Courage for Kennedy – Journal


February 8, 2007

Counting Down until END OF TREATMENT!

Category: Fundraisers,General,Gratitude,Treatment – Melenie – 9:40 pm

So, how close are we? We are exactly 6 months and 15 days from the end of treatment! WOW! August 23, 2007 is Kennedy’s official EOT date and we can not wait. She will be just ecstatic to give up her daily doses of meds as she still asks at least once a week if she really has to take them 🙂 . And you know what? She has survived her battle with leukemia almost 2 years. In 3 months, Kennedy will have her 2 year anniversary of her diagnosis. I have to say, that in those first few days, I could never imagine we would make it this far and yet here we stand so close to the end of the marathon. One of the oncologists once said to me that while many cancer battles are fast, hard sprints, leukemia was more like running a marathon. While it started out hard and fast and your chest is burning and your legs are aching and you wonder how on earth you’ll ever make it one more step let alone the end of the race, you come to the middle and hit your stride. Your body and mind adapt and soon you’re in the zone. Sure the race is long and there is no one to pass the next leg of the journey on to but you realize that you are in better shape than you thought and soon the end is in sight. And you know what, when you look back, it looks long and the hills were high but the scenery was just incredible and the other racers you met were phenomenal and helped to encourage you, as some were veteran athletes, and as you cross the finish line you realize that you were stronger than you ever thought possible. Now, does it mean that I would love another serving of crap sandwich? Hell NO! Does it mean that I am ready to tackle another race…sure…just give me a soft breeze and small hills 🙂 .

So, how is Kennedy doing? Very well actually! She is growing and eating like crazy. Her hair is coming back in and growing so fast she is already making plans to wear it in a bun for ballet. She told me the other day that it was almost long enough for a bun (it is about 1 inch long-hee hee). It is blond and soft and appears to be straight. I hope for her sake it is a little bit thicker than her hair was before. She had her back poke and everything is clear. They are keeping her at 100% dose for chemo and decreasing her lactulose as her liver is functioning very well. They may increase her chemo to 125% at her next visit if her ANC continues to be strong. She has a speech evaluation coming up and we are trying to schedule another hearing test. Cranial radiation basically targets everything from the eye sockets back to the base of the neck and as this includes her ears, we have to be sure that her hearing hasn’t been affected. Her speech is very nasally and not always clear so this will help to see if something is going on there. She also seems to have problems hearing and understanding us so we’ll see if hearing loss is contributing. She had a hearing test before radiation and showed slight hearing loss in one ear (possibly from one of her chemo drugs). She has plateaued in PT so we are taking a 12 week break. She has made very little progress since August. Well, we see progress but her coordination and balance are still that of a 4 year old. Amy said it is just like a toddler who is learning how to do so many things. They concentrate on one area at a time (large motor, fine motor and speech) and Kennedy had to re-learn to walk, run and jump and now she is concentrating on other skills she is behind in. We also received the final report from the neuropsych exam (finally!). Some things were very good and we were relieved to hear that they had not been damaged but some things were not so good and difficult. All of her cognitive (intelligence) abilites are in the normal range and intact! Yea! The MRI had showed no damage to these areas and we were happy to see that she is doing well. Much of Kennedy’s memory is also in the normal range and showing no ill effects from treatment. She does not show signs of either ADD or ADHD. The doctor did confirm that Kennedy does have issues related to fine motor skills and not just in her ability to control her hands but also in motorplanning (copying hand positions, drawings, gestures, etc.). Kennedy does very well with problem solving that is hands on or multisensory. However, she is weak in her abilities concerning auditory processing. This means that she struggles to understand what is said to her as we speak faster than she can process what we have said and it takes some time for her to form a verbal response when spoken to. Her signs of inattention are a result of becoming distracted because she literally loses us when we give too much information. She just can not keep up. She needs visual clues along with verbal to fully understand what is going on. So, according to the doctor, Kennedy’s weaknesses are as follows: verbal retrieval as well as verbal fluenency (what I explained above), phonological awareness, motor planning, very slow processing speed, difficulty with initiation of new tasks (I imagine from the above issue), and lack of sustained focus for verbal tasks. However, she does have her many strengths…the most important one being her intelligence. So, this means we do not explain too much at once, we repeat often, we do not give more than one direction at a time and we repeat, repeat, repeat and we make sure she hears and understands before we go on to the next thing. She is absolutely learning (evident every single day) it just takes repetition. Most of her recommendations were things we were already doing (as stated above) and some were for when she is much older. For instance, a note taking buddy as she will not be able to take notes as fast as she would need to, no timed tests, more time to listen, no scantrons, word banks and math formula banks on tests and help with organizational skills such as color coding and baskets for her stuff. Not too bad. All things I can live with. She is flying through her math book (she’s ahead of her brother in completing lessons) and is learning to read. Not to mention all the other things she picks up! We will repeat neuropsych exams about every 1 1/2 years through grade school and every 3 years after that. The full report was 10 pages long so hopefully I summarized things okay.

On a lighter note, we are going snowmobiling with Candlelighters this weekend and the kids are so excited. A couple of weeks ago we went to McMenamins Kennedy School to see Flushed Away (just Kennedy and I) and had a blast catching up with other families we know from treatment. I have to agree with Mark, it was like a reunion. It is wonderful to see so many kids doing so well. We are also looking forward to spending a few days at the coast in March and in April we will go the Children’s Cancer Association Caring Cabin for a long weekend. Speaking of CCA, they are working with 105.1 The Buzz to raise money to help local cancer children and their families. If you are in the Portland Metro Area, please tune in, but even if you are not you can log on to their website at www.1051thebuzz.com and hear some really amazing stories from local families who have been helped by their program. I don’t know what we would have done without our chemo pals (Amy and now, Lindsay). We had the best time with Lindsay last week when we visited her at work (Hillsboro Police Dept.) and even met Molly’s dad Officer Mike Thompson. We also loved the Music Rx program which brought fun instruments and even funner people to entertain Kennedy. Auntie surely can’t forget Karaoke night in the Starlight lounge of the hospital (YMCA…nuf said!)…and guess what, Auntie, there is a karaoke machine at the Caring Cabin! Woo Hoo!! The program also had therapists who came and played for Kennedy and sang for her in the ICU. I know it brought her tremendous comfort to hear music and familiar voices of people she knew and loved. CCA is just incredible so please check them out at www.childrenscancerassociation.com, and whether or not you like 105.1, tune in for this special event that goes on until 10am tomorrow morning…you will NOT be disappointed. Even $10 can make a difference in the life of a child with cancer.

In His hands,
Melenie

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