Courage for Kennedy – Journal

May 7, 2008

Another Update with More Info Coming Soon

Category: Treatment – Melenie – 11:11 pm

I apologize for not updating sooner…school is kicking me in the behind…big time! My grades are fine…I’m just having a hard time keeping up on my life.

Kennedy is doing pretty well. Last month she had her 8 month post treatment check up and things are looking relatively well on the cancer front. Her red cells have not fully recovered (they are larger than normal) but they do not seem overly concerned about it.

I am concerned, however, about the neuropathy issue and the lack of concern on their part. When I asked about seeing a neurologist, their comment was that they would not be able to tell me anything different than what I already know or recommend anything different than what we are already doing. Frustrating. No one has any answers and that just makes me insane. No one knows if it is permanent, long term, will go away, get better but hang around, get worse or what. Ugh! “I don’t know” is the standard answer. Apparently, not too many ALL kids have this issue so they don’t know. It is different in everyone…everyone reacts differently to treatment. So…still at square one. She does have her braces now but they are pinching her feet so we’ll talk to her PT on Friday and see if we can adjust them. She does like to wear them and is much more confident when she has them on. Without them, she struggles to clear her toes when walking, turns her feet in and “pops” or hyperextends her knees when she steps. She has been complaining of pain in her knees and above her knees quite consistently (about 4 to 5x per week) and it does not seem to be associated with activity although about a week and a half ago she cried for awhile (about an hour) because of pain in her knees and feet. So, tomorrow we head back to Emanuel for an MRI that will look at everything from the waist down as the oncologists and PT suspect AVN in her knees. AVN is a degenerative disorder in which the blood flow is restricted or cut off from the bone (due to months of high dose steroids) and the bone begins to die, usually in the joint. It is most common in teenagers but Kennedy’s PT has 3 other 7 year old patients with AVN. That could be the reason she “pops” her knees when she walks and why her knee cap is so loose and why she is having pain. When they did an MRI in October 2006, she had restricted or lacking blood flow to her knees and just above and below but not enough for them to stop giving her steroids which continued for another 10 months. We’ll soon find out…if that is not it, it could be a variety of problems including orthopedic. She could have damaged the knees because of her neuropathy issue. Either way, not fair for a 7 year old to deal with. The treatment for AVN is doing what we are doing now with the braces and PT but eventually the joint deteriorates to the point of needing to be totally replaced. Not fun. Please pray for healing for Kennedy.

Also, we are praising that Emanuel has hired a new neuropsychologist! The wait list had been as long as 2 years to see one (oncology kids however, are made a priority “only” waiting about 6 months) but now kids are being scheduled again! Kennedy had her last np evaluation in October/November 2006 and would be due by August of this year but is scheduled for Monday and Wednesday of next week! It is rarely positive news (ok, there is always some positive) but it is good to know where she is at compared to then. With all the intrathecal (in her spinal fluid) chemo Kennedy had and the cranial radiation, this is a vital test and one she will have yearly until she is 12 and then again at about 15 and finally at 18. I will have to find an easy way to explain what a neuropsychologist does but basically they look at intellegence, memory, attention, processing, learning disabilities, fine motor skills, learning styles, sensory input, etc. When they called to make the appt today, she asked me to bring in Kennedy’s test scores from school…I explained that she is homeschooled and she did not know what to say. I also explained that Kennedy does not need to submit to “testing” as she is considered special needs and instead I have to submit a development plan. I told her that I would be happy to bring in samples of Kennedy’s work to show the np. She then asked why I bothered to have the np testing done…WHAT? Apparently, I am incapable of reading the report and understanding what needs to be done to educate my child. The np test is a HUGE help to me and allows me to clue in on what her strengths and weaknesses are so I can better adjust our education plan and goals so that Kennedy can reach her full potential. I should not be surprised as the np who tested her the first time felt Kennedy was being “hurt” by not having the “opportunity” to participate in special ed. Excuse me? Kennedy may have learning disabilities and slow processing but she is far too intellegent to be in special ed. I refuse to let her down. Let’s just say we are getting off on the wrong foot and I have not even met this woman in person. It ought to be a fun week next week.

Hmmm…what else…May 9th is coming up again…it will be 3 years since she was diagnosed. Wow! 3 years! Watch for my post on that day…it has become a day of reflection.

Also, please pray for both Samuel and Craig as they make their journey to heaven. Pray for their families…I can not fathom the immense pain they are being asked to endure. Both of these boys have fought the courageous fight and are good and faithful servants of the Lord. They are beautiful and I have gained so much from watching them walk out their stories. May they rise up on wings like eagles….

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