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

When politicians are working on healthcare reform to insure that everyone has healthcare…they should also consider the fact that many people who have healthcare have serious problems with it!!! I am so sick of them making my life even more difficult!

Today I received a phone call from Kennedy’s physical therapist letting me know that the insurance company had contacted her directly to tell her that she was not to treat Kennedy any longer because they were not going to pay for it! Not going to pay for it? Big surprise since they have paid NOTHING for Kennedy EVER! The hospital, clinics, doctors, day treatment, therapists, labs, etc. have been billing and calling them from day 1 only to be met with a tremendous amount of hostility and not only a refusal of payment, but they have avoided answering questions or helping in anyway possible!! Yet, we continue to send them $300 a month!!! We have filled out all of their required paperwork, called and spoke with them directly, submitted medical records for everyone for the last year and jumped through every hoop to no avail! I can’t stand this anymore!!!! I mean, when is enough enough??? I am overwhelmed just caring for Kennedy, trying to be sure Austin has plenty of attention and hopefully give something to my husband and yet Primary Physicians Care of North Carolina wants to give me one more mountain to scale! They are the MOST difficult insurance I have ever encountered! They preauthorize everything and then refuse payment. They call all of Kennedy’s providers and harass them over the phone and by mail. Our pt even asked them today if they talk to parents the way they were talking to her! She was totally shocked! Well, her and I have worked out a plan to work together even if Kennedy can’t see her and it will amount to being more vigilant on my part and work hard with her at home. Whatever it takes!

The world needs anger. The world often continues to allow evil because it isn’t angry enough. ~Bede Jarrett

Hope-Faith-Courage
Mel

Well, since I just deleted everything I spent the last hour writing, let’s try it again only this time I’ll save it before I try and do something else!!! Ugh!!!

Yesterday we had our appointment with the radiation oncology team and while it did not go exactly as planned, it was informative. They had hoped not to have to sedate Kennedy, as her treatments will be only a few minutes each day…until they met her! After 21 days of steroids she was showing her worst side and was even screaming and fighting just because she needed to stand on the scale to be weighed. Because the second part of her appointment now has to be done in part with the anesthesiologist, we will be doing that on Friday. We spent 2 hours yesterday just going over Kennedy’s medical history since diagnosis (that is a novel in and of itself!) and discussing what would happen on the days she has radiation, possible short and long term side effects, and consenting to her treatment. On Friday, they will create a “mask� to hold her head in the exact same position for each radiation; she will have a CAT scan, x-rays, and full work up to prepare for her starting date of Tuesday, April 4th. It will be a few hours I imagine.

Most of what we learned yesterday only confirmed our worst fears and gave us new ones to worry about. The “good news� (if you can call it that) is that by radiation oncology standards, she will be receiving a relatively low dose that will probably cause minimal immediate problems for her. The prediction is that she will have a “sunburn� on her head as the worst problem. The long term side effects worry them much more because as I mentioned in my previous post, they are radiating Kennedy’s entire brain. Some of the side effects that Kennedy could have as a result of her treatment include: short term memory loss and problems with memorization concerning things like math facts, a whole host of learning disabilities and processing complications, IQ point drops of up to 30 points, cataracts that require retina transplants, damage to the pituitary gland that could cause growth and hormone problems, damage to the posterior or back of the eye and socket, vision problems, stunting of the growth of her skull possibly requiring surgery to correct, brain tumors as an adult (about 10-15% of kids with cranial radiation experience these 15-20 years later), hearing loss and some I just can’t pull out of my brain right now. You can imagine that this wasn’t the best news of the day. Some factors that put her at greater risk for these complications are: her age (her brain and skull are still experiencing rapid growth and this could have a profound affect on how this occurs as opposed to a child in their teens), the fact that she has already and will receive a greater than average amount of intrathecal chemotherapy that is also known to cause some of these complications, the fact that she is a girl (I know that is weird but for some reason they have been known to be at greater risk for some of these effects) and because they are largely targeting healthy cells. Many healthy cells tend to recover while leukemia cells are more fragile and will just die, but there is no guarantee as to how many or which cells will and can recover. It really is a wait and see kind of game. He said that he has seen many kids go on with few complications and others that always struggle after treatment. We are praying for healing for Kennedy with minimum side effects. I guess we should be thankful. With her initial white count at diagnosis, we were very fortunate she did not have CNS involvement as that requires higher doses of radiation to the brain and spinal column which has its own host of serious complications. What is hard to wrap my brain around is that we are mostly targeting healthy cells and going after leukemia cells we can’t find and don’t even know exist.

So why is it so important to do the radiation?? That is the question we have been asking ourselves for the last 10 months since we found out it would be necessary as part of her protocol. We even considered removing her from this study (AALL0232) and placing her on a protocol called Total XV from St. Jude’s which is similar but does not require radiation as part of treatment. By performing studies, they found that kids with high risk and/or slow response diagnosis were relapsing in their brains, spinal fluid and behind their eyes at alarming rates despite receiving chemotherapy. They added intrathecal chemotherapy in hopes that the circulating fluid would penetrate into these regions and wipe out leukemia cells. While this was true in many cases, there were still groups of kids who continued to relapse. At first they gave higher doses to all high risk CNS relapse kids with serious side effects and decided there had to be a better way to target only kids who needed it and find effective doses at lower rates. They began testing for what is called minimal residual disease (MRD) and found that kids with small amounts at Day 29 of induction therapy were more likely to relapse regardless of when they went in to “clinical remission.� Kennedy was one of those kids with trace amounts of MRD at Day 29. This not only warranted a longer, more intensive chemotherapy schedule but radiation to eradicate even trace amounts of leukemia cells that could be hiding out in the brain and behind the eye socket. For Kennedy especially, a relapse would be devastating. I do not in anyway want to minimize any cancer relapse and say that it would not be devastating for any family but her oncologists have made it clear that because of her recent round of VOD and the fact that her liver is still not functioning (and may never) normally she would not likely survive the necessary chemotherapy needed to obtain remission and prepare for a transplant. They have also confirmed that a bone marrow/cord blood transplant would likely cause VOD again in Kennedy and it would be fatal. At this point, her cure rate is 60-75% at best; a 1st relapse would give her approximately 30% and a 2nd relapse near 10% if she survived. We are unwilling to take any chances and know that her best chance for a cure is for it to happen the very 1st time. The most important thing is to give Kennedy the best possibility at living a long and healthy life. Yes, we are taking a chance with the intensive treatment and radiation but if we had chosen not to go through with it and she relapsed, we would always live with the regret that had we gone with the big guns that were offered we could have prevented it. It is true that her treatment almost killed her in December, but without treatment she would relapse within weeks and would no longer be with us.

So, are we happy about this? Not happy. Do we feel that we are making the best decision we can for Kennedy with all of the information available? Yes. Someone asked me early on how I can deal with pouring poison in to Kennedy’s body and I said it was because I will NOT give up on Kennedy. Sadly, it is a necessary evil for her to have a chance. I have tried in my journal to focus on those things that are positive in our journey with Kennedy but it is crucial to your understanding of what we are going through to know that with every medication we are faced with the possibility of terrible short and long term side effects. Not all but some are: permanent heart damage including the literal destruction of parts of the heart muscle, infertility, learning disabilities, a weak immune system, liver and kidney damage, permanent neuropathy, the development of other cancers as a result of treatment, muscle weakness, vision loss, etc. Not to mention that most children do not die from their cancer but from infections and complications caused by treatment. This is our reality but to do nothing is certain death for her. The cure rate in the 1960s was less than 5%-families were basically told to take their children home to die and they had very little time…less than a month. We have come a long way in our fight against leukemia but not without a price.

Okay, that is probably enough information for any one journal entry. Kennedy has physical therapy tomorrow and we meet again with the radiation oncology team on Friday. Tuesday she is scheduled to being radiation, have an LP with intrathecal Methotrexate, Cyclophosphamide and begin 4 days of Ara-C. She had her counts check yesterday and they believe that her counts may dip slightly but should be recovered by Tuesday to begin the next leg of treatment before maintenance. Maintenance…oh the sound of that word warms my heart! No, it is not the end of treatment but a much easier phase compared to what we have been enduring. It will continue until August of 2007 but will give us a least a chance to take a breath.

Hug your babies and pray for courage for our Kennedy.

If I had my child to raise all over again,
I’d build self-esteem first, and the house later.
I’d finger-paint more, and point the finger less.
I would do less correcting and more connecting.
I’d take my eyes off my watch, and watch with my eyes.
I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play.
I would run through more fields and gaze at more stars.
I’d do more hugging and less tugging.
~Diane Loomans, from “If I Had My Child To Raise Over Again”

Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body. ~Elizabeth Stone

Hope-Faith-Courage,
Mel

I know, I know…I said that my New Year’s resolution would be to stay more current on Kennedy’s journal. I have had the best of intentions but I’m sure that I am not the only one who has failed to keep up with my 2006 promises 😉 . The thing is, the longer I wait to update, the more I have to catch up on and the more I want to avoid it. Well, better get to it.

The Tuesday after her “short stay,â€? it was time for the next round of chemo. Once they start this chemo, it is no longer count dependent so even if she crashes they will just keep going. Because of the steroids though, her counts were very high for her, but would be in the normal range for all of us. I asked the doctor about that and she said that the bone marrow is forced to make healthy cells by the steroids, the steroids then kill the leukemia cells and then her counts crash completely at the end of the 3 weeks. This means that after we stop the steroids, her bone marrow will just stop producing cells and work to recover from the over stimulation. Kennedy will probably need platelets, red cells and will have NO immune system. In the mean time, she is cranky, cries, screams, doesn’t sleep and eats constantly. We know that it is not her fault and that it will end, so we try and be as patient as possible but it is difficult. Overall she looked good and her liver enzymes were under 100. Thursday she had physical therapy which I worried would be a disaster but she held out until the last 5 minutes before she broke down. I was very proud of her and Grammie treated us to lunch at Original Taco House…Kennedy’s favorite! She ordered a taco salad and a soft taco and brought most of it home after filling up on their homemade chips. Oh, we also spent some time helping Auntie Caryn and Uncle Jeff with the girls after her surgery. She had some not so fun complications that made recovery hard and long.

For the weekend we had a surprise visitor! Keith’s dad (the kids Papa Mike) arrived on Saturday with Tyler. Kennedy was with Grammie and Papa but was very happy when she got home and saw who was here. It has been months since we had been able to visit because of Papa’s work schedule and our inability to travel to Yakima, so this was wonderful. Keith even blew off his monthly poker game! That was a shock! It sounds like everyone in Yakima is doing well. Mike and Linda bought a new house with 5 acres and have spent a lot of time getting it cleaned up and moving in. Kennedy can’t wait until she gets in to long term maintenance and can go up and visit. Linda bought a horse from her cousin and Kennedy can’t wait to saddle up this summer. She also knows that the closer she gets to LTM, the sooner her Bailey girl (her dog) gets to move home and be with her. Papa was so busy getting out the door this visit that he forgot to bring Bailey with him but Kennedy got over it really fast.

We also had an extra kiddo! Our little Amber, Caryn’s almost 2 year old, spent the weekend with us! She is so much fun and really keeps us on our toes. We took her home Monday when we went to Auntie’s to help with the house and Emily so Uncle Jeff could work (and get a break!)

The next Tuesday, the 21st, Kennedy had her last dose of Doxorubicin and more Vincristine. Her ammonia is still all over the board and was over 100 again. Her enzyme levels are also high indicating that her liver is not at all happy with the drugs we are giving her. I’m just so thankful we do not have to repeat the 6TG again! We have to continue with the dexamethasone so Kennedy continues to be whiny and very difficult to deal with and very HUNGRY! She is back to being like a newborn where she sleeps in 2-3 hour stretches and eats day and night. Of course, this means Mommy doesn’t sleep either and because Kennedy is usually in our bed, Daddy doesn’t have much room or get much sleep. Thankfully, there is an end in sight! Because Kennedy is starting to have a lot of bone and joint pain, we spent the week pretty much at home. The highlight was Saturday when we went to Dollar Tree-the kids’ favorite store! We picked up some things we needed and coloring books for the clinic. Kennedy was very distressed when there were only 2 coloring books and they had virtually no pages that weren’t colored already. She actually worried about the other kids who would be disappointed with nothing to color so we picked up about 6 brand new books for the clinic playroom.

We also bought Kennedy some new journals as she taught herself how to write all of the letters of the alphabet. Why is this a big deal? We received her occupational therapy evaluation and she went from the 95% percentile to the 21% percentile in 10 months. Since her diagnosis, she has decreased bilateral coordination, visual-motor control, upper-limb speed and dexterity, balance and functional mobility and self-care skills. We are told by “expertsâ€? that these will probably be temporary but have heard enough from other parents that some may be long term. We are just now beginning to consider all the long term side effects of cancer and the intensive treatment, including radiation, that Kennedy has and will be receiving. They vary from minor learning disabilities to significant losses in IQ points. Other effects include a weak immune system (even after treatment), gross and fine motor skills lost that are not recovered and being infertile or having a difficult time getting and maintaining a pregnancy, especially as she gets older (30s-40s). It really is a lot to deal with and is only worsened when we know many kids who are having complications once they are off treatment and Kennedy still has a year an a half of treatment left! It seems that as time goes by (and I’m not sure if it’s because people are becoming use to Kennedy having cancer or become tired of dealing with it or just what) I have noticed that everyone else keeps going. Ok, not that the world should stop because of us or that people have the stamina to keep up with the enthusiasm that was there in the beginning, but it hasn’t stopped or become less intensive for us; in some ways, it has become more difficult over time. Our need for relationships and support has not changed. We are not used to this yet. I have tried to not be draining upon others, and I am sorry if I have, and perhaps this has given the illusion that we are doing great and our lives are back to normal. Hardly. I hate to think this is life of a cancer family. Our lives come to a complete halt while the world keeps moving and living. I still want to shout to everyone that “MY DAUGHTER HAS CANCER!â€? I was discussing with a friend about how I can’t believe that we are almost at the one year anniversary of Kennedy’s diagnosis. She remarked that the last year had gone by so fast and I thought, “No, it has been long, painful and slow.â€? Sure, I have gained tremendous blessing, spiritual growth and understanding of life over the last year but it has been very, very hard. Our lives are FOREVER changed. We see our lives as defined by before and after Kennedy got cancer. As much as I did not want to believe it would (and fought hard against it) we will be defined by this moment in our lives. I’m not trying to be whiny… really. We have made some dear friends through this journey, and saw relationships we valued fall away because of their comfort level or inability to cope, but for everyone around us life is returning to normal. I wish it was here. Many have remarked at my strength, and I know my strength comes from God, but what so many fail to see is me falling on my face in utter despair and grieving for those things that are lost. Many people would say we should be happy we have Kennedy (and my heart goes out to those families who have lost their beautiful and precious children) but I am still sad that she has lost her innocence about the world, that she will struggle to overcome difficulties in the future and just how deeply this will affect her future. While we want to be unique we do not want to be so unique that we are far outside the definition of normal. I did not want to believe that not being “normal” would bother me but I know it’s true every time we take Kennedy out in public and people stare or we have to explain why she is in a full blown rage because her medication wreaks havoc on her hormones and emotions and people think we are just terrible parents who can’t control our daughter or when she throws up in somebody’s office (and I don’t mean a doctor’s office either) and I have to catch it in my hands and look at their face. We are different and changed by what has happened. We will not go through life the same, naive to the dragons lurking in the shadows.

Tomorrow will be a long and emotionally draining day. We will spend the morning meeting with the radiation oncology team to go over the plan and discuss her treatment. Unlike with tumors, we are not targeting cancer cells but using radiation as a preventative of leukemia cells hiding or growing in her brain and central nervous system. They actually plan to target her entire brain. There are complications with radiating tumor cells and non-cancerous cells have been damaged that surround the cancerous tissue…now imagine you are targeting healthy tissue to begin with…and the brain no less! You can imagine how I am feeling about this. The oncology team assures us that it is a lower end dose of radiation, but let me repeat myself…we are targeting HEALTHY cells. We know it annihilates cancer cells and we are targeting healthy cells in hopes that she will not develop pockets of leukemia cells in her brain. A relapse in the central nervous system is not good and very scary. They use to see a higher rate of it, especially in already high risk and/or slow response kids, and that is why they use intrathecal chemo and radiation in hopes of eradicating it. This is just a difficult time for all of us here…especially those of us who can comprehend the magnitude of this decision.

On a lighter note, tomorrow is our last day of dexamethasone!!! Soon, our little princess will be back to her normal, less whiny self. She does not have a feeding tube anymore…she bit a hole in it…and is gaining weight. We all hope she does not slow down significantly again and need another tube but we will wait and see. The new oncologist, Dr. Judy McGann, is wonderful and allowed Kennedy to be part of the decision making process which really helped and empower her.

Okay, I am emotionally exhausted today from all that is coming and also with dealing with Kennedy’s emotions (oh, and Austin is home for Spring Break) so I hope to be hitting the hay soon. Please pray, too, because I have been fighting an ear infection for over a week that even warranted a late night ER visit for pain management. I have not had time to see my regular doctor but hope that I will soon.

We really appreciate the warm words of affirmation in Kennedy’s guestbook and did you know that you can comment on specific journal entries? If you click the comment link in the right corner, you can leave messages for us! We would love it!

Also, we still have t-shirts and bracelets and please join us for the upcoming fundraiser on Tuesday, April 11 at Papa’s Pizza at 162nd and Stark St. in Portland! We will be there that evening but you can come anytime that day and let them know you are “Eating for Kennedy Duval� and ½ of whatever you buy will be donated to her Contribution Fund! We are still fighting the insurance (they have paid nothing since November 30th) and will be in contact with the Oregon Insurance Commissioner soon but your help is vital to our ability to care for Kennedy. Thank you to all who have taken the time to help with meals, donations, time, cards, phone calls, e-mails, messages, etc. We greatly appreciate all of the help and could not do this without you.

Ok, now I have to go to bed.

O bed! O bed! delicious bed!
That heaven upon earth to the weary head.
~Thomas Hood, Miss Kilmansegg – Her Dream

Hope-Faith-Courage
Mel

The steroid monster has returned!! It sure didn’t take long for our loving little girl to grow horns and her halo to burn up! We’re only about 3 days in and the whining is wearing on me. Thankfully, Keith, Austin, Grammie and Papa help with her and that makes it easier for me. At least her appetite is back!

We did get a luxurious night at Hotel Emanuel last night. Around bedtime Kennedy began to complain of pain in the area below her ribs on the right side. Since this is where her liver is, I became pretty concerned. I asked her more questions and found that her back was hurting in the same place too. She replied that it was not quite a crying face but it was a sad face. Because of her bout in December and the fact that she is back to intensive chemo as of Tuesday, I called the doctor and she felt it was important to check her counts. Knowing an ER visit would only cause more trauma, we did a direct admit to the 3rd floor. Kennedy immediately started crying; not because she had to get her port accessed, but because she was terrified she would have to go to the PICU. Despite reassuring her, she would not believe us until we were in her room on the school age unit and she saw her favorite nurse, Megan. We knew we had Megan because there was a bear on her bed with a diaper on it’s head. Now, for those of you who don’t know…Kennedy calls Megan “Princess Potty Pants” because Kenn was able to get her to wear a pull-up on her head like a crown. The name just stuck. This was very reassuring to Kennedy last night. Anyway, Kennedy has been suffering from post traumatic stress after her stay in the PICU and in her mind she just knew that was where she was going. In the last week or so she has begun to articulate what the experience was like for her and no wonder she was so scared! That is another journal entry in and of itself. Ok, they checked her counts and because her ammonia levels went from a normal 37 (finally!) on Tuesday to 150 on Thursday, we stayed the night for observation. Dr. McGann, the new oncologist, also ordered an ultrasound for this morning. Everything looked good on that meaning there were no pockets of fluid building up although her gall bladder looked irritated. The believe that her liver is probably irritated by the new chemo and steroids but not functioning at a point they would call “toxic.” Very reassuring I know! Thankfully this time they are watching it very closely so it doesn’t become irritated and shut down completely again. So, the ultrasound looked good and her ammonia level was 115 this morning and we were able to go home. They told us that at noon but you all know how check-out works around there…we left after 6pm. Kennedy was still scheduled to get chemo today and there was some confusion via the resident about one of her meds so things got held up in the pharmacy. All I can say is thank God for childlife and how do we get one for our own??? Melissa was able to distract Kennedy and play with her and found a doll Kennedy could give lots of pokes giving her a lot of power before her PEG injections today. She was able to communicate a lot of her anxiety about getting “pokes” during their play today.

Sorry it is so short but I am totally exhausted! I promise to find time this weekend to write and know that Kennedy appears to be doing well tonight. We are taking a proactive rather than reactive attitude regarding her liver this round and while it may mean more hospital stays, hopefully there will be less, “if we had only been here a few days ago” regret this time.

Love-Hope-Faith,
Mel

I wish I had a good excuse for not updating Kennedy’s site but I really don’t. After receiving her last dose of Methotrexate on February 24th we were blessed with a two week break! She still had to go to physical therapy on the 31st and a counts check in the clinic on March 3rd but otherwise we had a taste of normal life again. Oh, and thanks to my cousin, Amanda, in beautiful Calgary, Canada! My hands are back to normal and feel so much better! I love all the products! Thanks to those who have ordered wrist bands and T-shirts! We could not do all that we do for our family and especially Kennedy without your support.

Did I mention we have a queen in our midst?? It’s true. Kennedy is the Coos County 2006 Honorary Fair and Rodeo Court Queen! Queen Alyssa, Princess Rachelle and Princess Jenny blessed Kennedy with this incredible honor! Alyssa and Rachelle (and in spirit, Jenny) arrived with their entourage in tow to crown our girl with gifts that included 2 pairs of Wrangler jeans, rodeo tops, 2 sashes and a pin, boots, belt and buckle, hat and crown, picture of the court, honorary plaque and her very own stuffed horse. She loved it and could hardly speak!! It was a wonderful surprise and she stripped right down to change in to her new gear! These girls traveled over 4 hours one way to crown their queen and invited her to the Coos County Fair and Rodeo in July but also to attend other events with them in her “queenly� clothes. She is looking forward to a fun filled summer! She carries the picture and won’t even let us put it on her wall. That night we went to pizza with our family and she had to have all her get up on! She felt like a star! Thank you, girls for making our little princess part of your court this year and we can’t wait to see you again!!

One fun thing we did was go to Soft Star Shoes in Corvallis on the 28th. The team of “elvesâ€? were awesome! They absolutely spoiled us! Austin was able to pick out the colors and style he wanted and even helped them make his new moccasins. He was very interested in how they were put together and even came home and made his own shoes for us out of construction paper. What a creative mind! They worked, measured and came up with 2 styles that work well for Kennedy. They fit snug over her brace and yet are easy to get on and off. She also picked the colors (pink…no surprise there) and was able to help in their production. Or at least sort of…she really liked the play area they have set up and found the play food to be the best part of her day. So we spent a few hours there learning how they do what they do and they even showed us some new styles they are working on! They are adorable and everyone should check out their website soon to see them. The kids were hungry and exhausted but the elves even wanted mom to have a pair of her own. They are absolute heaven! Did I mention that all 4 pairs were donated by Soft Star Shoes? I keep trying to tell them that they are angels disguised as elves! They are a wonderful and make beautiful shoes for kids and moccasins for kids and adults. Everyone should take the time to check out their work and support local businesses in Oregon. They have been in business for over 20 years and are only 2 hours from Portland. Their link is on our site and we are even quoted there…twice! I also have catalogs so feel free to ask me too.

On our way home, we stopped at Willamette in Salem and saw some of my professors and friends. That was so much fun as most people haven’t seen Kennedy since this past summer or when she was first diagnosed. We spent more time than we had planned there but it was worth it. It made me realize how much I miss my “community� there and that returning even for 1 or 2 classes in the fall will be rejuvenating for me. They all invited me to bring Kennedy and Austin if I need to and I will appreciate the ability to work with them even when I can’t be in class because of the kids. We also stopped by the Willamette Store and I made the mistake of telling the kids to just put their stuff on the counter and have her start ringing it up because I was visiting. It wasn’t bad but I wondered where the pens, notepads and bouncy balls came from. What??? I didn’t remember any of those!

Kennedy did well in physical therapy. She has returned to her pre-PICU status so that is good and now she will only be going 2x per month for now. Part of this is how well she is doing and part of it is 3 weeks of steroids coming up. There is really nothing they can do with 3 weeks of Vincristine or steroids until it is all over and we see what damage has been done. It’s not like we can really even maintain her abilities just because of how the drugs work. As we have all along…we hope for the best and prepare for the worst. She does love her new braces and shoes and she is walking so much better.

Tuesday we went to lunch with Athena, Breanna and Mackenzie at Papa’s Pizza (check out the page under fundraisers that Papa’s Pizza is doing to honor Kennedy) That was so much fun for Kennedy. Just to run and play with her pals. The play area is deserted at lunch so she had a real blast. Her ANC was high and I just wanted her to have a good time. I had fun just hanging out and having adult conversation about something other than Kennedy’s cancer. I love all of the incredible families we have met but I know they will agree that feeling “normalâ€? and talking about everyday things once in a while is one of the best things we can do for our spirits. We picked Austin up from school and then headed out to Auntie’s to get the girls for a couple of days. My sister had to have surgery on Wednesday and I knew she would need that night and the next morning to put all the pieces in place. The girls were raring to go and so we packed my car with car seats, bags, pillows, blankies and babies and away we went. I told Grammie and Papa that I found these two little sad girls on the side of the road with no families. They just laughed! Emily thinks that is the funniest thing when I say that. Wednesday was an early day but we all survived and had a lot of fun. Thursday I went to see my sissy and got a reprieve, thanks to Grammie, and headed to the grocery store.

Our weekend was pretty quiet. We had Amber Saturday night and stopped by Auntie and Uncle Jeff’s on Sunday. Keith treated us and Grammie to Chang’s as we know that soon Kennedy’s ANC will be shot and there will be no more eating out for us. It was delicious and we felt ready to start the week. Oh, I forgot to mention that on Friday Kennedy had her counts check. Her ammonia levels were still above normal but everything looked really good and ready to roll on Tuesday with chemo.

Monday was uneventful as usual. Oh, how could I forget??? Many thanks to the kids at Oregon City High School for fundraising this past month (thanks, Tiffany for all of your hard work in getting it started) and for the youth at Mountain View Community Church (especially Becky) for the benefit concert this past Saturday. You guys are all so wonderful!! I don’t have all the numbers yet but hope to soon and will post them when I do. Tiffany is doing a presentation on Thursday about ALL and Kennedy and I are hoping to make it. Also, the drawing has been done for the Timberline packages raffled off at the Indoor Garage Sale and I will post those winners ASAP.

Okay…today. Kennedy’s counts were perfect for starting chemo (we knew that they would be) and even her liver was looking good. Her enzyme levels are still up but her ammonia was in the normal range. Does this mean we are free and clear? Sorry, no. Tricia, the nurse practitioner, reminded me that those numbers are with her supportive care meds and she has had no chemo for 2 weeks. They do not expect them to remain that great over the next 2 months while she is getting Delayed Intensification 2 but it was certainly the best place we could be going in. She had her LP and intrathecal chemo, her IV Vincristine and Doxorubicin. She was scheduled to start 3 weeks of steroids (run…run for the hills!!!) but there was a problem with the pharmacy and prescription so we had to have the oncologist straighten it out and she will start tomorrow. Whooo…one more day before the nightmare begins. We do have dates for radiation and a full-plan now so check the DI2 page under her treatment schedule. Because she is scheduled for full cranial radiation, she would not have gotten the 6TG anyway so they are doing nothing to replace it. Kennedy is having some problems with runny, crusty eyes and nose but the NP thinks it is because she has very few eyelashes or nose hairs to keep the dust, germs, etc out and therefore, more fluid is needed to keep them clean and clear. She also has a rash under her tape on her NG tube so we switched to one that is more hypoallergenic. Her skin is so sensitive that it begins to break down from the constant wearing of tapes and bandages. Overall, she is doing well and is in the best place for starting a re-induction type therapy. She is doing absolutely fantastic compared to where she was a few months ago. They are finally breathing a sigh of relief and sharing how close she really was to dying at Christmas. They have collectively agreed that telling us would not have helped and they were holding on the slim hope as much as we were. I’m really struggling emotionally with this. I absolutely trust that God is in control and has a plan but losing Kennedy is not my plan. I am amazed at how close we can come to death’s door and still be pulled back. Kennedy is suffering post traumatic stress from the experience so emotions are constantly being scrutinized and in our face lately. When does the horror of cancer ever end?? Isn’t it enough that we have to deal with the whole cancer thing? Why are there more effects that just keep hanging on? And guess what?? We still have 1 year, 5 months and 12 days left of treatment if things go “according to plan.� We may be almost to the end of the worse part, but we aren’t even half way through! Then we have another 5 years of frequent doctor’s visits (every month the 1st year, every 2 months the 2nd year, every 3 months the 3rd year and then every 6 months for years 4 and 5) before she will only need to go every year. 6 ½ years before they will say she is “cured� if she has no relapses. She will be almost a teenager!! Sorry, this is not my cheeriest entry…it must be the day.

This is supposed to be a place to write about my feelings and by the time I write about what we have been up to I’m ready to be done. Maybe tomorrow…tonight I’m exhausted and I know I have a busy day planned playing with my nieces and taking care of my sissy. It will be a nice reprieve and a chance to regroup and think about where I’m at and where I’m going. If I wouldn’t let so much time pass…I wouldn’t have quite so much to write…I would have more time to write about where I’m at. Today…I’m struggling to get my footing. I know that the ground I walk on is solid, but my feet are tired and slick. Today is just not my best day. Please don’t tell me that I am taking on too much, you know exactly how I feel (unless you possibly can) or that I should “lighten my load.� I know that I am doing exactly the things that God would have me to do in this moment but I have a right to sometimes feel like the burdens I am carrying are heavy. God will bless us for our faithfulness in this walk but as we are refined in the fires, it can be painful and difficult to bend. After all, He could never call us to work HIS miracles if we could do it all on our own and of our own power. We are NOT miracle workers except by His hand working through us. It doesn’t mean it is easy or fun or painless but the rewards are greater than all the monetary riches everywhere. Today is just not as pleasant as I would like.

Love-Hope-Faith
For without these we would have Hate-Despair-Darkness

Mel

Kennedy had physical therapy today and it went really well. She got her new orthopedic braces and they are helping her so much. The bad part?? No shoes fit over them so we had to buy sandals until we can go down to Corvallis to meet with the elves (I really think they are angels!) and have some shoes made for Kennedy. She had a great time and moved with a lot more confidence. She also had her home health nurse come out for a nutrition assessment…the insurance is precertifying nutrition but we have heard this song and dance before. They said if we do the assessment they will start paying…I won’t hold my breath. They have paid for NOTHING so far despite the fact that there have been life and death decisions to be made.

I also bought Kennedy the most beautiful pink Easter dress, hat and purse. I haven’t gone all out since her 1st Easter but it is a way for me to hold on to hope for the next 2 months as we revisit the worst part of our journey. I am determined that she will be healthy and thriving for Easter Sunday and will look dazzling in her new dress. Easter will be the perfect day of celebration…the day Jesus beat the devil and gave us all everlasting life. The day the King cheated death.

Thank you so much to my cousin, Amanda for sending me all the wonderful products to return my hands to their pre-diaper days and all the pampering supplies! What a tremendous blessing this is to me and I can’t possibly thank her enough. They smell wonderful and I appreciate not only the goodies but also all of the instructions to go along with them. When Kennedy recovers, we would love to visit all of you in beautiful Calgary, Canada. We are huge rodeo fans and hope to join you for the Calgary Stampede.

The bracelets are in!!!! Get yours now while supplies last!!! Just e-mail us if you would like some of your own or would like to sale some for Kennedy. They are $4 each or 3 for $10!! They come in 5 beautiful colors! They say “COURAGE4KENNEDY” on the front and Leukemia Warrior inside.

I had seen this on Julianna’s website (www2.caringbridge.org/canada/julianna) but saw it again after Josh’s mom posted it there. Many of us, even those not currently receiving chemo, are going through a rough time with cancer and are finding inspiration from each other. Many, many parents suffer post-traumatic stress disorder after it is all over and have a hard time recovering emotionally from walking this journey with their children…sometimes more so than the kids-especially if they are little. Please pray for parents as they walk along side their fighting warriors. Our gut check moment was this past Christmas which is just now really starting to hit us.

“When our family history is written, this will be our watershed moment. Our collective gut check. It was the death of the last of our innocence, and the birth of our resolve. cancer is a bitch. Not only does it systematically dismantle your physical health, but it will gladly steal as much of your emotional and psychological well being as you allow. And if you are reading this and you are just starting down your own cancer path, pay very close attention, because I just typed the five most important words in my entire two and a half years of cancer hell…

AS MUCH AS YOU ALLOW!

It can take away your health or your hair, but cancer doesn’t automatically take away your hope, you allow it to. It doesn’t take away your dignity, you allow it to. And it damn well has no business taking away your resolve, unless you allow it to. Every aspect of your coping is yours to control. When you don’t make the conscious decision to apply that control, you are making the unconscious decision to forfeit that control to cancer. You may not even realize that you are doing it, but no decision is still a decision, but by omission. And cancer will gladly and greedily take as much as you allow it to.

Don’t let it! Stare your demon square in the eye and yell “NO!� Make the conscious decision to fight cancer on each and every front. Physically. Emotionally. Psychologically. Spiritually. Any ‘ally’ you can think of, draw your line in the sand and spit in cancer’s face! I know first hand how difficult it is to do, and I in no way mean to trivialize what is undoubtedly the defining challenge of our entire lives. But you have to do it, man, you just have to. You and the wonderful people that love you deserve nothing less. Do all the things that make life the beautiful commodity that it is. Love like it’s Valentine’s Day every day. Laugh like you’re Chris Rock’s drinking buddy.

Not because of cancer, but despite it.
Luv,
Julianna’s dad

P.S. – and don’t ever let me catch you capitalizing the word ‘cancer’! Remember, it doesn’t respect you, so don’t respect it.”

“If Children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but to HOPE? We have two options, medically and emotionally: give up, or FIGHT LIKE HELL”.

-Lance Armstrong

“It’s not the size of the dog in the fight, it’s the size of the fight in the dog.�
– Mark Twain

Kennedy: Gaelic meaning “hard headed warrior!!”

Here’s to fighting the good fight,
Melenie

I am amazed everyday when I look at Kennedy at how resilient kids can be. God could do so much with us if only we stayed childlike…it’s no wonder He asks us to come to Him as a child would.

I know that I have been way behind but it is only because Kennedy is doing well and I’m trying to keep up with her. I am more than a week late on getting updates so I will just start there…

Friday, February 10, Kennedy had a 9:30 lumbar puncture with Methotrexate, IV Methotrexate and IV Vincristine. Her counts had recovered quickly so she got 130% of the normal dose. I was a little worried but held on to the fact that she had been doing well. Her ammonia levels had continued to be a problem, so Dr. Norwood moved us from 2x a day to 3x per day. Lucky us…more diapers! We are using more diapers now than we did when Kennedy was a newborn! This took some getting used to because she had been potty trained for almost 2 years when she was diagnosed. She breezed through it and even woke up hungry. Luckily, the people who work in the Heartbeat Café downstairs know us and whipped up some bacon even though it was closer to lunch. She devoured it and we were able to leave at a relatively decent time for a change.

The Indoor Garage Sale was this weekend. Many, many thanks to Katharine Wilson and Willamette Falls Hospital for organizing this event, it was a huge success! Thank you to so many who donated items, handed out flyers, worked the sale and helped with set-up and clean-up. I would like to thank my dad for working all day both days and spending an entire weekend posting flyers around Molalla and Mulino. The event raised over $3400!!! Yes, you read that one right! We were all expecting around $500 and would have been very blessed but this was amazing! Check out the link to the Indoor Garage Sale to find out what that much money is capable of doing for our family!

Saturday night we drove to Albany to watch our friends Adam and Ashley Fults ride in the Cupid’s Cowboy Rodeo at the Linn County Fairgrounds. They both did a great job! Kennedy was so excited to see Ashley, she begged me to take her down to where she was waiting for her ride. Kennedy had a chance to sit on Ashley’s horse, Dandy, and after the rodeo was able to ride Breezy bareback in the parking lot. What a thrill it was for her. We had not been able to see the Fults family since Kennedy was the queen of the last rodeo in October, the Boo Boogie Bash. It was wonderful to see them all again. A lot of people remembered Kennedy and came up to talk to her. The people at the gate selling tickets even recognized her and let our family in for free! She felt just like a celebrity. Kennedy even had a chance afterwards to say “Hi� to Wayne the announcer who has been following her story and was just as happy to see her as she was to see him. It was a wonderful evening…topped off with Christmas gifts from the Fults. Of course, they were horse related gifts! Kennedy was so excited and can’t wait to see them again. It was also Ashley’s sweet sixteen birthday later that week and we hope she will be able to drive up soon and visit with us.

I got a special break on Sunday…my aunt Judy and I had lunch at Sweet Tomatoes in Clackamas and then headed over to Old Navy where she blessed me with a new pair of jeans! Thank you, aunt Ju! It was nice to get away and just talk without interruption. Kennedy got to spend the afternoon with Uncle Mark, Chelsea and Joseph. She was just tickled because she got to help give Waffles and Peanut (the puppies) a bath. She could not stop talking about it all week.

We also traded in our dying minivan. It has not run the same since it was hit on the passenger side and over the last year it was telling us it could no longer go on. Unfortunately, we had no choice but to run it until had to be taken out and shot. Last year we went through several transmissions and it had begun to leak oil like a faucet…literally. It had no reverse, sounded terrible, smoked, was overheating until we fixed the fan and was very unreliable (having left the kids and I stranded several times!). Many thanks to Molalla Chevrolet who saved us. God works in mysterious ways…they happened to have a flyer from the garage sale in their window and we had Kennedy with us. Then the sales manager who negotiated with the bank, his wife had just finished chemotherapy a year and a half ago for cancer. We owed way too much on our van and we were prepared to tack it on but instead, they just ate the entire cost. They sold us a pickup for below blue book and kept the payments very reasonable. Now we finally have 2 reliable vehicles (remember we also have a car that Keith’s friends helped us buy and fix right before Kennedy’s diagnosis). With two parents always running all over this is such a blessing. God’s timing is perfect. We had tried to get rid of it a year ago and could not do it for what we could afford so we ended up putting over $1000 in it to no avail. The sales manager said that he told his wife it was the smallest deal he had ever made but our situation just really touched his heart.

Monday, since Grammie was off recovering, we met up with Auntie, Emmy and Amber for lunch. We went to Sweet Tomatoes and they loved it. Grammie, Auntie and the girls had never been there so it was a real treat for them. It is so fun to do “normal� things occasionally.

Back to Kennedy and our week…Tuesday it was back to the clinic for more counts and to check on her liver function. Her counts were fine; while they had dipped she was still holding her own. Her ammonia levels were down close to normal. We decided to back down to 20mg/2x. We were to return on Friday for a counts check and a liver function check. She also had physical therapy which continues to go well and she is walking better every week. Her new orthopedic braces should be here tomorrow or next week. She still has obvious foot drop/ankle issues, but she no longer toddles around the house. To celebrate Valentine’s Day, we took the kids to Godfather’s Pizza.

Friday, her counts looked great as far as handling the chemo but her calcium was dangerously low and her ammonia was back up. What a mess! So we added Tums to the regimen at 3x per day and continued with the Lactulose now at 3x per day again. Oh the diapers and cracked hands! I swear, if I never have a watery, poopy diaper to change again it will be too soon!! It looked like we were on for her last dose of chemo in Interim Maintenance 2 for Monday.

So what did we do this weekend?? Kennedy’s ANC was so good that we went to 2 birthday parties!!! Now if that is not doing normal stuff, what is? Saturday was Landy’s 7th birthday but first American birthday. Well, first real birthday celebration ever. Our friends, the Wilson’s, adopted Landy from Haiti and he had never had a birthday party before. We loved being part of it and enjoyed the beautiful smile on his face as he opened all of this presents, played with the kids and ate his very own birthday cake. What a blessing it was for us to be a part of the family’s joy. They are an amazing family and we look forward to celebrating future birthdays including those of their children who are still waiting in Haiti to come home.

Sunday was my darling niece and goddaughter’s birthday. Miss Emily is now 5!!! I can hardly believe it myself! We enjoyed a very fun afternoon at Build A Bear Workshop with many friends to celebrate. The kids made their own babies, bought clothes and then headed to the party room for cupcakes and to watch Emmy open all of her gifts. Austin made a dog named Mikey and bought him a football uniform and Kennedy got a purple bear named Princess. The purple bear is the Nikki #3 bear and a portion of the proceeds from the sales go to children’s charities. We found out from a sales associate that the Clackamas store’s proceeds go to children’s cancer research. So, if you are planning to go to Build A Bear, you could help find a cure for childhood cancer just by buying your own Nikki bear. You can’t miss her, she is adorable! Emmy had a wonderful birthday and Kennedy enjoyed the frosting on the cupcakes and watching Emmy open the gift we chose for her. Emmy had a wonderful time. My kids were excited to see Ally, Erica, Ryan, Aidan, Bekah, Emily, Amber, Haley and Conner. As I have said before, we have a new appreciation for the “normal� things…even the kids do.

Last night we did have something interesting happen…or I should say that Keith did. Around 1am he woke up with a sharp pain in his right ear and a lot of pressure that came and went every few minutes. He also had blood in his ear. Because he was getting over a cold, I was concerned that he might have a bad ear infection or worse that his ear drum had ruptured. He was going to go back to bed but I knew it must be bad if it woke him up. I mean the guy can sleep through ANYTHING. I insisted we go to the ER and have it checked out. We did and he had a real live bug in his ear. Not a bacteria but a living bug. I know this is stuff of urban legend but it was a bug and it was still alive!! It was scratching the heck out of his ear drum and causing pain. They drowned it with Lidocaine and numbed Keith’s inner ear. They tried flushing it and suctioning it but the bug had died with its wings open and its legs splayed so it was stuck. They were finally able to get it moved and after using equipment to hold his ear canal open, they used scissor clamps to reach in and get it out! It was an elder beetle which is very common where we live…OUTSIDE! If it would have been me, I would have lost it but you know Keith…he was totally calm about the whole thing. The doctor said it is extremely rare for this to happen to someone sleeping inside. They do see it in homeless people and those camping on the ground (outside). And everyone that he had seen with it had been running around screaming their heads off because it is so painful…not my man! As with all things, he was cool, calm and collected. The nurse joked as were leaving by asking Keith if he had a warm, dry place to sleep tonight…we just laughed. We got home about 15 minutes before his alarm went off so he decided he was awake and might as well go to work. I couldn’t believe it! I would have been staying home whining and sleeping all day. Now I know why everyone describes the guy as a “man’s man.â€? He is one tough cookie. His ear was bugging him (no pun intended!!) but he went after I put drops in it and didn’t complain one time. WE DID NOT TELL THE KIDS IT WAS A REAL BUG!!! THEY ARE ALREADY FREAKED OUT BY THE ELDER BUGS AND THEY WOULD NOT SLEEP IF THEY KNEW! PLEASE IF YOU SEE THEM DO NOT MENTION IT OR EVEN COMMENT ON THE SITUATION!

So today…her counts were great and she received 180% of her dose of Methotrexate and her normal dose of Vincristine. I was very concerned because her white count was over 5. Normal is about 10-14 but because their cancer is in their white blood count, it should not really be above 2 or 3. Dr. Norwood wasn’t too concerned but I did not like it one bit. He said that we have to use IM for a break and we can’t wipe her out all the time. I agree but it still makes me nervous. Her ANC was over 3000 and during maintenance they want it between 500-1500. Kids with higher ANC’s consistently during treatment often run a greater risk of relapse. Speaking of…Dr. Norwood gave us the bran today. While most leukemia kids have a 80% + cure rate, Kennedy is closer to 60% and 75% at best because of her high risk status, slow response and over sensitivity to chemo. He feels that a relapse now (before maintenance) could mean quality of life care for her because her body would not handle the very intensive chemo needed to get her back in to remission and cure her. A relapse during maintenance or in the 5 years following treatment and he gives her a 20-30% chance at survival. He did not feel that she is a candidate for bone marrow transplant because of the heavy chemo necessary to prepare for transplant. I asked him if he thought she was going to relapse and he hopes not…he just wanted us to know what we are looking at. It does worry me…just having this conversation at this point. He also shared with me that when she had VOD over Christmas he did not expect her to survive. He was very pleased and hopeful because she did but he was worried we would have to have “the talk� at Christmas. It has really hit me lately that we almost lost Kennedy. Wow…to even write it feels heavy. Today I just feel worried and have felt all along that we could be without her. I just pray for God’s will and I have faith that she can still beat this. We are coming up on Delayed Intensification 2 which almost killed her last time (DI1) so I have a lot weighing on my mind right now. This next round will include radiation and many changes from protocol that the drs. have yet to agree on. There are many drugs which have to be processed by the liver and Kennedy’s is still not functioning normally. Just sitting her makes me feel sick. Please pray over the next couple of months while we walk out the next test…we are really stepping out in faith. Dr. Norwood told us in the beginning that it is a very delicate dance between killing the cancer and killing the patient…now we know why. I just need more time to process what is happening and then I will be back to share my thoughts, feelings and ideas.

Do not be afraid of tomorrow; for God is already there. ~Author Unknown

The wise man in the storm prays to God, not for safety from danger, but for deliverance from fear. ~Ralph Waldo Emerson, Journals, 1833

Love-Hope-Faith,
Melenie

For all of those families living in the Portland Metro area, please tune your radios to 105.1 The Buzz for their 28 hour marathon to raise money for an incredible organization, the Children’s Cancer Association, which does SO MUCH for local families with children fighting cancer. They provide the chemo pal program, the music therapy program, the Caring Cabin at the Oregon coast, Cancer Pages, the family resource room at the hospital and so much more. They have been essential to our survival these past 9 months. Kennedy has a wonderful chemo pal, Amy Guthrie, she loves karaoke, we have used vital resources in the Cancer Pages and we are looking forward to using the Caring Cabin soon. They are auctioning off incredible prizes until 10am tomorrow and many people are calling in to share their stories. It was very emotional for us but we just couldn’t seem to tear ourselves away from the radio. The CCA was started by the Ellis family who lost their daughter Alexandra to cancer. Rather than be swallowed up by their loss, they have given back so much to all of the families facing the same journey.

http://www.childrenscancerassociation.org/

http://www.1051thebuzz.com/

For those outside the Portland, OR area, you can listen to the show at the above address.

Thank you everyone for everything…update about Kennedy to follow tomorrow after her LP and chemo.

Love-Hope-Faith,
Mel