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."
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