Courage for Kennedy – Journal


August 4, 2006

100 Things About the Duval Family

Category: General – Melenie 11:05 am

A friend of mine did this really great list of 100 things about her on her blog and it was really interesting to learn so much. Now, lots of you know us but some don’t so I thought I would post 100 things about the Duval family 🙂 Hope it’s not too boring!

1. Kennedy was studying classical ballet at the time of her diagnosis.

2. Austin has played 4 years of soccer, 4 years of baseball, one season of wrestling and one season of rough stock rodeo.

3. Melenie is a Rhetoric/Media Studies major working on her Bachelor’s degree.

4. Keith went to school to operate heavy equipment after 5 years of working in a factory.

5. Keith and Melenie first met at a New Year’s eve party and while they didn’t say one word to each other…3 months later they were inseparable.

6. Austin licked his sister the 1st time he met her when she was born.

7. Kennedy started calling Austin “Bubba” when she could not say “Brother.”

8. Our nephew, Jay, lived with us for 6 years and still has a close relationship with Austin.

9. Keith played football, baseball, wrestled and was a power lifter as a teenager.

10. Kennedy’s favorite color has always been pink-even at a year old she would consistently pick anything pink whether it was a toy, clothes, blanket or food.

11. Kennedy’s favorite foods as a baby were salmon, peaches and avocados…now she won’t eat any of these.

12. We share a house/property with my parents and have lived with them off and on for over 6 years.

13. Both Austin and Kennedy were born via c-section and both were born with beautiful auburn hair.

14. Austin has asthma and was diagnosed at 1 year.

15. Keith was born in Fort Worth, Texas.

16. Melenie is still afraid of the dark.

17. Keith and Melenie were married in the Yakima County Courthouse on a Thursday and had to wait until court was over. Keith was sitting at the defense table when he signed the marriage license.

18. Melenie has Keith’s name tattooed on her left leg and had it done before they got married.

19. Austin wants to go to college as an English major.

20. Kennedy once told us that she didn’t need to go to college because she was going to grow up and be a princess.

21. Tigger stole Austin’s Mickey glove at Disneyland.

22. Austin’s favorite colors are blue and green.

23. Melenie hates having a cell phone.

24. Both Keith and Melenie did not finish high school but went on to get their GEDs and both went to college/trade school.

25. Keith loved meeting Sleeping Beauty at Disneyland.

26. Melenie has a half brother she has never met and a younger sister.

27. Keith has two sisters and a brother.

28. Both Keith and Melenie are oldest children.

29. Melenie is scared of birds and terrified of them flying at her or landing on her…she has NEVER seen the movie The Birds.

30. Keith claims that he isn’t scared of anything.

31. Austin has wanted to homeschool since kindergarten.

32. Kennedy has never been afraid of animals and she absolutely loves dogs and horses.

33. Melenie is terrible about checking her messages and returning phone calls.

34. Keith once gave a kid a “swirlee” and his mother had to come pick him up from school.

35. Austin’s birthday is so close to Christmas that he thought it was all the same thing until he was 3 years old and we started having his party earlier in the month and away from home.

36. Kennedy was due two days before Keith and Melenie’s wedding anniversary.

37. Melenie’s first concert was Whitney Houston.

38. Keith was a plumber and most of the men in his family are plumber/pipefitters.

39. Austin has no desire to be a plumber but he would like to be a writer, heavy equipment operator/truck driver and/or a professional rodeo cowboy.

40. Kennedy still wants to be a princess.

41. Austin has always been shy and does not like strangers.

42. Kennedy celebrated her 5th birthday inpatient at the hospital getting chemo.

43. Melenie loved watching the Dukes of Hazzard when she was a kid…ok, and she still does.

44. Both Keith and Austin love watching Walker, Texas Ranger.

45. Melenie had her 1st kiss when she was 14.

46. Kennedy better not have her 1st kiss until she is at least 21!

47. Austin is very protective of his sister and does not want her to date until she is in her 20s. His friends will never have a chance.

48. Austin kicks his mom’s hiney at video games and now she won’t play with him anymore.

49. Keith has always beat Melenie at video games with the exception of Tetris-she rocks!

50. Keith has a 1978 International Scout he got from his dad and is hoping to begin restoring it soon.

51. He also has a motorcycle from his pre-kid days that looks more like a lawn ornament/flower pot.

52. Austin’s favorite video game is Tiger Woods Golf.

53. Kennedy’s is anything her brother does not want to play.

54. Kennedy has a cousin, Emily, who is only 4 months younger and they are more like sisters.

55. Melenie has always lived in the northwest.

56. Keith thought he would live in Yakima his whole life but then he met Melenie.

57. Austin is a great photographer.

58. Kennedy loves to sing and dance.

59. Both Austin and Kennedy are very creative and love to make art projects.

60. Austin hated wrestling.

61. Austin can play the piano but does not like to have an audience.

62. Melenie does not like to cook. In fact, Keith is a much better cook and makes a spaghetti sauce that it to die for.

63. Melenie does make the most wonderful pie crust if you can get her to bake.

64. Keith once got 5 tickets in the same night all on his way home.

65. Kennedy taught herself to write all of the letters in the alphabet.

66. Austin has had finger and head lacerations glued closed and has had stitches and staples in his head.

67. He had 5 stitches just below his eye after being hit during a baseball game. He refused the shot of Novicane and went with just a topical cream to numb it.

68. He had nothing for the 2 staples in his head.

69. Melenie is the cause for the cut on his head that required staples.

70. Keith has had stitches in his head and his hand but has never had a cast.

71. Keith was pushed off the top of a slide and landed on his head as a young child.

72. Melenie has broken her collar bone and her hand and both times the injuries were caused by boys.

73. Kennedy’s favorite princess is Sleeping Beauty but she likes all of them.

74. Austin’s favorite movie is Pirates of the Caribbean.

75. Austin’s favorite superhero has always been Spiderman and when he was younger he was diligently working to get bit by a radioacitve spider.

76. Austin loves dragons.

77. Kennedy has over 30 Barbies.

78. Both Austin and Kennedy love Starbucks.

79. Keith does not like chicken (ok, he likes it southern fried) or vegetables.

80. Both Keith and Melenie hate meatloaf and put ketchup on their tacos.

81. Melenie scrapbooks and has taken up painting.

82. Melenie had never tried Chinese food until she was in her 20’s and now she loves eating ethnic food.

83. Keith is a good ol’ country boy redneck.

84. Keith has never been hunting.

85. Melenie grew up in a hunting family.

86. Austin has no desire to hunt but loves fishing.

87. Kennedy has a very favorite baby named “Squishy baby.”

88. Melenie worked as a portrait photographer before she had Austin and Kennedy.

89. Keith loves to watch ESPN…his favorite teams are the Dallas Cowboys and the Miami Heat.

90. Keith’s favorite color is black but Melenie does not think that is even a color.

91. Keith is younger than Melenie.

92. Austin is very loyal and guarded. We joke that he has the “Austin Circle of Trust.”

93. Austin was nicknamed “The Enforcer” last year by his soccer team.

94. Kennedy knew over 150 signs by the time she was 18 months old.

95. Kennedy loves going to school with her mom and can sit through 3 hour lectures.

96. Austin hit the 1st homerun of the season this year in baseball.

97. None of the Duval family wears a watch.

98. Keith would love to go in to demolition work.

99. Melenie has always wanted to write a book.

100. It took Melenie just over an hour to make the whole list!

Have a great day!

Mel

August 2, 2006

The Crap Sandwich-Too Good Not to Share

Category: General – Melenie 1:22 am

“Crap Sandwich� written by another mom whose daughter
Kendrie, fought ALL and has won her battle

Imagine every year for Thanksgiving that you and your family go to a wonderful all-you-can-eat buffet. The food is always great and you look forward to getting the same delicious meal, year after year. So this year, you give your standard order to the waitress: an appetizer of “love�, a “caring� salad, the side dishes, “thoughtfulness� “compassion� and “laughter� and a big, juicy entrée of “good health and happiness for everyone�. The waitress brings you everything you asked for but the entrée. Instead, in front of you on the table, she places a big, fat crap sandwich. And the conversation goes a little something like this:

You: “excuse me, I didn’t order this crap sandwich�

Waitress: “house special. You got it without asking�

You: “but I don’t want a crap sandwich. I want good health and happiness for everyone.�

Waitress: “well, you got a crap sandwich.�

You (getting upset) “well take it back and give me what I asked for instead!�

Waitress points to a sign that says “Absolutely NO substitutions�

You say adamantly: “there is positively no way I am going to be able to choke down this crap sandwich and I think it’s really unfair for you to expect me to�

And the waitress replies “hey, look. You’ve still got love, caring, thoughtfulness, compassion and laughter, so try to appreciate those. Oh, I almost forgot, here’s your condiment tray for the crap sandwich. You also get big overflowing bowls of fear, worry, anger, guilt and resentment. Bon Appetit!�

And so you’re looking around the restaurant, feeling really grumpy about your crap sandwich, and you realize that there are a lot more people with crap sandwiches than you ever thought possible. And from the looks on their faces, none of them ordered them, either. Then you see a couple of tables with really, really big, Dagwood-sized crap sandwiches and you summon the waitress again. “Excuse me, why are their crap sandwiches so big?� And she explains that those people are facing situations even worse than yours. Their kids haven’t responded well to treatment, have had cancer relapses, or worse yet, died. And you start to think maybe your crap sandwich isn’t so bad after all. Maybe you should keep your big mouth shut, choke it down, and be glad when it’s all gone and everyone is well again. And then, right then, your waitress reminds you of one last thing: “Management reserves the right to serve you another, bigger crap sandwich, anytime they want.

May 9, 2006

One Year…Very Long

Category: Family,General,Treatment – Melenie 6:14 am

May 9, 2006

I have thought about this day many times over the last year. There were times I thought this day would never come, or that it would come and go without my precious Kennedy. She has proved herself strong and very courageous. We have all been stretched in ways we never imagined only to discover that our lives are abundantly richer today than they were a year ago. Rich you say? Yes, beyond our wildest dreams. This has been the longest, hardest and most rewarding year of my life. I, personally, have been held to the flames until I was sure I would melt in to oblivion only to find myself strong as steel. I could not have truly lived without this last year.

What is it like finding out your priceless gift has cancer? This sweet, innocent child that you love and protect with your life is facing a fierce dragon intent on devouring her? I felt as if my life was moving at the speed of light and came to a very sudden, and painful, stop. You are literally colliding with a brick wall and you don’t see it until your entire body is consumed with fiery pain. I heard someone say one time that it is as if you are watching out the front window as your child plays joyfully in the road. A screaming car races around the corner and tears directly towards her and you are paralyzed, unable to yell to her or run to her…you are helpless to save your baby. That is exactly what it feels like. Before I share another moment with all of you, it is vital to see where things were only six months before…

As the winter season began, I was preparing for finals, writing my grant proposal and planning my next semester while anxiously anticipating my senior year of undergrad. Did you notice that entire sentence was all about me? That is where my life had been for the previous two years or so. Sure, I loved my family very much but I had become focused on what was going to fulfill me (and then surely it would be fulfilling for everyone else too, right?). I had worked hard to get to Willamette and had won awards along the way. I was career bound and would make a huge difference in the future of mankind when I graduated. Somehow, though, it wasn’t as fulfilling on the inside as it appeared on the outside. I spent too much time away from my family and my marriage had been harmed, not to mention friendships that could not be nurtured because I simply did not have the time. All my worldly knowledge (and I use the term lightly now) had only created more doubt in my faith. Sure, I knew exactly what I should say and do and I was always quick to give God praise for my many accomplishments but inside I was on very shaky ground. It came to a head one day as I was driving home that happiness and fulfillment always seemed to be just over the next hill. Like when you are chasing the end of a rainbow and can never quite get under it. It was always when the next big thing happened then I could be happy. Only when it did…the “happiness� was fleeting and the sacrifices to get there were many. As I came to this conclusion, I called out to God in a way I never had before. I mean, I had gone to him with an open heart in the past, usually in major crisis, but this was different. My faith was so weak that it was more of a mocking tone. At first, I challenged God to do something …anything so that I could see Him. You know, strike someone down or clear the cars ahead of me so I could be on my way, but then it became a true prayer. I wanted God to show himself. I mean really touch my life in such a way that I could not deny His existence. Show Him in all His glory and put His hand in every aspect of my life. Not something corny like changing the color of the sky but to do something powerful and meaningful and give me a firm foundation to stand on. Now, I know that many people will say that I was bordering on the “big� sin…you know, out right denying His existence…and I was but not with an evil heart. I felt so lost and weak that I knew the only way I could get my feet on a firm foundation again, if not the first time, was to “put out the fleece� so to speak. And boy did I!!! I had no idea then what I was asking for but after all that I have learned about God, I would do it ALL again in a heartbeat. He is an amazing God!

The days passed and it appeared that God was going to do nothing. My life continued on as it had been and as spring semester picked up, I forgot all about that afternoon; days went by fast causing weeks to fly. Little had changed and I began working on my research project and preparing my application for grad school. When I wasn’t at school, I was working at the capitol, doing homework (sometimes staying up for more than 24 hours!), running my kids all over the place between my sister’s and their activities and finding time to spend with my husband. I was so busy that I couldn’t see the signs that something was wrong until it was all in hindsight. That will forever be my burden. On Monday, May 9th, I had turned in my last final and Kennedy and I traveled to Newport, Oregon so I could gather court transcripts for my project. She slept the whole way there as the rain pounded my car. She was tired and whined until I carried her. Obviously she was well behaved as we waited since she had little energy. I had taken her temperature that morning and it was low grade so I assumed she might be getting a cold bug. She had gone to the bathroom before we left and I thought it was slightly pink but couldn’t really tell and because she was having no pain and I could not confirm it, went about my day. On our way home we stopped at the very, tiny library in Toledo to read old newspaper articles on microfiche. Again she waited patiently and read books as I poured over them looking for specific information and making copies. I took her in the restroom to go and her urine was bright, blood red. We were out of there! There was no mistake this time that something was wrong. My cell phone was out of range so I hurried along the mountain highway and headed for Philomath to get a signal. I was sure she had some raging bladder or kidney infection. The nurse at the pediatrician’s office assured me it could very well be something that could be treated with antibiotics and to just drive straight there and they would get me in.

We were unable to see our regular doctor but thankfully Dr. Stanton was there. Kennedy gave a urine sample and it was the color of cranberry juice. After a few minutes, he came in and began asking further questions. He told me that there were no bacteria in her urine but it was full of blood. He asked me about her bruises and I immediately became defensive. Sure, she had bruises, but we live in the country and she played outside a lot. I did mention though that she had some odd bruises on her fingers and pelvic area. He noticed an enlarged liver and spleen, again, this meant very little to me. The final call was the petichae on her legs. Now, petichae is when your platelets (or clotting factors) in your blood are so low that your blood literally seeps out of the veins and rises to the surface. The Saturday before, she had helped her dad mow the lawn on the riding mower and had developed hives. I assumed that it was leftover from that. Dr. Stanton pushed on them and they did not blanche. He asked questions regarding her appetite and sleep patterns that I explained away with easy and normal excuses. He left the room and I began to panic. He returned a few minutes later to inform me that Kennedy needed to be admitted for further testing and treatment. He told me that she could have a slow growing Meningiccocal. Well, that sent my heart in to a panic. I assumed that we would be admitted to Portland Adventist since his office is on the same campus. He said no, that we needed to go to Emanuel right away. I asked if I could go home and get some clothes or something. Again, the answer was a definite no and an insistence that we proceed to Emanuel. I needed to talk to my husband. So far the biggest tragedy we had was that my son had his cheek split open by a baseball only 5 days before and had needed stitches. I called Keith and told him something was terribly wrong with Kennedy and that he needed to meet me at Emanuel ASAP. I was shaking and very upset, so Sonja drove us to the ER and I left my car behind. I’m not sure if anyone has ever had the pleasure of arriving at a large, trauma hospital children’s ER waiting room but typically they are full of vomiting, coughing and sneezing children. We spent all of 2 minutes in the waiting area before we were rushed back to an examining room. We never even saw a triage nurse or anyone in admissions. I knew we were in trouble. I didn’t remember until we arrived at the ER that on our way out of the pediatrician’s office, he told me that if it was childhood leukemia, that it was very treatable and many children recovered from it. Ok. Later I found out that while he knew what her diagnosis would be, he was unable to confirm it and tell us without a blood test and because of the severity of her symptoms he knew it was in her best interest to get to a hospital immediately.

Doctors and nurses flooded our little ER examining room. Questions were flying at me and they began a series of blood tests that only seemed to cause additional pain for my baby. But soon she was feeling as if she had more energy and was actually walking all over the room and talking up a storm. My mother, Austin and Keith arrived and still we knew nothing. Grammie took Austin home and shortly after they left, the ER doctor came in with the news no parent should ever receive. She began by assuring us that Kennedy did not have Meningiccocal. Ok, that was good, right? And that it wasn’t like she had diabetes. Ok, what the hell is that supposed to mean? Then she told her us that her white count was 213,000. We were still dumbfounded. We had no idea that a normal white count is between 10-12,000 and that anything over 50,000 made her at a high risk for relapse. Finally, she told us that Kennedy had leukemia. Literally, time stood perfectly still. It was if all sound and movement came to a screeching halt right there that night. Nothing else could have been more important in that moment. Then I was shaken back to reality. What???? No frickin’ way was this happening to her. I looked right at the doctor and told her there was a mistake because we had NO health insurance. I asked if it could be anything else…anything in the world besides cancer. Right at that moment, I would have taken Meningiccocal or diabetes…just not cancer. No one could tell us what kind she had, what treatment would look like, when she would get better…nothing until morning when we could meet with a pediatric oncologist. Pediatrics and oncology should NEVER be in the same sentence, let alone be the title of one of the most important people in our daughter’s life.

Keith called his father; I called my mom and my sister. My sister came to hospital and spent the first of many nights with Kennedy and me. That was the longest night of our lives. Kennedy received red cells and platelets and all we got were many med students with questions that only made that night more painful. I just could not accept that Kennedy had cancer. I would not accept it! There just had to be something else. We could not pay for treatment, Kennedy had been relatively healthy, Keith was starting a new career, I had big plans for my senior year, Austin was playing baseball and the season had just gotten underway! This could not be happening! I had no idea what we were going to do…about anything. This just was not going to happen to my baby.

The next week is a whirlwind. In the following days we were asked to make decisions no parent should ever have to consider. Kennedy’s white count was so high that they discussed options such as pheresis, a process of draining off the white blood cells, but no hospital in Oregon or Washington would even consider doing it on a patient so young, or a possible transfusion exchange. Both were scary options. The oncology team told us that Kennedy would have to start chemo immediately and while they knew it was acute lymphoblastic leukemia, they had no idea which kind and whether or not she had favorable genetic markers. We had three options…first, we could go with what is considered standard treatment for high risk leukemia, second, we had the option to move to Memphis (and would need to leave within an hour) because Kennedy had been accepted in to a program at St. Jude’s or third, we could put Kennedy in a phase 3 clinical trial being conducted by Children’s Oncology Group. While we seriously considered going to Memphis, all of Kennedy’s treatment would have been covered 100%, the thought of leaving my husband, son and all our family and friends during the most difficult time of our lives was more than I could bear. I left all of it in Keith’s very capable hands and he decided to sign Kennedy up for the comparison trial by COG. Despite all the insurance problems, we still know it was the best decision. We believed, and still do, that no matter what the outcome was (at this time they gave Kennedy a 75-80% cure rate) by having Kennedy on a study, we could make a difference for future children with high risk ALL. Kennedy began COG AALL0232 arm DH within hours. Keith signed all the papers and we read them later just to get the ball rolling. Do we ever think we should have gone to Memphis? Sure. But we stand firm knowing that we made the best decision we could at the time with all the information we had. Chemo began right away along with a multitude of tests. During that week Kennedy had spinal taps, bone marrow aspirations, ultrasounds, an echocardiogram and x-rays. It was crazy! We met so many people from her “team� that we had no idea who was who. Everyone had an opinion, asked tons of questions and had lots of instructions. I was terrified to take her home. She was getting all kinds of medicines that I could not even pronounce let alone keep straight. I made lists of everything I needed to remember. She was terrified. She began making herself throw up every time she lost control of a situation or out of sheer terror. She was hurting, scared and felt terrible…and there was nothing I could do to help her. In fact, I was the one who had authorized all it and stood by helplessly as they poured toxic poisons in to her veins through a tube in her arm. I still could not believe this was happening to us.

One thing I did know…God was in control. When I was faced with the scariest of all demons, the possibility of losing my precious daughter, I turned first to God. And then, it all came back to me. The conversation with God in the car that afternoon. I knew right then, at that very moment, that God had a plan. I had no idea what that was but I knew without a doubt that many blessings would come as a result of Kennedy having cancer. I did not think it was fair, I did not like it, I continued to be afraid and I was mad but He was in control. I had to believe that wonderful things were going to come because of this trial. I did not know if they would be for me, Kennedy, Keith, Austin, my family, our friends or perfect strangers but I did know that He was going to use this experience to make a difference in someone’s life. He had a plan to use this hardship on our family to change the course of someone’s future. I decided right then that I could not believe in God if he made little children suffer without a greater purpose, so I would follow Him to witness at least one good and perfect thing that made every heartache worth while. I made a conscious decision to trust that even if Kennedy died because of her disease, it would be for a higher purpose or greater good for someone who would be lost otherwise. Now, understand that losing Kennedy would be one of my greatest sorrows and certainly the worst thing that would happen in my life so far, but I needed to know that if she died it would not be in vain. I made up my mind that I would follow God where ever he led me on this journey if He could promise me that astonishing things would come from all of the sadness we were about to face. And as I write this I can assure everyone that amazing blessings have occurred as a result. I have been willing to step out in ways I never could have imagined and have seen God do awesome work because of it. And you know what? I know for certain that His work is not done. I know that all of us, including Kennedy, still have work to do here. I have no idea what it is, but from what I have seen so far…it will be magnificent and it will be all for His glory.

This year has been the hardest, longest and most rewarding year of my life and I know it was because of my decision to follow God. Please do not think that I have always been happy with God or that I have always been upbeat and positive…if that is the picture I have painted I have done a poor job of expressing myself. I have spent many nights in a hospital bed watching my daughter sleep and working diligently to memorize everything about her in case she did not wake up in the morning. I have cried my eyes out to the point that no tears would come. I have begged and pleaded with God while sitting in a public bathroom to not take my daughter because I just wasn’t ready. I have watched as Kennedy has been poked, prodded, had tubes pushed down her nose, been force fed medication, laid in a drug induced sleep for days and held her when she became so terrified she lost all control of her bladder and vomited uncontrollably. I have seen fear in her eyes that I will never forget as long as I live…fear that haunts me. I have learned that cancer is one of the nastiest evils that exists but that it is not powerful. I have had the opportunity to discuss death, dying, heaven and my five-year-old’s mortality with her. I have watched families grieve as their children succumb to the cancer dragon. I have seen my strong, stoic husband melt in to tears as he holds the hand of our baby, and yet can not hold her because of the many tubes and needles needed to sustain her life. I have watched the disappointment in my son’s eyes because everyone remembers that his sister is suffering but have once again forgotten that he is hurting and missing out too. And I have watched him hold a bowl for his sister as she vomits while trying to choke down his own dinner. Every one of us, including Austin and Kennedy, can define and use appropriately words like neutropenic, TPN, nutrition supplements, intravenous, intrathecal, lumbar puncture, bone marrow aspiration, chemotherapy, liver enzymes, f & n, intramuscular injection, charcot-marie-tooth syndrome, absolute neutrophil count, hemoglobin, hematocrit, oncology, excretion, leucovorin rescue, veno-occlusive disease and CBCs. I’ve overheard Kennedy tell her 5 year old cousin, Emily, that she can’t come play this week because she’s neutropenic but that her counts are recovering and she will be better when her ANC is over 1000. We can all tell you what a normal WBC, RBC and platelet count are. We can tell you what precautions are necessary for an ANC between 200-500. Austin knows what fever and ANC will warrant a 48 hour hospital stay. He can also tell you exactly how long it takes to administer blood and platelet transfusions and at what point they become necessary. They both know the symptoms that indicate that Kennedy has low red cells or low platelets and needs to be tested. They both can rattle off what meds she is taking and the exact dosage and those she is allergic to. We have had to opportunity to stay on both sides of the pediatric unit more than 75 nights and know all the rules of the PICU. Kennedy has had over 50 red cell, platelet or plasma transfusions. She has had more than 100 pokes. We can tell you what food is good in the cafeteria and what to stay away from. We can even tell you who delivers to Emanuel at 1am! We have had all of the nurses on the oncology team many times, except the men, and know which nurse is taking care of Kennedy based on how her room is set-up when we arrive. We know which ones think the farting straw in the arm pit joke is hilarious. I have spent many nights away from my husband and son. We were in the hospital over Father’s Day and most of the summer. Kennedy was in the hospital on Austin’s first day of 3rd grade. Kennedy spent her 5th birthday in the hospital. Austin spent his 9th birthday at the hospital because his sister was inpatient. He did not get to have a party because she was neutropenic and everyone was sick. His entire Christmas break Kennedy was inpatient. Kennedy spent Christmas in the ICU totally unaware of the holiday and Austin spent Christmas morning without his mom and dad. All of these were things we never even considered possible before May 9, 2005.

But, God has done amazing work this past year. We have met the most incredible families fighting the same battle and have been fortunate to walk beside them on their journey. We have heard miraculous stories of children overcoming insurmountable odds. We have been blessed to follow the stories of children who did not survive 2005 but did more in their short lives than some people have the opportunity or desire to do in 80 years. My relationship with my children is stronger and closer than it has ever been. God has spoken to me through my children and I am a better mother because of it. My marriage has proven again that it is ordained by God and continues with His blessing. The many struggles we had in the past only set the foundation that kept us committed to seeing things through and not giving up when it would have been so easy to walk away. My relationship with my family is closer and richer. While I have had to let go of some relationships, some have been restored, others have become stronger and I have learned how to listen not only to those I love so much but to myself. I have learned what are realistic expectations and have learned to accept people where they are at. I have learned that children are resilient and if we would only listen to them they will lead us. I have learned that my husband is a provider, protector, leader and comforter. I learned that my son is not only a delight and joy, his love and compassion for others is inspirational. I have learned that my daughter is courageous, brave, optimistic and looks for something to smile about everyday regardless of the obstacles. My daughter has taught me that dying is not the worst thing…in fact, it can even be considered getting better. I know that God will provide…sometimes I can’t see it and sometimes He provides in ways I never could have imagined but He is FAITHFUL and always comes through. My faith in humanity has been restored. God has created amazing people who are so giving and not just financially but people who are willing to share their lives with us, their food (many, many thanks there!), their homes, their laughter and sometimes their shoulders and boxes of tissue. Everyone is unique and has talents that He can use in remarkable ways if given the opportunity. My faith has NEVER been so strong. I know this will not be the end of being tested but I know that I do not have to be afraid of what the future holds because He will give me everything I need. I have learned that a relationship with God is something that is continuous. We do NOT know everything or learn everything based on one crisis. Believe me, every time I thought, “ok, God, I got it now,� He would gently lead me, or sometimes take me kicking and screaming, to see that I do not have it and need more refining. My friendship with Him is in need of nurturing daily. I have learned that God’s timing is perfect. Nothing could have proven that more than the Defibritide showing up in the PICU on the evening of Christmas Eve. Now that is a story of faith and perfect timing! I have learned that I am not in control of my life and I don’t even want to be. I have learned that I can not be God to others no matter how badly I want to help them. I have learned that we all have a purpose and that if we listen, He will lead us in to that purpose. I have learned that some of the most kindred spirits live hundreds of miles away and some work at Emanuel hospital (Megan, Melissa, Lyndsee, Torey, Amanda, Tricia, Heather-both of you, Wendy, Stephanie, Darcie, Raeann, Brittian, Nellie, Libby, Louise, Sam, Suzi, Colleen, Mona and so many more). Angels are everywhere and if you look close enough you will see that they touch your lives everyday. I have learned that I can do all things with Him who strengthens me and that life is so much easier when I do not lean on my own understanding or try to light my own path. This has been an awesome year…a year of hope and disappointment, a year of sadness and great joy, a year of growth and learning, a year of balance and stumbling and my life will forever be rich because of May 9, 2005.

In Faith-Hope-Courage,
Mel

April 15, 2006

Our First Week Of Radiation…What a Long Week!

Category: Fundraisers,General,Treatment – Melenie 9:58 am

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

April 1, 2006

I Finally Got Mad Enough!

Category: General,Treatment – Melenie 11:23 pm

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

March 29, 2006

I HATE INSURANCE!!!

Category: General,Treatment – Melenie 9:23 pm

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

March 27, 2006

The Next Phase

Category: Fundraisers,General,Treatment – Melenie 9:50 pm

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

March 7, 2006

We Are Honored To Be Living With a Queen!

Category: Family,Fundraisers,General,Gratitude,Treatment – Melenie 9:42 pm

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

February 9, 2006

Children’s Cancer Association

Category: Fundraisers,General,Gratitude – Melenie 5:07 pm

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

February 6, 2006

We Found A Stroller!

Category: Family,General – Melenie 10:36 am

Our days just got easier…we were able to find a stroller that is lightweight and will hold Kennedy’s weight. The best part? It was only $40 brand new! We looked everywhere and couldn’t find anything. I was totally unwilling to spend much since she is 5 years old. Even in checking on-line I couldn’t find anything at a decent price-especially after shipping costs were added in. I checked our friendly neighborhood Kmart before giving up and found a great stroller at an even better price. My back will be so much better!

Kennedy is doing great today. I’m going to be buzzing around trying to get things done-like cleaning my car and putting clothes away. Austin went to school and seemed to be feeling well today. It helps that things are becoming more normal around here.

Love-Hope-Faith,
Mel