Friday, October 26, 2007
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!!!!
Thursday, October 25, 2007
running to see daddy when he gets home...it makes everyone happy!!
let me in - let me in!
look at this awesome leaf mommy!
HEY...smile everyone! I am going to get good news tomorrow, and WHAT is better than that?!
Wednesday, October 24, 2007
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!
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!
Tuesday, October 23, 2007
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!
Thursday, October 18, 2007
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.
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.
Wednesday, October 17, 2007
*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.
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
Be aware of legislation and write our representatives when appropriate. (CureSearch and Candlelighters, both below, often alert us when issues are at hand.)
If you want to know something about the financial situation of a charity, go to:
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
Work cooperatively with and be aware of all childhood cancer interest groups. The next section includes a list of childhood cancer 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 email@example.com
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:
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."
Tuesday, October 16, 2007
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!
on my way out for today, brr!I had so much fun with these balloons today!
(red eyes today!) I played SO nice!
"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!!
Monday, October 15, 2007
I don't know how to say this, so it comes out right. So please just try to understand where I am coming from!
We have been so blessed by kind deeds along the way. Please know that NO act of kindness and/or awareness has gone unnoticed. However, it is when someone goes above and beyond your expectations that it seen as truly amazing. I hope no one takes offense to that, and you can understand what I mean.
My sister, Rachelle, is a teacher at Broken Bow Public Schools in Broken Bow, NE. I know that when all of this happened to Charli she had a very rough time with it. She and her husband, Shaun, have two adorable little girls, Ryen (4) and Macey (2). Macey was only 18 months old when Charli was diagnosed...so I think it hit a little close to home. PLUS, I am the baby of the family...so everyone always feels more sorry for the baby :-)! ANYWAY... I feel that Rachelle had a great support system in her friends and family out in "Bow", and what I am going to show you will help all of you to see it to. I remember that shortly after Charli was diagnosed Rachelle and Shaun came to visit us in the hospital with a cute little bear in tote. If I remember the story correctly, one of her students brought her this bear because of Charli. Actually, I think Rachelle was in class with that girl when she got "the news" (I may be wrong, seems like a lifetime ago!). What I am trying to say is that they have been great to her, and I am still amazed in what they have done.
So many people have since forgotten about what has gone on. They see/know that Charli does not seem to be battling the cancer daily anymore and just assume that things are good, and go along their life. But, it seems the people of Broken Bow (and many-many others) have not forgotten! In fact, they are becoming witness to the disease and making sure others hear about it too. AMAZING.
I have gotten several emails from "Amy", to be honest...I have no idea who she is, but she has been great and a huge part of our life the past few weeks. Amy is a co-worker of Rachelle's. Amy wanted their school to do something to help raise funds and awareness to NB. Please keep in mind that I have no idea who Amy is, and I have never met her. She is doing this as a friend of my sisters, and a great human being (and I am sure there are others who are helping, but I don't know their names!). She has contacted Lunch for Life, and was able to get them to print informational packets regarding NB with Charli's picture and a short story that I wrote about her and our journey. She is going to work on a project for their school and community, and I believe students are involved in this as well.
Does anyone else see the greatness in this? Much like a few weeks ago when my cousin contacted the newspaper and they printed the article in their paper (in Minnesota). You people are doing GREAT things for this disease, and you don't even realize it! And, when I thank you from the deepest part of my heart you act like you have done nothing. You are nothing short of heros in my book.
So, below is the write up that will appear in the Broken Bow newsletter. It gives me the chills each time I think about what this "stranger" is doing for our family, and the difference she is making...and I couldn't point her out of a lineup if my life depended on it.
Thank you to ALL OF YOU who are going above and beyond our wildest expectations. Charli will never fully understand everything that is going on, and the lives you effect and save may never be able to thank you...and my thank you doesn't seem to be enough. Sadly, another child will be diagnosed with neuroblastoma - BUT, it is because of the funds and awareness that YOU ALL are raising, that they will be able to live and tell their story to their kids some day. I hope you truly understand just how awesomely amazing that is...and how wonderful you are.
Class Service Project
by SESC Preschool and CHOICE Program Students
Who is this little pumpkin?
(photo taken by KB photography in Columbus, NE)
This is Charli Ann Preister, niece of our own BBPS teacher, Rachelle Haines. Charli was diagnosed with Neuroblastoma in March of 2007.
What is Neuroblastoma? NEUROBLASTMA IS CANCER. It is a particularly deadly cancer that targets infants and toddlers. Childhood cancer claims thousands of young lives annually and is the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined. Each year more brave parents are forced to fight a losing battle for their children, not just against cancer, but also against the lack of public awareness needed for research and funding to find a cure. They cannot win this fight on their own. They need champions who will carry their message, who will raise awareness and funds for research, and who will remind them that people do care.
The SESC Preschool and CHOICE Program students are teaming up to help fight this horrible disease that affects a member of our very own staff. In November, these two groups of students will be promoting a “Lunch for Life” Lunch Bag Drive. They will be distributing lunch bags to all staff members and any students who are interested in participating. They ask that everyone donate one day’s lunch money to help fight this disease.
Lunch for Life was founded by parents of Neuroblastoma patients as an effort to raise both awareness of the disease and the money to fund promising research studies on it. Their idea is a simple one: ask friends, acquaintances, and coworkers to donate a day’s lunch money to help fund research for a cure of this deadly disease. A small donation of $5 to $10 per person, something that people could readily afford, would make a big difference if enough people were involved. To learn more about “Lunch for Life” visit the website http://www.lunchforlife.org/.
If you want to get to know Charli better, please visit her website http://www.brenda-chad.blogspot.com/.
Thursday, October 11, 2007
We are a go for surgery on Tuesday, probably around 7:30am at the hospital. Generally they do them at the surgery center (at the eye clinic) but for one reason or another Charli's will be done at the hospital. We expect her to do great, and have wonderfully beautiful eyes by the end of next week!! (her eyes ARE beautiful, but they will be even better!!)
And, in typical Preister fashion - many things must be going on in our house at once in order for us to fully function! Kasper (the white dog) seem to be pretty sick, or something. Our vet thinks that he has had one (or more) seizures. Unless they continue on a very regular basis, it doesn't sound like there is anything they can do for him, as far as medication goes. Hopefully this was a one time thing, with no long term effects. Poor guy.
I don't even know what to say after that...so I will go into the pictures now!
mommy & me!
silly mommy...that tickles!!
too many toys to choose from!
mooching off of daddy!
playing with grandma!
Monday, October 08, 2007
1. It tells you that everything you do will always leave a Mark.
2. You can always correct the mistake you make.
3. The important thing in life is what you are from inside and not from out side.
4. In life you will undergo painful sharpening which will make you better in whatever you do.
5. Finally, to be the best you can be, you must allow yourself to be held and guided by the hand that holds you.
Sunday, October 07, 2007
Saturday morning we met our friends Eric, Courtney, and Landon (link to his page to the right) at the zoo in Omaha. We went through the desert dome, ate lunch, and then went through he lied jungle! After the jungle we started our walk around the rest of the zoo! We saw monkeys, tigers, lions, bears (oh my), birds, fish, penguins...you name it we saw it (except the elephant, that was too far away!). After about three hours Charli finally conked out, so we headed for the hotel. Once we got there and had a snack we all went for a swim in the pool! After supper we all went down for bed! The kids did SO great together, played so nice...it was amazing to see them play together after all this time! This morning we got up and had breakfast together and let the kids play around a little bit before taking off. We all had a great time, and hope to do it again soon! Charli did great :-)
Here are some pictures to enjoy...I have received several emails saying "get those pictures up!!".(they are very much out of order...sorry!!)
Charli in her fall jacket from Grandma...a little big yet!
playing around after getting home!
running off some energy before bed...the halls are SO much fun!
finding fun toys with friends! what do you think is in there Landon...let's check it out!
mommy & me in the pool!
let me climb out!
they played SO great together!
their first meeting! Are YOU that boy I have heard all about!
our family in the zoo!
we had so much fun!!
Charli tried to chase this bird, he ran away!
wow, the life of a fish - swim this way, swim that way!