Courage for Kennedy – Journal

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


One response to “The Next Phase”

  1. Becky says:

    I was in tears reading about how everyone has moved on but you are still stuck in h*ll. Pardon the language, but I can not fathom any other way to describe what your family is going through. I hope we can get together later this week! We miss you!!!

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