- 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, September 14, 2007
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!
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.
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 :-)
taking the stairs!
the preister girls (and Conner!!!!)
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
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 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!Tuesday, August 28, 2007
PLEASE keep praying
Our friend Keira will be going in for scans tomorrow in Texas. Please pray that her tumor has shrunk and that no more treatments will be necessary at this point.
I know that the power of prayer works. I also know that there a lot of you out there who believe the same thing. If you are a part of a prayer circle I ask that you include her name, as well as pass this request along to keep the prayers going for her!
There is a link to her page located to the right.
THANK YOU!
I know that the power of prayer works. I also know that there a lot of you out there who believe the same thing. If you are a part of a prayer circle I ask that you include her name, as well as pass this request along to keep the prayers going for her!
There is a link to her page located to the right.
THANK YOU!
Monday, August 27, 2007
one action CAN change the world...
I received this in an email today, and at the end, it asks you to pass it along to your friends. I wanted to make sure as many people saw this as possible...so I am posting it to you - my friends.
Since Charli was diagnosed with cancer, we have had many acts of unbelievable kindness...stories that should probably be passed around in emails that go from friend to friend. Maybe someday I will write about them all!
I know that this is a little long, but it is worth it. It just goes to show that sometimes that one decision in your life can change the world. Personally, I cannot think of any one thing I have done to make my mark…but I hope to change that. But, I know that some of the people closest to me have changed the world for many people, and that is amazing!
I have been somewhat emotional today – not entirely sure why! I have received several emails today about sick children, and I guess I just read a little more into them now than I did when I read them the first time six months ago, so this really tugged at my heart-strings.
I am blabbering on now! Just please take a few minutes to read this…and then go out and do something that will make someone’s day today. It doesn’t take much – a phone call or a smile can turn the day around sometimes!!!
What would you do?....would you make the choice. Don't look for a punch line, there isn't one. Read it anyway. My question is: Would you have made the same choice?
At a fund raising dinner for a school that serves learning-disabled children, the father of one of the students delivered a speech that would never be forgotten by all who attended. After
extolling the school and its dedicated staff, he offered a question: "When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"
The audience was stilled by the query.
The father continued. "I believe, that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child."
Then he told the following story:
Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they'll let me play?” Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.
Shay's father approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in
to bat in the ninth inning."
Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. His father watched with a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth inning, Shay's team
scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.
At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.
Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all teammates. Everyone from the stands and both teams started yelling, "Shay, run to first! Run to first!” Never in his life had Shay ever run that far, but he made it to first
base. He scampered down the baseline, wide-eyed and startled.
Everyone yelled, "Run to second, run to second!” Catching his breath, Shay awkwardly ran towards second, gleaming, and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball ... the smallest person on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third baseman’s head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.
All were screaming, "Shay, Shay, Shay, all the Way Shay"
Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, "Run to third! Shay, run to third!"
As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, "Shay, run home! Run home!” Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team
"That day", said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and humanity into this world".
Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making his father so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!
AND NOW A LITTLE FOOTNOTE TO THIS STORY: We all send thousands of jokes through the e-mail without a second thought, but when it comes to sending messages about life choices, people hesitate. The crude, vulgar, and often obscene pass freely through cyberspace, but public discussion about decency is too often suppressed in our schools
and workplaces.
If you're thinking about forwarding this message, chances are that you're probably sorting out the people in your address book who aren't the "appropriate" ones to receive this type of message. Well, the person who sent you this believes that we all can make a difference. We all have thousands of opportunities every single day to help realize the "natural order of things.” So many seemingly trivial interactions between two people present us with a choice: Do we pass along a little spark of love and humanity or do we pass up those
opportunities and leave the world a little bit colder in the process?
A wise man once said every society is judged by how it treats it's least fortunate amongst them.
You now have two choices:
1. Delete
2. Forward
May your day, be a Shay Day
Since Charli was diagnosed with cancer, we have had many acts of unbelievable kindness...stories that should probably be passed around in emails that go from friend to friend. Maybe someday I will write about them all!
I know that this is a little long, but it is worth it. It just goes to show that sometimes that one decision in your life can change the world. Personally, I cannot think of any one thing I have done to make my mark…but I hope to change that. But, I know that some of the people closest to me have changed the world for many people, and that is amazing!
I have been somewhat emotional today – not entirely sure why! I have received several emails today about sick children, and I guess I just read a little more into them now than I did when I read them the first time six months ago, so this really tugged at my heart-strings.
I am blabbering on now! Just please take a few minutes to read this…and then go out and do something that will make someone’s day today. It doesn’t take much – a phone call or a smile can turn the day around sometimes!!!
What would you do?....would you make the choice. Don't look for a punch line, there isn't one. Read it anyway. My question is: Would you have made the same choice?
At a fund raising dinner for a school that serves learning-disabled children, the father of one of the students delivered a speech that would never be forgotten by all who attended. After
extolling the school and its dedicated staff, he offered a question: "When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"
The audience was stilled by the query.
The father continued. "I believe, that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child."
Then he told the following story:
Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they'll let me play?” Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.
Shay's father approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in
to bat in the ninth inning."
Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. His father watched with a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth inning, Shay's team
scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.
At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.
Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all teammates. Everyone from the stands and both teams started yelling, "Shay, run to first! Run to first!” Never in his life had Shay ever run that far, but he made it to first
base. He scampered down the baseline, wide-eyed and startled.
Everyone yelled, "Run to second, run to second!” Catching his breath, Shay awkwardly ran towards second, gleaming, and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball ... the smallest person on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third baseman’s head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.
All were screaming, "Shay, Shay, Shay, all the Way Shay"
Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, "Run to third! Shay, run to third!"
As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, "Shay, run home! Run home!” Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team
"That day", said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and humanity into this world".
Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making his father so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!
AND NOW A LITTLE FOOTNOTE TO THIS STORY: We all send thousands of jokes through the e-mail without a second thought, but when it comes to sending messages about life choices, people hesitate. The crude, vulgar, and often obscene pass freely through cyberspace, but public discussion about decency is too often suppressed in our schools
and workplaces.
If you're thinking about forwarding this message, chances are that you're probably sorting out the people in your address book who aren't the "appropriate" ones to receive this type of message. Well, the person who sent you this believes that we all can make a difference. We all have thousands of opportunities every single day to help realize the "natural order of things.” So many seemingly trivial interactions between two people present us with a choice: Do we pass along a little spark of love and humanity or do we pass up those
opportunities and leave the world a little bit colder in the process?
A wise man once said every society is judged by how it treats it's least fortunate amongst them.
You now have two choices:
1. Delete
2. Forward
May your day, be a Shay Day
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