Courage for Kennedy – Journal


February 5, 2006

Another Week Down…How Many More to Go??

Category: Treatment – Melenie – 12:09 pm

Well, we’ve finished another week of treatment. Now we just have until August 2007 until we are home free!

Kennedy had a clinic appointment on Friday. Her blood counts are stable. They think she probably could have tolerated 100% dose but not 120% which is what they would have given her. Her liver function counts though looked terrible again. She had lost more weight and was now down to 38lbs so the feeding tube had to go back in. Her liver is not able to function anywhere near normal without enough calories, fat and protein so when she is not eating it starts having problems again. Her bilirubin was back up as were her ammonia levels (al was in the normal range and her bili was close to normal). This is such a delicate dance. We also increased the Lactulose again-lucky mommy! I changed 8 poopy diapers in one hour this morning. My hands are just cracked, raw and dry from washing and when I got in the shower last night, they just burned from the hot water. The insertion of the NG tube did not go well as you can all imagine. I don’t blame her really, I can not even fathom how horrible it must feel going in. Thankfully, and with much prayer, it only took about 24-36 hours for her to get used to it and stop gagging this time. Unlike the last time, where she was vomiting for 5-7 days, she did not vomit at all. I was so proud of her.

Kennedy had wanted to see Rebekah, a friend from the clinic, all day and didn’t see her until the NG tube was in and she was hysterical. I would have loved to visit too but Kennedy was in full blown melt down mode. Rebekah looked great and we ask that you pray for her family this week while they are put through a battery of end of chemo tests and await the results. Ewings Sarcoma is a nasty cancer and we just come against the enemy and claim healing and a long blessed life for Rebekah. You can meet Rebekah and find out more about Ewings at www.helprebekah.com

Yesterday I took Kennedy with me to go stamping at my friend Kristy’s house. It was great to get out and visit with everyone after not seeing them for so long. Kennedy had a blast playing with Jayden, Jadwyn and Tennisyn. She spends so much time around kids with cancer that playing with other kids is a luxury. Her ANC was at 1800 Friday so I just let her play and be a normal kid. Kennedy is feeling better today and we even went out to Chang’s last night with Grammie and Papa. Austin did not like it as well as he thought he would but I think he didn’t realize that the food was uncooked and you made it yourself. I think he thought it would be like a chinese buffet. Kennedy had some soup and rice with plum sauce and the adults of course, overindulged! We then hit Winco. Kennedy loves going shopping so she was thrilled. Now, I LOVE Winco prices but I HATE the store…kind of like shopping at Walmart.

Thank you everyone for your prayers. I am feeling much better and truly believe that I am on the mend from my little mess last week. I’m sure the medicine helped but prayer was the turning point. It is so hard to take care of Kennedy when I feel so crappy. Austin is also doing better. I think the majority of his problem is stress and anxiety though. Keith did have his appointment on Friday and please pray for him as he fights quitting chewing and smoking. This is a difficult enough task normally but add stress and it can be a downright battle. He is playing poker this afternoon and then we will all be watching the Superbowl-GO SEAHAWKS!!

So this week we have a counts check on Tuesday along with physical therapy and Friday Kennedy has an LP w/Methotrexate in her spinal fluid, IV Methotrexate and more Vincristine. She is having a lot of leg pain and struggling to walk so continued prayer for that. We are trying to find a stroller that will accomodate “steroid weight” but is light and compact. She has a jogging stroller but it is so long that it doesn’t fit well in the elevators or offices at the hospital. We are hoping to find something this week as it is getting very difficult to carry her all the time with her weight fluctuation and my back.

Please pray for all the kiddos fighting cancer, dealing with side effects and complications, recovering from treatment and facing long term complications. Also continue to pray for those families who have lost their dear children.

Love-Hope-Faith,
Mel

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