Courage for Kennedy – Journal

January 18, 2007

We Are Still Here!

Category: Family,Gratitude,Treatment – Melenie – 11:08 pm

It is no excuse to say that we are busy or that “no news is good news” or any of that other crap…I just plain haven’t been updating the site. There…no excuses. I finally decided I better get to it since my sister-in-law wanted to know what was up with Thanksgiving in January 🙂 You know, I am always checking other people’s websites and wondering why they haven’t updated IN A FEW DAYS but am not considerate enough to update Kennedy’s! What is wrong with me?

Ok, that is not what you all came here to read so let me catch you up on all the fun around here 🙂 After Thanksgiving we had a bit of a scare when Kennedy began falling to her left side (I mean, her left leg was covered in bruises while her right leg was showing not a single shade of purple, blue or green) and had a day where she was slurring and stuttering. Now, Kennedy does have some speech issues, but not like that! I commented to her doctor because it was unusual but didn’t really suspect that anything was wrong since she seemed better when she woke up. They immediately began to panic and ordered an MRI for the next morning along with an EEG and extra blood work. They suspected that it was possibly a stroke, seizures or a brain infection. WHAT??? Never mind that we had just spent that morning getting a 2 hour MRI to check for degeneration in her weight bearing joints (both hips, knees and ankles). That had not gone well…when they accessed her port, they poked her in the wrong place and tried to draw blood out of her chest! I just about had a heart attack but Kennedy took it all in stride and even informed the IV team member that it was in the wrong place without even a tear. She did manage to make things right and Kennedy was asleep in no time. Ok, the results. Kennedy does not have a degenerative disorder (AVN) but does have signs of osteopenia (early stage osteoporosis) and while her bone length is fine, the diameter of her bones and their density has been altered by the steroids. Not so much that they are willing to make a change in her medication but she is now taking regular calcium supplaments in addition to her daily meds and the calcium in her diet. God is amazing and I believe that He is protecting her bones and joints. Remember she was stepped on by a 1000 lb. horse this summer and while her foot turned the most awful shade of black, it was NOT broken. There is no medical reason why her foot and toes should not have been at least cracked if not shattered except that God and his angels were watching out for her. Psalm 91:11-12 “For He shall give His angels charge over you, to keep you in all your ways. In their hands they shall bear you up, lest you dash your foot against a stone (or horse).” He knows. And as far as the brain MRI and EEG, there are significant, non-specific changes to the white matter of Kennedy’s brain. No sign of stroke, not that one side is more damaged than the other, no bleeding or bruising, no lack of blood flow to any area and no signs or infection or seizure activity. The changes that they are talking about are ones that I have previously discussed that have been known to cause memory loss, attention deficit and slow processing. It is disheartening to know that these “changes” can actually be seen, that there is visible, physical damage. Now, how do I feel about all of this? I feel that Kennedy is in the very capable, very loving hands of God. Sure, I worry about the changes to her bones but she can still walk. She can still run. She can still dance. She is jumping and playing and growing. The changes to her brain and the effects of these changes…not thrilled but she talks, thinks, learns and laughs. And you know what? I KNOW that God is healing her brain too. I have seen improvements in her memory, ability to recognize order and patterns and while she still struggles with her attention, I see improvement everyday and I know that we can teach her and retrain her brain so that she will be able to do anything she wants. It may take her a little longer to figure it out but her intellegence has been protected (the parts of her brain that affect her ability to comprehend and her intellect are intact as if nothing has happened). In the last few weeks, I have had an overwhelming peace about Kennedy’s future. I am clinging to God’s promise in Jeremiah 29:11 that He has a hope and a future for Kennedy, a future that is good.

So, that is where we are at. Kennedy is now at 100% of her dose and her body is doing well as is her liver function. She did crash when her chemo was at 125% but recovered quickly and has done very well at her current level. We have reduced her liver medication with great results and there is continued hope that her liver function will return to normal when her chemo ends in August. Praise God! She will have to be careful with her liver as far as medication and alcohol but there is no reason why she should not be able to live a normal life without future complications as far as her liver is concerned.

I spent much of Christmas reflecting on how far we have come on this journey and what the future holds for us. Last year, Kennedy was knocking at death’s door and everything was very uncertain. Even when we brought her home, she could not sit unsupported, had lost her ability to walk and could barely crawl, her speech had been disrupted and she would soon have another feeding tube. And what did this Christmas season hold for us? She danced 3 performances of the Nutcracker in two days! She baked cookies, played with cousins, decorated the tree, wrapped presents, visited with friends and family, old and new and joyfully rang in the new year. It is amazing what a year can do for your life. In 525,600 minutes a whole new life can happen…a whole new chance at life can be yours. The minutes have already started for this year…how will you spend your share of 525,600 minutes?

I promise more to come…Kennedy and Austin are excited about rodeo starting, I’m writing a book this year and starting on a new venture, financial freedom, new adventures to undertake…come along on this journey with me.

“When written in Chinese the word “crisis” is composed of two characters – one represents danger and the other represents opportunity.” ~John F. Kennedy, address, 12 April 1959

“Optimism is the foundation of courage.” ~Nicholas Murray Butler

In His hands,

Please pray for a house for my parents (this has certainly been a trial of it’s own!)

Also, continue to pray for Gage as he battles AML and Donovan as he becomes an angel and of course, the many children fighting the cancer dragon.

And many, many thanks to my fellow homeschool moms who adopted our family for Christmas. You made an AMAZING difference and truly blessed us all with your love and generosity. And thank you to Candlelighters and the NE Optomists Club for helping us to have the most incredible Christmas this year. We are continually blessed and amazed by God’s people and His out pouring of love and compassion upon us. We truly serve an AWESOME God.

This is our song of 2006. I have changed a few of the lyrics (my apologies to the writer but I had to make it personal). My lyrics with appear in italics.

Seasons of Love (from Rent)

Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

How about love?
How about love?
How about love?
Measure in love

Seasons of love. Seasons of love

Five hundred twenty-five thousand
Six hundred minutes!
Five hundred twenty-five thousand
Journeys to plan.

Five hundred twenty-five thousand
Six hundred minutes
How do you measure the life
Of a woman or a man?

In truths that she learned,
Or in times that he cried.
In steps that they took,
Or the bonds that were tied.

It’s time now to sing out,
Tho’ the story never ends
Let’s celebrate
Remember a year in the life of friends
Remember the love!
Remember the love!
Seasons of love!

Oh you got to got to Remember the love! remember the love,
You Measure in love, know that love is a gift from up above, Seasons of love.
Share love, give love, spread love. Measure measure you life in love

One response to “We Are Still Here!”

  1. Becky says:

    It’s so wonderful to hear how you are all doing, and that Kennedy is making so much progress! You are always in my thoughts and prayers.

Leave a Reply

Your email address will not be published. Required fields are marked *