Courage for Kennedy – Journal

July 6, 2005

Category: Treatment – Melenie – 4:37 pm

Kennedy met her new Chemo Pal, Amy, yesterday. I was really worried that it would take a few visits for her to warm up but she liked her instantly. She was drawn in by the story books and within a few minutes was actually talking to her. We requested that she not wear a badge, since Kennedy doesn’t trust anyone with a badge anymore, and I’m sure this helped. She had a great time playing games, looking at books, doing puzzles and playing with the Madeline stickers. It was a nice change from her usual mood the morning of procedures. Typically the day starts off bad because she has to go without breakfast and within a few minutes of arriving she has to have her port accessed. After what happened at the ER I was worried it would not go well but she did better with Nellie and Libby, of course she knows them though. I was just so delighted that she enjoyed playing with Amy so much. Amy told us that she is a 6th grade teacher in the Beaverton school district. She was a cheerleader and dancer, Kennedy was thrilled to hear this, and went to school at Linfield in McMinnville. She even has a brother four years older, just like Kennedy. We couldn’t ask for a better match; Amy is a delight. Kennedy is looking forward to playing with Amy again on Tuesday when we will be in Day Treatment all day. When it was time to go, she said goodbye and had no problem going to the procedure room. What a nice change!

Kennedy had another LP yesterday and more Methotrexate in her CNS (central nervous system/spinal fluid) and the ever lovely Vincristine. She slept all evening, was up for a few hours and then slept until 10:30 this morning. She was exhausted. She doesn’t have a lot of the nasty side effects she has had in the past but of course it has only been 24 hours. We’ll see how she feels in a couple of days. Next week she is back to 4 days of Ara-C. Her platelets were good, after her middle of the night transfusion in the ER, and her RBC was good but her WBC was critically low. This made her ANC 440. Dr. Norwood said that it must be 750 by Tuesday for the Ara-C otherwise she is at high risk for a bacterial blood infection. He does not believe the chemo she had yesterday would cause her numbers to fall, but we are just lying low so she won’t pick up a virus by then. She was mad because Emily was supposed to stay the night but it will have to be in a couple of weeks. If her numbers are low then it will delay the Ara-C another week-something we do not need. Then she’ll have 3 days to recover before she gets another 4 day dose. I will be posting her treatment schedule for the current phase so everyone will have an idea of where she is at. Of course, it is always tentative and many things could affect the schedule.

Holly and Sammi watched Austin yesterday. He had such a great time that he wanted to go back today even though Kennedy didn’t have chemo. I told him maybe next week since Tuesday will be a long day. Kennedy will be getting Cyclophosphamide which takes 30 minutes. She must have 2 hours of fluid prior to the dose and then 4 hours of fluid after. This is to ensure that her kidneys will process it without toxic build up. This chemo drug gave her a very unusual metallic smell for about 48 hours. She also ended up with a 6 day hospital stay after this and the Ara-C. Not fun at all! Please pray that it goes well and Kennedy does not have to be in the hospital. I know she is looking forward to attending the Spaghetti Feed and would be disappointed if something happened.

On a note of good news, Kennedy qualified and will be receiving SSI benefits while she is in treatment. We have a follow-up interview tomorrow via phone and then her benefits will begin. They are retroactive to the date of her diagnosis, since we applied ASAP, so that will help. We’re still examining all of our options for insurance coverage because I am very worried about what will happen with OHP.

Please pray for:

-Kennedy’s health, healing and chemo

-Warren, a 12 year old with Burkitt’s Lymphoma who is having a very difficult time with side effects from his chemo schedule. His tumor is gone but he still must finish treatment to ensure it does not return.

-Maggie, a 3 year old with very rare mixed-lineage leukemia who began radiation and intense chemotherapy to prepare her for her unrelated donor transplant.

-Oliver, an 8 month old fighting AML leukemia and just recently diagnosed.

-All the kids fighting for their lives in their battle with cancer.

Thank you for everything. We love you all so much!


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