Courage for Kennedy – Journal

June 24, 2005

Category: Treatment – Melenie – 11:06 am

Today is the last day of Ara-C for 2 weeks. She will have LPs done the next two weeks with Methotrexate injected directly into her spinal fluid. This luckily does not seem to have any side effects (that we can see anyway). Next week she will have PEG (made from E-coli) injections into her thighs (which is very painful and upsetting) but they should be able to do it while she is out with her procedure. She will also have Vincristine the next two weeks. The worst part about this drug is the neurological side effects. Kennedy suffers from needle prick sensations that she feels she needs to itch. Benadryl is the best way to combat this but then she is sleepy/groggy. She also must continue the oral meds through Tuesday. She absolutely hates them and each time it is a fight. We have taken to administering them while she is sleepy for less of a battle.

Kennedy’s platelets are high, her WBC is low (making her neutropenic) and her RBC is right on the border. As pale as she is this morning, I expect her to need a blood transfusion. She has been riding the fence on this one all week. Now with a few more days of Ara-C I won’t be surprised. The good news is that she will perk up for a few days before the next dose of chemo.

Kennedy ran a temp of 102.5 the other night and we were worried we would be readmitted, especially after she vomited. Dr. Olson and Dr. Norwood believe that this is a pattern and is resulting from the Ara-C. Because she would be in the next morning and was showing no signs of distress, they allowed us to giver her Tylenol and stay home. Of course, they are also giving her doses of strong, broad-spectrum antibiotics as a precaution. This was probably in large part to just having her hospitalized for 6 days with no origin for her fever. On Wednesday, Candlelighters (a support organization for kids with cancer and their families) brought us lunch in the clinic. Kennedy has had a hard time eating this last couple of weeks and has lost the weight she gained back. Either nothing sounds good, or we get her what she wants and after a few bites she realizes it’s not as good as she hoped. We knew this would happen but it still worries me a lot. I even took her to DQ yesterday for chicken strips with ranch and ice cream. She ate 2-3 bites of the chicken and refused the ice cream all together. It is hard to have her on a high calorie diet when she won’t eat anything. Mom and I went grocery shopping last night hoping to find stuff she would eat.

There will be a Spaghetti feed at the Moose Lodge in Portland on July 16th (I will get back with all the details) and a Carwash/Plant sale at Platt Electic in Gresham on July 30. We sure hope everyone can join us. If Kennedy is doing well we plan to have her at both events.

I want friends and family to know that I do appreciate the phone calls and e-mails very much. I want everyone to know that I still love to talk about things other than Kennedy’s cancer and would enjoy hearing the going ons of your families and your kiddos antics. While we are dealing with Kennedy’s diagnosis, we are also dealing with the everyday stuff like Austin’s new front teeth (after 5 years!!!), Keith working like crazy, plans for a late summer campout, the Molalla Buckeroo, yardwork, bills, discipline issues, my research project, discipline/tempertantrums and I would love to hear about yours.

Love and healthfull blessings,

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