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,

May 9, 2008

3 years…

Category: Treatment – Melenie 11:38 am

Wow! Three years today…let’s see, I believe Kennedy and I were still in Newport at this time…she was not feeling well…running a low fever and kind of dragging along. I was focused on getting my stuff done and a little annoyed that I had to carry her everywhere…I was NOT going to win Mother of the Year in 2005! She had been whiny for a couple of weeks with no obvious explanation other than she was 4. But then, off to the bathroom we went and with a toilet full of blood there was no denying that something was terribly wrong with Kennedy.

Now, I will not rehash all the gory details today of that first week…many of you know the story, and if you don’t, there is more than one entry covering it…just start at the very beginning…

What I would like to share today is where we are…not where we have been…

Today, Kennedy runs and plays and rides horses and laughs and sings. Today, Kennedy is learning to read and write and add and subtract. She learns about bugs and whales and how a seed becomes a plant and how the old kingdoms of Egypt were united. She feeds goats and loves our horses and nurtures our baby chicks. Today, Kennedy is an artist, a dancer and she aspires to work for Santa.

What you may not know is that today, Kennedy struggles to run and jump and dance because without her braces her feet turn in, she trips over her toes, and she hyperextends her knees. That even today, with her braces, her knees and feet will hurt and no one can figure out why or if it will ever go away. Today, she will continue to struggle with phonics because of her slow auditory processing and writing will be difficult because her fingers are weak and tire easily from holding a pencil. Today, math is a foreign concept without many different approaches so including her worksheet, we will use counters and fingers and lots of brain power to answer that 3 + 3 = 6. Today we will work on her bug lap book and while she will know the answers to the questions, it will take her more than ten minutes to “find” it and she will copy my words in her lapbook but will not be able to read them. She will feed the goats but have to be closely supervised so they don’t knock her down because her balance and coordination are that of a four year old. Despite her overwhelming desire to do so, Kennedy can not ride a bike today. Today, she will call Grandma or Daddy on the phone and I will have to remind her to say, “hello” first and “goodbye” before she hangs up as she becomes so worried about what she has to say and tries so hard not to forget, that she appears to be rude on the phone. Today, Kennedy will struggle to answer questions as it takes her a while to understand what is said and then formulate a response. She will have to use her visual board to remember what needs to be done to get ready in the morning and through her bedtime routine because otherwise she will go in the bathroom or her bedroom and not remember why she is there. Kennedy will struggle in conversations, she will become over stimulated from too much sensory input and she will tire more easily. Yesterday, she had an MRI, that took two hours, of her hips, knees and ankles, plus an hour long oncology clinic appointment. Next week she will endure eight hours of testing to find out to what extent the radiation and intrathecal chemo damaged her congnitive abilities, or at least if they are better or worse than they were a year and a half ago…they don’t get better…we just learn to adapt.

But to look at her…with her bouncy blond curls and toothless grin, you would never know…Kennedy is full of hope and resiliency and she does not let anything stop her in her pursuit for happiness.

She is my hero.

While we try to teach our children all about life,
Our children teach us what life is all about.
~Angela Schwindt

It is never too late to have a happy childhood. ~Tom Robbins

Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body. ~Elizabeth Stone


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….