Courage for Kennedy – Journal


February 2, 2006

Everyone’s Falling Apart :)

Category: General,Gratitude,Treatment – Melenie – 8:13 am

Another exciting week in the Duval/Platts house…Austin had some kind of tummy problem and missed school both Monday and Tuesday (I think it’s stress :)), Kennedy had her appointment on Tuesday and Wednesday, and I had a Dr’s appointment on Wednesday for my cough. So what are the results of all of this?

Austin is fine and back in school. I think the poor kid is working through a lot emotionally this year and having a hard time being away from us during the day. That would certainly create some tummy upset for me!

Kennedy did well on Tuesday. Her ammonia levels were in the normal range and while her enzymes and bilirubin are still high, they were closer to normal. Her platelets were 80-they haven’t been over 100 (140-440 is normal) since her last round of chemo. I expect she will need a transfusion by next week. It has been almost 3 weeks since she got her last dose of IV Methotrexate so she was definitely due. She also got another round of Vincristine (mean Christine). Today, Wednesday, she had to have her PEG injections. I put off telling her until the very last minute and she went in to a crying frenzy. I can’t really blame her-I would not be happy about getting routine shots in my upper thighs. She did well and insisted that she only wanted one nurse to do it despite the fact that she could only do one at a time. Kennedy also had to give a urine sample (no small task for a 5 year old with chronic diarrhea) and her urine was very concentrated so even though I told her we weren’t going to, her port had to be accessed for counts and fluid. Boy was she ticked off after all of that! She also had physical therapy on Tuesday and because Austin was there she did fantastic and we didn’t have any tears (her, I or Amy!) She made “Austin/worm soup,� she raced him on her scooter and played beach-volleyball. We talked about her new braces and our insurance “pre-authorized� them (which means that they will let someone make them and then refuse to pay for them) so Amy will be taking casts of Kennedy’s feet next week. After we get them in about 3 weeks, we will head to Soft Star Shoes in Corvallis to have new shoes made for Kennedy. Everyone should check them out as they make wonderful shoes for kids of all ages (infants to 100 years) and they are donating shoes to both Kennedy and Austin. They are not elves-they are angels in disguise. Kennedy was also supposed to have her occupational therapy evaluation in April (crazy, huh????) but after Amy explained to the OT department what it was all about, they are working to fit her in over the next two weeks. It is necessary for her to have her evaluation to start her boot-camp regimen. As most of you remember, she recently lost her NG tube, unfortunately, she is not eating enough and it looks like it will be going back in Friday. Wednesday her bilirubin and enzyme levels were back up and her protein levels were down which is a sign that she is not eating enough. She was also dehydrated and required a bolus of fluids before we could go home. Tricia, the nurse practitioner, told her if she didn’t eat dinner or breakfast she would be getting it back in on Thursday. She did eat dinner so hopefully she’ll eat breakfast too. Because she has control over very few things, she has chosen food as her battleground. This only makes getting her to eat or drink more difficult. If she gets below 17.5 kg it goes in for sure and today she was at 17.8 kg. Good thing we didn’t donate the formula and bags or take back the pump, huh? Other than that she is very active, playing, talking up a storm, walking better, antagonizing her brother and very, very happy. She looks great and her spirits are the best they’ve been since Thanksgiving. It’s hard to believe we almost lost her at Christmas.

Well, she’s doing better but apparently I’m falling apart. I finally was able to get to the doctor today (Wednesday) and I have a nasty lung infection but not pneumonia. I am on my own cocktail of meds now and hopefully will be better soon. That muscle I thought I pulled in my side the other night? Turns out I had a rather large, nasty ovarian cyst that ruptured while I was coughing. Nice. I had an ultrasound today (boy, there is a funny story to go with that one-you’ll have to ask me when you see me) and it was obvious to the radiologist what happened but I had to wait another 5 hours to get the info from my doctor. She told me not to do any heavy lifting and to take it easy-yeah right! Of course, I’ve been carrying Kennedy on that side since it happened because I thought it was just a pulled muscle. She said it would take a while to heal but should be fine. I guess it is always something. I figure with all the crap I’ve been through, it should be my turn to win the Powerball this week.

The way things have gone this week, Keith should be very afraid for his appointment on Friday. It probably won’t start out so great since I left a list of things for the doctor to talk with him about. Hee Hee 🙂 Well, you all know how he is…he’ll go in there and say that he’s “fine.â€? He’s just cruising along-being Keith-and is looking forward to warmer, dryer weather for working in.

Mom and Dad are doing great-planning their trip to Idaho in April for Grandma Marty. We all wish we could go but know that the Drs. will never release Kennedy to travel that far. Please pray for my mom as she gets ready to have carpel tunnel surgery next week and again in March. Pray for total and complete healing. My sister also has an upcoming surgery so please take time to pray for her as she heals.

Continued prayers for Oliver as his family makes some very tough choices during their difficult time and pray for Maggie and Nikolette’s families as they learn to move forward without their girls. Prayer for children finished with chemo who are now dealing with long term effects and/or lingering problems and those who are just learning to move forward without chemo…Warren, Rebekah and Joshua. Prayer for kids who are still fighting…there are many.

Many thanks to all who have taken the time to give to our family in so many ways-we are continually blessed by your love and prayers. God is so good and we should praise his holy name with all of our heart, mind and spirit. Praying many blessings for all of you.

Diseases of the soul are more dangerous and more numerous than those of the body. ~Cicero

I must give credit where credit is due…all of my quotes come from a wonderful site called “The Quote Garden” at www.quotegarden.com; check them out!

Love-Hope-Faith,
Mel

Watch for another raffle fundraiser with incredible prizes donated to Courage4Kennedy by Timberline lodge. If you love the snow and love to ski these are definitely for you!!! T-shirt proofs and bracelets proofs have been made and sent so look for these soon and don’t forget the upcoming Indoor Garage Sale. It is not too late to donate or help out…click on Indoor Garage Sale to find out how.

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