Today I am grateful for life saving blood. The message from HopeKids below puts giving blood in a different perspective. It also makes me realize that I need to start giving blood. I am very grateful for those individuals, who ever they are and where ever they are, that donated healthy blood that eventually was received by Raylee during her blood transfusion and platelett transfusion, and surgeries. If it weren't for these individuals who kept themselves healthy enough for their blood to go to an immunocompromised child, she may not have made it. I am also grateful for Jesus Christ for giving his blood to all of us....if you read below you will understand what I mean. I feel so inspired to share this with you on Thanksgiving day. :)
Life Saving Blood
"Today's HopeMinute is from HopeKids mom Brenda Empie. Her son is diagnosed with Aplastic Anemia.
Before having children I used to donate blood on a regular basis. I’m a little ashamed to admit that I was frequently annoyed with the time it took out of my day. I never once thought of the ramifications of what I was doing. In my ignorance I never once thought that by donating blood I was donating life.
Then one day a doctor told us that our son has Aplastic Anemia--a type of bone marrow failure--and someone else’s blood will be needed to keep him alive while they figure out the course of treatment. For months, all but the tiniest amount of white blood cells in my son's body were donated by someone else. Someone else's sacrifice of time and convenience kept him alive. I had never been more thankful!
As he got transfusions I would ponder these things. I kept thinking there is life in this blood he’s receiving. I would always thank God that someone took the time to donate life. And then an understanding came to me with such clarity that I gasped. Although the understanding of someone else’s blood sustaining the life of my son was new to me it wasn’t new to God. Jesus’ sacrifice of his time, love and blood is what sustains me. Through His blood I have forgiveness of all my sins AND eternal life. Wow!
I pray that you may know the abundant life that is offered through the precious blood of the lamb. That you would understand and find comfort in his love.
I pray that out of His glorious riches He may strengthen you with power through His Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power together with all the Lord's holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge - that you may be filled to the measure of all the fullness of God. (Ephesians 3:16-19, New International Version)
-Brenda Empie, HopeKids mom, Utah Chapter"
Introducing Raylee and Jorja.....sisters! Raylee is our cancer baby and Jorja is her sister's keeper.
Thursday, November 24, 2011
Tuesday, November 22, 2011
Oncology Follow-Up
Today Raylee had a follow-up appointment with her oncologist. She was so excited to go back to the hospital this morning. She wanted to spend the night. What Raylee didn't realize was this follow-up appointment not only was going to take all day, but it wasn't going to be much fun.
We started the day with a CT scan. Since Raylee is under 4-years-old she has to be prepped for sedation regardless if she is sedated for the scan. This meant that Raylee couldn't eat or drink since midnight the night before the scan. This didn't seem to bother her too much. When we checked into medical imaging they took us back to a room to give Raylee and IV. Since Raylee no longer has her central line an IV is needed to inject the dye for the scan. Raylee's hope of having a fun day at the hospital was quickly stolen. She knew exactly what the nurses were going to do and she began to cry and scream "no poke!" She is one hell of a strong kid. She sat in Jerry's lap while he held her tight and it took 3 other nurses and myself to keep her as still as possible. She still managed to wiggle, fling herself, and push herself out of Jerry's arms. They had a difficult time finding a vein for the IV. They tried a technique of turning the lights off and putting a light on her hand to find the vein. This worked but the IV looked like a disaster--and it hurt Raylee really bad. Raylee was ready to go home by this time and we had only been there for 30 minutes. We still had a lot to accomplish.
After the IV, one of the radiologists brought out a jug of contrast to drink for the imaging. They flavor it to try to disguise the awful taste. It isn't easy trying to get a 3-year-old to drink this; especially because it's almost 20 ounces that she needs to drink. We wandered around the hospital encouraging her to drink and trying to keep her entertained as much as possible because the imaging can't take place until 1 hour after she starts drinking it; we simply had time to kill. We spilt the contrast once and lost track of how much she drank--but we have been through this before and we were not worried about it. Even though the nurses say she needs to drink a certain amount, she had scans in the past and wasn't able to drink it all and the images turned out fine. After drinking half the amount needed Raylee started looking as if she was going to throw it up as she gagged it down and began refusing it. So we proceeded with the imaging.
Raylee is a very curious child. Prior to the CT scan she wandered back to the radiologists offices and the employee hallways by the CT Scanning room. The radiologists didn't mind and it was as if they took her on a private tour. They showed her their computers and imaging machines, where they work, and what things do. It was kinda funny because she was asking them questions, What is this? What does it do? They promised to show her the images of her belly on their computer when she was done. And they did just that, they showed us her images and it was really amazing how these machines shaped like a doughnut can take such amazing pictures of organs and every in between skin and bone. Since she's experienced many CT scans now, I knew she wouldn't have any problems lying still for it and sedation wouldn't be necessary. It actually seemed to relax her after the traumatic IV experience. The actual pictures only take around 10 to 15 minutes.
These were not the only pictures to be taken today. Raylee also had an echocardiograph. The follow-up echos are very short around 10 minutes. They are important to ensure she has no heart problems from having chemo. Raylee was nervous for the echo but she came out of it like a champ. By this time she received two new stuffed animals for being amazing, a teddy bear in medical imaging and a stuffed dinosaur from cardiology. (Big Sigh) No wonder Raylee gets excited to go to the hospital--they give her toys and stuffed animals.
After all the tests we finally made it to oncology. The staff there just love her and build up her self-confidence as they tell her how amazing she is, how cute she is, how smart she is, how happy they are to see her, etc. One of the nurses came in to draw blood and Raylee patted her on the bum and said, 'Feel my hair it's soft." Her oncologist kept telling us how happy she was that Raylee's treatment was short and that she is doing so well. She was happy to say nothing abnormal was showing on any of the images. What a relief! I knew nothing abnormal would show but hearing the words from her oncologist was liberating.
We started the day with a CT scan. Since Raylee is under 4-years-old she has to be prepped for sedation regardless if she is sedated for the scan. This meant that Raylee couldn't eat or drink since midnight the night before the scan. This didn't seem to bother her too much. When we checked into medical imaging they took us back to a room to give Raylee and IV. Since Raylee no longer has her central line an IV is needed to inject the dye for the scan. Raylee's hope of having a fun day at the hospital was quickly stolen. She knew exactly what the nurses were going to do and she began to cry and scream "no poke!" She is one hell of a strong kid. She sat in Jerry's lap while he held her tight and it took 3 other nurses and myself to keep her as still as possible. She still managed to wiggle, fling herself, and push herself out of Jerry's arms. They had a difficult time finding a vein for the IV. They tried a technique of turning the lights off and putting a light on her hand to find the vein. This worked but the IV looked like a disaster--and it hurt Raylee really bad. Raylee was ready to go home by this time and we had only been there for 30 minutes. We still had a lot to accomplish.
After the IV, one of the radiologists brought out a jug of contrast to drink for the imaging. They flavor it to try to disguise the awful taste. It isn't easy trying to get a 3-year-old to drink this; especially because it's almost 20 ounces that she needs to drink. We wandered around the hospital encouraging her to drink and trying to keep her entertained as much as possible because the imaging can't take place until 1 hour after she starts drinking it; we simply had time to kill. We spilt the contrast once and lost track of how much she drank--but we have been through this before and we were not worried about it. Even though the nurses say she needs to drink a certain amount, she had scans in the past and wasn't able to drink it all and the images turned out fine. After drinking half the amount needed Raylee started looking as if she was going to throw it up as she gagged it down and began refusing it. So we proceeded with the imaging.
Raylee is a very curious child. Prior to the CT scan she wandered back to the radiologists offices and the employee hallways by the CT Scanning room. The radiologists didn't mind and it was as if they took her on a private tour. They showed her their computers and imaging machines, where they work, and what things do. It was kinda funny because she was asking them questions, What is this? What does it do? They promised to show her the images of her belly on their computer when she was done. And they did just that, they showed us her images and it was really amazing how these machines shaped like a doughnut can take such amazing pictures of organs and every in between skin and bone. Since she's experienced many CT scans now, I knew she wouldn't have any problems lying still for it and sedation wouldn't be necessary. It actually seemed to relax her after the traumatic IV experience. The actual pictures only take around 10 to 15 minutes.
These were not the only pictures to be taken today. Raylee also had an echocardiograph. The follow-up echos are very short around 10 minutes. They are important to ensure she has no heart problems from having chemo. Raylee was nervous for the echo but she came out of it like a champ. By this time she received two new stuffed animals for being amazing, a teddy bear in medical imaging and a stuffed dinosaur from cardiology. (Big Sigh) No wonder Raylee gets excited to go to the hospital--they give her toys and stuffed animals.
After all the tests we finally made it to oncology. The staff there just love her and build up her self-confidence as they tell her how amazing she is, how cute she is, how smart she is, how happy they are to see her, etc. One of the nurses came in to draw blood and Raylee patted her on the bum and said, 'Feel my hair it's soft." Her oncologist kept telling us how happy she was that Raylee's treatment was short and that she is doing so well. She was happy to say nothing abnormal was showing on any of the images. What a relief! I knew nothing abnormal would show but hearing the words from her oncologist was liberating.
Tuesday, November 15, 2011
Make-A-Wish
The social worker assigned to our family at the hospital partnered up with Raylee's oncologist and they referred her to Make-A-Wish. Today Make-A-Wish called me and said they wanted to grant Raylee a wish. I am so excited for Raylee to be able to make a wish, it will be fun and a great experience for her and our family. They said their wish granting volunteers will call us and arrange a time we can meet them. I told them we have donated money to Make-A-Wish before and never thought that our kid would be a recipient. They told me not to worry about anything and to just have fun with Raylee.
I am not sure what Raylee will wish for. What if she wishes for a real live horse?!?!?!? LOL
I am not sure what Raylee will wish for. What if she wishes for a real live horse?!?!?!? LOL
Thursday, November 10, 2011
Heaven Is Real
My sister recently sent me a book called "Heaven Is Real" by Todd Burpo. It is about a young child named Colton Burpo who almost dies due to appendix rupture and after he recovered it was discovered the child had an after life experience. This book was amazing and I could not set it down. I only set it down when I would read something that made me cry and I would need to walk away to compose myself. Colton was only 4-years-old when he got really sick and had almost died. Months after his recovery he describes heaven and Jesus Christ. This was a great story. Through Raylee's fight with with cancer many people reached out to us and helped us in many many ways. It wasn't easy to take the help and it was an extremely humbling experience. We understand that through Jesus Christ people get inspired to help others and if we didn't except the help from others we would prevent them from reaching those blessings from God and fulfilling the inspiration they received. My sister marked a section in the book "Heaven Is Real" and stated it remindd her of me and Jerry. This is what it says:
"We were adamantly self-reliant--maybe, in retrospect, to the point of being prideful. But that grueling stint in the hospital snapped our pride like a dry twig and taught us how to be humble enough to accept help from other people, physically, emotionally, and financially.
It's good to be strong and able to bless others, yes. But we learned the value of being vulnerble enough to let others be strong for us, to let others bless us. That, it turned out, was a blessing to them as well."
We are indeed grateful for Raylee's progress in recovery. We are indeed grateful for everyone who reached out to us to help support us just as it says above--physically, emotionally, and financially. I can't believe it is November. So much has happened in the last 6 months and time has flown by, but yet at the same time it seems like the last 6 months were 6 years. I think that is because of how exhausting it has been. What has helped us get through this is the stability of all of our supporters. That is what has made such a difference.
There is a quote a friend gave me when Raylee was really sick that says "Gods promises are like the stars; the darker the night the brighter they shine." David Nicholas I encourage all of us to stay close to God and as little Colton in the book "Heaven Is Real" would say, and keep Jesus in your heart. God doesn't always make things happen the way we want, and sometimes we all experience hard times, but this is all part of the bigger plan of refining us so that someday we will understand how to be like Him. In saying this, it doesn't mean I never got upset with God that Raylee was so ill, I sure did. I think that's normal as long as that anger doesn't get the best of you and doesn't hurt your relationship with God.
"We were adamantly self-reliant--maybe, in retrospect, to the point of being prideful. But that grueling stint in the hospital snapped our pride like a dry twig and taught us how to be humble enough to accept help from other people, physically, emotionally, and financially.
It's good to be strong and able to bless others, yes. But we learned the value of being vulnerble enough to let others be strong for us, to let others bless us. That, it turned out, was a blessing to them as well."
We are indeed grateful for Raylee's progress in recovery. We are indeed grateful for everyone who reached out to us to help support us just as it says above--physically, emotionally, and financially. I can't believe it is November. So much has happened in the last 6 months and time has flown by, but yet at the same time it seems like the last 6 months were 6 years. I think that is because of how exhausting it has been. What has helped us get through this is the stability of all of our supporters. That is what has made such a difference.
There is a quote a friend gave me when Raylee was really sick that says "Gods promises are like the stars; the darker the night the brighter they shine." David Nicholas I encourage all of us to stay close to God and as little Colton in the book "Heaven Is Real" would say, and keep Jesus in your heart. God doesn't always make things happen the way we want, and sometimes we all experience hard times, but this is all part of the bigger plan of refining us so that someday we will understand how to be like Him. In saying this, it doesn't mean I never got upset with God that Raylee was so ill, I sure did. I think that's normal as long as that anger doesn't get the best of you and doesn't hurt your relationship with God.
Saturday, November 5, 2011
100 Days Cancer Free!! :)
Today is a mile stone! It has been 100 days since Raylee's cancer was removed. I thought about having a big celebration for anybody who wanted to come celebrate with us. But I decided to wait until spring when it is warm outside and we can have bouncy houses for the children. Today the high was only 40 degrees and we woke to over 6 inches of snow. A celebration is in the making. However today we did celebrate between the 4 of us and just made it personal.
Like I said, it snowed last night and we woke up to pure whiteness. Of course, Raylee and Jorja wanted to go right outside and start playing in it. They had to wait until at least it was sunny. So around noon we put the winter gear one and out the door they went. My girls love the snow. For some reason it seems to be a white fluffy blanket to them because they fall into it as if it will protect them from hitting the ground. It seems that with each season there is an excitement from them for the change. In spring they will be excited for summer. They get excited for all the holidays that come with each season as well. I wonder if this type of 'childhood excitement' is something Christ wants us as adults to have when He asks us to be like children. They look forward to the changes, we as adults often complain about them especially the winter time because of the cold and snowy conditions as they bring an inconvenience to us. Instead of looking at the snow as an inconvenience I like to look at it as a pure white blanket that cleanses everything. Do you ever notice how it is more quiet outside when it snows as if the snow itself muffles noise? Or how it just seems to calm everything down (maybe not rush hour traffic but besides that)?
It is hard for me to realize that 100 days has gone by since Raylee had major surgery to remove the monster that laid inside her. It seems like a distant but recent nightmare all at the same time. She is adjusting well. The month of November she does have lots of follow-up tests to find any side effects to the chemotherapy and to scan for any returning cancer cells. The other day we were able to get her caught up on all her vaccinations and dental appointments. Chemo therapy does a number on the mouth resulting in tooth decay. Raylee has a few cavities and will have them fixed in December. Since she is so young she will have to b e sedated for the procedure. She was also weighed the other day and she has gained more weight. I am proud of her, she now weighs 29 pounds.
We keep moving forward and we keep trying to adjust to our new normal. It hasn't been easy. Raylee has a different realization of being a kid. When she plays with her Barbies or her dolls they go to the hospital for Chemo medicine. She is always taking about Chemo medicine. I struggle with excepting the impact the Chemo experience had on her. Some nights she still wakes up crying because she has nightmares. She isn't scared of anything or anybody. She freaked out at the dentist office because they are like doctors. She freaked out when the nurse was giving her a flu shot and her missing vaccinations. She has several more tests this month including the CT Scan which they will sedate her for if necessary. It fear it is going to be a bumpy month.
Like I said, it snowed last night and we woke up to pure whiteness. Of course, Raylee and Jorja wanted to go right outside and start playing in it. They had to wait until at least it was sunny. So around noon we put the winter gear one and out the door they went. My girls love the snow. For some reason it seems to be a white fluffy blanket to them because they fall into it as if it will protect them from hitting the ground. It seems that with each season there is an excitement from them for the change. In spring they will be excited for summer. They get excited for all the holidays that come with each season as well. I wonder if this type of 'childhood excitement' is something Christ wants us as adults to have when He asks us to be like children. They look forward to the changes, we as adults often complain about them especially the winter time because of the cold and snowy conditions as they bring an inconvenience to us. Instead of looking at the snow as an inconvenience I like to look at it as a pure white blanket that cleanses everything. Do you ever notice how it is more quiet outside when it snows as if the snow itself muffles noise? Or how it just seems to calm everything down (maybe not rush hour traffic but besides that)?
It is hard for me to realize that 100 days has gone by since Raylee had major surgery to remove the monster that laid inside her. It seems like a distant but recent nightmare all at the same time. She is adjusting well. The month of November she does have lots of follow-up tests to find any side effects to the chemotherapy and to scan for any returning cancer cells. The other day we were able to get her caught up on all her vaccinations and dental appointments. Chemo therapy does a number on the mouth resulting in tooth decay. Raylee has a few cavities and will have them fixed in December. Since she is so young she will have to b e sedated for the procedure. She was also weighed the other day and she has gained more weight. I am proud of her, she now weighs 29 pounds.
We keep moving forward and we keep trying to adjust to our new normal. It hasn't been easy. Raylee has a different realization of being a kid. When she plays with her Barbies or her dolls they go to the hospital for Chemo medicine. She is always taking about Chemo medicine. I struggle with excepting the impact the Chemo experience had on her. Some nights she still wakes up crying because she has nightmares. She isn't scared of anything or anybody. She freaked out at the dentist office because they are like doctors. She freaked out when the nurse was giving her a flu shot and her missing vaccinations. She has several more tests this month including the CT Scan which they will sedate her for if necessary. It fear it is going to be a bumpy month.
Happy Halloween!
So Jorja is ill with a bacterial infection in her mouth. So this Halloween we just took it easy. Our neighborhood had a trunk-or-treat Saturday so we were able to participate in that. Jorja dressed up like a pirate and Raylee dressed up like a cowgirl. She said she was Jesse from ToyStory. It wasn't a Jesse costume but we went along with her. They had fun at the trunk-or-treat and we were happy because the weather was nice. Jorja went to the doctor today as well and was prescribed a heavy duty antibiotic. Her doctor told her he only sees this infection about 3 times a year. I don't remember what it was called but it creates blisters all over the mouth, lips, and tounge. They look like cold sores but they aren't cold sores. She isn't able to eat or drink. Her doctor is afraid she will dehydrate. She has a fever as well and isn't able to go back to school until her fever is gone.
Today I received an awesome story from HopeKids about pumpkins. I have heard similar versions of this story before but thought I would share it below:
"PUMPKINS"
"One of the best things about Halloween (besides trick or treating, of course!) is picking out just the right pumpkin; the one that is perfect for carving. First, you wash the outside to make it all shiny and ready to be cut open. Then, you cut the top off and scoop out all the yucky, slimy insides. Afterwords, it’s time to carve the face, put the candle in and step back to admire your masterpiece.
Did you know that being a Christian is very similar to a pumpkin? Just like we choose a pumpkin for carving, God chose YOU, a uniquely created human being, to be on this earth. Your life is no accident. You were placed here with a purpose and a plan.
Most pumpkins are full of dirt on the outside that needs to be washed off. We also have dirt in our lives that needs to be cleansed. That’s what Jesus did when he died on the cross for our sins. He wiped away all of our sins to make us brand new creations! When you accept Jesus into your heart, God scoops out all the yucky stuff, just like we do when we carve a pumpkin. He takes the seeds of self-doubt, hatred, greed, pride, and any other sin we have in our hearts and He cleans us all out. It says in 2 Corinthians 5:17 “Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!”
The Lord will then carve you a new smiling face and put His light inside you to shine for the world to see! “In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven.” Matthew 5:16
This Halloween let your light shine for Jesus, and when you see the carved pumpkins in front of homes as you trick or treat tonight, be reminded of all He has done for you.
-Bridget Asheim, Arizona Chapter"
Today I received an awesome story from HopeKids about pumpkins. I have heard similar versions of this story before but thought I would share it below:
"PUMPKINS"
"One of the best things about Halloween (besides trick or treating, of course!) is picking out just the right pumpkin; the one that is perfect for carving. First, you wash the outside to make it all shiny and ready to be cut open. Then, you cut the top off and scoop out all the yucky, slimy insides. Afterwords, it’s time to carve the face, put the candle in and step back to admire your masterpiece.
Did you know that being a Christian is very similar to a pumpkin? Just like we choose a pumpkin for carving, God chose YOU, a uniquely created human being, to be on this earth. Your life is no accident. You were placed here with a purpose and a plan.
Most pumpkins are full of dirt on the outside that needs to be washed off. We also have dirt in our lives that needs to be cleansed. That’s what Jesus did when he died on the cross for our sins. He wiped away all of our sins to make us brand new creations! When you accept Jesus into your heart, God scoops out all the yucky stuff, just like we do when we carve a pumpkin. He takes the seeds of self-doubt, hatred, greed, pride, and any other sin we have in our hearts and He cleans us all out. It says in 2 Corinthians 5:17 “Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!”
The Lord will then carve you a new smiling face and put His light inside you to shine for the world to see! “In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven.” Matthew 5:16
This Halloween let your light shine for Jesus, and when you see the carved pumpkins in front of homes as you trick or treat tonight, be reminded of all He has done for you.
-Bridget Asheim, Arizona Chapter"
Wednesday, November 2, 2011
Grassroot Advocates
A message from the American Childhood Cancer Organization:
"Children with cancer rely on us as their family, friends and community to be their voice. While they fight cancer in their bodies, we must be ready to fight this disease as their advocates. They cannot lobby. They cannot vote. They must use their collective strength to fight the cancer. We must use our collective strength to fight the "system." We must educate ourselves on legislation that can positively impact our children's treatment. We must be willing to take time to call our government representatives and let them know how this disease impacts our families.
We are the "grassroots voice" of this cause. We have a lot of work to do as we strive towards the day when all of our children will survive and lead a long and healthy life. Thanks to all of you who continue to join together with ACCO to strengthen our grassroots voice. We do this "because kids can't fight cancer alone."
Ruth I Hoffman MPH, Executive Director"
"The term "grassroots" refers to a group of people who have been impacted by a cause and who stand united behind a movement to make a difference in that cause. As families of children with cancer we are the grassroots voice of our nations' children with cancer. In order to strengthen our grassroots community we need to be informed about policies, legislation, decisions, and opportunities that impact our children's treatment and quality of life, and advocate for better treatments for those children who have yet to be diagnosed."
"Children with cancer rely on us as their family, friends and community to be their voice. While they fight cancer in their bodies, we must be ready to fight this disease as their advocates. They cannot lobby. They cannot vote. They must use their collective strength to fight the cancer. We must use our collective strength to fight the "system." We must educate ourselves on legislation that can positively impact our children's treatment. We must be willing to take time to call our government representatives and let them know how this disease impacts our families.
We are the "grassroots voice" of this cause. We have a lot of work to do as we strive towards the day when all of our children will survive and lead a long and healthy life. Thanks to all of you who continue to join together with ACCO to strengthen our grassroots voice. We do this "because kids can't fight cancer alone."
Ruth I Hoffman MPH, Executive Director"
"The term "grassroots" refers to a group of people who have been impacted by a cause and who stand united behind a movement to make a difference in that cause. As families of children with cancer we are the grassroots voice of our nations' children with cancer. In order to strengthen our grassroots community we need to be informed about policies, legislation, decisions, and opportunities that impact our children's treatment and quality of life, and advocate for better treatments for those children who have yet to be diagnosed."
Thursday, October 27, 2011
Message from HopeKids
"Anniversaries and Milestones"
"We are fast approaching that hectic time of year when we celebrate Halloween, Thanksgiving, Christmas and the New Year all in the span of just two months. These events make us busy—with so much time, effort and money devoted to them. Do you ever take a moment to stop and remember the special anniversaries and milestones that are important in your own life? What if you were to celebrate them with the same effort as you do the holidays?
There are many events in our lives that help shape us as individuals and as families. Perhaps the event is one you that you wouldn’t have chosen; the loss of a loved one, loss of a job, or a betrayal. Even though the memory may be painful, remember that it is through events like these that God helps mature us and prepare us for the future. Taking the time to remember specific anniversaries or milestones, to reflect on how far we have come, or what we have overcome, is important.
Maybe for some of you today is the anniversary of a significant moment that is worth remembering or celebrating. God’s desire is that we live our lives in such a way that despite the good or the bad, we are able to take joy in seeing how far we have come.
Whatever the reason or whenever the date, take some time and make an effort each year to remember the moments that have special significance to you and your family.
- Josh Taylor, HopeKids President"
"We are fast approaching that hectic time of year when we celebrate Halloween, Thanksgiving, Christmas and the New Year all in the span of just two months. These events make us busy—with so much time, effort and money devoted to them. Do you ever take a moment to stop and remember the special anniversaries and milestones that are important in your own life? What if you were to celebrate them with the same effort as you do the holidays?
There are many events in our lives that help shape us as individuals and as families. Perhaps the event is one you that you wouldn’t have chosen; the loss of a loved one, loss of a job, or a betrayal. Even though the memory may be painful, remember that it is through events like these that God helps mature us and prepare us for the future. Taking the time to remember specific anniversaries or milestones, to reflect on how far we have come, or what we have overcome, is important.
Maybe for some of you today is the anniversary of a significant moment that is worth remembering or celebrating. God’s desire is that we live our lives in such a way that despite the good or the bad, we are able to take joy in seeing how far we have come.
Whatever the reason or whenever the date, take some time and make an effort each year to remember the moments that have special significance to you and your family.
- Josh Taylor, HopeKids President"
Sunday, October 23, 2011
Trip to Bear Lake
This weekend we were privileged enough to be sent away to Bear Lake for the weekend. We stayed in a little cabin not far from the lake. It was unbelievable how beautiful it was there. The way the orange and yellow leaves contrasted with the turquoise water was remarkable. I decided I wanted to move there! :) If I can convince Jorja tha the Bear Lake Monster is not real she just may agree to move.
We had a wonderful time thanks to HopeKids and eTrade who made this weekend possible. To see the excitement on the girl's faces when they saw the cabin and the log bunkbed they were going to sleep in was priceless. They had so much fun. This was the first time in a really long time that our family had nothing else to do but play, relax, and have no worries!
We had a wonderful time thanks to HopeKids and eTrade who made this weekend possible. To see the excitement on the girl's faces when they saw the cabin and the log bunkbed they were going to sleep in was priceless. They had so much fun. This was the first time in a really long time that our family had nothing else to do but play, relax, and have no worries!
Wednesday, October 19, 2011
Gold Ribbon Ordered!
Raylee's gold ribbin for the Awareness Tree at "Light Up The Holidays with Hope" which will be held Saturday, 12/3/11 in Washington DC.
Local high school students in the Washington DC area volunteer their time to make all of the gold ribbons for the Tree. The tree is covered with thousands of gold ribbons which bear the name of a child with cancer.
"Every year, a 23-foot tree is erected in the Old Post Office Pavilion in Washington D.C.. This tree is decorated solely with gold ribbons, the symbol for childhood cancer. Each ribbon bears the name of a child who has or has had cancer, and families from across the nation send in their children's names to be part of the tree. This is a powerful symbol that is seen by thousands of people every year.
Passersby are touched by the sheer volume of ribbons and names."
Once this event is complete and tree is taken down the ribbon bearing Raylee's name will be mailed to her.
Local high school students in the Washington DC area volunteer their time to make all of the gold ribbons for the Tree. The tree is covered with thousands of gold ribbons which bear the name of a child with cancer.
"Every year, a 23-foot tree is erected in the Old Post Office Pavilion in Washington D.C.. This tree is decorated solely with gold ribbons, the symbol for childhood cancer. Each ribbon bears the name of a child who has or has had cancer, and families from across the nation send in their children's names to be part of the tree. This is a powerful symbol that is seen by thousands of people every year.
Passersby are touched by the sheer volume of ribbons and names."
Once this event is complete and tree is taken down the ribbon bearing Raylee's name will be mailed to her.
Tuesday, October 4, 2011
Raylee--Update with Urology
Raylee had a follow-up appointment with Urology today. When they called her name to go back to the patient rooms there were around 5 staff members standing outside of the waiting area. They were surprised to see Raylee so happy and playful. All of them said, 'She must be feeling better; she is so happy!' Raylee was happy and her mission while we were there was to play with all the toys possible. If you have been blessed enough never to have experienced Primary Children's hospital like we have, you must know that in every office, corner, little area, or just anywhere you can fit toys....there are toys. This place if full of every toy imagined. Since Raylee has experienced pretty much every floor and department (expect the burn unit and NICU) she knows when she is there she will be playing. She know calls Primary Children's "Her Hospital." She obviosuly thinks all the staff are there for her and her needs. The great thing about the staff there, they really do make her their focus and love her. They are wonderful as they express their excitement to see her and their happiness that she is feeling so well. They really do make it seems as if they came to work that day just for her--now that really is something remarkable!! Her urologist said she looks as if she has grown. This is true. Raylee has gained weight and has ground taller. Her face and arms are not that of a scrauny child who looks as if they are starving, but one who is filling out. Her cheeks use to be so chubby and would jiggle when she slept in her car seat during a trip in the car.
Prior to visiting the urologist Raylee had an ultrasound on her bladder and kidneys. The results couldn't have been better! Her bladder, larger than normal, is doing great and draining as it should be. Her kidneys look healthy and better than they did a month ago! This is all great news and such a blessing. We do not have to visit Urology for an entire year!! What a releif.
Whenever Raylee has an appointment I notice I experience a type of anxiety and fear that I cannot describe, but it is HELL. In November Raylee will have her first follow-up with Oncology as it will be her 3 month checkup. I am excited for them to see how great she is doing but fear and probably will always fear the CT Scan and all the tests that will be completed to ensure her cancer is not returning. This is my biggest fear. I never want her or my family to go through this again. This checkup will be done every 3 months. Every 3 months I feel as if we will be at God's mercy in a way I never thought I would be.
Prior to visiting the urologist Raylee had an ultrasound on her bladder and kidneys. The results couldn't have been better! Her bladder, larger than normal, is doing great and draining as it should be. Her kidneys look healthy and better than they did a month ago! This is all great news and such a blessing. We do not have to visit Urology for an entire year!! What a releif.
Whenever Raylee has an appointment I notice I experience a type of anxiety and fear that I cannot describe, but it is HELL. In November Raylee will have her first follow-up with Oncology as it will be her 3 month checkup. I am excited for them to see how great she is doing but fear and probably will always fear the CT Scan and all the tests that will be completed to ensure her cancer is not returning. This is my biggest fear. I never want her or my family to go through this again. This checkup will be done every 3 months. Every 3 months I feel as if we will be at God's mercy in a way I never thought I would be.
Saturday, October 1, 2011
Light Up the Holidays with Hope
The American Childhood Cancer Organization sponsors a Christmas tree every year which is decorated in gold ribbons bearing the name of a child who is experiencing or has experienced cancer. This Christmas tree is located in Washington DC. I will definately order Raylee's ribbon, she deserves to have her name placed on this Christmas tree for everyone to see. What an amazing way to spread awareness of Pediatric Cancer---please read the information about this below:
""Light Up the Holidays with Hope" has become our nation’s largest annual childhood cancer awareness event. Each year during the December holiday season, a 23 foot tree is placed in the lobby of a building in Washington DC. The tree is solely decorated with thousands of gold ribbons (the symbol for childhood cancer). Each ribbon bears the name of a child who has, or has had cancer. The tree glitters strong in our nation’s capitol for all to see. Thousands each year are touched as they are reminded of our nation’s youngest cancer patients.
Each year, a lighting ceremony is held to light the tree, honor our cancer children, and enjoy some fun activities with our families and friends."
This information was taken from the ACCO's website: https://www.acco.org
""Light Up the Holidays with Hope" has become our nation’s largest annual childhood cancer awareness event. Each year during the December holiday season, a 23 foot tree is placed in the lobby of a building in Washington DC. The tree is solely decorated with thousands of gold ribbons (the symbol for childhood cancer). Each ribbon bears the name of a child who has, or has had cancer. The tree glitters strong in our nation’s capitol for all to see. Thousands each year are touched as they are reminded of our nation’s youngest cancer patients.
Each year, a lighting ceremony is held to light the tree, honor our cancer children, and enjoy some fun activities with our families and friends."
This information was taken from the ACCO's website: https://www.acco.org
Friday, September 30, 2011
A Message from ACCO
I received a message from the American Childhood Cancer Organization and posted a section of it below. I wanted to share this section with you because the part I bolded made me cry and cry.
"It will be National Childhood Cancer Awareness Month for a few more hours. As we reflect on the activity of the last thirty days, we must admit that we don't feel the momentum slowing at all. Sure, Awareness Month is almost over, but life for those who are dealing with the effects of childhood cancer will not change drastically from September 30th to October 1st. We know that families don't stop dealing with this disease once September is over, so our efforts shouldn't stop either.."
This was written by the ACCO Program Director, Amber Masso.
"It will be National Childhood Cancer Awareness Month for a few more hours. As we reflect on the activity of the last thirty days, we must admit that we don't feel the momentum slowing at all. Sure, Awareness Month is almost over, but life for those who are dealing with the effects of childhood cancer will not change drastically from September 30th to October 1st. We know that families don't stop dealing with this disease once September is over, so our efforts shouldn't stop either.."
This was written by the ACCO Program Director, Amber Masso.
Barbeque with Starbucks!
Tonight we attended a barbeque with HopeKids sponsored by Starbucks and their Community Service partners. There were so many people and kids. It was located at a local park. This event also was like a carnival for kids. They had a bouncy house, games, crafts, cotton candy, and the best part was--a local K-9 police unit was there! There were two K-9 police dogs, one was a 4-year-old German Shepard and named Qunito and belonged to Sgt. Thomas. This dog finds criminals and Sgt. Thomas stated Quinto's reward is biting them when he finds them. The other K-9 was only a few-months-old and it was his 2nd day on the police force. He was the cutiest puppy, a little blood hound who didn't have a name yet. Raylee, Jorja, and I, all just loved this little puppy and Quinto.
Again, it was great to see the girls play and have fun without any worries. Their laughter is growing and growing, as they begin to transition to a more normal, and better, reality.
Again, it was great to see the girls play and have fun without any worries. Their laughter is growing and growing, as they begin to transition to a more normal, and better, reality.
Wednesday, September 28, 2011
Jorja Receives a Trophy for Courage
Raylee received a trophy from SuperSibs today in the mail. It is an actual trophy. On the plauge it says Jorja's name and says "For your Strength, Courage & Love YOU are a SuperSib!" It came with a note thata said:
"Dear SuperSib, In our eyes, YOU are a SUPERSTAR. And for that, you deserve special recognition! in fact, this trophy was made with YOU in mind. We hope it will always be a symbol of strength for YOU-and a reminder of how wonderful you are. With love, SuperSibs"
Jorja is an amazing kid...she is an inspiration of courage. This trophy made Jorja's day. She was beaming when she opened the box it came in. She had dealt with a lot lately and the trophy came on a day she really needed! She had a bad day at school and this morning we had news that our Great Grandma Fuller had passed away last night. She was Jorja's Great-Great Grandma and she was 99-years-old. She lived a full life and was born 2 days after the Titanic sank. Jorja was really sad about this, she thought Grandma Fuller was very interesting.
A note came with the trophy and asked us to send a picture of Jorja holding the trophy to SuperSibs!
"Dear SuperSib, In our eyes, YOU are a SUPERSTAR. And for that, you deserve special recognition! in fact, this trophy was made with YOU in mind. We hope it will always be a symbol of strength for YOU-and a reminder of how wonderful you are. With love, SuperSibs"
Jorja is an amazing kid...she is an inspiration of courage. This trophy made Jorja's day. She was beaming when she opened the box it came in. She had dealt with a lot lately and the trophy came on a day she really needed! She had a bad day at school and this morning we had news that our Great Grandma Fuller had passed away last night. She was Jorja's Great-Great Grandma and she was 99-years-old. She lived a full life and was born 2 days after the Titanic sank. Jorja was really sad about this, she thought Grandma Fuller was very interesting.
A note came with the trophy and asked us to send a picture of Jorja holding the trophy to SuperSibs!
Saturday, September 24, 2011
Wasatch Adventure
Way to go Raylee's team!! We had 9 team members and raised $150 to donate to HopeKids! Several team members were able to attend the Wasatch Adventure with us. We would like to give a heart felt thanks to all Raylee's team members. The Wasatch Adventure was at Fort Douglas in Salt Lake City. It was a beautiful sunny cool day. Jerry and I did not know what to expect from the Wasatch Adventure since this was our first experience. We have never participated in any type of cancer walks before. Next year we plan on marketing this better since we know what to expect and know what it is about. So anyone interested in participating with us next year...get ready! :)
The Wasatch Adventure was like a carnival for kids. They had several giant bouncy houses, music, snowcones, cotton candy, popcorn, pizza, and games for kids to play. They had several team mascots such as the lion form Real Salt Lake soccer team and the Hawk from the University of Utah. They also had Miss Utah and Miss Arizona. There were characters walking around such as Disney Princesses, Tinkerbell, and Batman. It was amazing! It was amazing to hear my girls just laugh and laugh. Raylee would not leave the bouncy house. She was so happy and having so my fun, even though she was really tired she kept jumping and going down the slide in the bouncy house. She was an animal!! My nephew also joined us and him and Jorja were buddies as they bounced away and tired themselves out.
It was such a peaceful feeling inside to hear Raylee laughing like she was....I am grateful the Wasatch Adventure was able to bring this out.
The Wasatch Adventure is designed for the kid, but really we are all kids so everyone can have fun. They have a 5K race, 5K walk, and Adventure Walk (1 mile). Next year I want to be conditioned to participate in the 5K race!!
There was a giant poster to place a picture of your HopeKid on it....I definately placed a picture of Raylee on it! She definately is an inspiration of HOPE!
The Wasatch Adventure was like a carnival for kids. They had several giant bouncy houses, music, snowcones, cotton candy, popcorn, pizza, and games for kids to play. They had several team mascots such as the lion form Real Salt Lake soccer team and the Hawk from the University of Utah. They also had Miss Utah and Miss Arizona. There were characters walking around such as Disney Princesses, Tinkerbell, and Batman. It was amazing! It was amazing to hear my girls just laugh and laugh. Raylee would not leave the bouncy house. She was so happy and having so my fun, even though she was really tired she kept jumping and going down the slide in the bouncy house. She was an animal!! My nephew also joined us and him and Jorja were buddies as they bounced away and tired themselves out.
It was such a peaceful feeling inside to hear Raylee laughing like she was....I am grateful the Wasatch Adventure was able to bring this out.
The Wasatch Adventure is designed for the kid, but really we are all kids so everyone can have fun. They have a 5K race, 5K walk, and Adventure Walk (1 mile). Next year I want to be conditioned to participate in the 5K race!!
There was a giant poster to place a picture of your HopeKid on it....I definately placed a picture of Raylee on it! She definately is an inspiration of HOPE!
Friday, September 23, 2011
CIRCUS Time!!
Today Raylee and Jorja went to the Ringling Brothers Barnum & Bailey circus with their Grandma Patty. They were given tickets from HopeKids! They were able to participate in a preshow with HopeKids which allowed them to meet many of the performers and be close to the performing animals. They witnessed an elephant painting a picture. This event brought an excited anticipation within my girls...and their grandma :) They had a blast! This was an experience they will never forget and they are still talking about it!
Thursday, September 22, 2011
Barbeque with the Bikers for Christ
This evening we attended a barbeque with HopeKids sponsored by the Bikers for Christ. It was at a local park and was a lot of fun. They had many many Harley Davidson motorcylces which of course made Jerry drool. They also had a mini car show with a lot of '69 Chevy Camaros and '69 Chevelles which made me drool. :)
Every day I am amazed at all the people and groups who reach out trying to ease what all the HopeKids families are going through or have gone through. It hasn't been easy. It seems like going through Raylee's cancer happened so fast and I thought I had dealt with all the emotions from it, but I haven't. I have been really depressed from it, some of it may be that I am really exhausted. It seems like it is catching up to me now. But having something to go to like barbeque sponsored by a group of people because they care and want to make a differce ignites my energy and hope that all will be well. It is true, there are people all around taking action to make this world an easier and better place. I am truly humbled and grateful for these people and the director's of HopeKids who organize these things. Tomorrow the girls are going to the circus with HopeKids, something we wouldn't be able to purchase right now due to the financial strain of medical expenses.
All these great events and experiences are certainly educating me on many groups or organizations whom serve others, such as Bikers for Christ. In the Bikers for Christ's Statement of Faith it states, "We believe that love is more important than the most spectacular gifts, and without this love all exercise of spiritual gifts is worthless." If you would like to check out more about this group go to www.bikersforchrist.org
Every day I am amazed at all the people and groups who reach out trying to ease what all the HopeKids families are going through or have gone through. It hasn't been easy. It seems like going through Raylee's cancer happened so fast and I thought I had dealt with all the emotions from it, but I haven't. I have been really depressed from it, some of it may be that I am really exhausted. It seems like it is catching up to me now. But having something to go to like barbeque sponsored by a group of people because they care and want to make a differce ignites my energy and hope that all will be well. It is true, there are people all around taking action to make this world an easier and better place. I am truly humbled and grateful for these people and the director's of HopeKids who organize these things. Tomorrow the girls are going to the circus with HopeKids, something we wouldn't be able to purchase right now due to the financial strain of medical expenses.
All these great events and experiences are certainly educating me on many groups or organizations whom serve others, such as Bikers for Christ. In the Bikers for Christ's Statement of Faith it states, "We believe that love is more important than the most spectacular gifts, and without this love all exercise of spiritual gifts is worthless." If you would like to check out more about this group go to www.bikersforchrist.org
Sunday, September 18, 2011
Slow Dance
This poem was written by a terminally ill young teenage girl in a New York Hospital.
SLOW DANCE
Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.
Do you run through each day
On the fly?
When you ask How are you?
Do you hear the reply?
When the day is done
Do you lie in your bed
With the next hundred chores
Running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.
Ever told your child,
We'll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say,'Hi'
You'd better slow down.
Don't dance so fast.
Time is short..
The music won't last..
When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.
-------------------------------------
My friend sent me this poem in an e-mail which is meant to be forward through e-mail but I really wanted to post it on the blog. When I was reading this e-mail I would read a little and walk away and cry, then read a little and walk away and cry. It really pulled at my heartstrings and buts life in a perspective. I hope it touches you and you get the message this young girl is sharing.
Best Regards,
Melissa
SLOW DANCE
Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.
Do you run through each day
On the fly?
When you ask How are you?
Do you hear the reply?
When the day is done
Do you lie in your bed
With the next hundred chores
Running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.
Ever told your child,
We'll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say,'Hi'
You'd better slow down.
Don't dance so fast.
Time is short..
The music won't last..
When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.
-------------------------------------
My friend sent me this poem in an e-mail which is meant to be forward through e-mail but I really wanted to post it on the blog. When I was reading this e-mail I would read a little and walk away and cry, then read a little and walk away and cry. It really pulled at my heartstrings and buts life in a perspective. I hope it touches you and you get the message this young girl is sharing.
Best Regards,
Melissa
Saturday, September 17, 2011
Hats Off For Cancer
Raylee received a Tinkerbell ball cap in the mail from "Hats Off For Cancer." This is a international organization that has given more than one million children around the globe a since 1996. How incredible and creative! What an amazing thing to do. When Raylee received her hat she was smiling and happy. She felt sooooo special. The hat is too big and drowns her, but she didn't care. She wore it proudly, and I wouldn't have expected anything less from her.
We also received a letter from NENA (Neuroblastoma Epidemiology in North America) based at the University of North Carolina Gillings School of Global Public Health. The letter stated Raylee has an opportunity to help provide knowledge about neuroblastoma by being part of a research study. Since Raylee is part of a study by the COG (Children's Oncology Group) she is part of the CCRN (Childhood Cancer Research Network's) registry. This means her name and my contact information will be shared with other pediatric cancer research studies. We will receive additional information about this study soon and then we can decide if we want to be part of it. We basically decided that all these studies will want a part if her tumor to study. We already allowed the COG to have the tumor and the piece from her biopsy. They also have a sample of her bone marrow, bone, and blood. This is one way we are able to help pediatric cancer researchers to help prevent neuroblastoma, find better treatment, or just help the medical professionals understand this horrible disease better. A "horrible disease" isn't the best way to describe what I feel about cancer, I am sure you know I hate it, but to put it into written words will cause me to use inappropriate language. I haven't hated something with everything I am for a really long time. But I really hate cancer! I hate what it did to my daughter, and what its mission was to do! I hate what if does to other people. I hate the treatment.for cancer Andrews how it makes the patient so sick. I hate watching people who are doing things to increase their chances of getting cancer like smoking, drinking, not eating well nor being active. When I see someone smoking I wonder if they really know what could be going on inside of them, I wonder if they really know what cancer is capable of. I want to reduce my chances of getting this, I want to reduce the chances of my family getting this again. Some cancers, like Raylee's, is unavoidable--but those cancers that are avoidable--I want to avoid.
We also received a letter from NENA (Neuroblastoma Epidemiology in North America) based at the University of North Carolina Gillings School of Global Public Health. The letter stated Raylee has an opportunity to help provide knowledge about neuroblastoma by being part of a research study. Since Raylee is part of a study by the COG (Children's Oncology Group) she is part of the CCRN (Childhood Cancer Research Network's) registry. This means her name and my contact information will be shared with other pediatric cancer research studies. We will receive additional information about this study soon and then we can decide if we want to be part of it. We basically decided that all these studies will want a part if her tumor to study. We already allowed the COG to have the tumor and the piece from her biopsy. They also have a sample of her bone marrow, bone, and blood. This is one way we are able to help pediatric cancer researchers to help prevent neuroblastoma, find better treatment, or just help the medical professionals understand this horrible disease better. A "horrible disease" isn't the best way to describe what I feel about cancer, I am sure you know I hate it, but to put it into written words will cause me to use inappropriate language. I haven't hated something with everything I am for a really long time. But I really hate cancer! I hate what it did to my daughter, and what its mission was to do! I hate what if does to other people. I hate the treatment.for cancer Andrews how it makes the patient so sick. I hate watching people who are doing things to increase their chances of getting cancer like smoking, drinking, not eating well nor being active. When I see someone smoking I wonder if they really know what could be going on inside of them, I wonder if they really know what cancer is capable of. I want to reduce my chances of getting this, I want to reduce the chances of my family getting this again. Some cancers, like Raylee's, is unavoidable--but those cancers that are avoidable--I want to avoid.
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