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

September 1, 2005

Category: Treatment – Melenie 6:43 pm

Everytime we think we are moving up the ladder, we get kicked in the face and shoved back down! I am amazed at how Kennedy can go from being fine to being very ill. She woke up Saturday complaining of pain in her throat and difficulty swallowing with white patches on the roof of her mouth. I called Dr. Norwood and he insisted that we encourage fluids and call him if anything changed. Kennedy refused to eat throughout the day but insisted she wanted to attend the fundraiser. The food was wonderful and Kennedy LOVED all the Harley motorcycles but as the dance got fired up, she began to feel really icky and was burning up. I sent Keith to the store for a thermometer and her temperature was 101.8. As this was an automatic 48 hour stay, I called Dr. Norwood back who insisted we head to Emanuel for a direct admit. Her pain was becoming intolerable and when we arrived she was very upset. The only thing she had to eat Saturday was BBQ chips (who would have imagined when her mouth was so sore???) and from the pain, upset of being back at the hospital so soon and the anxiety of having her port accessed, she began vomiting what little she had in her stomach. This made accessing her port difficult and risky because of infection. The staff worked hard to get the vomiting under control but it still took a few more hours. They also started Kennedy on Morphine which wiped her out. By Sunday morning, Kennedy was in a comatosed state, had raging sores throughout her digestive tract and her bottom was burnt from the Methotrexate with open, weeping sores. As if that wasn’t enough, the tape from her access combined with the Methotrexate had left 3 weeping, open sores on her chest. She slept most of the time through Sunday and Monday while mucous pooled in her throat and mouth and the sores raged on. Monday morning she sounded like she was breathing through a straw and the oxygen levels in her blood were dropping to 81 which required that we give her oxygen. The residents ordered it without calling Dr. Norwood (of finding out what was causing it) and he let them know that it was not acceptable. He said that three things could be causing it: 1) the Methotrexate had caused damage to her lungs, 2) the mucous was pooling in her lungs and could lead to pneumonia or 3) she was in a drug induced like coma state and we needed to pull back on the meds. Lucky for us, it turned about to be too much Morphine. Still very scary and until she had started breathing better, they had considered sending her for a chest x-ray. They cut back on the amount of Morphine she was getting and we used the “magic mouthwash” to help heal the sores. She was not at all happy about that and at first, her mouth bled terribly but now she gets mad, opens her mouth and it looks so much better.

Tuesday she was more alert and was continuing to refuse food and only taking sips of water. Her weight on Saturday was only 36.6 lbs. This was a 17 percent loss in body weight since diagnosis and she had finally crossed the line and now will require regular supplements to her diet. As you all remember, we tried appetite stimulants which only managed to make her very sick, so on Tuesday they began feeding her through her port line with TPN. This provides all the nutrients she needs and about 800 calories. While that doesn’t sound like enough, please keep in mind she was taking in about 300-500 a day over the last month. Because of the open mouth sores, they will not be inserting an ng tube until next week. It goes in blindly and they did not want to further damage her nose, throat and stomach. Her TPN runs 24 hours and helps her to be stronger and meet her nutritional needs. She can eat but has only been willing to take in about 8 ounces of Egg Drop soup in five days. Even with the ng tube she will be able to eat, this will just insure no more weight loss and enough vitamins and minerals for her body to grow. TPN looks like milk and when Kennedy saw it she said that she doesn’t like milk! We told her it wasn’t and she didn’t have to drink it anyway. I can only imagine what her weight was on Tuesday. It was such a huge relief to me when they took this step.

We also began talking about some of the skills that Kennedy is losing. She was evaluated on Wednesday and today by physical therapy, occupational therapy and speech therapy. This was possible only because they moved her to a Morphine drip rather than a large dose every two hours. We tried giving her control with a Morphine TPA that had a button she could push. However, in Kennedy’s hard headed style, she refused to push it and did not want anyone else to push it despite being in tremendous pain (shaking, crying and an elevated heart rate and blood pressure). Once they moved her to the drip and found the right dose she was perky, playful and pain free! She played hospital bingo from her room yesterday and won! Of course, she picked ANOTHER Barbie. She also began to ask for toys and crayons. This indicated that it would be a good time for her evals. OT determined that she was actually pretty close to average ability for her age but encouraged us to work with on writing, bead popping, and hand eye coordination exercises. They also gave us a foam “gripper” for her silverware and toothbrush to help her retain strength in her hands. She went on a hospital shopping spree with the physical therapist, Amy, today and was unsteady on her feet, had some weak muscles and balance issues but overall did really good. We will be working on different ways for her to come up and down the stairs and are waiting for further results from her tomorrow. Speech however, requires more work and follow up now. As a result of chemo, and her short frenulum, Kennedy has seen a decrease and difficulty in her oral skills. She will be working on breathing exercises, breath strengthening exercises (which requires working with and strengthening her diaphram) and exercises involving her mouth and tongue. She is less than thrilled as you can imagine. She will also be having a hearing test next week while we are inpatient to see if chemo has damaged her hearing. A busy two days for sure!

So, she has to do two things to come home tomorrow. She has to be off the Morphine drip, which we are working on, and be taking something (even water) by mouth. She can’t just put it in her mouth, she has to be willing to swallow it. The sores are healing so she is at least willing to do this. We will be going home with her accessed and still being fed via the TPN. A home health nurse will be meeting with us tomorrow to work out all the details. Today she is active, talking and playing so it looks good. As fast as she gets sick, she also gets better. I have much more to add and new pictures but because I am writing this in the hospital resource room and I need to be back with Kennedy, I will have to continue you this later.

Please pray for our friend, Maggie Mae. After having a bone marrow transplant about a month ago, she has relapsed for the second time. Her family is making her comfortable at home now and will be calling in hospice care when needed. She is only 3 years old and has a very rare mixed lineage leukemia (both ALL like Kennedy, and AML). Her family needs much prayer right now.

Love-Hope-Courage

Melenie