Courage for Kennedy – Journal

January 23, 2007

Category: Treatment – Melenie 11:57 pm

I was going to update tomorrow but since I know that if I put it off until I have tons to write, I only want to put it off more so here is the latest and I will plan to update this weekend.

Well, the snow is gone and the sun is shining. You would think that the kids would be heartbroken but this was the 5th or 6th time it snowed already this year at our house and because they homeschool they don’t get snow days so it’s not that exciting anymore…plus, mom won’t go anywhere in it so if they want to do something they have to wait until dad gets home and after working since before the sun rose he sure as heck isn’t going anywhere to do anything. I wasn’t a complete “Shrek” (as Kennedy likes to call us when we are being mean 🙂 after all, I did let them play in the snow and cut back on how much school work they had to do. We did miss 2 weeks at the clinic for counts checks and at least one pt and ot session-thankfully we are at a point where we can miss and nothing too serious will happen.

Kennedy is doing well in OT. She struggles and it is hard work but she perseveres and does not give up. We will be starting a new program for her that her OT has recommended called “Handwriting Without Tears.” For those of you who are homeschoolers, you have probably heard about it or use it yourself. While Kennedy can write most of her letters and numbers, her inability to hold her pencil correctly due to weak grasp in her fingers has caused her to form the letters incorrectly. She grasps pencils, crayons, her toothbrush, her utensils, etc. between her thumb and hand and uses her fingers for balance. She uses the strength in her wrist and forearm to do the things she wants to and because she already has weakness in her hands and arms, she tires quickly. We have purchased plates with high sides to help her and thick handled toddler utensils but she does give up soon and eats with her hands. Very frustrating considering she ate with utensils great when she was 2 years old. She is working hard and truly desires to regain those skills and I know she can do it. I’m just so thankful we didn’t have to wait any longer to get her started!

She had PT with Amy today and was just a bundle of energy! Amy re-evaluated Kennedy with the test she did in August to see if Kennedy was progressing. We both have concerns that she may have maxed out her potential at this point. She is doing well, but not really progressing anymore. Amy feels that Kennedy could be in PT indefinitely and while she would gain some benefits from it, she needs the opportunity to be a kid! I couldn’t agree more. And if she is not making headway, this may be a good time to change the plan. So, we are thinking (and I am praying) and we will regroup next week but it looks like we may do another month and then continue with a home program. Amy thinks we may be able to go as long as 6 months between evaluations but I would like to see us closer to 12 weeks. For a home program we will continue with ballet as she is gaining/maintaining coordination, balance and strength, we will also do horsebackriding, of course, for those skills and we have discussed swimming lessons to help with muscle development. We will continue with the yoga program as that helps in the above areas but also with flexibility and her attention/focusing skills. We definitely plan to see Amy (and hopefully Sean) outside the hospital as we have come to love and adore her very much. It really is a waiting game but it appears that Kennedy will continue to struggle with balance and coordination for many years. That’s ok. Her braces are made to last about a year and she is wearing them every day and doing much better with them on. Plus, you sure can’t beat disabled parking! 🙂 There has be a bright side after all! So she won’t be a triathlete or walk a tightrope…I can live with that!

Let’s see…tomorrow she has her back poke. Yippee! 🙁 She doesn’t mind, in fact, she runs to the procedure room, hops on the table and helps them set-up! What a goofy girl! Who would have guessed that a spinal tap and chemo would be so routine? I remember when it was the most traumatic event of the week! For me it is still upsetting as I know that it is possible for tests to come back with leukemia in her spinal fluid but it is also a reminder of how bad things have been. You know, we go along for 3 months living the good life and this just takes me back to the first days of her diagnosis when back pokes were just one more new thing to adjust to. One more thing I wish I could have gone on being nieve about. It just stinks. But it is over quickly, the results are in the next day and we go back to being happy go lucky for another 12 weeks!

You know, I was looking at pictures the other day of Kennedy before she was dx’d and it was so weird. I mean, I have scrapped pictures from her first 2 years and seen her but she was really still a baby. These were pictures of the year before we found out. She was so blond and so chubby. She was so happy and giggly and was often holding tight to her brother. It looked like somebody else’s child. I know that sounds strange but it was like I had no idea who that little girl was. When I think of Kennedy I only picture her the way she is today. She has been totally bald or had very short hair for well over a year and a half. When her hair has grown in, it is not the same hair she had. It was so strange. Even Kennedy looked at her pictures and commented about how different she looked with hair. She also kept saying she was sick as if that is all her life has been.

When she was first diagnosed, the thought of losing her hair was devestating to her. She was worried she would look like a boy and not look like her mommy (everyone called her my mini-me). When it fell out though, she wasn’t too bothered and was actually relieved when it was finally all gone. We let her cut it a couple of times and you all remember the time she cut it and stuffed it in her brother’s dirty sock! She liked the freedom of being bald (not having to deal with hair in her face, washing it, tangles, have her hair put up) but when people stare at her she is reminded that she is different and she doesn’t like that. She hates being called a boy and her and I have resorted to “boy comments” with “she’s a girl, thank you, she has cancer.” That shuts people up in a hurry. I use to be nice about it and worry about others feelings but decided that it is not her fault and it is her feelings I am really most concerned with. She has worn her fake hair occasionally and has loved the shock value of removing it in public! The other night we took her out to dinner (her brother was staying the night with a friend) and a woman came up to our table and said she had been looking at Kennedy all night and had to tell us what an amazingly beautiful daughter we had. She described Kennedy as angelic. We all graciously thanked her and wondered if she knew how much it meant to Kennedy. People do comment to her that she is beautiful but that time it really made an impression on Kenne. Many times she has commented that she doesn’t feel pretty, she wishes she had long hair or that she just looks ugly (when she had her feeding tube) and as a mom it just breaks my heart. We never think of it at home but I have learned that people are definitely a different breed. I never thought about what it must be like for someone in society to be different until Kennedy went through this and it can be really tough. While I haven’t said anything, the hair loss has bothered me tremendously. I have hated the way people stare or comment. I hate that no matter how good she looks during treatment, the fact that she has no hair tells everyone that she has cancer. You don’t think it does and you all can say it doesn’t make a difference but it does! People (imperfect strangers) have asked us what kind of cancer she has just because she is bald (or has short hair). One of the things I have struggled with as a result (and knew would be a problem from day 1) is that I HATE that people look at her and see her only as a kid with cancer. As if that is who she is! That is such a small part of Kennedy. She is a daughter, sister, granddaughter, niece, cousin, friend, ballet dancer, horseback rider, rodeo queen, student, lover of books, princess, artist, hair and make up stylist, fashion designer, she is imaginative, thoughtful, funny, smart, loving, kind, she loves horses and dogs and cries when she sees them being hurt on TV, she wants to be a mommy and homeschool her kids, she loves pink and wants to grow up to be a princess and somewhere in there, really small and if you look real close, she is also a warrior and is working to win the battle with cancer but it is NOT who she is. I wish they could see beyond the hair. You know, maybe God is working in me by not allowing her hair to grow back all this time. We know kids who have never lost their hair or who have beautiful full heads of hair during maintenance and no one knows they are sick but maybe God is working on my own vanity. Hmmm…not fun. Or perhaps He is speaking to me through my children again. I LOVE that He uses my children to teach me. How they teach us with their spirit and all their innocence. Who couldn’t help but love that? Kennedy has been commenting lately that she plans to grow her hair long and donate it to Locks of Love so other kids don’t have to be bald if they don’t want to. She also plans to grow up and work for Santa making dolls with removal hair for kids with cancer 🙂

Well, as you all know, I could go on and on and on and on but the night is late and tomorrow is a long day.

In His hands,

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