Courage for Kennedy – Journal

May 27, 2008

Finally…an update!

Category: Treatment – Melenie – 2:45 pm

Sorry about that…time just simply gets away from me! I want to be sure I have enough time to actually right an entry rather than just a quick stop in so that can be a reason (or excuse, depending on how you look at it) why it takes so long. Since I have received multiple emails regarding the MRI (and you know who you are!) here is what we know…

Good news! No AVN! That was fantastic. Everything looks fine as far as bones and tendons so that was great! The part that drives me crazy…is that we don’t have a clue what is causing the problem. We have ruled out orthopedic so we are looking in to a neurological cause. This is what I have suspected all along (as has her PT, AS) and am glad to be moving forward finally. The oncologist still recommends seeing an orthopedist but I feel it is a mute point. With the help of AS, we have an appointment with a physiatrist (a rehabilitation doctor) on June 16th. We are hoping to have some more clear answers or at least a better direction to go in. We may still pursue a neurologist as some other issues are cropping up. Also, please pray. Kennedy is having her 3rd set of AFOs made as we speak as the other 2 have hurt her feet terribly…even causing sores on her feet. She absolutely needs them and we are hoping that 3rd times a charm. If not, we will have to have them made somewhere else and that will cause a huge fight with the insurance company…not my favorite thing although I am pretty well versed in “insurance-ese.”

Kennedy also finished her neuropsych testing so we are waiting on those results. I don’t expect much different from the original findings a year an a half ago although she has developed 2 new behaviors in the last year. One is staring…and I don’t mean like just looking at someone or something but spacing out for extended periods that are difficult to distract her from. She also will repeat the same phrase or word over and over and over and over. Almost sing songy and it can last as long as 30 minutes and be difficult to get her to stop. The neuropsychologist (who is just awesome, by the way) said she did it during testing as well. I’m glad…often times she doesn’t do it when the person I need to see it is there. 🙂 Ain’t that just like a kid! We do not have an appointment to go over the results yet but I expect to hear from her soon.

Other than that, Kennedy is doing great. She has her first rodeo on Saturday in St. Paul. She is moderately excited. She wants to try other forms of riding besides rodeo, which is fine. She doesn’t like that she is supposed to go fast. She is not very confident yet and with her lack of strength and coordination going fast on a horse can be scary. I found riding lessons and a 4H club nearby so we are checking in to that. It’s all about the $ though. I am trying to work something out for equine therapy so we will see what comes of that.

Oh, I took her to the dentist today expecting to find out that half her teeth were rotting out of her head only to learn she has one small cavity. When kids go through treatment, there are times when you can not brush their teeth, they have a terrible diet and chemo destroys tooth enamel…apparently our girl has great teeth! Radiation also can damage teeth…not hers though! She has had this cavity for over 2 years but we could not get it fixed unless it was an emergency until now…it has not hardly grown at all! She has no dental insurance so prayers for that would be helpful…just her cleaning and examine and xrays was over $150! Ouch! Well, it’s another write off, I guess.

Also, please pray for another little girl and her family who was recently diagnosed with ALL. They do not have health insurance either as the father is self employed. Her name is Serenity and they could certainly use lots of prayer as they embark on their new journey.

In addition, many of you have asked about Kennedy’s cousin, Devon, who was diagnosed last summer with cancer. She is doing awesome! She did well during treatment and is cancer free. They went to Walt Disney World for her Make A Wish and I CAN’T wait to see the pictures!

Well, it’s off to a busy summer…Kennedy has an appointment with oncology on June 5th so we will be updating soon…maybe sooner…I’ll have to share all about St. Paul!

In His hands,

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