Courage for Kennedy – Journal

January 26, 2008

Just another day in paradise…

Category: Treatment – Melenie – 10:53 pm

Well, here comes the rain again…sounds familiar. We had several days of dry but very cold weather so it was nice to have the mud return to solid ground. Now, though, the rain has begun and once again returned our place to a giant mud hole where boots get stuck and the my kitchen floor goes from white to red in a few hours. Ugh!

Ok, enough whining!

On the Kennedy front though things are going along at their normal pace. Her incision has healed remarkably well and I will be giving Dr. Bliss (yes, that is really his name) a call and letting him know about her progress. He said that if it looked well (no bleeding, oozing, swelling, redness or fever) there was simply no reason to return to his office only to have him look at it and say, “yep, looks great!” I agree and so on Monday I will let them know just how beautiful it is. Kennedy will have a scar on her chest but in the grand scheme of things…not really a big deal.

At her oncologist’s urging, we are returning to therapy. We have had a nice break but it is time to get back to business. She was supposed to have a language eval on Wednesday but that is the day she spends with her new tutor and I have school, so it looks as if I’ll have to reschedule that one. I was hoping to make it work but scheduling has been impossible. Friday, however, we are still working on for her OT eval. Please cross your fingers that that one will come together as the further we push it out the longer she must wait…ok, that seems obvious…not sure why I said that! Her PT eval and leg recasting (for braces) is not until March but the scheduler said her PT would call us next week and perhaps she will be able to work us in sooner. Kennedy is excited to see her therapists again (she does love them dearly) but I am concerned about how I will add all of this to the already crazy schedule. As with most things, it will come together and work out. There is a good possiblity that her PT and OT can be scheduled on the same afternoon and her LST (language and speech therapy) can be scheduled for one of the days I am off school. Please pray that it all works out. What with my school, homeschooling, tutoring, ballet, classes at the academy and normal, everyday stuff (housework, animals, etc.) it can be difficult to add to the bunch.

So, yes, Kennedy will be seeing a tutor in addition to her other crazy things. We could not have asked for a more amazing lady to come along! She is creative, warm, friendly, very intellengent and understands Kennedy’s challenges. In addition, she tutors several other elementary age girls on the same days as Kennedy including her daughter. What fun for Kenne! I needed some additional help with Kennedy and she has some wonderful ideas that will give us a new approach. Somedays in reading it feels as if I am banging my head against a brick wall…a new outlook and perspective will help. She is just wonderful and both Kennedy and I are very excited! She also let us know about some classes in Oregon City that were open to homeschoolers so we are looking to take advantage of that. We should know for sure Tuesday as some classes were full already but they were going to ask the instructors about adding Austin or Kennedy, depending on the class. This will be a fun opportunity for them to have a classroom experience.

Hmm…let’s see…oh, they tested Kennedy to see if she has retained her immunities to chicken pox, hepatitis B and tetanus at her last appointment…intensive chemo can actually destroy some immunities although it is more common with bone marrow transplants. We suspected that she may have one that was lost and perhaps one that was right under the line but it turned out that she lost all of those. Her numbers were something like 0.01 when they needed to be over 1. Not good for her as she can not have any immunizations till at least August, preferably October. Now, they would like to discuss possibly testing for other immunities that could have been destroyed as well. Needless to say, this puts us on edge. She has NOT been told so please do not spill the beans as she is already anxious about the fact that she is behind on immunizations…she ONLY knows this because at her well child check-up the nurse began to discuss the immunizations she needed and when I told them she could not have any for 1 year Kennedy was sitting right there. The thought of having to have several more (including the Hep B series) will only stress her out more.

They are still examining the Charcot Marie Toothe Syndrome idea. Not sure yet what is happening there…

Other than that? Things are just busy.

Please continue to pray for Gage. It sounds like the doctors are anticipating a Ewings recurrence and planning accordingly. Many difficult decisions lie ahead for the Dole family so prayer for wisdom and guidance are crucial.


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