. Baldrick’s of Keith getting his head shaved and of her and Kenn. She is the best and I hope this insurance thing gets resolved soon so Kennedy can get back to working with her.

That should wrap it up. Grammie and Papa were in Idaho the last few days putting my Grandma Marty to rest with Grandpa Jesse. We really wish we could have gone but there is no way the Drs would have allowed Kennedy to travel that far. A lot of family was there and we miss them so much but hopefully someone will get a reunion planned for very soon and we can see them then (hint, hint!). They will be back tomorrow and the kids can hardly stand it. What on earth would they do if they actually had to live far away from them? Silly me! They would NEVER allow that to happen! Tuesday Kenn has more chemo and blood (if she doesn’t go in tomorrow for that!) and then we lay low again for the next week. Tuesday, May 9 will be the one year anniversary of her diagnosis and is already stirring up a lot of emotion for me. It is also the day she is scheduled to begin long term maintenance. I am starting on the journal entry for that day now as I know it will be difficult and rewarding and will not be written in an hour or two. I have some more good news to share in the next few days when I have more details too (and NO, I AM NOT PREGNANT!) so watch for that. Also, it looks like we are finalizing plans for Kennedy’s Make A Wish trip…FINALLY…and we should be flying out June 20th and returning on June 26th . If you haven’t heard, her wish is to meet the Disney Princesses so we are headed to beautiful, sunny southern California! I’ll have more details soon. And finally, please pray for direction for me…the Lord is asking me to make some decisions about my future and I just want to be sure that I am doing His work and not lighting my own path. It is something that I would enjoy but is stepping out of my comfort zone and I am concerned about my ability to do all that He is asking. I know that He would never ask me to do something big without Him but this isn’t at all where I thought I would be heading. It would be an opportunity to share all of the amazing things He has done in our lives and allow us to minister to others but as with all plans that we only have a small window to see, it can be scary to step out and do what we are called to. Just pray that I will be able to hear His voice clearly and follow His direction for my life.

Please pray for:
Oliver
Joshua
Gage
Rebekah
Madeline
Warren
And all the other children we have come to care about as they continue to battle cancer and it’s lasting effects
Pray for their families as they walk out this journey

Jeremiah 29:11 “For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.”

James 1:2-3 “My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience.”

According to my bible, “patience transcends the idea of bearing afflicition; it includes the idea of standing fast under pressure, with a staying power that turns adversity into opportunities.”

Hope-Faith-Courage
Mel

We have made it through the week and actually done very well. With the exception of getting up at 4am everyday, we have cruised through it and gotten a lot more comfortable with the idea. Is it still scary? Yes, but now it is managable.

Kennedy, as you know, had counts check on Monday and barely passed in regards to her platelets. On Tuesday she had radiation and because of some x-rays and stuff that needed to be done it took about 4o minutes. We had a little time to kill before we had to be at Day Treatment, so Kennedy and I made the rounds and did a little visiting. We then headed over to DT and had more counts drawn. Kennedy’s platelets had dropped slightly to 78 (75 was passing) and her ANC was now down near 1300. Still in the passing range but already getting lower. Her red count however, was in the critical range so that meant a blood transfusion. They started her fluids for her Cyclophosphamide and we waited to have her LP. As usual, she did well and they ran her recovery fluids along with her red cells and we were able to leave about 4pm. That sure makes for a long day. We went straight from there to the Papa’s Pizza fundraiser!

What an incredible turnout!! There were so many people! Not just family either, but friends of family both through church or work, nurses (who are like family) and so many people we love and care about. Kennedy was at her best and was excited to see people and play with other kids. I do not have a final count but I need to update the fundraiser information anyway so it’s a good excuse to get on that. We were exhausted when we finally crashed at home around 10pm. What a great day though!

Wednesday more radiation and to the clinic for Ara-C. I also had a doctor’s appointment to figure out what the problem is with my ear. We’re still not sure but the ear drum was retracted and showed signs of fluxuating pressure so she gave me some meds to keep it draining properly and we’ll see how that works out.

Thursday, more radiation and back to the clinic for Ara-C. These are all short appointments really but because they are 5 hours apart it can make for a crazy day. It is a good excuse to hang out with my sissy and her babies though. I also had conferences for Austin at 3pm. He did excellent (especially considering how much school he has missed and the tremendous stress he is under). He received 18 A’s and 7 B’s. He freaked! Keith and I were very happy but he was crying because he wanted more A’s. I told him how proud we were and how many wonderful things his teacher had to say about him but it matters most what HE thinks. I’m not sure yet that he is convinced of how well he did.

Yesterday, more radiation and a meeting with radiation oncologist. We were originally told that she would have 14 days of radiation (now, to tumor families I realize that does not seem like very much, but when you are zapping the whole brain, back of the eye cavity, ears and thyroid-mostly healthy cells-anything is a lot) but after talking with oncology team and reviewing protocol, she only needs 8 days of radiation! We are half way there!!! They were asking me a bunch of questions such as whether or not she was tired, eating less, having vision or hearing problems, unsteady, etc. and while this was sort of helpful, many of these she has had for awhile or would have problems articulating so I’m not sure I was much help. As far as Kennedy’s spirit, she is doing remarkably well. She is no longer focusing on the possiblity of dying but would rather talk about the plans she has for the future, such as ballet in the fall, being a teenager, having a horse and growing up to be a mommy. She loves to talk about her plans for her hair (having lost it 3 times!) and wants to grow it long and have me put it up and lots of different ways. That is amazing since she could hardly stand to let me brush her chin length hair before! The first few days of radiation were hard for me. It was very disheartening to carry my sleepy girl in a room with so many warning signs, lay her on the table, see her sedated and restrained and that mask fit tightly over her face…and then walk out and leave her. All of my mothering instincts were screaming in my head to gather her in my arms and run as far away as I could, back to before she was sick. It is extremely difficult to hear all that oncologists have to say about the many different treatments and then to sign your consent to allow them access to your most precious gift. However, I get through it by remembering the dragon that wants to devour her and that these are the weapons of destruction that are necessary to be rid of it forever. True, these weapons could be swung at the innocent bystander but scars will heal better than broken hearts. She is an amazing princess warrior who has grown into her name and she is determined to move forward and claim her healing. And please remember this Easter weekend, that while bunnies and eggs are fun, it is our savior who overcame the most destructive dragon of all…death…so that we could triumph too and rest easy in his arms when our journey here is through. Jesus is our inspiration and strength for fighting and He is the PERFECT example of overcoming all odds!

Often people attempt to live their lives backwards; they try to have more things, or more money, in order to do more of what they want, so they will be happier. The way it actually works is the reverse. You must first be who you really are, then do what you need to do, in order to have what you want. ~Margaret Young

Happiness is a form of courage. ~Holbrook Jackson

Feeling absolutely blessed this Easter and rejoicing in our greatest gifts,
Melenie

Just a quick note:

Kennedy had her counts check today and passed to start the next phase tomorrow. Her platelets were 80 (they needed to be 75) and her ANC was 1500 (it needed to be 750) so we are moving forward. We have to be at radiation/oncology at 6am!! Ugh!!! I have become way too comfortable (and spoiled) getting up at 7am! Now I will know how the other half lives! I actually have to get up with Keith at 3:45!! I’m tired just thinking about it 🙂 We will also be in Day Treatment for an LP with IT Methotrexate, IV Cyclophosphamide and Ara-C, so it will be a very long tiring day. Kennedy and I plan to nap in DT to rest up for the big fundraiser at Papa’s Pizza!!!

Yes, we will be at Papa’s Pizza! We should be there around 5-5:30 and will stay as long as Kennedy can (probably 7pm). We would love to see everyone there!

Also, yesterday was St. Baldrick’s day! Bet you didn’t even know it was a very important day, did you? St. Baldrick’s is the day when MANY people shave their heads to raise money for children’s cancer research. We went for Keith to shave his head and were able to visit with so many people we have come to care about over the last year. It was great to see Maggie May’s family (Rick, Beth, Papa Potato-does he have another name? I feel silly calling him that here :)-Angelina), Rebekah’s family (Scott, Francis and Sarah), the Renton family (it was so nice to finally meet you!), Kennedy’s entourage (Megan, Amy, Sean, Heather, Wendy, Darcie, Molly, and so many other nurses we love), Dr. Norwood and Dr. Olson, Gina, Suzanne (who got her head shaved! Way to go!!), Ileana, Nellie, and so many others that mom just can’t pull out of her brain this late! It was an incredible gathering at Barracuda’s downtown! We were so surprised at how many women shaved their heads! What courage! Way more than I have for sure! Next year we plan to stay long enough to shave Dr. Norwood and hopefully Dr. McGann. We have pictures and will post them as soon as I send them from my cell phone. I had my camera but left it in the truck several blocks away.

OK, I promise to post very soon. Oh, and for those who have asked…Kennedy has really enjoyed her week off and has played and eaten like there was no tomorrow! We can’t wait for maintenance!!!

Faith-Hope-Courage,
Mel

Kennedy went in to the clinic today for a counts check to prepare her the next phase and she did not pass. Her platelets needed to be 75 (they were 57) and her ANC needed to be 750 (it was 430). While they were still too low, they were an improvement which means she should be fine next week.

I was terribly disappointed because the anticipation anxiety is killing me! Kennedy however, was absolutely tickled pink and began singing, “No chemo, no chemo, no chemo for me!” How could I not be happy with her? She continually amazes me by finding joy in all things. God definitely speaks to us through our children and it is such a blessing. We are just going to enjoy this week being together and having fun. She is finally returning to herself after the steroids and while she is eating less, it is more “normal.” We are still heading up to Day Treatment tomorrow for her monthly antibiotic but that is only to save another 2 hours next week. And speaking of next week…Kennedy’s fundraiser at Papa’s Pizza is next Tuesday!!! It will be following her first day of radiation and a hard day of chemo, so we hope everyone can make it and really encourage her…she’ll definitely need it! Remember, you do not need a flyer. Just let them know that you are “eating for Kennedy Duval” and 50% of whatever you buy will be deposited in the Kennedy B Duval Contribution Account at Wells Fargo bank. Also, you can eat all day…not just that evening when we will be there. Thanks!

Boy, I love this new song by Gary Allan from his newest CD:

Life ain’t always beautiful
Sometimes it’s just plain hard
Life can knock you down, it can break your heart

Life ain’t always beautiful
You think you’re on your way
And it’s just a dead end road at the end of the day

But the struggle makes you stronger
And the changes make you wise
And happiness has it’s own way of takin’ it’s sweet time

[chorus]
No, life ain’t always beautiful
Tears will fall sometimes
Life ain’t always beautiful
But it’s a beautiful ride

Life ain’t always beautiful
Some days I miss your smile
I get tired of walkin’ all these lonely miles

And I wish for just one minute
I could see your pretty face
Guess I can dream, but life don’t work that way

But the struggles makes me stronger
And the changes make me wise
And happiness has it’s own way of takin’ it’s sweet time

No, life ain’t always beautiful
But I know I’ll be fine
Hey, life ain’t always beautiful
But its a beautiful ride
What a beautiful ride

Those who can laugh without cause have either found the true meaning of happiness or have gone stark raving mad. ~Norm Papernick

One may go a long way after one is tired. ~French Proverb

Hope-Faith-Courage,
Mel

Well, it is time to bring the hammer down on PPC. If you are new to this journal let me fill you in on the agony that is called Primary PhysicanCare.

As many of you know, at the time of Kennedy’s diagnosis Keith was self-employed, I was a full time student and we had no health insurance. We felt it was just too expensive (for the kids alone it was almost $500/month) and we were able to pay cash for the usual doctor and dentist visits. Obviously, cancer can blow all theory out of the water and we were now looking at over $1 million dollars in medical expenses. Keith was able to secure a fantastic driving job through the Portland Sunbelt Rentals at what he was making working for himself with full benefits. He jumped on it and we thought our health insurance problem was over…it had only begun.

Kennedy received Oregon Health Plan (medicaid) from the day of her diagnosis until November 30, 2005 and they paid for virtually everything, minus a few prescriptions but that was easy to iron out with a few phone calls by her oncologist. We began billing PPC when her OHP ran up and were originally told that ALL was a pre-existing condition that would not be covered until 9/06. They apparently reviewed the situation and decided that they would begin coverage on 5/06. Our oncologist called our case manager, Robbin, and told her that is was not a pre-existing condition by definition because she could not have had it for 12 months prior to enrollment…she would be dead if that was the case. Acute=not pre-existing! Ok, first problem solved. Then, they decided that because she is on a research protocol they would not pay a single dime for treatment or for any complications arising from treatment…no matter what, and they have stuck to their guns. In January, they called to inform us that if we pull Kennedy off of treatment, regardless of the fact that her treatment would not change, then and only then would they pay anything. There is a big problem with that…let me explain. It is vital not only to Kennedy’s health and well being but to the future of children’s cancer research that she remain on the Children’s Oncology Group study. The Children’s Oncology Group is one of the premier children’s cancer research groups in the world and their input is absolutely crucial to Kennedy’s outcome. Please understand that Kennedy has a very unique case due to her high-risk, slow-response status and the rare complications she has endured (such as DIC and VOD-for more information please read entries beginning the middle of December). By her remaining on study, we are able to consult with pediatric oncologists at many of the top treatment facilities at no cost and with Kennedy in their database, children with her complications will benefit from the case study being written regarding her care. The research chair has even presented aspects of Kennedy’s case in Washington, DC to the National Institute of Health. Primary PhysicianCare is railroading and manipulating us in to making unsafe decisions regarding our daughter’s health care by playing on our fears of financial devastation. They have not only been belligerent with us but with Kennedy’s health care providers including her oncologists, the health care administrators of our hospital, her therapists, the medical billing specialist in the clinic and most anyone they come in contact with. They refuse to answer questions regarding her healthcare coverage and will not assist us in getting her any benefits.

Can you believe any of this? And we are paying $300/month for this crap!!! Well, I have had it. I have composed a letter and am sending it to the following people: our state senators, my state representative, my local senator and representatives in Salem, the governor of Oregon, former Oregon governor, John Kitzhaber who is working on healthcare reform, the protocol chair at COG, the Better Business Bureau of Charlotte, North Carolina where they are located, the chairman and CEO of PPC, our advocate at Sunbelt Rentals and those at Sunbelt who make insurance decisions, Robbin’s supervisor, the local papers and news channels, and the Oregon Insurance Division. We have already filed a complaint with the BBB of Charlotte and found out that PPC already has had complaints filed because of failures to honor their contracts and have an unsatisfactory standing with their local BBB. We are filing a formal complaint with the Insurance Division and a national patient advocacy group. Many of Kennedy’s providers who have had the unpleasant experience of dealing with Robbin are more than willing to be witnesses to how they and we have been treated. I guess they had to tick me off one more time. The final straw? Radiation/Oncology called them for the pre-authorization and they denied it on the spot. Robbin asked for the protocol (which is property of COG and confidential) and was denied and that is when things got ugly. R/O was absolutely floored that they would not pay for treatment for a 5 year old child!!! We then showed up at the clinic and found that Robbin calls them frequently requesting information even though they will not pay for it and then gets mad when she doesn’t get what she wants to hear. Who is this woman? Can someone in North Carolina find her and pull that 2×4 out of her rear? She would be so much more comfortable and might have an ounce of compassion after that!!

So, now I am sending letters and putting together our appeal. We did find out that if they deny our appeal (and I’m sure they will!) then we have “the right to bring legal action under federal law” (their words!). They should plan that we will be doing that. At the very least they should pay their portion based on the “out of plan” charges, right?

Ok, now for Kennedy. Thursday was not the funnest day we’ve had for sure. At around 1am she woke up just screaming her head off. I mean, she even woke her father! That is a miracle since I’m sure the guy could sleep through a freight train roaring through our bedroom! She just screamed and complained that her side was hurting. Thankfully, it was not the side where her liver is but the area that would indicate that she was very constipated. She filled two diapers but just could not get comfortable and tossed and turned, groaning for another hour and a half. I know her stomach is bloated from the steroids but I just could not help but worry after the VOD thing. I called Dr. McGann and woke her up. I felt horrible but as usual she assured me it was fine (is it really or do they just say that to make us feel better?) and sent us to the ER. Lucky for Kennedy, she has quite the entourage and Megan and Torey came to the rescue to do her port access and nurse Jody came for the deaccess. She then slept (minus the x-ray of her abdomen) and was fine. They let us go home around 8:30 am and I was exhausted! Grammie stayed home so I could try and sleep and to help with the kids. That evening however, Kennedy had a dark, tarry, sticky diaper and that can be a sign of internal bleeding so back to the hospital we went with poopy diaper in tow. This time we were admitted to the 3rd floor (and under the charge of Lyndsee-another favorite nurse) and were expected to stay all night. However, the diaper tested negative for blood and despite a low grade fever, they gave her anti-biotics and sent us home. We were returning Friday so there was little to worry about.

Friday we made it to R/O at 11am only to find they were running late and we were not seen until 12:30. Not usually a problem except that my coming off of steroids monster had not eaten or drank anything since 2am!! She had to be sedated for her procedures and man was she ticked! They finally got her in and sedated. They made her a mask to hold her head still and ran a radiation simulation to get an exact target field for next week. They had to take her earrings out (she has insisted we could take them out for almost 2 years!) and put them in before she woke up and so we decided that next week we are changing to a different pair. Big excitement in the Duval/Platts house! They then let her wake up a little but then sedated her again for the CAT scan. It was about an 1-2 hours total and boy, was Austin bored out of his mind. He did great entertaining himself with the wheelchair but he was bored. We had lunch in the Heartbeat Cafe and ventured up to clinic. Kennedy was accessed so we just did vitals and a quick counts check. She looked great and her counts are starting to recover so we expect it to be a go next week. Monday she will have a final counts check and her platelets need to be 75 (they were 51 Friday) and her ANC needs to be 750 (it was 360 and recovering on Friday). If she fails, we do nothing for a week and try again. If it is a go, Tuesday we will need to be there around 6am for radiation, then to Day Treatment to start her Cyclophosphamide hydration (2 hours pre-1 hour run-3 hours post), she’ll get her LP with Methotrexate, her monthly Pentamadine (antibiotic to prevent a very common form of pneumonia for chemo kids) and her first day of Ara-C. It will be a very long day especially because Austin has his first baseball practice that night! Go Austin!!!

Well, I should head for bed. Thank you to everyone for the encouraging e-mails and posts to the guestbook and journal. All of your support means worlds to us here on the frontlines. You all make it possible for us fight the good fight!

You may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you. ~Walt Disney

It’s not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant

Faith-Hope-Courage,
Mel