Update on Kelly 6/24/08
OK so I lied about the every two weeks. Where to begin, things have been busy as usual but that is ok with me, keeps my mind busy. Kelly is doing well, she has her ups and downs but don’t we all. Kelly has started the Temodar treatment and this chemo is a little harder on her bone marrow then we had hoped. We have cut the dose in half in hopes that her counts do not drop and she does not have to go down to the hospital for transfusions and does not get any infections. It’s all about Kelly and making sure she has a good quality of life and not living her life in the hospital. We have our next MRI scheduled for 7/22/08. I am already starting to PMS about it. For those of you who are not cancer people PMS is a term the hospital staff uses prior to MRI’s. Pre MRI Syndrome and boy do I have it. We just got back from 7 days at Ft. Myers beach. I wish I could say it was as nice and wonderful as our Disney trip was. It was kind of stressful, Kelly was not feeling well and nothing like an illness to put a damper on the vacation let alone an illness in a cancer child. She threw up for the first time since December after awaking from a nap. I was ready to come home early but called our Oncologist and he called in something over the phone. She seems to be back to herself and we were at the clinic yesterday and Dr. Jason does not seem to concerned about it. I’ll go with that for now or try to anyways.
Aunt Katie got married at the end of May and Kelly and Molly were flowers girls along with their cousin Caroline. Kelly did very well and all the girls looked beautiful. We had all the cousins push Kelly down the aisle, it was very touching. Kelly had a great time at the wedding. She tried so hard to stay up and kept asking when the dancing was going to start. She heard so much about Uncle Jimmy’s wedding and the dancing, she was determined to stay up for the dancing this time. For Uncle Jimmy’s wedding she made it to the dinner and just missed the beginning of the dancing but Molly made up for her and everybody else that did not have happy feet that night. Molly would have made my dad proud. Kelly loves Johnny Cash and the band played several Johnny Cash songs. Kelly danced her feet off and it was a pure joy dancing with her and also watching her. I had to ask her if she wanted to go home and she hesitated but it was 10:30 pm and our day began at 8:00 am.
Kelly also participated in her Kindergarten graduation. Gary and I had decided to keep her in Kindergarten, she only attended school for two months. Her birthday is in August so she is right at the cut off and this way she can participate in the entire year of K activities. She will be the oldest in her class rather then the youngest and why make her struggle. She learned in 2 months what all the other kids had 8 months to learn.
We are planning a variety of activities this summer, trying to make up for last summer when she slept on the couch the entire summer or was in the hospital. Next up is Kiddieland and Great America. My cousins have a place in Michigan and have so graciously allowed us to stay there for a few days in July. We have bought fishing poles and have spent some time at Tampier woods, hopefully weather permitting we will make it to Maple lake this week. The girls really enjoy fishing and I enjoy watching them.
Kelly is doing well with her walking, I think all the swimming in the backyard has helped loosen up her muscles. She was fitted for an AFO and by the time we went to pick it up 2 weeks later, it needed to be re-sized. The doc said that has only happened to him 2 times before, where the child has made so much progress that the brace needed to be re-sized. For those of you who might need to know, Nordstroms sells split sizes in shoes. We need a shoe 2 sizes bigger for her brace. She walks very good with the brace and the doc said he would guess that 6 months max for the brace. She already seems like she wants to start running.
That’s all I can think of of for now, other then the MRI on July 22nd. Please keep this date in the back of your minds and I know you will all be praying, but I must say it - please pray for stable. I get sick of the thought of it, I had an anxiety attack the other day and needed to leave the house and change what I was doing to get my mind off of it. Every little thing Kelly does I read into and think about it. I know that I should not do that, but easier said then done. That is the life of a cancer mom. Pictures of the Florida vacation are posted on the web-site where the others are located.
Thanks for the thoughts and prayers I know everybody has for Kelly.
Ellen