Tuesday, August 28, 2007
I know that the power of prayer works. I also know that there a lot of you out there who believe the same thing. If you are a part of a prayer circle I ask that you include her name, as well as pass this request along to keep the prayers going for her!
There is a link to her page located to the right.
Monday, August 27, 2007
Since Charli was diagnosed with cancer, we have had many acts of unbelievable kindness...stories that should probably be passed around in emails that go from friend to friend. Maybe someday I will write about them all!
I know that this is a little long, but it is worth it. It just goes to show that sometimes that one decision in your life can change the world. Personally, I cannot think of any one thing I have done to make my mark…but I hope to change that. But, I know that some of the people closest to me have changed the world for many people, and that is amazing!
I have been somewhat emotional today – not entirely sure why! I have received several emails today about sick children, and I guess I just read a little more into them now than I did when I read them the first time six months ago, so this really tugged at my heart-strings.
I am blabbering on now! Just please take a few minutes to read this…and then go out and do something that will make someone’s day today. It doesn’t take much – a phone call or a smile can turn the day around sometimes!!!
What would you do?....would you make the choice. Don't look for a punch line, there isn't one. Read it anyway. My question is: Would you have made the same choice?
At a fund raising dinner for a school that serves learning-disabled children, the father of one of the students delivered a speech that would never be forgotten by all who attended. After
extolling the school and its dedicated staff, he offered a question: "When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"
The audience was stilled by the query.
The father continued. "I believe, that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child."
Then he told the following story:
Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they'll let me play?” Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.
Shay's father approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in
to bat in the ninth inning."
Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. His father watched with a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth inning, Shay's team
scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.
At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.
Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all teammates. Everyone from the stands and both teams started yelling, "Shay, run to first! Run to first!” Never in his life had Shay ever run that far, but he made it to first
base. He scampered down the baseline, wide-eyed and startled.
Everyone yelled, "Run to second, run to second!” Catching his breath, Shay awkwardly ran towards second, gleaming, and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball ... the smallest person on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third baseman’s head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.
All were screaming, "Shay, Shay, Shay, all the Way Shay"
Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, "Run to third! Shay, run to third!"
As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, "Shay, run home! Run home!” Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team
"That day", said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and humanity into this world".
Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making his father so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!
AND NOW A LITTLE FOOTNOTE TO THIS STORY: We all send thousands of jokes through the e-mail without a second thought, but when it comes to sending messages about life choices, people hesitate. The crude, vulgar, and often obscene pass freely through cyberspace, but public discussion about decency is too often suppressed in our schools
If you're thinking about forwarding this message, chances are that you're probably sorting out the people in your address book who aren't the "appropriate" ones to receive this type of message. Well, the person who sent you this believes that we all can make a difference. We all have thousands of opportunities every single day to help realize the "natural order of things.” So many seemingly trivial interactions between two people present us with a choice: Do we pass along a little spark of love and humanity or do we pass up those
opportunities and leave the world a little bit colder in the process?
A wise man once said every society is judged by how it treats it's least fortunate amongst them.
You now have two choices:
May your day, be a Shay Day
Saturday, August 25, 2007
Charli had her first non-cancerous boo-boo!! (something to be excited about, huh?!). She was walking too fast and lost her balance, biffing her chin on the lego table! She is bruised and red, but no cuts - and she doesn't seem to be bothered by it. She is such a tough BIG (little ) girl!
She really is turning into such a big girl, and we couldn't be happier! She makes even the bad days great, and the sad times happy and exciting! Life with her couldn't be any better!!!
blue grass, what in the world?!!!
picking out only the prettiest rocks!
mommy's little musician!
mommy and me!
Saturday, August 18, 2007
When something like this happens I think we take extra time to realize how precious life is, how careless we can be with our own choices and how much we take for granted in ourselves and in others. It is terribly sad that it takes something like this to make us all slow down a bit. What is even more sad, is that our gratitude doesn't seem to last long.
There really is no graceful way to make the switch from talking about something so tragic to talking about something so precious.
Charli has been so cute the past few days - not necessarily cuter than normal...but I have been staying home this week (daycare is on vacation!!) so I have been able to see more of her again...which I LOVE! Enjoy the pictures...I enjoyed taking them!
mom says I look "SO CUTE" in this dress her friend sent me!
the cutest employee they'll ever get...ME!!!!!!!!! (but mommy says NO, I can't go to work with daddy!!!!)
vrrroom - vrroom, chasing Kasper!
WOW, look at the rain mom!!!
Tuesday, August 14, 2007
I HAVE CANCER...
I have cancer but cancer does not have me.
Cancer is not who I am.
It’s only a bend in the road that is my life’s journey…
An unexpected detour on my path.
It is a lesson in the schoolroom that is human existence.
So I will pause to rest and heal
And study the lesson
Before I move on to my life beyond cancer.
I will not give in to fear,
And I will not be discouraged by setbacks.
Setbacks are only opportunities to review the lesson.
I will not be ashamed of my scars.
My scars are brushstrokes in the masterpiece that is my life.
I will be thankful for the many blessings that cancer has brought into my life:
People I never would have known,
Love that I had never been still or quiet enough to witness,
Humility I needed,
Strength I thought I had lost,
Courage I never knew I had.
I will remember that I can still have fun
And that it’s okay – even healthy to be silly.
I will remember that to find the joy in rainbows I must endure the rain.
And I will remember always that
While I may have cancer
Cancer does not have me.
kisses from mommy!
grandma Deb and Uncle Dillon let's make something mom!!
Sunday, August 12, 2007
I can't believe I forgot to mention that Charli is walking! I have meant to do that many times, but time has gotten away from me. She is keeping herself busy, and changing so much day to day!
While we were eating lunch today (which she is eating very well, by the way!) we talked about all the things we are thankful for as a result of getting a good report at our last two appointments, and I want to share them with you! At the time, we just did what we had to do. Now looking back at everything we had to do to not only prepare for the trip, but also 'survive' the trip...it's exhausting!
WE ARE THANKFUL FOR:
-no more chemo
-no more regular port access
-no more daily shot to raise her counts (given by Chad and I)
-no more bactrium twice a day, three days a week (which Charli grew allergic to)
-no more trips to get her finger poked twice a week
-no more waiting for hours in the clinic, waiting to be admitted...up to five hours or MORE
-no more diaper changes every two hours, waking Charli every time she feel asleep
-no more fighting with Charli to eat while in the hospital
-no more pawning our dogs off at Twin River Vet to be kenneled while we are gone
-no more stray hairs falling out of Charli's head
-no more trips to Omaha with that "pit" in our stomach
-no more packing bags of toys, trying to keep Charli occupied
-no more keeping Charli at home, while everyone else gets to "go out and play"!
-no more "Friday outside only" visits to daycare
-no more staying home all day for Charli
I could go on for hours, talking about all the things we are thankful for, but I think you get it! Her cancer has given us many things to be thankful for too, we are a much closer family than we were before she got sick. We are also much more aware of germs and keeping everything clean for Charli as well as ourselves! I feel we are more understanding, and supportive than we may have been before. And, I pray we are more accepting...all of us.
I would like to mention, and give BIG thanks to my sister Rachelle. She and her family are taking part in the Lunch for Life campaign (link to the right). They are donating money each month, and the money goes to fund neroblastoma research. By doing this, the organization has created a tree for Charli, each time money is donated in her honor she gets an "ornament" to mark the donation. I think it is a great way to raise money for the cause, and an easy and affordable way to do this. So, thank you Rachelle, Shaun, Ryen, and Macey for donating in Charli's honor, it is one of the best gifts we have been given. I encourage anyone who would like to financial help the fight for childhood cancer, to give directly to a group like this. If you ever have any questions on the organization, please ask and I will do whatever I can to find out more about them. There are many great groups out there giving 100% of their funds to research.
I got this bubble machine for my birthday! Thank you Mia!!
I really like this corner of my bed!
fun...a NEW toy!!!??!!!
brrr, but it feels nice!
woosh...all clean now!!
I'm not ready to put it away :-(
umm, Dad...does mom know you have me up here?!
wait...I am NOT supposed to eat the spoon too?!!
I like my new chair, mommy and daddy gave it to me for my birthday!
Tuesday, August 07, 2007
A newborns conversation with God.
A baby asked God, "They tell me you are sending me to earth tomorrow,
but how am I going to live there being so small and helpless?"
God said, "Your angel will be waiting for you and will take care of you."
The child further inquired, "But tell me, here in heaven I don't have to do anything but sing
and smile to be happy."
"Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."
Again the child asked,
"And how am I going to be able to understand when people talk to Me if I don't know the language?"
"Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you to understand."
"And what am I going to do when I want to talk to you?"
"Your angel will place your hands together and will teach you how to pray."
"Who will protect me?"
"Your angel will defend you even if it means risking its life."
At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am To leave now, please tell me my angel's name."
"You will simply call her, "Mom."
Happy Birthday Daddy!!!! I love you!
Monday, August 06, 2007
Childhood cancer is the number one disease killer in children.
Neuroblastoma is the most common cancer in infancy.
Neuroblastoma is the most common extra cranial solid tumor cancer in children.
Every 16 hours a child with neuroblastoma dies.
There is no known cure for neuroblastoma.
Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.
Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy,asthma and AIDS combined.
There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%
Saturday, August 04, 2007
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.
I was tagged by my friend Michelle, who I met when Charli was diagnosed with NB. Her daughter, Isabella (link to her page located to the right) is a SURVIVOR!!!!
So lets see if I can think of 8 things that are interesting about myself.... =) This may be hard for me! hehehe
1. I used to show dairy cows in 4-H when I was younger!
2. I, like Michelle, thought about going into the nursing profession. First, when Chad had his accident in 1999 and then again after Charli was diagnosed. The dedication that these people give to our children, is amazing - and what a difference they have made in our life.
3. More than anything, I just want to help people. It really doesn't matter how or what I do to help, I just want to help.
4.I think my lucky number is 317. I was born at 3:17 and Chad and I started dating on 03-17!
5. I really wanted to teach Charli sign language, but with everything going on with her NB - it got tossed to the wayside.
5. I started to collect willowtree angels several years ago...they mean more to me now than ever! Now I collect any type of angel!!
7. I dated my husband for more than six years before we got married.
8. I was part of a music group in college that toured the United States in the summer, and the state of Nebraska in the spring. Being a part of this group took me to the Bahamas, Mexico, Disneyland, Disneyworld, Knotts Berry Farm, Universal Studios, and many-many other very neat places!!!
Instead of tagging 8 other people, I want those of you who are reading this to list a few facts about you! It will help me get to know the people who come to check in on Charli!
Wednesday, August 01, 2007
I am sorry for not posting earlier - it has been a long day.
We have received positive news from Omaha today. Charli's tumor has not grown, in fact it has recessed some. We do not know the exact percentage or size of the tumor, but we were told that it is in deed a smaller mass than six weeks ago. THANK GOD.
This means a few things for us. #1 - it means that there was no growth, which would have been a huge indicator that the mass was still active. #2 - the mass could have stayed the same, which would have left us in the same boat as six weeks ago...not knowing what to do next. #3 - I am going to try to believe that if it is decreasing in size that it will continue to do so, and be less and less active as time goes on.
Please know that we are SO excited and feel so blessed, it is hard to put into words. At the same time, we are still guarded because we will go back again in six weeks and again in three months. And, truly any appointment could turn our life around. I know that we can not dwell on that - and we won't...but it will always remain in our minds.
Thank you for all of your prayers. You must know that we believe in the power of prayer, and know that your love and support has helped our family in ways we will never know.
Our journey is not over, although it may seem to be. Charli will have at least one more surgery to have her port removed, possibly after her three month check. Today as we were getting ready to send Charli off for her CT, I realized that it doesn't get easier with time. I thought that after seeing Charli go through much worse, and knowing that she wouldn't be pain - today would be "seamless"...but it wasn't.
On a happier note - we feel so pleased and so blessed with our news today...we literally don't know what to do!!
Our life is forever changed, and so are the lives of many people around us. Through all of this I hope we have done something to raise awareness to not only neuroblastoma, but also childhood cancer. In the beginning I remember writing that we did not only want to survive NB, but become better people because of it. That is still my goal.
GOD BLESS ALL OF YOU, and THANK YOU FROM THE BOTTOM OF OUR HEARTS FOR ALL OF YOUR LOVE, SUPPORT, PRAYERS, and DEDICATION TO OUR FAMILY - and NEVER GIVING UP ON CHARLI.