Courage for Kennedy – Journal


August 1, 2005

Category: Fundraisers,Gratitude,Treatment – Melenie – 11:12 pm

I know that everyone has been anxiously awaiting information about the big fundraiser from Saturday so here is the news! The count on Saturday was $4105!!!! Plants have continued to be sold and money donated so since then there has been at least another $660 with more to come! Thank you to everyone (the Schermies, the Platts, the Strutz, and so many more!) who helped make this such a success. Again we realize the blessings that we have received and are amazed not only by how many people come out to help but also how many donate to help our baby! The incredible goodness of people just warms my heart. My sister and dad worked so hard collecting plants, selling plants, washing cars and drumming up publicity for Kennedy’s fundraiser. Thank you again and my prayers for healing of the many sunburns and sore muscles (you know who you are 🙂

At the end of a wonderful day, we were blessed again by the Heisler family (Uncle Mark, Aunt Judy, Chelsea and Joseph) who watched our babies so we could have our first date night in 5 months. The kids had a blast and Kennedy was asleep before Keith even started the car. Keith and I actually went to the theater to see a movie (Wedding Crashers-great movie by the way!) and have a dinner in which we could have adult conversation without reminding anyone to take their silverware out of the water or climb out from under the table. It was such a gift to us as a couple and we are very grateful.

The weekend only got better! On Sunday, my sister and I went to lunch (at the best sandwich shop in Gresham-The Truffle Hunter on Powell) and did some shopping. It was very relaxing and just what I needed after two weeks of intensive chemo for Kennedy. I’ve felt so emotionally spent lately and was in need of some recharging. We had so much fun and are planning our next get together in a few weeks.

It is true-we are done with the Ara-C. Only today and next Monday and then we will be done with the Consolidation portion of treatment. Today was rough though. It started off bad when Kennedy insisted that Nurse Sam access her port and she was off today. Kennedy became hysterical and would not calm down. This only set the tone for the day and once she was mad, no one was safe. She began to yell at me and told me that the snacks I had were stupid because there was no popcorn or chicken broth. Who would have guessed that was what she would want??? I was kind enough to let her wear her new Barbie ballet dress but failed to pack extra clothes so when the Vincristine hit and the dress began to bug her she had something else to scream about! I thought I was going to lose my mind! I reminded Dr. Olson that she had said that things would be better after Induction was over and they were only getting worse! Both her and the nurse commented that Kennedy (as a high-risk patient and now as a slow responder) had the most aggressive and difficult treatment protocol there is for leukemia. She does have reason to be upset-she feels like crap! I just don’t know how we’ll make it through the intensive period that lasts into April. Please pray for strength and peace-we need it! Dr. Olson again talked about getting Kennedy on an appetite stimulant so we will be starting that next week some time. She also checked Kennedy’s reflexes-she has NONE! And hasn’t for over a month! So, Dr. Olson checked the strength in her hands, arms, feet and legs. She wants to monitor this closely for signs that she needs physical therapy from the Vincristine. The worse part is, she has a lot of doses of Vincristine left before long term maintenance. I have noticed that she has begun to walk differently-a little bit of the “foot slapping” that is common. One more thing to add to the list of worries. So, after all of that we went to day treatment for platelets (she was at 18 and normal is over 140), her monthly antibiotic and her PEG injections (one in each thigh). They started her antibiotic and when it was done it was time for her PEG. Then the hysteria started again! She had to be held down and because her platelets were low it took a while before they could get by with just a bandage on the spot. My mom showed up with lunch right after (which had been difficult in and of itself!) and Kennedy was calmer. Then, just when we thought the worst was over, Kennedy’s stomach began getting upset. She went through every pair of undies I had brought. While we were in the bathroom getting cleaned up, I went to ask a nurse for something to put on Kennedy, she pulled off the bandages on her legs and Austin came tearing out of the bathroom because Kennedy was bleeding all over! She had blood on her legs, arms, hands and floor. Once that was under control, she was cleaned up and again comfortable we moved on to getting the platelets over with. We were able to leave about 4:30-just in time to hit rush hour traffic. Luckily, we don’t have to do this again soon. Her next dose of chemo (more Vincristine) isn’t until the 8th although she does get another bone marrow aspiration on that day. We will also be watching her red cells. Although she received a transfusion on Thursday, her counts are again as low as they were Monday making her anemic again this week. The staff expects her to need another transfusion later this week or by Monday when we return. Her treatment is just devouring the red cells making it hard to keep up. So that’s the latest scoop. I keep thinking at some point there will be no news to report and my journal entries will be smaller but that hasn’t happened yet. Could be because of all that is going on or could be that I’m just long winded! 🙂 Anyway, my good thing that happened today? I made it to the top of the pasture on a walk (by myself 🙂 in 20 minutes. For those who have seen this hill-that is fab!! Must have been all that pent up anger and frustration that pushed me along. It was just so awesome to accomplish something successful today.

Prayer:

Kennedy-side effects from chemo, healing, strength, and peace

Mel-PEACE that passes all understanding, sleep!, and to lean on our Lord rather than expect someone to fill the emptiness (ok, and healing for this terrible sunburn that is driving me nuts!

Keith-work, peace and strength

Austin-peace and understanding

Grammie and Papa-rest, peace and strength, and healing for sore muscles and sunburn

Continued prayer for other children and their families fighting cancer:

Warren-Burkitt’s Lymphoma
Joshua-Ewing’s Sarcoma
Maggie-MLL (a rare combination of AML and ALL)
Oliver-AML
Kaitlin-ALL
Emily-ALL

Love and thanks,
Melenie

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