i'm sorry!

I am having computer problems at home again...so I am not sure when I will be able to update the site with pictures from Halloween! I am so sorry! I tolk it into the "doctor" this afternoon...so hopefully I will know something soon!

In the meantime, I will atleast let you know what she was! So, if you want to wait for pictures - here is a spoiler alert - don't keep reading if you don't want to know!!
Charli was a piggy for Halloween this year! She was adorable, but I will save my stories for when I can update pictures!!

Who is NED?

Just wanted to make a "quick" post and let you know that we did get good news today! Charli's tumor did not shrink, but it did not grow either - so "no change" is good news for us.

This is actually the first visit we have had with our doctor where the phrase no evidence of disease (NED) was mentioned...so we left feeling good about that. We realize that, that doesn't mean we are in the free and clear, but it sure makes sleeping at night a bit easier we hope. I felt like I was going to fall over with relief when I heard "the scans are unchanged", what a relief to hear - you can't even imagine.

Charli had a rough day - so I hope she gets a good nights rest and can start new tomorrow...poor thing :-(

I will post more later this weekend, but for now just wanted you to all know that God has blessed us again, and we are eternally thankful. Oh, and Charli was able to get her flu shot today! We should be able to start vaccinating in a few weeks to get her all caught up! PRAISE THE LORD! Life is great =-)

PS. Charli had a GREAT time at her Halloween party! I won't be able to post pictures of that until after Halloween because we are keeping her costume a surprise from those who get to see her that night!!! SORRY!!!!

never underestimate friendship

Charli and I had a great welcome home from work & daycare today...GOOD LUCK SIGNS from our friends the McMeekins!!!!! I will post pictures of the sign, and close-ups so you can read what they had to say. It was such a sweet gesture, and made us feel so special!

Charli got to play in the leaves again today, she really enjoys being outside. Cute pictures from that too!

what's up there?!!

running to see daddy when he gets home...it makes everyone happy!!

let me in - let me in!

look at this awesome leaf mommy!

Charli's eyes seem to be doing better - but we aren't' sure! She has been on antibiotic eye drops since Monday, we will see how she is doing after the weekend. If they work, that will be the end of it! If they don't work...well, then it won't be the end :-(

We are heading to Omaha tomorrow for Charli's CT scans. She will have her scan at 10:30, and should be back with us by 11:00. After that, we don't really know what the future holds. We really do need to talk to the doctor, but unfortunately that doesn't mean much! There is a chance that her doctor won't be in - or will be busy when we are ready. So, I don't really know what to expect for tomorrow. I do know that we have several questions we would like answered, but we aren't sure if we will get them answered in person or over the phone.

If we make it back in time (cross your fingers for us!!), Charli has her daycare Halloween party at 4:00. She will get dressed up and take her treats for the other kids! I know she doesn't' understand, but we do...and she is so cute when she is having fun playing with the kids at daycare. That place (daycare) is such an amazing place - we have been so blessed to have found them. I think about it - and realize how much God must have had a hand in our finding them to watch our child. We couldn't ask for a better place to take Charli, or better people to help raise and form Charli's life. Tomorrow is going to be fun!

Oh - this weekend our country church is having a celebration and I will be singing Sunday.

I may...or may not have news to post tomorrow night. Feel free to send me an email if you are wondering about anything...I know the wait can be hard on your end too. GOD BLESS everyone, tomorrow is going to be such an amazing day - I can feel it in my bones!

Oh...and PS. Elizabeth, Charli's friend from daycare, cut her hair yesterday and donated it to locks of love! She is awesome, and looks so cute! Her hair is almost identical to the color Charli's hair was before she lost it, so I am SURE that if Charli needed a wig - she would have gotten her hair :-)

HEY...smile everyone! I am going to get good news tomorrow, and WHAT is better than that?!

live with purpose

Charli and I played in the leaves yesterday after we got home, she had a lot of fun!

Gosh!! I feel like I have so much to say, it has been awhile since I have posted a real “Charli” update. I don’t really know where to start, so forgive me if I am all over the place!

This weekend Charli did a lot of playing! Friday night her cousins Ryen & Macey came over. They were a ball to watch. Ryen (4) was such a big sister to Charli, and Charli even did things that Ryen did…even if it was “naughty”…like “love tapping” Macey. NO-NO!!! In fact, later this weekend I told Ryen that she is like a big sister to Charli, and to remember anything good or bad she does Charli will want to do too! She looked at me like, wow—too much responsibility! They all got on their little tractors (or whatever they could find) and drove all over the house, it was fun to watch! They were all very good to each other.

how cute...Macey is doing the same thing as Chad - adorable!

Saturday Charli had another play date with Paydon, he is the same age as Charli. We went to Aaron & Heather’s house for supper and the kids just did their own thing. They were shy at first (Charli was), but they started to play together, and then they just kind of went off on their own. When we left, they even gave kisses. It was adorable! I told Paydon he was going to have sweet dreams about Charli that night, and he giggled so cute!

smoochy-smoochy

Sunday we went out to the farm, so Charli got to play with the girls again AND her cousin Colton! It was a fun day…it really showed all of us that our parents house is not big enough to hold our ever-growing family anymore!

While we were there, I went out to help Chad “dig” and let Rachelle and the girls handle Charli for a bit. When I came in Ryen told me that she had something very important to tell me. While I was gone she discovered Charli’s port (where she get her medicine through). She said, “I don’t want Charil to have cancer ever again.” That little girl breaks my heart! I know she is only 4, but she really seems to “get it” when it comes to Charli being sick. I gave her a hug, and said I don’t either. It is sad to think that a 4-year-old little girl even knows what “cancer” is…and to know that someone she loves was sick from it. She (Ryen) has a baby-doll “Austin” that is sick with cancer. I can’t remember if I told this story or not…but I am going to tell it again! To make a long story short Ryen told my mom (grandma!) that her baby (Austin) was very sick, he had cancer. No one could told Austin but mommy. He couldn’t go outside, and he couldn’t play with other kids, but, it made him feel better if he could go on a walk and be sung to. She also said that Austin had two more treatments before he would be ok again. He went to a big building in Omaha to get better. Isn’t that a precious story? To think that a 4-year old can grasp the illness leaves no excuse for adults who “don’t get it”. I know that certain details will always be in Ryen’s memory…like not being able to see Charli when they came back to visit. It brings tears to my eyes to think that ANY child has to understand that…it is hard for me to understand it now.

Moving on, to something less sad – Charli!! She is getting to be so hilarious! She is turning into a great listener! She is very good at putting things away, getting things, and understands so many things now! She crosses her arms, swings them back and forth when she is “bored”, raises her arm when you ask “where’s Charli”, and puts her hands up when you ask her a question as if to say “I don’t know!” She is the love of my life, and I can’t imagine how I could love her more – but each day I love her more than the day before! I invite everyone to come visit sometime soon so you can see her for yourself – she can do things to warm your heart like nothing I have ever seen before. She is a miracle in so many way.

Now I finally understand, “they grow up too fast”.

I feel like I could go on for days about her – but I better stop…I’ve written more than I planned already! I will write more about her appointment Friday. We got back to Omaha for her “routine” CT scan. We expect nothing but good news. No news is good news, and that is the plan! Also…remember that Keira goes in on that same day – keep her in prayer.

Please remember to check out the other children located to the right, and the Lunch for Life site as well! AND- click on the link to give free mammograms, it is listed above (below Charli’s picture)…it is a very important cause!

Thanks for loving our daughter, and sharing in her life!

I found this pictures...it is of Chad & Charli sleeping after one of Charli's tests...how precious is this?! (old but timeless)

I made these "ghosts" for a fundraiser at work...they both sold!

*temporary problems!*

I am so sorry for not posting an update for so long. I am having computer problems but promise to update pictures and stories as soon as I can! I have lots to tell about from this weekend!

Also...(just in case it doesn't get fixed in time) please keep Charli in your prayers for Friday. On the 26th we take her back to Omaha for scans. We are confident that we will have good news, but the nagging fear that there is a chance for less than good news is haunting. Keira also goes in on this day...please remember her.

Hope to be back in touch soon!

it's everywhere...

Grey's Anatomy is dealing with childhood cancer...WATCH IT.

* they are showing the cheif's neice who battled cancer at the age of 14, who has since had it return...for the second time. *

“Calling all Angels”

Okay everyone…I have a challenge for you! Actually, it is more of an invitation. There is a group in Omaha, NE called “Angels Among Us”, and they truly are angels. They are a group of women who raise funds to help families affected by childhood cancer in Nebraska. They offer this help by giving financial assistance to families, by paying their bills directly.

Sadly, funds are not always available each month for those that they would like to help. But, there is a way that we can help with this! On November 17, 2007 they are having a fundraising meal in Omaha, called “Calling All Angels”, it is an evening event from 5:00-10:00ish. At this event, they will have raffles, silent auction items, as well as a live auction to end the night. This is a great way to donate locally, and have fun while doing it! I know so many people have talked to me about donating to a particular cause, but have not decided where to do it yet. Although, this money does not go to research and cure funding, it does matter JUST AS MUCH.

Parents with children battling cancer sacrifice a lot. By having this tremendous group available, it helps ease the pain and anxiety about loosing work, commuting for treatment, and still having to put groceries on the table, pay insurance, pay you mortgage, or even by putting safe tires on your vehicle. They have helped families in a variety of ways, in addition to those listed above. You can visit their site at http://www.myangelsamongus.org/ (there is also a link to the right) to learn more about all the great things they do.

Tickets are $100 each. If you are interested in going, please let me know. We have been blessed with great family members that have already committed to going, so there will be a “Charli cheering section”! We would love to add to the group! Please let me know. So far, I believe we have 11 attendees! There will be pictures of local children affected by childhood cancer, as well as artwork provided by these children. I feel it will be a very moving and motivating event, bringing much of life into perspective.

If you are not able to attend, but would still like to help this well deserving group, let me know. There are several ways you can donate to their foundation.

SAVE THE BOOBS!!!!!!!!!

A favor to ask, it only takes a minute....

Please tell ten friends to tell ten today! The Breast Cancer site is having trouble getting enough people to click on their site daily to meet their quota of donating at least one free mammogram a day to an underprivileged woman. It takes less than a minute to go to their site and click on "donating a mammogram" for free (pink window in the middle). This doesn't cost you a thing. Their corporate sponsors/advertisers use the number of daily visits to donate mammograms in exchange for advertising. Here's the web site! Pass it along to people you know.

(click on the picture, to be directed to the site)

Activism/Advocacy

Watching your child undergo treatment for childhood cancer is not easy

*this is stolen from http://www.acor.org/ped-onc/activism/action.html*

What can we do?
As the editor of these pages, I realize that each parent will be inclined or able to help to a different degree and with different abilities. Whatever anyone can contribute in whatever manner will help, and remember, sometimes just sharing your experiences with other people will help, by making another person aware that childhood cancer does happen and is a real problem.
Awareness.
The public needs to be aware that childhood cancer occurs in 1 in every 330 children by the age of 19, and that childhood cancer has not yet been "cured". Awareness will hopefully lead to increased private donations as well as increased governmental funding of childhood cancer research. For your own information and if you need this information to include in the literature you are preparing for an awareness event or fundraiser, I've gathered childhood cancer statistics (and links to references) on a ped-onc page:
Childhood cancer statistics on this web site
Legislation.
Be aware of legislation and write our representatives when appropriate. (CureSearch and Candlelighters, both below, often alert us when issues are at hand.)
Donations.
If you want to know something about the financial situation of a charity, go to:
Charity Navigator
Guide Star
Causes of cancer.
Work with etiologists to determine the environmental causes of childhood cancer. Take part in and encourage surveys and childhood cancer registries. Recognize clusters of childhood cancer that should be investigated.
Causes of childhood cancer on this web site
Environmental groups on this web site
Early diagnosis. Most childhood cancers will be more easily treated and cured if it is diagnosed early. But early diagnosis is not always the case. When I first signed on to the Ped Onc listserve, I was amazed by the diagnosis stories as new members signed on and introduced themselves. I realized that my own son's swift diagnosis was rare. I read story after story of cancer, misdiagnosed and instead attributed to a common childhood complaint or behavioral problem. These parents were told by their physicians: "She loses her balance because she has a sinus infection"; "He's pale because it's winter"; "If she's irritable and not eating you must improve your parenting"; "It's just an ear infection, I'll write a prescription for antibiotics." Instead of receiving treatment, these children were sent home while the cancer in their bodies divided and grew. By the time they were correctly diagnosed, often the children were desperately ill and rushed to the hospital. The treatments began even though it was difficult for their bodies to tolerate the essential chemotherapy demanded by their illnesses.

I was so affected by these stories that I gathered the writings of many parents into the "Signs of Childhood Cancer". If enough interest is generated, these "signs" could be produced as a small booklet. A short list of the signs is available as a printed business cards. Also in the works is a poster which would be distributed to pediatricians' offices.
Signs of Childhood Cancer on this web site

Cooperation.
Work cooperatively with and be aware of all childhood cancer interest groups. The next section includes a list of childhood cancer organizations.

Awareness Organizations
There is a plethora of organizations, small and large, that work to raise awareness for childhood cancer and to advocate for children who have or had cancer. Most of these organizations also help cancer families in one way or another. CureSearch, the fund-raising arm of the Children's Oncology Group (COG), is probably the largest such organization in the US. Candlelighters is another large and influential awareness group; it is founded and run by parents of children who have or had cancer.
Alliance for Childhood Cancer - announced Spring 2002 - Web Site.
Candlelighters (US, National) and Canadian Candlelighters. These organizations have so much to offer that I cannot list it all here. Please, visit their web sites.
CureSearch (The fundraising/awareness arm of COG). NCCF has planned activities in September, the month designated for childhood cancer awareness, for the past several years (2003 note).
CureSearch Advocacy page
Reach The Day wristbands
St. Baldrick's Day. Begun in 2000, St. Baldrick's Day is just before St. Patrick's Day. On St. Baldrick's Day, volunteers shave their heads to raise money for childhood cancer. (2003 note.)
The next link takes you to my grand listing of all organizations that are concerned with childhood cancer. Listed are professional societies, as well as support (Candlelighters) and fundraising organizations.
childhood cancer organizations on this web site
Children's Oncology Group, Patient Advocacy Committee
The Patient Advocacy Committee was instituted by COG to include the perspectives and input of childhood cancer survivors and families in the design and implementation of cooperative group clinical trials.
Missy LayfieldCOG-PAC, Chair cog-pac@cfu.net
Who they are, what they do, how to contact them
A Plethora of Childhood Cancer Awareness Projects
Miss America works to raise awareness for childhood cancer. (2004 note)
Childhood Cancer Awareness Stamp Letter Writing Campaign. Help get a US Postal Stamp for Childhood Cancer. Sign a petition at the ThePetition site. Also on the Candlelighters site.
Cooking for a Cause. Cookbook with proceeds going to childhood cancer concerns.
One Voice USA - fundraising and awareness.
Gold Ribbons for childhood cancer awareness.
Deborah Pryce's web site sometimes has information on childhood cancer awareness activities.
The Children's Cause - "dedicated to accelerating the discovery and access to innovative, safer, and more effective treatments for childhood cancer through education and advocacy."
The International Childhood Cancer Quilt Project.
Begun as an idea in online mailing lists, the Childhood Cancer Quilt grew quite large and was presented to the world at The March in September 1998. As of 2003, the quilt is still growing, although I do not know who (if anyone) is in charge of a "national" quilt. See below for information:
http://home.comcast.net/~childhoodcancerquilt/index.html
License Plates
Virginia Childhood Cancer Awareness
Alabama Curing Childhood Cancer
Ashley's Bracelets from Cancer Warriors: Help Ashley Stomp Sarcoma in 2005! by purchasing Ashley's Bracelet. Each bracelet purchase goes towards Sarcoma Research.
Cookbook from Dylan's Dream "This Cookbook is filled with over 340 delicious recipes for you to use and share for years to come as well as unforgettable dedications located below each recipe to honor someone who has had or currently under going cancer treatment; followed by the name and state of the person who submitting the recipe."

"my green eyed girl"

Charli did great today! She seems to be unfazed by getting up early, not eating, and having surgery today :-) She didn't get tired, crabby, or anything like that! In fact, she turned into superbaby I think! Charli was so happy and full of energy today, it was so fun to get to spend the day with her! Chad and I both stayed home with her today, and had the best time ever!

Charli got a big bouquet of balloons delivered to her today from her Aunt Jennifer, Uncle Justin, and cousin Conner. She had a lot of fun playing with them while they sat on the floor! She played so great today!

She picked up her four John Deere tractors (that her dad personally gave her out of his "collection"). She them put them (right side up, it took a few times!!) in her wheelbarrow, wheeled them over to the kitchen floor, and took them out and drove them on the hardwood floors! It was adorable! It seems like she grew up so much overnight last night! Charli also downed her sippy cup of apple juice in 3 sips, ate great...it was just a great overall day!

Enjoy the pictures!

time to get out in the fields with my green!

on my way out for today, brr!

I had so much fun with these balloons today!

(red eyes today!) I played SO nice!

gulp-gulp!

heading out the door to the hospital! I got to wear my PJ's!!

playing in the waterfall in the waiting room!

"I'm getting out of here!!" (Charli trying to run away before surgery!)

I LOVE my books! (and I think daddy does too!)

today was John Deere day! I played with everything John Deere!!