Courage for Kennedy – Journal

January 9, 2006

Category: Gratitude,Treatment – Melenie – 12:51 pm


It’s true-we were able to come home after her last dose of Defibritide at midnight Saturday night! We arrived home exhausted at 2:30am Sunday. It was so worth it to wake up in our own beds that morning. Before we left the hospital we had several visitors. Saturday morning, Princess Sara with Make a Wish came by to see how Kennedy was doing. It did not go well. Kennedy screamed almost the entire hour that she was there. We tried talking about Disneyland and her upcoming trip but she just continued to bury her head and cry. A picture with the princess was totally out of the question at that point. I felt so bad for Sara and Wendy of Make a Wish. Kennedy was just not going to lighten up at all. She was pretty tired though and was out within minutes of them leaving. Later that evening, Roxanne from Arthur Academy came bearing delicious food! Thank you so much. Then Kim was back with Darren, Skyler and Austin with more food and goodies. Home cooked food is such a blessing when you have to be stuck at the hospital-you just can’t appreciate how good it tastes until you’ve eaten hospital and fast food forever. I want to also thank our wonderful nurses and therapists-we could never do this without them. They truly spoiled us this week with a Christmas tree, gifts, cookies, etc. The nurses and staff at Emanuel are absolutely the best!

I packed up the trailer and cleaned it on Saturday and Keith went to play poker. He needed the break and it gave time for me to visit and get the room packed up to go. He was out in the first few rounds so he made it back early. He loaded up the van and the car and we waited…and waited…and waited. Keith suggested we just crash in the trailer but I really wanted to go home.

Sunday morning was wonderful. Kennedy had her Christmas morning and enjoyed all of her goodies. Later that day, Uncle Jeff, Auntie Caryn and Emily (Amber had stayed the night with Grandma) came over to celebrate Christmas Eve. We ate and visited and the kids played. They all had a blast opening presents and the girls were excited to play with all their goodies. Austin is set on books to read-he received all of the “Series of Unfortunate Events” books and the Narnia series.

This morning could have started off better. Kennedy was throwing up and our insurance company called at 8am to tell me that because she is on a clinical trial for chemo, they will not pay anything cancer related or side effect/complication related…EVER. Needless to say, I was reduced to tears and tried not to kill the messenger through the phone. I must have gotten to her because when I got back from taking Austin to school, there was a message on my phone stating that should we pull Kennedy off the study-even if her treatment stays the same-they will begin paying for her treatment from the date of the letter. I am in touch with the oncologists office as we speak to see what we can do. We will still be acquiring tremendous debt but not in the million dollar range. Kennedy desperately needs TPN right now but because of this mess we can not get it. It cost about $10,000/week and that is the max of her home health care benefits. Ugh! It just never ends. This could put us back inpatient just to be able to provide her with nutrition. I hate, hate, hate the system!!!! Please understand, I am not pro-universal health care but I would like to see the government make private insurance companies do their job without causing so much debt and anxiety to families. I mean, what are we paying all this money for anyway??? By not adequately providing benefits to their customers, they are costing EVERYONE more money-not just us. Please keep this ongoing struggle in your prayers. I need strength, patience and wisdom in dealing with this.

Kennedy is very tired today and has been sleeping until the last 10 minutes. She has pt tomorrow and an LP with intrathecal Methotrexate. They are easing her back in to chemo and watching her very closely because her liver still has not fully recovered. She is considered in stable condition.

We continue to hold on to hope and cling to Jeremiah 29:11
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
He has a plan for Kennedy!!

Please pray for little Oliver Trasen. After receiving a related bone marrow transplant in September to treat his AML, his leukemia has returned. He is only a year old and his family is really heartbroken over this.


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