Hi everyone! This is the same video - just without having to go somewhere else to find it! I have been told that some of you have had problems opening the other one, and thought this might help!
Enjoy :-)
- The Preister's
- 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...
Thursday, June 07, 2007
Wednesday, June 06, 2007
growing up so fast!
growing fast!
click on Charli's picture to view a video slideshow of her! We hope you enjoy it...keep sending in what you're thankful for!
Tuesday, June 05, 2007
say something!
I know there are lots of you out there who read this and NEVER say anything back (yes you!) and I want to hear from you! You can post anonymously so no one will ever know who said (myself included!).
So - I would like each of you to post something "small" that you are thankful for. It doesn't have to be anything major, but it can be! Anything you are thankful for, in my opinion, is major...but it can be on any scale.
I just want to show everyone on here how many things we have to be thankful for! Please just take a second to do this...I think it will make all of us feel good!!!
I will start...
Today I am thankful for the playful and innocent way Charli crawls away from me when she should be napping, and I walk into her room saying "I'm gonna get you!". I LOVE THAT LITTLE GIRL!!! She is my world!
okay, YOUR turn!
So - I would like each of you to post something "small" that you are thankful for. It doesn't have to be anything major, but it can be! Anything you are thankful for, in my opinion, is major...but it can be on any scale.
I just want to show everyone on here how many things we have to be thankful for! Please just take a second to do this...I think it will make all of us feel good!!!
I will start...
Today I am thankful for the playful and innocent way Charli crawls away from me when she should be napping, and I walk into her room saying "I'm gonna get you!". I LOVE THAT LITTLE GIRL!!! She is my world!
okay, YOUR turn!
Monday, June 04, 2007
not want I wanted - :-(
ugh, just got the call from the clinic. I didn't hear what I was hoping to hear, but at the end of the day, it doesn't really matter!
Charli's scan is set for NEXT Friday - which means we have to wait nearly two weeks before we will know anything...ugh. All in all, it doesn't' make a huge difference - we will get the same results either way, but I want to know NOW what is going on inside my baby's body.
We have the MRI scan scheduled for Friday and later that evening they will start chemo. This also means that the weekend will be long - because we won't get out until later in the day Sunday - in the past we have been blessed to be out early in the day (because treatment has started early Friday). :-(
So - I am a bit disappointed and sad right now, but it won't effect the results we get - and THAT is what matters.
Thanks to all of you who have called and sent notes today to check in on us...all of your love and support is appreciated - always.
Charli's scan is set for NEXT Friday - which means we have to wait nearly two weeks before we will know anything...ugh. All in all, it doesn't' make a huge difference - we will get the same results either way, but I want to know NOW what is going on inside my baby's body.
We have the MRI scan scheduled for Friday and later that evening they will start chemo. This also means that the weekend will be long - because we won't get out until later in the day Sunday - in the past we have been blessed to be out early in the day (because treatment has started early Friday). :-(
So - I am a bit disappointed and sad right now, but it won't effect the results we get - and THAT is what matters.
Thanks to all of you who have called and sent notes today to check in on us...all of your love and support is appreciated - always.
PLEASE SIGN
PLEASE VISIT THIS SITE, SIGN THIS PETITON, FORWARD THIS INFORMATION, and GET THE WORD OUT THERE!!
WE NEED TO MAKE A DIFFERENCE NOW.....
Dear Friends and Families,
Children with cancer continue to be treated primarily with drugs that were developed 20-30 years ago. Scientifically, researchers have reached an era where new types of 'smart drug's can be developed to treat cancer at a genetic level. These new types of cancer treatments have started to be developed for adult cancers and have showed great promise for cure. Children with cancer need these types of new drugs to give them Hope for a complete cure.
Current debates in both the House and Senate could eliminate such future development of targeted drugs for children with cancer and other rare diseases. In order to protect biotech development of such essential biologic products, Candlelighters is encouraging families, friends, and co-workers to sign the following petition located at: www.candlelighters.org/petition.stm
A Petition to Congress to Preserve Innovation and Support H.R. 1956, the "Patient Protection and Innovative Biologic Medicines Act of 2007
* Because the survival rate of childhood cancer has not changed in the last decade.
* Because treatment for children with cancer has not changed significantly in recent years and we are eagerly awaiting a major breakthrough.
* Because current toxic therapies are not a solution for children with cancer as they cause lifelong health problems including second cancers.
* Because biologic products are among the most promising and effective medicines for the treatment of serious and life-threatening diseases, like childhood cancer.
* Because it is vital that we spur innovation for pharmaceutical companies to invest in the development of these life-saving drugs.
As supporters of the development of new targeted therapies for children and adolescents with cancer, we petition Congress to support H.R. 1956, the "Patient Protection and Innovative Biologic Medicines Act of 2007;" legislation that creates a pathway for "follow-on" biologics but establishes an appropriate balance between reducing cost, ensuring safety and providing incentives for innovation.
Please forward to other friends, families, and colleagues and ask them to sign the petition as well!
Thank you!
Candlelighters Childhood Cancer Foundation
WE NEED TO MAKE A DIFFERENCE NOW.....
Dear Friends and Families,
Children with cancer continue to be treated primarily with drugs that were developed 20-30 years ago. Scientifically, researchers have reached an era where new types of 'smart drug's can be developed to treat cancer at a genetic level. These new types of cancer treatments have started to be developed for adult cancers and have showed great promise for cure. Children with cancer need these types of new drugs to give them Hope for a complete cure.
Current debates in both the House and Senate could eliminate such future development of targeted drugs for children with cancer and other rare diseases. In order to protect biotech development of such essential biologic products, Candlelighters is encouraging families, friends, and co-workers to sign the following petition located at: www.candlelighters.org/petition.stm
A Petition to Congress to Preserve Innovation and Support H.R. 1956, the "Patient Protection and Innovative Biologic Medicines Act of 2007
* Because the survival rate of childhood cancer has not changed in the last decade.
* Because treatment for children with cancer has not changed significantly in recent years and we are eagerly awaiting a major breakthrough.
* Because current toxic therapies are not a solution for children with cancer as they cause lifelong health problems including second cancers.
* Because biologic products are among the most promising and effective medicines for the treatment of serious and life-threatening diseases, like childhood cancer.
* Because it is vital that we spur innovation for pharmaceutical companies to invest in the development of these life-saving drugs.
As supporters of the development of new targeted therapies for children and adolescents with cancer, we petition Congress to support H.R. 1956, the "Patient Protection and Innovative Biologic Medicines Act of 2007;" legislation that creates a pathway for "follow-on" biologics but establishes an appropriate balance between reducing cost, ensuring safety and providing incentives for innovation.
Please forward to other friends, families, and colleagues and ask them to sign the petition as well!
Thank you!
Candlelighters Childhood Cancer Foundation
Making memories
Happy Monday everyone! We don’t have a lot to report yet this morning, but I hope to have some information later today about when Charli’s MRI will be, and how her counts are doing. They seem to be a bit lower than they were going into the weekend. What I don’t know is if they are still dropping, or on their way back up. Oh, the waiting can be hard.
We had a pretty nice weekend. Friday evening some friends stopped over – Jesse and Nicole with their (nearly) two year old son, he was so fun to watch play, and so good at putting the toys back. Saturday we didn’t do too much, but we did go for a nice afternoon drive and stopped at Cracker’s to Caviar for a great coffee and smoothie (and cookie)! I recommend everyone going there for their morning/noon/afternoon drink :-)
Sunday I got to sleep in while Charli and Daddy started their morning. We went to Lindsay Sunday afternoon to see Aunt Amanda and Uncle Brad…Charli hadn’t been there for a very long time, I am sure Sassy (their cat) missed her! Actually, their cat “attacked” Charli’s head! Chad and I laughed, but Amanda had a mini-heart attack when it happened. After that, the cat was pretty unimpressed with Charli though! Brad made a great “late lunch / early dinner” and Charli even took a nap there! Then they took us out to see some baby pheasants and a fainting goat! Charli liked both of them!
When we got home grandma and grandpa Borg stopped by on their way home from the zoo! They went with my sister and her family to the Omaha Zoo, and I think they had a great time. I haven’t talked to my 4 year old niece Ryen, but I am pretty sure Grandpa had more fun than anyone else!!!
I will post an update when I hear from the doctors later today – hopefully we will have a date for her scans by then!
We had a pretty nice weekend. Friday evening some friends stopped over – Jesse and Nicole with their (nearly) two year old son, he was so fun to watch play, and so good at putting the toys back. Saturday we didn’t do too much, but we did go for a nice afternoon drive and stopped at Cracker’s to Caviar for a great coffee and smoothie (and cookie)! I recommend everyone going there for their morning/noon/afternoon drink :-)
Sunday I got to sleep in while Charli and Daddy started their morning. We went to Lindsay Sunday afternoon to see Aunt Amanda and Uncle Brad…Charli hadn’t been there for a very long time, I am sure Sassy (their cat) missed her! Actually, their cat “attacked” Charli’s head! Chad and I laughed, but Amanda had a mini-heart attack when it happened. After that, the cat was pretty unimpressed with Charli though! Brad made a great “late lunch / early dinner” and Charli even took a nap there! Then they took us out to see some baby pheasants and a fainting goat! Charli liked both of them!
When we got home grandma and grandpa Borg stopped by on their way home from the zoo! They went with my sister and her family to the Omaha Zoo, and I think they had a great time. I haven’t talked to my 4 year old niece Ryen, but I am pretty sure Grandpa had more fun than anyone else!!!
I will post an update when I hear from the doctors later today – hopefully we will have a date for her scans by then!
Uncle Brad's baby bird!
ahh, this goat likes me!
our new family, daddy said we could get a goat too!
daddy says I am his favorite toy!
all dressed up to go to Aunt Amanda's and Uncle Brad's house!
move over Wynston I am hungry too!!
Aunt Amanda tried to give me ice cream, but I didn't like it :-(
another shot with me and my new friend
grandpa, will you read me my new book?!
grandma & grandpa Borg on one of their weekly visits!!
my new monkey from grandpa & grandma preister!
i like to PLAY with my sippy cup, and lay on my pillow!
CHEESY!!!!!
(I have a hair sticking up too, I look like Alfalfa!)
Friday, June 01, 2007
speak the truth....
The following is a taken from another NB parent. Some of you may not want to read it all, it does give an honest look into what all parents feel when faced with neuroblastoma. However, there is a reason for the phrase "the truth hurts"...
If you want to enjoy your weekend, then please do not read any more until Monday. Below is a post I have taken it upon myself to copy and paste without permission. However, I have felt so strongly attached to Penelope and her fight that I feel not sharing this would dishonor the struggle all of these kids are forced to contend with.
Eventually, it ends for all of us.
Sometimes it is more difficult than others, sometimes you are spared the pain and suffering, sometimes you are given a reprieve from a lifetime of horrific memories, and sometimes you are not given that peace.
This is NB. This is what we all live in fear of. This is why we want a cure. This is why funds that are given for kids should be spent on kids. This is why I don't sleep. This is why I have nightmares. This is why I meditate. This is why I'll never be the same. This is why I have to believe there is a cure for Will. This is why I love people that I have never met, have never spoken to, and will never meet. This is why my heart breaks. This is why I created this website to keep from going insane. This is why I can never give up on Will.
JournalFriday, May 18, 2007 1:49 PM CDT
Things We need to remember:
Penelope hasn't opened her eyes more all day
Penelope must be blind in her left eye as it is purple and shut
Penelope hasn't moved an inch on her own in four days
Penelope has not eaten or had anything to drink in five days
Penelope has lost the ability to use her left hand and her right hand is starting to fail too
Penelope has a lesion coming out of her skull and keeps complaining of dizziness
Penelope's legs have been hurting all the time
Penelope's left leg is believed to be fractured and she is believed to have internal bleeding in her leg
Penelope's abdomen is very distended and making her very uncomfortable
Penelope can no longer suck her thumb or hold her "Bear Bear"
Penelope can barely find the strength to utter a word and we desperately try to decipher the sounds coming out of her mouth
Penelope is on more methadone than can be believed
Penelope still nods when asked if she want to be told stories
Penelope has told everyone she wants them to be happy
Penelope told Daddy "I am not crying, so you don't cry" (I am trying but it is so hard)Penelope is told "We love you" by her mommy and daddy about 1,000 times a day
Penelope has not complained ONCE about what is happening to her
Penelope, when told that there is a place called heaven that waits for her, told me "I know. I will go when I am ready"
If you want to enjoy your weekend, then please do not read any more until Monday. Below is a post I have taken it upon myself to copy and paste without permission. However, I have felt so strongly attached to Penelope and her fight that I feel not sharing this would dishonor the struggle all of these kids are forced to contend with.
Eventually, it ends for all of us.
Sometimes it is more difficult than others, sometimes you are spared the pain and suffering, sometimes you are given a reprieve from a lifetime of horrific memories, and sometimes you are not given that peace.
This is NB. This is what we all live in fear of. This is why we want a cure. This is why funds that are given for kids should be spent on kids. This is why I don't sleep. This is why I have nightmares. This is why I meditate. This is why I'll never be the same. This is why I have to believe there is a cure for Will. This is why I love people that I have never met, have never spoken to, and will never meet. This is why my heart breaks. This is why I created this website to keep from going insane. This is why I can never give up on Will.
JournalFriday, May 18, 2007 1:49 PM CDT
Things We need to remember:
Penelope hasn't opened her eyes more all day
Penelope must be blind in her left eye as it is purple and shut
Penelope hasn't moved an inch on her own in four days
Penelope has not eaten or had anything to drink in five days
Penelope has lost the ability to use her left hand and her right hand is starting to fail too
Penelope has a lesion coming out of her skull and keeps complaining of dizziness
Penelope's legs have been hurting all the time
Penelope's left leg is believed to be fractured and she is believed to have internal bleeding in her leg
Penelope's abdomen is very distended and making her very uncomfortable
Penelope can no longer suck her thumb or hold her "Bear Bear"
Penelope can barely find the strength to utter a word and we desperately try to decipher the sounds coming out of her mouth
Penelope is on more methadone than can be believed
Penelope still nods when asked if she want to be told stories
Penelope has told everyone she wants them to be happy
Penelope told Daddy "I am not crying, so you don't cry" (I am trying but it is so hard)Penelope is told "We love you" by her mommy and daddy about 1,000 times a day
Penelope has not complained ONCE about what is happening to her
Penelope, when told that there is a place called heaven that waits for her, told me "I know. I will go when I am ready"
more meaningful words...
“Where there is a great love, there are always miracles” - Willa Cather
“Draw near to God and He will draw near to you!” - James 4:8
“When you reach the end of your rope, tie a knot in it and hang on.” - Thomas Jefferson
“Remember that very little is needed to make a happy life.” - Marcus Aurelius
“Nothing is worth more than this day.” - Goethe
“Most folks are about as happy as they make up their minds tom be.” - Abraham Lincoln
“All that I am or hope to be I owe to my mother.” - Abraham Lincoln
“I am only one, but still I am one. I cannot do everything but still I can do something; I will not refuse to do the something that I can do.” - Helen Keller
“It’s not whether you get knocked down; it’s whether you get up again.” - Vince Lomardi
“Draw near to God and He will draw near to you!” - James 4:8
“When you reach the end of your rope, tie a knot in it and hang on.” - Thomas Jefferson
“Remember that very little is needed to make a happy life.” - Marcus Aurelius
“Nothing is worth more than this day.” - Goethe
“Most folks are about as happy as they make up their minds tom be.” - Abraham Lincoln
“All that I am or hope to be I owe to my mother.” - Abraham Lincoln
“I am only one, but still I am one. I cannot do everything but still I can do something; I will not refuse to do the something that I can do.” - Helen Keller
“It’s not whether you get knocked down; it’s whether you get up again.” - Vince Lomardi
simple things
I think I will probably make another post later today with more quotes, but I wanted to keep this post separate.
Today is a GOOD day. Granted it is only 9:30 in the morning, but you can't have a great day without starting it out right, right?!
Charli woke up (before I was ready) and ate really well. We went to have her blood work done and it looks good (to me!), we came home and she ate some cereal; put her down for a nap and she drank all of her bottle! WOW! That may seem simple to most, but it is a good sign for me! She hasn't been eating like herself this week, and it warms my heart to see some progress...I was in tears as I fed her cereal this morning, she was opening her mouth for it! THANK GOD!
Lately I have been realizing all the simple in life that make the world go around. Babies crying, babies laughing, holding hands, smiles from a friend as they walk out the door after a nice visit, surprise emails from friends and strangers, notes in the mail, posters on the door, phone calls from family, phone calls from friends just to chat, and so much more. And I have also realized that the things that seemed so big to me 4 months ago – aren’t important at all…
Someone said to me in an email yesterday “…there are good days and bad days, but I try to think of them as good days and bad moments…” what a way to live your life, thank you Danielle.
Today is a GOOD day. Granted it is only 9:30 in the morning, but you can't have a great day without starting it out right, right?!
Charli woke up (before I was ready) and ate really well. We went to have her blood work done and it looks good (to me!), we came home and she ate some cereal; put her down for a nap and she drank all of her bottle! WOW! That may seem simple to most, but it is a good sign for me! She hasn't been eating like herself this week, and it warms my heart to see some progress...I was in tears as I fed her cereal this morning, she was opening her mouth for it! THANK GOD!
Lately I have been realizing all the simple in life that make the world go around. Babies crying, babies laughing, holding hands, smiles from a friend as they walk out the door after a nice visit, surprise emails from friends and strangers, notes in the mail, posters on the door, phone calls from family, phone calls from friends just to chat, and so much more. And I have also realized that the things that seemed so big to me 4 months ago – aren’t important at all…
Someone said to me in an email yesterday “…there are good days and bad days, but I try to think of them as good days and bad moments…” what a way to live your life, thank you Danielle.
wonderful people...
I received this comment, and some of you may have read it - but I wanted to post it, because it really touched me. Please don't get me wrong, I enjoy and treasure each and every comment that is left, but this verse is moving to me.
hi, i'm a former HS bible student of mr. bowman's (keira's dad) and i saw a comment you had left and followed it here. charli is a very beautiful little girl and the Lord is watching out for her, and now i'm going to be praying for her as well. i have always loved the verse exodus 14:14 "the Lord will fight for you, you need only to be still". although it refers to an army preparing to do battle, charli's situation is really no different is it? she is small and young, yet battling for her life, and so strong. never lose hope.
claire
Claire - thank you for following Charli and keeping her in your prayers. You are so young, and so strong...thank you - you will do amazing things in your life.
hi, i'm a former HS bible student of mr. bowman's (keira's dad) and i saw a comment you had left and followed it here. charli is a very beautiful little girl and the Lord is watching out for her, and now i'm going to be praying for her as well. i have always loved the verse exodus 14:14 "the Lord will fight for you, you need only to be still". although it refers to an army preparing to do battle, charli's situation is really no different is it? she is small and young, yet battling for her life, and so strong. never lose hope.
claire
Claire - thank you for following Charli and keeping her in your prayers. You are so young, and so strong...thank you - you will do amazing things in your life.
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