I just wanted to let you know that we have about 10-15 XL shirts left from the benefit last weekend if anyone is interested in them. I believe we also have a XXXL, and 1 youth medium. Send me a note if you are interested. We also have a few bracelets left too.
It has been amazing to see someone walking down the streets in Columbus wearing one of Charli's shirts. Then, to realize we don't know them is even more amazing!
THANK YOU FOR SUPPORTING THE CAUSE!!!!!!!!!
- 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...
Friday, May 04, 2007
patience....
Well, we are in Omaha today to start round three of chemo. We got into the cancer clinic at 9:00am this morning...we were checked into a room after 2:00pm. What did we do for 5 hours? I have no idea! We sat, we laid, we played, we ate, we walked, we cried, we laughed...and that was just Chad and I!! Teasing :-) Charli did great!
She is currently receiving her first drug of the weekend.
Has anyone given it any thought how you keep a baby (who is learning how to roll over and trying to learn to crawl) content in a crib while she is covered in IV lines?! Well, incase you haven’t…it isn’t easy! Charli will roll and toss and turn and get caught in her line…and/or eat it even more now! What a good problem to have.
Knock on wood…she is eating great. Usually when we get to the hospital, she stops eating. Well…today she has eaten great!
Charli will have her MRI in about 4 weeks. At that time we will know more about it. There are a few things we could find out at that time.
a) the tumor has not responded to treatment, and a new method of treatment would need to be examined.
b) The tumor has shrunk enough that it can be removed by surgery at this time
c) The tumor has shrunk, but not enough to remove with surgery at this time, and 4 more cycles will be needed. (this is the anticipated result)
We are excited for this day to get here for several reasons!
All for now I guess. I just want to thank all of you for visiting her site and learning about this disease. I think that some of you will do great things with your knowledge, and I thank you for it. Also, thank you for all of you who continue to show us your love and support through cards, calls, emails, notes, visits, etc. Each act of kindness is just as special and unexpected as the next…and all are truly appreciated.
We hope all of you have a great weekend!
PS…happy late birthday to Vicki & Rachelle!!
She is currently receiving her first drug of the weekend.
Has anyone given it any thought how you keep a baby (who is learning how to roll over and trying to learn to crawl) content in a crib while she is covered in IV lines?! Well, incase you haven’t…it isn’t easy! Charli will roll and toss and turn and get caught in her line…and/or eat it even more now! What a good problem to have.
Knock on wood…she is eating great. Usually when we get to the hospital, she stops eating. Well…today she has eaten great!
Charli will have her MRI in about 4 weeks. At that time we will know more about it. There are a few things we could find out at that time.
a) the tumor has not responded to treatment, and a new method of treatment would need to be examined.
b) The tumor has shrunk enough that it can be removed by surgery at this time
c) The tumor has shrunk, but not enough to remove with surgery at this time, and 4 more cycles will be needed. (this is the anticipated result)
We are excited for this day to get here for several reasons!
All for now I guess. I just want to thank all of you for visiting her site and learning about this disease. I think that some of you will do great things with your knowledge, and I thank you for it. Also, thank you for all of you who continue to show us your love and support through cards, calls, emails, notes, visits, etc. Each act of kindness is just as special and unexpected as the next…and all are truly appreciated.
We hope all of you have a great weekend!
PS…happy late birthday to Vicki & Rachelle!!
Wednesday, May 02, 2007
let's be refreshed....
I found this information from other various NB sites. I just thought I would post some information about the illness for those of you who just started to read about Charli. Awareness is key in fighting this...education = knowledge = power.
"Nobody made a greater mistake than he who did nothing because he could only do a little."
Edmund Burke
February 4th is World Cancer Day and September is National Childhood Cancer Awareness Month. While these dates bring short attention to the cause it is the everyday work year round that brings the real progress.
Cure For Neuroblastoma
"Hope and inspiration in the smallest packages"
What is Neuroblastoma?
Neuroblastoma <http://www.christithomas.com/links.html> (NB) is a rare cancer of the nervous system striking about 600 children in the U.S. per year. Neuroblastoma is a solid tumor cancer that begins in the nerve tissue of the neck, chest, abdomen, or pelvis but usually originates in the abdomen in the tissue of the adrenal gland. It's a form of cancer that occurs in infants and children, is rarely found in children older than 10 years. There are many angles of causes being researched but the main idea is that cells of this cancer usually resemble very primitive developing nerve cells found in an embryo or fetus.
There is very little known about why neuroblastoma occurs, or about what factors increase the risk for occurrence and currently there is no known cure.
Seventeen years ago this was 100% fatal. While treatment is improving, the statistics are still sobering. In as many as 7 of 10 cases, the disease is not diagnosed until it has already spread (metastasized) meaning treatment is more intensive and has to start quicker. Prognosis for neuroblastoma is dependent on age, stage of disease, and the molecular biologic and cytogenetic characteristics of the tumor children have the best chance if they are diagnosed by age five (nearly (90% of cases are), and if it is in early stage (four stages in total). This is still a very tricky disease.
Over 50% of patients who go into remission will relapse and the chances of survival are even slimmer.
Facts About Neuroblastoma
Although cure rates are steadily increasing, 35% of children will die. Neuroblastoma tumors are the second most common type of solid tumor found in children (second only to brain tumors).The incidence rate for all sympathetic nervous system cancers was 9.5 per million children.
Neuroblastoma accounts for 14% of all cancers in children younger than five years of age. 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.
Facts About Childhood Cancer
Cancer remains the number one disease killer of children; more than genetic anomalies, diabetes, cystic fibrosis, and AIDS combined. Each year in the U.S., approximately 12,500 children and adolescents are diagnosed with cancer (around 35 a day).One in 330 children will develop cancer by age 20.Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region. Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children. The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents). Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. 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 to distant sites at the time of diagnosis). When cancer strikes children, it behaves differently from cancer in adults. Children frequently have a more advanced stage of cancer when they are first diagnosed.
"Nobody made a greater mistake than he who did nothing because he could only do a little."
Edmund Burke
February 4th is World Cancer Day and September is National Childhood Cancer Awareness Month. While these dates bring short attention to the cause it is the everyday work year round that brings the real progress.
Cure For Neuroblastoma
"Hope and inspiration in the smallest packages"
What is Neuroblastoma?
Neuroblastoma <http://www.christithomas.com/links.html> (NB) is a rare cancer of the nervous system striking about 600 children in the U.S. per year. Neuroblastoma is a solid tumor cancer that begins in the nerve tissue of the neck, chest, abdomen, or pelvis but usually originates in the abdomen in the tissue of the adrenal gland. It's a form of cancer that occurs in infants and children, is rarely found in children older than 10 years. There are many angles of causes being researched but the main idea is that cells of this cancer usually resemble very primitive developing nerve cells found in an embryo or fetus.
There is very little known about why neuroblastoma occurs, or about what factors increase the risk for occurrence and currently there is no known cure.
Seventeen years ago this was 100% fatal. While treatment is improving, the statistics are still sobering. In as many as 7 of 10 cases, the disease is not diagnosed until it has already spread (metastasized) meaning treatment is more intensive and has to start quicker. Prognosis for neuroblastoma is dependent on age, stage of disease, and the molecular biologic and cytogenetic characteristics of the tumor children have the best chance if they are diagnosed by age five (nearly (90% of cases are), and if it is in early stage (four stages in total). This is still a very tricky disease.
Over 50% of patients who go into remission will relapse and the chances of survival are even slimmer.
Facts About Neuroblastoma
Although cure rates are steadily increasing, 35% of children will die. Neuroblastoma tumors are the second most common type of solid tumor found in children (second only to brain tumors).The incidence rate for all sympathetic nervous system cancers was 9.5 per million children.
Neuroblastoma accounts for 14% of all cancers in children younger than five years of age. 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.
Facts About Childhood Cancer
Cancer remains the number one disease killer of children; more than genetic anomalies, diabetes, cystic fibrosis, and AIDS combined. Each year in the U.S., approximately 12,500 children and adolescents are diagnosed with cancer (around 35 a day).One in 330 children will develop cancer by age 20.Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region. Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children. The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents). Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. 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 to distant sites at the time of diagnosis). When cancer strikes children, it behaves differently from cancer in adults. Children frequently have a more advanced stage of cancer when they are first diagnosed.
Monday, April 30, 2007
one evening in time...a lifetime of memories
I am at a loss for words. Yesterday was amazing, overwhelming, indescribable, touching, emotional, and fun!
The day started with people gathering in Humphrey to start the Poker Run. I didn’t know how many cars, trucks, and bikes to expect…but my expectations were far exceeded! They registered over 350 poker tickets. The stops were in Newman Grove, Albion, Genoa, Monroe and Columbus. For those of you who are familiar with those towns…imagine 300 motorcycles lined up on the streets! It was an amazing site to see. Chad and I did not go on the run, but we did go to the starting point to see them all gathered, it was unreal!
As the riders finished they rolled into the Legion in Columbus. Some started to arrive as early as 3:00! It was just amazing, the entire day. People came to eat, be entertained, visit, and show support for Charli – and they did it in style! There were raffles throughout the night, and the evening finished with an auction of several donated prizes…ranging from a stuffed John Deere dog that went for $50 to a signed volleyball (by the 2006 National Championship Volleyball Team, the Nebraska Huskers!) for over $600.
I did my best to raise awareness to neuroblastoma and childhood cancer. I know that I could have done so much better…but did not expect people to just sit and listen as well as they did. I thought I would be kind of “background noise” and wanted to keep it brief. I think before I got my second sentence out the room was totally silent. I started to break down a few times, but knew I had to finish it. What I had to say and what I needed to share was too important to back out of. I was able to share with everyone a little background of childhood cancer and some information about neuroblastoma. I was also able to let people know a little about what Charli did to show us that she was sick. I gave thanks to the many people who helped make the night possible, probably leaving out twice as many people as I thanked. As I left the stage I lost it. I was looking to walk straight back to the back of the room and find a place to just be alone to gather myself…and there were people everywhere!!! (which was a great thing!). I met my dad in the hallway and just lost it. Somehow my dad just has that effect on me, he can just stand there and be strong and let me fall apart – that’s what daddies are for I guess!! I feel terrible because Chad had to come find me, I should have went straight to him. I just wanted to get away though.
There were some grandparents there of a 4 year old little girl who had NB (neuroblastoma) and she told them to tell Charli that “God will heal you, just like he healed me”. I was so touched.
The entire evening was just exhausting…I couldn’t even lift my head off of the pillow this morning!
I didn’t get any pictures (terrible I KNOW) but I know that others did and have sent or will send them to me so I can post them.
Thank you to all of you who came to the event, planned, organized, and orchestrated the entire day – we will never for get everything that was done for us. Walking around the room and seeing all the familiar faces was touching…walking around the room and seeing all the unfamiliar faces was amazing.
This world is an amazing place and 700 people showed us that last night. Our life will be forever changed because of this single event.
GOD BLESS.
The day started with people gathering in Humphrey to start the Poker Run. I didn’t know how many cars, trucks, and bikes to expect…but my expectations were far exceeded! They registered over 350 poker tickets. The stops were in Newman Grove, Albion, Genoa, Monroe and Columbus. For those of you who are familiar with those towns…imagine 300 motorcycles lined up on the streets! It was an amazing site to see. Chad and I did not go on the run, but we did go to the starting point to see them all gathered, it was unreal!
As the riders finished they rolled into the Legion in Columbus. Some started to arrive as early as 3:00! It was just amazing, the entire day. People came to eat, be entertained, visit, and show support for Charli – and they did it in style! There were raffles throughout the night, and the evening finished with an auction of several donated prizes…ranging from a stuffed John Deere dog that went for $50 to a signed volleyball (by the 2006 National Championship Volleyball Team, the Nebraska Huskers!) for over $600.
I did my best to raise awareness to neuroblastoma and childhood cancer. I know that I could have done so much better…but did not expect people to just sit and listen as well as they did. I thought I would be kind of “background noise” and wanted to keep it brief. I think before I got my second sentence out the room was totally silent. I started to break down a few times, but knew I had to finish it. What I had to say and what I needed to share was too important to back out of. I was able to share with everyone a little background of childhood cancer and some information about neuroblastoma. I was also able to let people know a little about what Charli did to show us that she was sick. I gave thanks to the many people who helped make the night possible, probably leaving out twice as many people as I thanked. As I left the stage I lost it. I was looking to walk straight back to the back of the room and find a place to just be alone to gather myself…and there were people everywhere!!! (which was a great thing!). I met my dad in the hallway and just lost it. Somehow my dad just has that effect on me, he can just stand there and be strong and let me fall apart – that’s what daddies are for I guess!! I feel terrible because Chad had to come find me, I should have went straight to him. I just wanted to get away though.
There were some grandparents there of a 4 year old little girl who had NB (neuroblastoma) and she told them to tell Charli that “God will heal you, just like he healed me”. I was so touched.
The entire evening was just exhausting…I couldn’t even lift my head off of the pillow this morning!
I didn’t get any pictures (terrible I KNOW) but I know that others did and have sent or will send them to me so I can post them.
Thank you to all of you who came to the event, planned, organized, and orchestrated the entire day – we will never for get everything that was done for us. Walking around the room and seeing all the familiar faces was touching…walking around the room and seeing all the unfamiliar faces was amazing.
This world is an amazing place and 700 people showed us that last night. Our life will be forever changed because of this single event.
GOD BLESS.
Friday, April 27, 2007
the highs and lows!
Not much to update, which is good!
Charli’s counts were pretty good for the most part. Her platelets are still dropping, but the doctor I spoke with today felt that they should reach their lowest point soon and start to rise up again before Tuesday, which is when we get checked again. They are 74,000 today, and need to be above 100,000 for treatment. This doesn’t seem like a lot. However, if they continue to dip – it could postpone treatment. For example, her counts went from 280,000 to 70,000 in one week.
Other than that…nothing to report. Her white and red count look good, which we were expecting but are still thankful for!
Thank you to all of you who have purchased shirts! I am afraid that I have already had to turn some of you down, because we are out of your size. Just so you know, we have adult large –XXXL and youth small available yet. So, there is still a chance to get them on Sunday if you fit into that size bracket! We also have several bracelets that you can pick up yet too!
Charli had a good day today – she got to see her Aunt & Uncle (and baby cousin) from Iowa, and hope to play with them again tomorrow! Oh, and we got to pop into daycare for about 5 minutes to say hi and tell them that we miss them! The kids were playing outside, enjoying this nice weather!
Well, everyone look for new pictures after the weekend!
God Bless!!
Charli’s counts were pretty good for the most part. Her platelets are still dropping, but the doctor I spoke with today felt that they should reach their lowest point soon and start to rise up again before Tuesday, which is when we get checked again. They are 74,000 today, and need to be above 100,000 for treatment. This doesn’t seem like a lot. However, if they continue to dip – it could postpone treatment. For example, her counts went from 280,000 to 70,000 in one week.
Other than that…nothing to report. Her white and red count look good, which we were expecting but are still thankful for!
Thank you to all of you who have purchased shirts! I am afraid that I have already had to turn some of you down, because we are out of your size. Just so you know, we have adult large –XXXL and youth small available yet. So, there is still a chance to get them on Sunday if you fit into that size bracket! We also have several bracelets that you can pick up yet too!
Charli had a good day today – she got to see her Aunt & Uncle (and baby cousin) from Iowa, and hope to play with them again tomorrow! Oh, and we got to pop into daycare for about 5 minutes to say hi and tell them that we miss them! The kids were playing outside, enjoying this nice weather!
Well, everyone look for new pictures after the weekend!
God Bless!!
Thursday, April 26, 2007
yo-yo
I SWEAR, just as I get up...I get knocked down!
My day was going fairly well. It was hard to stay away from Charli all day, but I did! Charli had a good night. She went down for a late evening nap, and ended up staying down for the night. It was the first time she slept in her 'clothes' and not her PJ's! She actually had a pretty good night. I am not sure if it was because she was feeling better, or if it was because when she woke up at 10:00 we decided to feed her...either way :-)
Then, I got home from work and BAM. Chad lead me into her room and pointed down to her bed. There is was...hair, all over. It broke my heart, it was so real. Up until now I have noticed that it has been breaking off and her 'bald' spot is showing again...but I hadn't really accepted the fact that the chemo was showing. Hard to explain, unless you have been there - glad your not!
Just a reminder - the benefit is this weekend. Not sure if I will post before then or not. Thank you to those who have purchased shirts and bracelets...they are going like "hot cakes"!!
*everyone please say a prayer for my niece Macey. She is stuck in the Kearney hospital with phenomena :-( I know that her mom is bummed that they can’t make it back for the benefit, and so are we. But, they are exactly where they need to be!
I promise to post lots of pictures from the benefit!
I got this song in an email from someone who has been helping us through this time. She is always good for a listening ear, a compassionat word of encouragement, and just an understand voice of reason. We appreciate all your help Jennifer!
My day was going fairly well. It was hard to stay away from Charli all day, but I did! Charli had a good night. She went down for a late evening nap, and ended up staying down for the night. It was the first time she slept in her 'clothes' and not her PJ's! She actually had a pretty good night. I am not sure if it was because she was feeling better, or if it was because when she woke up at 10:00 we decided to feed her...either way :-)
Then, I got home from work and BAM. Chad lead me into her room and pointed down to her bed. There is was...hair, all over. It broke my heart, it was so real. Up until now I have noticed that it has been breaking off and her 'bald' spot is showing again...but I hadn't really accepted the fact that the chemo was showing. Hard to explain, unless you have been there - glad your not!
Just a reminder - the benefit is this weekend. Not sure if I will post before then or not. Thank you to those who have purchased shirts and bracelets...they are going like "hot cakes"!!
*everyone please say a prayer for my niece Macey. She is stuck in the Kearney hospital with phenomena :-( I know that her mom is bummed that they can’t make it back for the benefit, and so are we. But, they are exactly where they need to be!
I promise to post lots of pictures from the benefit!
I got this song in an email from someone who has been helping us through this time. She is always good for a listening ear, a compassionat word of encouragement, and just an understand voice of reason. We appreciate all your help Jennifer!
He's My Son
By Mark Schultz
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Chorus:
Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Chorus
Can you hear me?
Can you see him?
Please don't leave him
He's my son
By Mark Schultz
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Chorus:
Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Chorus
Can you hear me?
Can you see him?
Please don't leave him
He's my son
Tuesday, April 24, 2007
such a big girl...
I took Charli in to have her counts checked again today. I think we have done this about 12 times total, and she has yet to cry! All the nurses tell me how tough she is!! She just watches them and wants to eat whatever they have in their hands!!
Her red count went up like it should, and her white count went up by the thousands since Saturday. But, her platelets have gone down some. They are not low enough to need a transfusion at this point, but they have just consistently gone down over the last week. We hope by Friday (our next check) they have started to rise, so we can move on to round number three!
Charli seems to be a little more tired this week. One of the symptoms of having a low red count is tiredness and light skin, both of which came after the fact. I pray that this is not the reaction she has from treatment from now on.
Below are two pictures of the shirts that were made for Charli’s benefit. If you are interested in one they are $8.00, just let me know! We have youth and adult sizes. We also have bracelets that were made for her that say “live with purpose” they are cute!
I have also found so many other stories that I would love to share about other neuroblastoma (NB) fighters, sadly there just isn't time to tell them all. However, I would like to pass along some wondeful words I have heard from them..
Her red count went up like it should, and her white count went up by the thousands since Saturday. But, her platelets have gone down some. They are not low enough to need a transfusion at this point, but they have just consistently gone down over the last week. We hope by Friday (our next check) they have started to rise, so we can move on to round number three!
Charli seems to be a little more tired this week. One of the symptoms of having a low red count is tiredness and light skin, both of which came after the fact. I pray that this is not the reaction she has from treatment from now on.
Below are two pictures of the shirts that were made for Charli’s benefit. If you are interested in one they are $8.00, just let me know! We have youth and adult sizes. We also have bracelets that were made for her that say “live with purpose” they are cute!
I have also found so many other stories that I would love to share about other neuroblastoma (NB) fighters, sadly there just isn't time to tell them all. However, I would like to pass along some wondeful words I have heard from them..
"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved" ~ Helen Keller
Our goal is to not just survive this horrible disease, but to become better people because of it. Please pray for us while we take this journey.
"I WANT TO LEAVE MY MARK ON THIS WORLD. I WILL NOT ALLOW IT TO LEAVE ITS MARK ON ME."
Our goal is to not just survive this horrible disease, but to become better people because of it. Please pray for us while we take this journey.
"I WANT TO LEAVE MY MARK ON THIS WORLD. I WILL NOT ALLOW IT TO LEAVE ITS MARK ON ME."
And lastly, a few more pictures of Charli - just because I can't help myself :-)
Sunday, April 22, 2007
Good morning world!
Charli’s temp has been great through the night, low actually. Since we have been here (at 10:00 yesterday morning) she has only drank 1 ½ oz, but she did eat ½ a jar of turkey and gravey! I think the turkey smelled like cat food! YUMMM.
Charli is getting two antibiotics to combat 99% of what could possibly come back from the culture (which we hope comes back negative). I know how some of you feel about giving antibiotics when not necessarily needed…and I don’t want to hear it! The benefit of using antibiotics far out ways the risk in these types of situations.
Later this afternoon Charli will receive her first blood transfusion. We have to wait for the antibiotics to finish in about an hour, and wait for the blood bank to send the product. The transfusion itself will last about two hours I believe. This transfusion is for red blood cells only, not platelets or plasma.
She didn’t sleep well last night, but she did have a nice nap this morning, and is trying to nap again…so we hope for a good day!
Hello to all the new readers that have visited in the past day or two, from the neuroblastoma (NB) site and thank you for your support. I realize and respect that you have all walked in our shoes yourself.
THIS JUST IN….GREAT NEWS. Once the transfusion is complete we will be able to come home. WHOOOP-WHOOOP!!
Charli is getting two antibiotics to combat 99% of what could possibly come back from the culture (which we hope comes back negative). I know how some of you feel about giving antibiotics when not necessarily needed…and I don’t want to hear it! The benefit of using antibiotics far out ways the risk in these types of situations.
Later this afternoon Charli will receive her first blood transfusion. We have to wait for the antibiotics to finish in about an hour, and wait for the blood bank to send the product. The transfusion itself will last about two hours I believe. This transfusion is for red blood cells only, not platelets or plasma.
She didn’t sleep well last night, but she did have a nice nap this morning, and is trying to nap again…so we hope for a good day!
Hello to all the new readers that have visited in the past day or two, from the neuroblastoma (NB) site and thank you for your support. I realize and respect that you have all walked in our shoes yourself.
THIS JUST IN….GREAT NEWS. Once the transfusion is complete we will be able to come home. WHOOOP-WHOOOP!!
Saturday, April 21, 2007
we're back....
at Children's in Omaha. Charli spiked a fever this morning of 102.5. Her white blood count is basicly zero - so we had to come down to Omaha as soon as we could. We got here and her temp was lower, but not totally - it varied from 98.9 - 99.9. I hate taking her temp, it is so hard to get a good reading. Either way, the 102.5 was too high for what her count was...and here we sit.
They are doing blood work to see if there is an infection. Her throat is red, but we don't know if that is a cause or a result of this. It sounds like we will be here until atleast Monday, when the results are back. Her counts have to be above 100 before she can leave, no fever for 48 hours, and negative blood cultures. We were goone for less than one week before returning!
We knew that this trip would happen at some point, but I wasn't expecting it to be now. I wonder what I (or we) exposed her to that we shouldn't have that could have gotten her sick. In the begining I thought no matter what choice I made it was going to be the wrong one (when to take her to childrens vs. giving columbus another try) - that is how I felt again today. Did I wait 30 minutes to see if her temp dropped, and possibly regret the wait. Or take her down and hope it was a wasted trip? Ugh, being a mom definatly needs to come with some training. How does everyone else seem to figure it out?
We hope that by morning her counts will be up to 100, or more...and that we just need to wait on the negatve cultures. I don't know what caused the fever, but as long as it goes away and her numbers are up - that is all I care about!!
I will try to post quick little updates when we learn things this weekend. Hope all is well for everyone :-)
They are doing blood work to see if there is an infection. Her throat is red, but we don't know if that is a cause or a result of this. It sounds like we will be here until atleast Monday, when the results are back. Her counts have to be above 100 before she can leave, no fever for 48 hours, and negative blood cultures. We were goone for less than one week before returning!
We knew that this trip would happen at some point, but I wasn't expecting it to be now. I wonder what I (or we) exposed her to that we shouldn't have that could have gotten her sick. In the begining I thought no matter what choice I made it was going to be the wrong one (when to take her to childrens vs. giving columbus another try) - that is how I felt again today. Did I wait 30 minutes to see if her temp dropped, and possibly regret the wait. Or take her down and hope it was a wasted trip? Ugh, being a mom definatly needs to come with some training. How does everyone else seem to figure it out?
We hope that by morning her counts will be up to 100, or more...and that we just need to wait on the negatve cultures. I don't know what caused the fever, but as long as it goes away and her numbers are up - that is all I care about!!
I will try to post quick little updates when we learn things this weekend. Hope all is well for everyone :-)
Friday, April 20, 2007
Don't you know....
how great my friends are?! Today, which is probably one of the hardest days I have had yet – I had four people do great things for me that were wonderful pick-me-ups! I had someone at the coffee shop give me a free smoothie, a friend send me flowers, another friend dropped off a card and several homemade headbands for Charli and a handmade card from her son, and a friend send me a wonderfully nice email – just to say that she understands. Am I blessed or what. Kind of like God saying… “listen up Brenda…you have too much to be happy about to waste time being sad!”. I think it worked girls – so THANK YOU!!
Just some cute pictures of Charli…are there any other kind?!!
Just some cute pictures of Charli…are there any other kind?!!
This is one of the bows that my mommy's friend Linda made me...I look like a present!
Here mommy...you read this book!
well....pink IS the new black, ya know!
Just laying on the shirts that were made for me!!
I am training to be a cheerleader!
SO BIG!
on your marks, get set....go!
all this playing is a lot of work...I need to rest!!
I am not sure if I am happy or sad, but whatevr I am...I AM CUTE!
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