Courage for Kennedy – Journal


September 28, 2005

Category: Treatment – Melenie – 1:54 pm

Because everyone is clamoring for information (and we’re actually home right now!) it seemed like the perfect time to update. Our lack of journal entries has had nothing to do with lack of activity-quite the contrary!-we have actually been very busy. Our last update was September 1st so let me see if I can catch everyone up.

Kennedy was discharged on Friday, September 2nd. We were supposed to go home early in the day but there was confusion with the home health nurse about when they could give TPN (nutrition supplement through Kennedy’s port line) instruction. They were absolutely freaking out that Dr. Olson was allowing us to go out of town for Labor Day Weekend with only 1 instruction in TPN. They were worried we would get out of town, run in to a problem and have no way to get help. Keith and I were totally relaxed about it but it became a big production. Apparently, the majority of patients and their parents get really freaked out about using the port. Dr. Olson felt it was far more important to get a break and that if we ran in to any sort of a problem we should flush her line with Heprin (to avoid blood clots) and worry about it Monday when home health came out to our house. We left the hospital finally around 8pm because she also required half a unit of red cells and half a unit of platelets. Grammie, Papa and Austin had already left for Grandpa Sam and Grandma Bev’s so the house was very quiet. Kennedy was exhausted and went to sleep almost immediately and Keith and I got some much needed alone time. This whole thing is having a huge affect on my marriage so please continue to pray for Keith and I as we walk out this journey.

Labor Day weekened was an absolute blast!! Despite having to take Kennedy’s TPN (which required mixing additives, running her pump, hooking her up and flushing her line, and follow her around with her “backpack” of nourishment 🙂 we had the first opportunity in 4 months to feel like a normal family. We had the best time visting with everyone and playing. Kennedy enjoyed all the attention from my cousins (whom she adores!) and we just had a kickin time relaxing and hanging out. On Sunday, we drove over to Newport with Grammie, Auntie Sue, Holly, Heather, Sammi, Josh, Ashley and Troy. When we got to the beach, we flushed and Heprined Kennedy’s line so she could be free to play without being hooked up. She built castles in the sand and even played in the ocean! Auntie Sue and I were soaked taking her out up to her knees. We had taped up her line to be sure it wouldn’t get sand or water in it. Austin found many treasures, crabs and jelly fish. Grammie, Auntie Sue and Austin had fun throwing the seaweed back in to the tide. The weather could not have been more perfect! This was the first time I can remember being in Newport when it was very sunny and not windy at all! God was surely blessing us that weekend.

Tuesday, September 6th, it was time for her next round of high dose Methotrexate and Leucovorin rescue. When we got to the clinic, Dr. Norwood said, “This girl looks way too good. We need to get some more chemo in her!” He wasn’t kidding, her ANC was over 3000 and her platlets were over 200. After what happened last time, we were not looking forward to another round of it. What a surprise that Kennedy breezed through it! She was hardly even in her room as she cruised the halls on her bike during physical therapy and baked cupcakes with Dianne from Child Life. Her body processed the Methotrexate at an unbelievable rate and she was ready to leave by Friday morning! We could hardly believe it ourselves! She had some pain over the weekend but continued to eat and by the end of the week was eating pizza, spaghetti and tomatoes! I know, I know! Amazing! We thought someone had finally cut us a break! I was even able to get to the Dr. for myself and even by myself. Keith and I had a double date with our friends, Tyas and Becky to celebrate her birthday!!! :), and we all enjoyed working at the huge yard sale! Thank you to everyone for your hard work and donations! The yard sale raised over $1600!!! What a huge help! We are also busy selling raffle tickets for an amazing BBQ so if anyone is interested they can contact me or call my dad at 503-880-2868. The yard sale was so fun. It was worth all the hard work, not just for the $ raised, but to hang with the Schermies. They worked incredibly hard to make it a success and we are so grateful! I had forgot to post about the SRC Motorcycle Dinner/Dance raised over $500 for our baby girl! Thank you so much guys for everything!!

Before I update for the last couple of weeks, I need to get some lunch in my kiddos. I will return later today so check back soon! Kennedy also has a new website. It is still under construction but should be completed in the next week or so please check there and register for updates at www.courage4kennedy.com. You will be asked for an ID and password to enter but take comfort in knowing that they are the same as they are for this website. Many thanks to my dearest buddy, Becky, for donating her time and covering the cost of hosting the site for this year! She has been a tremendous support to me during all of this.

Love-Hope-Courage
Melenie

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