My photo
What started out as a site to update on our daughter's cancer has thankfully grown into a site to update on our beautiful family of four. Enjoy our journey...

Sunday, September 30, 2007

hot off the press

We would like to take a quick second and thank a few people tonight! First of all I would like to thank those of you who have donated to the Lunch for Life project (there is a link to the right). Nearly $500 has been raised in Charli's name to go towards Neuroblastoma research. You can not imagine how great it makes us feel that people are doing this...so thank you from the bottom of our hearts!
Our second item of business is very exciting. My cousin and his wife, Ron & Jody Sherwood, did an amazing job spreading awareness last week. They submitted one of my blog entries to the "Maple Lake Messenger" in Minnesota. To make a long story short, Jody was hoping that they would write a small bit about childhood cancer and raise awareness in the area. The person she spoke with let her know that she would try, but that space is hard to get by. Cutting to the chase, somehow a miracle happened and they magically (by the hands of God!) had enough space to publish the entire "article". It took up nearly an entire page, talk about an amazing article. (it was the entry "How we got here" from a few weeks back) We received our copy of the paper over the weekend, and it is so moving to see our story out there. It means a lot to us that Ron & Jody thought to pass our story along, and the fact that they did it in such a huge way is even more amazing. I can't put into words what this means, so I should stop blabbering!
Enjoy the pictures!
playing in my tent from Landon!

oh rats, you found me!


mwah, kisses!


see spot run

So, how is your weekend?!

Friday night was not such a hot night for Charli, she did not sleep well AT ALL! She just didn't want to lay down by herself. A million things went through our mind. Saturday morning see seemed "fine" until the afternoon rolled around (of course, AFTER the clinic was closed). I thought that she might have an ear ache. Later in the afternoon Saturday we all ran a few errands. Charli fell asleep while driving so we took the "long" way home! I looked back at her a few blocks before we got home and noticed these spots on her arm, I asked Chad to take a look and she had them popping up on her legs too. Hmmm. Our first thought was chickenpox, but we didn't know where she would have picked them up. Just to be safe we called the oncology department in Omaha to see if they wanted us to do anything special. We were told that we needed to have the pediatrician take a look, if they were chickenpox we would probably need to head to Omaha to start a particular antibiotic - because she may not respond like a "typical" child to them.

So, we head to the ER in Columbus. The doctor said that they were not chickenpox, but she wasn't sure what they were. They had popped up in various places by now, on her ears, arms, legs, back, feet, etc. "It's a virus'" So, we came home. I am not trying to be cynical, but feels like a story we have played out before!

She has had a pretty good day so far, but does not want to lay down. 90% of me thinks it is attitude but the other 10% isn't convinced. Call me overprotective, I could care less...just tell me what is wrong with my baby. Just an example of the anxiety, frustration, and helplessness that our life will be bringing us because of the neuroblastoma.

Tuesday, September 25, 2007

the priceless laughter from a child

I was in the kitchen putting my supper away and this is what I heard going on in the living room.
What is better than this...nothing.

video

sing your heart out

*I like this song because it fits me this week! I have had a rough couple of days for one reason or another, and this song says it all. At the end of the day, all that matters, I have - the loves of my life under the same roof as me. I would sacrifice all that I have and all that I hope for, for the safety and happiness of Chad and Charli. As long as I remember that, all of the other stuff really doesn't matter.*



So Small
by: Carrie Underwood

I know it's hard on a rainy day
You wanna shut the world out and just be left alone
But don't run out on your faith

Cause sometimes that mountain you've been climbing
Is just a grain of sand
And what you've been out there searching for forever
Is in your hands
And when you figure out love is all that matters after all
It sure makes everything else seem so small

It's so easy to get lost inside
A problem that seems so big at the time
It's like a river that's so wide it swallows you whole
While you're sitting around thinking about what you can't change
And worrying about all the wrong things
Time's flying by, moving so fast
You better make it count cause you can't get it back

Sometimes that mountain you've been climbing
Is just a grain of sand
And what you've been out there searching for forever
Is in your hands
Oh, and when you figure out love is all that matters after all
It sure makes everything else seem so small

Sometimes that mountain you've been climbing
Is just a grain of sand
And what you've out there searching for forever
Is in your hands
And then you figure out love is all that matters after all
It sure makes everything else
Oh, it sure makes everything else seem so small




*I like this song because it makes me think of Charli! Obviously she is too young to do the things it talks about in the beginning of this song...but I still think it fits her! And it is true, before I met her I thought I was tough!*

Tough
by" Monty Criswell/Joe Leathers

She’s in the kitchen at the crack of dawn
Bacon’s on, coffee’s strong
Kids running wild, taking off their clothes
If she’s a nervous wreck, well it never shows
Takes one to football and one to dance
Hits the Y for aerobics class
Drops by the bank, stops at the store
Has on a smile when I walk through the door
The last to go to bed, she’ll be the first one up
And I thought I was tough

She’s strong, pushes on, can’t slow her down
She can take anything life dishes out
There was a time
Back before she was mine
When I thought I was tough

We sat there five years ago
The doctors let us know, the test showed
She’d have to fight to live, I broke down and cried
She held me and said it’s gonna be alright
She wore that wig to church
Pink ribbon pinned there on her shirt
No room for fear, full of faith
Hands held high singing Amazing Grace
Never once complained, refusing to give up
And I thought I was tough

She’s strong, pushes on, can’t slow her down
She can take anything life dishes out
There was a time
Back before she was mine
When I thought I was tough

She’s a gentle word, the sweetest kiss
A velvet touch against my skin
I’ve seen her cry, I’ve seen her break
But in my eyes, she’ll always be strong

There was a time
Back before she was mine
When I thought I was tough

Saturday, September 22, 2007

HUSKER NATION

GO BIG RED!
GO BIG RED!

Today Chad and I went to the husker game with my nephew Derek and Charli's "uncle" Aaron. I think we all had a good time! Nebraska won 41-40 against Ball State. Should have been a bigger point spread, but we'll take it! Here are a few picture from today! I will post a "Charli update" tomorrow!

Hope everyone is having a nice weekend!


The Preister family before the big game!
GO BIG RED!!

Derek with his favorite aunt (of the day!!)


sea of red!


we had great seats!

Tuesday, September 18, 2007

strike a pose

It has been awhile since I put a bunch of pictures up, and have taken a few hints that I need to do so! Charli has such a personality! She loves to give hugs and kisses - a lot! She loves to dance around and do the "spider-monkey" walk! Charli doesn't get any bottles anymore, which is a sad time for mom and dad....because we could have 10 more minutes with her at the end of each day during that time. But I imagine, when she gets older (much older) she will make 10 minutes each day for us again! We might just have to wait 20 years to get it!

She is so precious and beautiful, inside and out, it is amazing that she is ours...we are so blessed.



GO BIG RED - GO BIG RED!

mmmm, chocolate pudding!


whats blood pressure mean?!


round and round it goes!

well...how did that get there?!


my new PJ's!


this is my new face....oooo, I am so cute!

your the best Dr. Dad

"clinic" (cancer clinic) has so many more toys than home!

yes...clinic has dolls in wheelchairs - SAD, isn't?! But...the kids love it!


I didn't really care about this bear, but mom sure loved it!

night-night with Kasper!

I'm stylish!


Monday, September 17, 2007

Lunch for Life

We would like to say thank you to those family members who have taken the time and their money to donate to the Lunch for Life foundation. A special thanks to Rachelle, Amanda & Brad, Sandra, and Ron & Jody. Just as a reminder you can go to the site at http://www.lunchforlife.org/ and find Charli's tree by searching under "see the full list here", all the children are listed alphabetically. Each tree ornament represents $5.00. There has been $325.00 raised for neuroblastoma research in Charli's name...what a gift you have given. From the bottom of our hearts, thank you!

(facts taken from the Lunch for Life site.)
It’s more common than you think!
Childhood Cancer
One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year, of those, over 2300 will die. 1
Cancer is the leading cause of death from disease in children between the ages of 1 and 19. 1
In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday. The incidence of childhood cancer has increased every year for the last 25 years. 1
Neuroblastoma
Neuroblastoma is the most common cancer found in infants, almost double that of leukemia, and the most common solid tumor cancer in children, second only to brain tumors.1
There is no known cause or cure for neuroblastoma.1
Neuroblastoma accounts for 97% of the cancers of the Sympathetic Nervous System.1
Neuroblastoma accounts for 14% of all cancers in children younger than five years of age.

It’s deadlier than you know!
Childhood Cancer
Young patients often have a more advanced stage of cancer when first diagnosed. Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread at diagnosis.1
Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancer have proven so resistant to treatment that, in spite of research, a cure is illusive.1
Neuroblastoma
Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. The average age at diagnosis is two years old.1
Neuroblastoma is an aggressive solid tumor cancer that strikes mainly young children and has less than a 30% chance of survival when evidence at diagnosis shows that the disease has spread.1

And, it doesnt have the research funding to get any better!
Childhood Cancer
The largest children’s oncology group in North America which supports the clinical and biological research at over 200 participating institutions and treats about 90% of the children with received less than half of its requested budget from the federal government this year.2
The National Cancer Institute’s (NCI) federal budget for 2003 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% .2
Neuroblastoma
Neuroblastoma accounts for 7-10% of all childhood cancers and well over 15% of the deaths; and yet neuroblastoma is only designated to receive 5% of the research dollars from a national pediatric cancer fundraising initiative.3
For every dollar received through federal grants and private donations by this very organization less than $.03 goes towards funding neuroblastoma research grants, awards, and fellowships.3

Right now,this second,somewhere in America,there are 7 children fighting for their lives who won't live through the day.

We can do better!

1 Source: American Cancer Society and National Cancer Institute SEER Report
2 Source: National Childhood Cancer Foundation Annual Report
3 Source: CureSearch Case Statement and Funding Plan, Fiscal 2004

Sunday, September 16, 2007

READ READ READ!!

Just a real quick note to everyone to let you know that an article about Charli has been written by the Columbus Telegram. It made the front page with a picture even!! We are very excited for the awareness this will bring!

You will be able to view it until at least tomorrow (noon-ish!) at www.columbustelegram.com There is a link to her story from there.

Thank you for checking in on us, and reading her story! Please pass this on (via email, text message, phone call, whatever!!) as much as possible to help raise awareness. We are very excited that the newspaper took action for this month and chose to dedicate space to our daughter.

Now...go read!

Thursday, September 13, 2007

nothing new to report

Sorry for not posting earlier. We didn't get any news yesterday! The one test we were going to have done didn't work out! But, the doctor did do a physical exam on Charli - feeling her abdomen and back to make sure she could not feel anything and that there was no pain for Charli. She did great yesterday! We will go back in six weeks for the CT scan. Once we get a good report from that we will go every 3 months for awhile.

Charli had such a good time spending the day with us! We let her walk around the stores like a big girl, and she had a ball!! When we got home it was like we brought home a different baby! She was a (good) handful!!

Here is a cute picture of Charli having the time of her life in the hotel last weekend...she cleaned out TWO boxes of Kleenex!!




what do you mean "no-no"?

these MUST be a new toy, they are so easy to get to!

mommy just had to add this 'cuz I look so darn cute!

Tuesday, September 11, 2007

How did we get here?

In honor of Childhood Cancer Awareness month I have written a (lengthy, at best) story about how we got to where we are now. I will start by letting you know that it is long, it is honest, and it may be hard to read. I do not necessarily want to talk about what I have written, so if you bring it up and I avoid it - please understand. There are painfully honest facts that I have written that I have never admitted to anyone else, let alone myself. I ask that you DO take the time to read this story. Please copy and paste it to everyone in your address book. The more people who know Charli's story, the more who know about childhood cancer..and that, is the ONLY way we can make a difference.

Childhood Cancer Awareness Month

September is Childhood Cancer Awareness month. During this time, we are making it our duty to raise awareness to these horrid diseases that our children have to fight. We would like to preface this with saying that we are not looking for sympathy, however we are trying to get your attention to see what is actually going on. This is a world that many know nothing about.

In July of 2006 our daughter, Charli Ann Preister, was born. She was beautiful…had gorgeous eyes and defined eyebrows at birth! She was perfect, and came home a few days later. We enjoyed loving her and sharing her with our family. She lived with our two dogs who adored her.

When she was five months old, we noticed that she didn’t really want to roll over, and it seemed to make her down right mad! We thought nothing of this. We knew that we didn’t give her enough tummy time, and thought that she was just lazy to be honest!

Shortly before turning 7 months old, she started to “change” personality, or so we thought. I can remember it like it was yesterday – February 23rd she just acted different. When I picked her up from daycare she was crying, we all thought she must have been tired. This behavior continued for a few days. We tried everything. We fed her more, we fed her less, we tried to have her nap more, nap less. It got to the point were she wouldn’t eat and didn’t want to move at all. We thought she had an ear infection, we took her in “she looks great” we were told. We thought maybe she broke a bone somehow, we took her in “she looks fine” we heard. Finally, we were grasping at straws. We thought she had a twisted bowel, strep throat, pulled muscles, etc. We KNEW something was wrong, but we could not find it. After three weeks of being in and out of the doctors office, nights in the hospital, endless hours of crying (both Charli and us!) we took it a step further and took Charli to Children’s Hospital in Omaha, NE. We thought we had lost our bright and happy baby.

The morning we took Charli down, she was actually having a great day, it was March 14, 2007. Within a few minutes of being in the clinic, we were told that something was wrong with her, and that we would not be going home. I felt terrible, why did I wait so long to bring her here? We were told it was either a tumor or some sort, or spinal infection. After intensive blood work, we were able to rule out the infection. Later that day an MRI was done, showing a mass in Charli’s abdomen. We were told that it was “just a mass” and that they had an excellent neurosurgeon that would remove it and everything would be fine. It was more of a pain in the butt, than anything else. PRAISE THE LORD! We were so sad that she would need to have surgery in that delicate area, but we knew something was wrong, and thank God, it wasn’t worse. A few hours later, we got a call that the initial report was incorrect; it was most likely a cancerous tumor. We were told that our daughter had cancer, and it was probably neuroblastoma.

That evening we met with a team of doctors to discuss what would need to be done. Charli’s tumor had wrapped around her spine, and had even started to grow into her spinal canal. On March 16, Charli had her first surgery, the biopsy. We had to wait a week for the final results to come in. On March 22, we received the call. Yes, Charli does have neuroblastoma, stage III, intermediate risk. We were told that chemo would be starting the next day.

We have a great oncology team in Omaha and although we had a rocky start, we couldn’t ask for better care.

Charli had her port put in and bone marrows checked on March 23. The next day, she had her first round of chemo. This was tough weekend for Chad, Charli and I. We were learning about the relentless disease and what could be ahead of us - hearing horror stories, and absolute miracles. We finally came home the next week.

If I am going to continue with this “raw” honesty, I will admit something, something that I just recently admitted to my own husband. I am ashamed to say this, but I will say it anyway. There was a time in the beginning that I honestly did not know what would come of all of this. Reading the statistics and mortality rate, I wasn’t sure what would come of Charli and her diagnosis. I distinctly remember thinking that if I bought things for her to use at a later time, it meant that she would be around long enough to use those things. So I bought clothes that were way to big for her, scrap booking stickers for events that would happen down the road, etc. The one thing I remember buying was a dress that says “One day I will be a fairy princess” I thought, ‘if I buy this…she will make it to “one day”’. I know those are horrible thoughts to have, but it is the brutal truth. Imagine, not knowing if your child will make it through something, knowing that there is a possibility that she won’t – and you can’t do anything about it. Ugh, I am ashamed for thinking it, and embarrassed to admit it – but in order for you to understand…you need to know.

We had to take Charli in to get her blood work done twice a week, at our local hospital. They were great with her. To be honest, she was great for them too! I think she only cried once when they did her blood work…and she was poked probably close to 20 times overall in that office. She is so strong. Chad and I also had to give Charli a shot each night for about 7-12 days after each treatment. It wasn’t fun to give the shot, but it was almost an out of body experience. To be honest, the entire ordeal has been that way. We did what we needed to do.

Every three weeks we loaded up the car and headed to Omaha for the weekend, filling bags of toys, clothes, and magazines for mom and dad. We were fortunate that the doctors let us do Charli’s treatment over the weekends. This allowed Chad to work as much as possible, and allowed my adjusted work schedule to be unaffected. We would leave early Friday morning and get back Sunday evening. Once we were home, we were home until our next trip to Omaha. We were not able to take Charli out and about between treatments for fear of her getting sick while her counts were low because of the chemo. However, each Friday afternoon we did try to visit her friends at daycare while they were playing outside. This was our saving grace, really the only time she got to see other kids, and it made her so happy. However, our family was great about coming down to visit us when they were able.

The worst treatment for Charli was the second cycle of chemo. She got sick and was not herself. The week after being released from treatment, we were down in Omaha again with high temperatures. Charli received her first and only blood transfusion. After each treatment, we could see improvement. She started to want to eat again after the first treatment, but after the second, she lost the desire again. She started eating really well several weeks ago, and now she is a great eater! She lost her hair, although some people still say that she didn’t! (trust me, she did!). At the time, we felt like she was doing great. But, to look back at pictures of her during treatment – you can see it in her eyes…she was almost hallow. She looked pale, sick, and just not “Charli”. It literally breaks my heart to look at those pictures; even now, that she is doing so well. She was a different baby, and I know it was from the chemo – although that is what made her better, it made her ‘worse’ at the same time.

We were told that she would require four treatments, but would most likely need eight total. After four treatments, we were scheduled for scans (MRI) the weekend of what would have been her fifth treatment. Once getting down there, the Dr. decided that in order to be 100% of what our next move should be, we should schedule Charli for a CT scan. After doing this, we consulted with the Dr. about the results. We found out that her tumor shrunk considerably. However, the tumor was still located on her spin. At this point we did not know if it was active or not, and surgery was not an option. Chad and I had the grueling decision of what to do next. We could continue treatment hoping that it would shrink the tumor and/or pull it off her spine; maybe even enough to surgically remove the remaining tumor. However this option did not guarantee anything, it was possible that with treatment the tumor would stay the same. Or, we could do nothing. Just sit and wait? This didn’t sound like a very good option to us, to do nothing. But, after talking it over we decided that the risks of unnecessary chemo were far greater than the risks of closely monitoring her for change. As it stands we go see the doctor every six weeks for scans and/or check ups. So far, we have been beyond blessed with success. Having said that, neuroblastoma is a disease than can literally strike at anytime – and I am not sure we will ever feel safe again.

So here we are. September 2007, Childhood Cancer Awareness month. Charli is walking, crawling, rolling, falling, playing, eating, drinking, dancing, loving, and doing everything a child her age should be doing. She is amazing, and truly my hero. Even when she didn’t feel good, her desire to WANT to feel good overpowered her sickness.

I know this was a long story, but I NEED you to understand this. This isn’t just “a child” that has cancer…it is OUR child, OUR baby, OUR daughter, OUR Charli. This is someone’s granddaughter, niece, cousin, neighbor, friend, and family. This is Charli, and she has neuroblastoma. Honestly, if something is not done for our children who have cancer, our future is literally going to die before our eyes. Childhood cancer is the number one killer of children, greater than all other childhood illnesses COMBINED. And yet, there is practically no funding for it. If we can raise the awareness that it deserves, this will change. Once this happens, research can be funded and a cure found.

There are a ton of breath-taking statistics out there about the lack of funding, the enormous about of children who will be diagnosed with cancer this year, and the number of children who will die because of cancer this year.

This community we have become a part of, Childhood Cancer warriors, has not had a new drug introduced for more than 20 years. Yet, there are new medicines for the common cold all the time.

On average 10 children will earn the wings, loose their battle, to cancer EACH DAY. Do you know ten children? Makes it more real, doesn’t it?

After Charli was diagnosed, I became a part of an online group for Neuroblastoma parents. It has been a wealth of knowledge, support, and help. However, each week I hear a heartbreaking story of a NB child loosing their life to this wicked disease. Can you imagine that?

Childhood cancer doesn’t care where you live, what your name is, how much money you have, or what has happened in your past. Childhood cancer does not care what color your skin is, your social status, your long-term plans, or how important you are.

I believe there is a reason that Charli has had to take this battle on. I am not 100% sure why God gave her this bridge to cross, but I know that He did it knowing that we would work as hard as we can to make a difference. This is why it is important that you not only read this…but you understand it.

Thank you for reading this story in its entirety. We cannot fully put into words what it is like to have a child with cancer, but we try to let you in on a part of our life that is not only difficult and painful, but also incredibly important for others to know about.

quick update

We take Charli back to Omaha tomorrow. This is for a basic check-up and we don't expect to get any new news. We will go back in six weeks for more scans, that was the last plan we have been told! We will see if anything changes after tomorrow.

Sunday, September 09, 2007

Such a big weekend!

What a weekend! We traveled to Waterloo, IA for our newest nephew's baptism. Aunt Amanda and Uncle Brad rode with us too! We were a little nervous for the trip, this was the first trip we have made as a family since she was three months old!! But, Charli was great. If there was a word for "so much better than great-great" - that is what she was!! We left around bedtime Friday night in hopes that she would sleep most of the way there. She feel asleep about an hour after we left and didn't really make a fuss at all. She did make a few peeps, but she was still sleeping! A little over 1/2 way there we stopped for gas and to let Charli stretch her legs. She feel right back asleep. She did so great this trip! She took good naps at her Aunt Jen's house, ate great and drank great! We took off around 10:00am this morning and she did even better on the way home!!!! It was a great trip overall, and I am so happy it went well!!

Some of you know that Chad had surgery on Tuesday. He was able to come home later that day, against the doctors orders...but either way, he came home! This is the same type of surgery that he had done before Christmas and before Charli was born. He also had a similar surgery before our wedding, I think this is the 5th one in less than 3 years. He is doing well, gets very tired very easily and sick pretty quickly - but that isn't that new to him. He is going into work (against the dr. advice) for a few hours a day - not doing too much...but still more that he is supposed to. So, if you see him working at your place - send him home!!! I won't go into details on the surgery, so if you want to know just ask. But, the surgery does leave him with a fairly large open wound on his abdomen that needs to be taken care of three times a day. He is taking medications around the clock for pain and to avoid possible complications. It isn't fun, but it isn't new either...it is just part of it. Either way, thought some of you would like an update on him as well!!

I will post more pictures of the weekend later this week - I am tired and ready to rest now!

PS. I just want to brag one more time about how amazing Charli did this weekend, I am so proud of her.
We were truly blessed with a perfect baby :-)




playing with Uncle Brad


such a great picture of Charli and Grandpa Bob! (taken by Aunt Amanda!!)


taking the stairs!

the preister girls (and Conner!!!!)

PS. Thank you Amanda for the pictures!!!!!

Friday, September 07, 2007

Childhood Cancer Awareness

Please take the time to read this and pass it along.

NEW BRACELETS ARE IN!!



We just wanted to let you know that we have received additional bracelets to honor and support Charli! These new bracelets say, “expect miracles” and have her website listed on the inside. I know that many of you wrote me about the first batch (that said, “live with purpose”) and they went so quickly that many of you were not able to get one. If you are interested in one of these bracelets, leave a comment or send me an email. They come in four colors (pink, green, blue, and teal).

THANK YOU FOR YOUR SUPPORT!

Wednesday, September 05, 2007

time = precious

"Enjoy the little things, for one day you may look back and realize they were the big things." - Robert Brault


I realize it has been a long time since I made a post. Time just gets away from me, and it is hard to catch up sometimes!! For those of you who have asked about Keira, thank you. Her tests came back with positive news! They dr. said her tumor as shrunk, not a lot...but it IS smaller! PRAISE THE LORD! Remember, you can visit her site at anytime, there is a link located to the right.

September is Childhood Cancer Awareness month. This is a very important subject to me, and since you are still checking in on Charli, I hope it is important to you too. I would like all of you who still read this to tell 5 new people about Charli's story, and ask them to do the same...and so on. I know that this is not "Charli awareness month" but sometimes when you can match a face and a story with an issue people will remember and do something about it. Now, I have no idea how many people visit this site, but let's just say there are 100 of us who log on on a regular basis. If we all donated $5 to the lunch for life program...that is $500. That adds up to be something substantial. Can you even buy a value meal for $5??!!! I am not asking for your money, just trying to show what a difference many people can make when they band together for a common goal. And, it doesn't take much. Now...if all 100 people donated $5 and asked their five friends to do the same...think how much money could be raised - not only for Neuroblastoma, but for Childhood Cancer in general. I want, no, I need to make a difference in this new world I have become a part of. I will not let Charli's illness come and go without making a difference somehow. Our family is dedicated to making this better for those who are yet to be diagnosed. I know we have a lot of support from friends and family, and for that we are forever thankful. Can you imagine if you told someone, who told someone, who told someone who knew someone like Oprah! She had a segment on Childhood Cancer, people became aware - wanted to make a difference, donations start pouring in, research is funding, drugs are discovered, and cancer is cured. All...because YOU told someone, did you know you were so powerful and influential. THANK YOU!!!!!! :-D


"When you have cancer, it is like you join a club. Suddenly, you're different. And, the people who reach out to you are those who have either experienced cancer themselves or have friends or family with cancer."

"It's like you have two lives, the life before cancer and the life after. Nothing goes back to normal again. You look at life differently, your priorities change, your friends change."

"When you go through treatment you get daily support. When it is done, you are left all alone"

"Cancer is a life altering experience"



These are quotes taken from cancer fighters and survivors. I can remember saying some very similar things on this blog months ago. The past several weeks I have felt like I didn't feel comfortable enough saying something that I really meant or what I truly felt - but then I decided that if you are still reading this you probably won't judge me for the truth. So from now on, I am going to try to get back to my honest self on here. Although it can be difficult because it is hard to look at people when you know that they know your inner most fears - not many people can say that.

Charli is getting cuter than ever! That is about all I can say to sum it up. Charli = adorable!

I love chocolate pudding!

I can feed myself, such a big girl!


"snap the head and pose"!

beautiful eyes!

time to brush our teeth!

scrub-scrub-scrub!

pick YOUR favorite toy!

which ducky is the best prize!


Mommy says I am "precious"!

no, grandpa mommy won't let me go on a ride!

mmmm, good!