There are so many ups and downs in this journey with Cancer.... we feel like we live on a perpetual roller coaster! One minute Ryan is playing and laughing and having fun (just like any little six year old boy should be doing), and the next minute he is laying on the couch, exhausted from that few minutes of play.
We go for days where it is a constant battle to get him to eat just a few bites of food each day... then all of a sudden, one morning he wakes up and ASKS for food. It is a celebration when he voluntarily eats anything! One of the very important aspects of this fight is Ryan HAS to stay hydrated. The chemo drugs destroy kidneys and it is extremely important for him to drink A LOT. It has gotten to the point that after chemo for a few days, Ry will not drink anything, so we have to give him IV fluids at night. He is hooked up for ten hours to the IV, and I sleep in the room with him on an air mattress so I can help him go to the bathroom in the night.
We live in anticipation of his lab results. Twice a week his home health nurse, Scott, comes and draws blood to test. Those days are full of anxiety.... our life so much revolves around the results. If the counts are good, we can do things out of the house with Ryan... we can go out to eat, or go swimming (which Ry LOVES to do). We can have a friend over to play, or he can go play with his cousins, who he misses so much. Another plus to having good counts is we get to stop the dreaded POKEY! Ryan prays for good counts so he can have a few days without that shot!
On the other hand, if his counts are low, the shots continue. And, more often than not, we have to go to PCMC for a blood transfusion.
We are constantly concerned about any virus that is going around, and if Ryan will pick it up if he goes out to dinner, or even to Walmart. There have been many days that his cousin Bailey has not been able to come (I watch Bailey so her mom and dad can work) because of a runny nose or a cough. Abby is sick right now with a fever and cough, and she can not be around Ryan for a week. Ry is catching a cold right now himself. He is congested, runny nose, cough, but no fever. Every hour I take his temperature to make sure he is still fever free.
We have to make sure that Ry doesn't do anything that could cause a fall or him to cut himself. He can not ride his scooter or bike, he can not even run because his legs are so unstable due to the location of the tumor on his spine. It hurts to see him not being able to be a normal little six year old. He was such an active little guy before this started. He looks outside and wishes he could go outside with his cousins, or just play in the yard in the snow and build a snowman. It angers me that he can not do all the things little boys love to do.
Through the ups and downs of this battle, Ryan keeps smiling. He throws up one minute and the next is laughing like it never happened. He keeps a positive attitude and is a constant source of strength for me. If he can keep smiling and going about living and not complaining, who am I to feel down and defeated? When I feel despair and just want to cry in frustration... he will hug me and tell me "Gramma, it's ok... I will feel better really soon."
I thank God for this little hero of ours. He has taught me so many valuable lessons on how to survive and how to trust. When you say your prayers for Ryan... please say a Thank You to God for being with him every minute and for making Ryan a warrior in this battle. We all appreciate the prayers and support from everyone. Thank you for being with us.
Thursday, February 28, 2013
Saturday, February 23, 2013
My stomach has knots, and my head is going a mile a minute this weekend. Monday Ryan starts his radiation treatments. His tattoos are in place, his scans have been done, and the Doctors know where and what they are going to do.
My job will be to make sure he gets to his appointments on time. 8:30 am every day, Monday through Friday at the Huntsman Cancer Institute in Salt Lake City, Utah. He can not eat or drink anything before his treatment, as they are going to put him under anesthesia. One of the small miracles we have been blessed with in time for the daily commute to SLC is that we were able to purchase a reliable car for very little money. Being a one car family has taken its toll with all the extra trips we have had to make to the hospitals, and God blessed us with transportation.
I am worried about the combination of chemo and radiation treatment at the same time. Ryan has been so sick and barely able to eat after this last five day round of chemo, I worry about how much worse it will be when the effects of radiation start, too. One side effect will be that his esophagus will be burned, and he will be unable to swallow. He will have a feeding tube in his stomach. This will be a good thing in the respect that I will be able to make sure he is getting his meds, and he will be getting nutrition that he currently is not getting. I just hate to see him have to go through one more invasive procedure. I hate to see him have to deal with just one more "thing."
They will access his port on Monday and leave it accessed all week to make it easier to give him the anesthesia. Ryan loves his bubble baths every day, he tells me all day all the things he is going to make with the bubbles that night, lol. With his port accessed he will not be able to have those baths. It will be sponge baths all week instead. On the days that his blood counts are good, we have been taking him to the pool... with his port accessed, he will not be able to swim. To take away these small things that he loves just breaks my heart.
I am concerned about the radiation burns. They have been described as the best case being like severe sun burn... and at worst case burning the tissue and having open burn sores. Ryans radiation will be through his chest from the front and from the sides under his arm pits. I pray the burns will not be significant and that I will be able to treat them so they are not painful for him.
I am worried that his lungs will be affected and that he will need oxygen. This is a possibility, but not a for sure thing. There are so many things that are happening and that "may" happen right now, I am worried that I will not be able give him the care that he so needs and deserves.
As we face this next step in the battle, please pray for Ryan and his strength. Please pray that radiation will go well and be as easy as possible. And please, please... pray for me, as well. Pray that I will be able to be strong enough to face what is coming and that I will be able to do for Ryan the very best possible. I know that God is with us.. I am shown this every day. I love you all!
My job will be to make sure he gets to his appointments on time. 8:30 am every day, Monday through Friday at the Huntsman Cancer Institute in Salt Lake City, Utah. He can not eat or drink anything before his treatment, as they are going to put him under anesthesia. One of the small miracles we have been blessed with in time for the daily commute to SLC is that we were able to purchase a reliable car for very little money. Being a one car family has taken its toll with all the extra trips we have had to make to the hospitals, and God blessed us with transportation.
I am worried about the combination of chemo and radiation treatment at the same time. Ryan has been so sick and barely able to eat after this last five day round of chemo, I worry about how much worse it will be when the effects of radiation start, too. One side effect will be that his esophagus will be burned, and he will be unable to swallow. He will have a feeding tube in his stomach. This will be a good thing in the respect that I will be able to make sure he is getting his meds, and he will be getting nutrition that he currently is not getting. I just hate to see him have to go through one more invasive procedure. I hate to see him have to deal with just one more "thing."
They will access his port on Monday and leave it accessed all week to make it easier to give him the anesthesia. Ryan loves his bubble baths every day, he tells me all day all the things he is going to make with the bubbles that night, lol. With his port accessed he will not be able to have those baths. It will be sponge baths all week instead. On the days that his blood counts are good, we have been taking him to the pool... with his port accessed, he will not be able to swim. To take away these small things that he loves just breaks my heart.
I am concerned about the radiation burns. They have been described as the best case being like severe sun burn... and at worst case burning the tissue and having open burn sores. Ryans radiation will be through his chest from the front and from the sides under his arm pits. I pray the burns will not be significant and that I will be able to treat them so they are not painful for him.
I am worried that his lungs will be affected and that he will need oxygen. This is a possibility, but not a for sure thing. There are so many things that are happening and that "may" happen right now, I am worried that I will not be able give him the care that he so needs and deserves.
As we face this next step in the battle, please pray for Ryan and his strength. Please pray that radiation will go well and be as easy as possible. And please, please... pray for me, as well. Pray that I will be able to be strong enough to face what is coming and that I will be able to do for Ryan the very best possible. I know that God is with us.. I am shown this every day. I love you all!
Sunday, February 17, 2013
I want today to give a big shout out to the awesome men and women that help our heroes fight the fight. For the past five days I have been with Ryan at Primary Children's Medical Center in Salt Lake City, Utah.
Children's hospitals have to be some of the saddest places on the face of this earth. It is heart wrenching to be walking down the hall and hear the hurt, frightful cries of an infant. It is so painful to see the little children being pulled in wagons throughout the hospital, IV bags in tow. I do not know what each little person's story is, but I do know that the story is horrendous. I see the fatigue and fear on the faces of the parents, I witness the tearful hugs in the hallway between people that love and are so worried about the patient in the room nearby. I meet the caregivers that have stumbled down the hall to find the restroom in the middle of the night, sleep in their eyes and worry lines on their foreheads. These hospitals are full of exhausted people, both physically and mentally exhausted.
I will mention the doctors first. These men and women have so much compassion for these children. They are very professional and yet very caring. Always they let the children know they are the most important thing. Ryan has a whole team of doctors, and we are never sure which one he will see when he is admitted. That does not matter at all, every doctor on his team works as a team to make decisions, to read scans, to decide on the best course of treatment for him. Every one of them always has a kind word of encouragement for me, and for Ryan, as well. Ryan's favorite is Dr Luke. He always has a smile on his face, he always has time to tease a little with Ryan. He always has a joke to share.
Then I see the nurses. The angels on earth that have to see these children suffer day in and day out. They have to administer the drugs that make them so sick. They have to clean the vomit the drugs induce. And they do this with smiles on their faces, laughter in their voices and joy in their eyes. They have to do things that they know hurt, that they know will be uncomfortable, yet they do them with precision and compassion. They make it as easy on the children as is humanly possible. They quickly and professionally go about the job of nursing and always have a word of encouragement for the kids and parents. They always have a laugh and a joke ready to make a child smile and giggle. They never let the sadness and despair overcome them. Ryan's nurses come in his room... always with a smile, always with a "How's it going, buddy?" They take the time to talk to him and ask him about the game he is playing, the story he is reading, just about him in general. They take the time to explain to him what it is they have to do... they take the time to distract him if it is going to be uncomfortable. For this I am so grateful! It makes my role as caregiver so much easier and more pleasant. The nurses and aides never leave the room without asking me if there is anything they can do to make me more comfortable. They are AMAZING!
Next are the Child Life Volunteers. They are there at a moments notice to do anything the child feels like doing. They come in and play xbox, they bring craft projects, they bring monopoly and sit with the child and play for hours. They are there to stay with the children and give the caregivers a much needed break, to eat, to just take a walk. Always they are fun! A special volunteer that has helped Ryan is Meagan... she brings in an Ipod when he has his port accessed and holds it up so he can play Angry Birds. She holds his hand and he plays with the other hand, and is distracted enough that the nurse can get the port accessed with a minimum of trouble. The volunteers brought in Valentines for Ryan.... LOTS of Valentines! They made what would have been a hard day to be in the hospital one that he loved. He asked me if we can be here next Valentine's Day, too!
The social workers are wonderful. They are here to offer any type of support that may be needed. They answer financial questions, and help find financial aide. They offer emotional support and therapy. They just show every visit that they are truly concerned and on our side. It is really nice to know that their support is here for us. Often we are so overwhelmed with it all that it is just nice to have a friendly person to talk with.
I can not leave out the Animal Volunteers and their handlers that come and visit the kids. The smiles you see on the children's faces when that dog or cat walks in the room is priceless. Ryan just lights up when the puppies come in to visit. Anything that can distract, even for a few minutes, the crap the kids have to face is wonderful. You can not put a value on that. The animals are awesome.
As I walk out to go to the restroom or to the elevators to go to the cafeteria, there is a gathering space that has a piano and comfortable chairs for visitors to take a break and relax. There are volunteers that play the piano, or sing, or play a violin. The music is beautiful and it is so nice to take a minute and just listen and relax. It gives me a moment to unwind and to know that God is with me and Ryan. No matter how stressed we get, God gives us something beautiful, like music, to reflect on. These volunteers give selflessly of their time to make this beautiful music, and I wonder if they know what a blessing they are.
There are people that donate blankets, stuffed animals, and pillowcases for the patients. We never know where these little things have come from, but they make a world of difference in the children's lives. It is so nice to have a soft, warm blanket to snuggle in... instead of the more utilitarian blankets the hospital uses. It is fun to have a bright, cheerful pillowcase to lay your head on. The kids get to keep the blankets and pillowcases and it is just a reminder to them that someone loves them.
I have to mention the kitchen staff.... the ones that prepare and deliver the room service food for the kids. They answer the phone very cheerfully, asking "What can we make Ryan today?" They take the time to do little details that make the food more enjoyable. Every morning there is a joke on the tray, and Ryan looks forward every day to see what the joke today will be. It is the little things like a joke that make this bearable for the kids.
So, no matter how rigorous and exhausting a five day chemo therapy stay is, it is always made much more pleasant by the heroes around us that care. When you say your prayers for Ryan, please Thank God for these special men and women that are in our lives. I will forever be grateful for the service they have given us.
Children's hospitals have to be some of the saddest places on the face of this earth. It is heart wrenching to be walking down the hall and hear the hurt, frightful cries of an infant. It is so painful to see the little children being pulled in wagons throughout the hospital, IV bags in tow. I do not know what each little person's story is, but I do know that the story is horrendous. I see the fatigue and fear on the faces of the parents, I witness the tearful hugs in the hallway between people that love and are so worried about the patient in the room nearby. I meet the caregivers that have stumbled down the hall to find the restroom in the middle of the night, sleep in their eyes and worry lines on their foreheads. These hospitals are full of exhausted people, both physically and mentally exhausted.
I will mention the doctors first. These men and women have so much compassion for these children. They are very professional and yet very caring. Always they let the children know they are the most important thing. Ryan has a whole team of doctors, and we are never sure which one he will see when he is admitted. That does not matter at all, every doctor on his team works as a team to make decisions, to read scans, to decide on the best course of treatment for him. Every one of them always has a kind word of encouragement for me, and for Ryan, as well. Ryan's favorite is Dr Luke. He always has a smile on his face, he always has time to tease a little with Ryan. He always has a joke to share.
Then I see the nurses. The angels on earth that have to see these children suffer day in and day out. They have to administer the drugs that make them so sick. They have to clean the vomit the drugs induce. And they do this with smiles on their faces, laughter in their voices and joy in their eyes. They have to do things that they know hurt, that they know will be uncomfortable, yet they do them with precision and compassion. They make it as easy on the children as is humanly possible. They quickly and professionally go about the job of nursing and always have a word of encouragement for the kids and parents. They always have a laugh and a joke ready to make a child smile and giggle. They never let the sadness and despair overcome them. Ryan's nurses come in his room... always with a smile, always with a "How's it going, buddy?" They take the time to talk to him and ask him about the game he is playing, the story he is reading, just about him in general. They take the time to explain to him what it is they have to do... they take the time to distract him if it is going to be uncomfortable. For this I am so grateful! It makes my role as caregiver so much easier and more pleasant. The nurses and aides never leave the room without asking me if there is anything they can do to make me more comfortable. They are AMAZING!
Next are the Child Life Volunteers. They are there at a moments notice to do anything the child feels like doing. They come in and play xbox, they bring craft projects, they bring monopoly and sit with the child and play for hours. They are there to stay with the children and give the caregivers a much needed break, to eat, to just take a walk. Always they are fun! A special volunteer that has helped Ryan is Meagan... she brings in an Ipod when he has his port accessed and holds it up so he can play Angry Birds. She holds his hand and he plays with the other hand, and is distracted enough that the nurse can get the port accessed with a minimum of trouble. The volunteers brought in Valentines for Ryan.... LOTS of Valentines! They made what would have been a hard day to be in the hospital one that he loved. He asked me if we can be here next Valentine's Day, too!
The social workers are wonderful. They are here to offer any type of support that may be needed. They answer financial questions, and help find financial aide. They offer emotional support and therapy. They just show every visit that they are truly concerned and on our side. It is really nice to know that their support is here for us. Often we are so overwhelmed with it all that it is just nice to have a friendly person to talk with.
I can not leave out the Animal Volunteers and their handlers that come and visit the kids. The smiles you see on the children's faces when that dog or cat walks in the room is priceless. Ryan just lights up when the puppies come in to visit. Anything that can distract, even for a few minutes, the crap the kids have to face is wonderful. You can not put a value on that. The animals are awesome.
As I walk out to go to the restroom or to the elevators to go to the cafeteria, there is a gathering space that has a piano and comfortable chairs for visitors to take a break and relax. There are volunteers that play the piano, or sing, or play a violin. The music is beautiful and it is so nice to take a minute and just listen and relax. It gives me a moment to unwind and to know that God is with me and Ryan. No matter how stressed we get, God gives us something beautiful, like music, to reflect on. These volunteers give selflessly of their time to make this beautiful music, and I wonder if they know what a blessing they are.
There are people that donate blankets, stuffed animals, and pillowcases for the patients. We never know where these little things have come from, but they make a world of difference in the children's lives. It is so nice to have a soft, warm blanket to snuggle in... instead of the more utilitarian blankets the hospital uses. It is fun to have a bright, cheerful pillowcase to lay your head on. The kids get to keep the blankets and pillowcases and it is just a reminder to them that someone loves them.
I have to mention the kitchen staff.... the ones that prepare and deliver the room service food for the kids. They answer the phone very cheerfully, asking "What can we make Ryan today?" They take the time to do little details that make the food more enjoyable. Every morning there is a joke on the tray, and Ryan looks forward every day to see what the joke today will be. It is the little things like a joke that make this bearable for the kids.
So, no matter how rigorous and exhausting a five day chemo therapy stay is, it is always made much more pleasant by the heroes around us that care. When you say your prayers for Ryan, please Thank God for these special men and women that are in our lives. I will forever be grateful for the service they have given us.
Friday, February 15, 2013
Ugly side of cancer...
This post today will not be pretty. It will not be about cute bald heads and beautiful, brave smiles. It will be about the reality... the ugly and horrific side of childhood cancer.
Last night, I spent the night rubbing Ryan's legs and arm. He woke up out of a sound sleep, crying out in pain and begging me to take that pain away. He had agonizing pain in both legs and his left arm. I quickly called the nurse to get meds to combat the pain, put heating pads on his legs and sat on his bed rubbing where he hurt. Ryan thrashed around the bed, crying and begging me to help him.
The nurse came in with medicine, and I continued rubbing and singing to him to calm him down. While taking pain meds, Ryan started gagging and said his stomach hurt, so the nurse went for nausea meds, too. Soon the pain meds kicked in and Ryan settled a little, and when the nausea med took effect, he started having hallucinations. He was seeing "things" moving on the walls, coming close to his bed... he was seeing "force sheilds" surrounding me and he told me not to move, afraid that I would be hurt. Ryan was terrified.
This is just one night in this brutal fight. It is getting harder and harder to stay positive and upbeat.. although, I will do my best, with God's help, to stay strong.
Ryan is not alone in this fight for life. There are children everywhere that are suffering this same thing. Cancer knows no boundary... not economic, ethnic, or age. Children are dying every day from this beast called Cancer. Please take a few minutes and watch this video. See what cancer REALLY is. Please pray for all the children in this battle. Pray for the families that are doing everything they can to help their warriors.
http://www.youtube.com/watch?v=asKxvi-JbIE
Thank you for being here for us all through this war. You do bring us strength and peace. Continue praying for us, and we will continue thanking God that you are with us and for us.
We do have something to celebrate this morning. As I was finishing this blog, the doctor came in with the scan results from yesterday. Ryan's tumor appears to be shrinking and the chemo is doing what it needs to do. At least we know that progress is being made in the fight! May God stay with us and give us the strength and fortitude to keep on fighting!
This post today will not be pretty. It will not be about cute bald heads and beautiful, brave smiles. It will be about the reality... the ugly and horrific side of childhood cancer.
Last night, I spent the night rubbing Ryan's legs and arm. He woke up out of a sound sleep, crying out in pain and begging me to take that pain away. He had agonizing pain in both legs and his left arm. I quickly called the nurse to get meds to combat the pain, put heating pads on his legs and sat on his bed rubbing where he hurt. Ryan thrashed around the bed, crying and begging me to help him.
The nurse came in with medicine, and I continued rubbing and singing to him to calm him down. While taking pain meds, Ryan started gagging and said his stomach hurt, so the nurse went for nausea meds, too. Soon the pain meds kicked in and Ryan settled a little, and when the nausea med took effect, he started having hallucinations. He was seeing "things" moving on the walls, coming close to his bed... he was seeing "force sheilds" surrounding me and he told me not to move, afraid that I would be hurt. Ryan was terrified.
This is just one night in this brutal fight. It is getting harder and harder to stay positive and upbeat.. although, I will do my best, with God's help, to stay strong.
Ryan is not alone in this fight for life. There are children everywhere that are suffering this same thing. Cancer knows no boundary... not economic, ethnic, or age. Children are dying every day from this beast called Cancer. Please take a few minutes and watch this video. See what cancer REALLY is. Please pray for all the children in this battle. Pray for the families that are doing everything they can to help their warriors.
http://www.youtube.com/watch?v=asKxvi-JbIE
Thank you for being here for us all through this war. You do bring us strength and peace. Continue praying for us, and we will continue thanking God that you are with us and for us.
We do have something to celebrate this morning. As I was finishing this blog, the doctor came in with the scan results from yesterday. Ryan's tumor appears to be shrinking and the chemo is doing what it needs to do. At least we know that progress is being made in the fight! May God stay with us and give us the strength and fortitude to keep on fighting!
Sunday, February 10, 2013
Gratitude!
This fight is ugly. It is harsh. It is bitter. There are many ways to describe the battle with cancer, but one description you seldom hear is gratitude. It is so easy to dwell on the harsh realities. Only see the pain and the sickness. It breaks my heart to watch Ryan as he gets his port accessed. To hear his cries and see the fear in his eyes, even though he is being so brave and holding so still. It kills me a little more each time he is throwing up, unable to keep even water down. There are many things that hurt me as I watch him struggle. It is so easy to get caught up in those things, and to lose hope and faith that this little boy will be strong again.
There are, however, very many things to give thanks for in this fight. I give thanks for Ryan himself. To see the courage our boy exhibits every day makes me so grateful that we have him in our lives. If he can muster a smile when he is exhausted, or can manage a giggle when he is being sick, can not I, who has health, smile and giggle with him?
It is so hard to watch the doctors and nurses fill his little body with poison, knowing that the side effects alone can kill him, and yet know that through these drugs, he will have a chance at life. I am grateful for the drugs. I am grateful for the same doctors and nurses that do everything in their power to make things as easy on Ryan as they possibly can. I am thankful for the nurses that keep smiles on their faces and laughter in their eyes, even when they see and have to deal with the unthinkable. It takes a remarkable type of person to be a children's oncology nurse. I will forever be grateful for their strength.
I am grateful for all the people that have come into our lives to help us with this battle. The prayer warriors, the ones that have contributed to our fund raising efforts, the ones that just plain out CARE. There are many angels out there and no words can express my thankfullness to them.
I am thankful for God himself. I praise God that I am strong enough to help Ryan... and that He keeps Ryan strong enough to fight. I am grateful to God for the little things in our lives that give us pleasure and divert us from the attrocities we face. I am grateful for sunsets... for sunshiney days... for the picture of a snowman in Arizona that brought a smile to Ryan's face. I am grateful for the music and the children's songs that Ryan delights in singing and having sung to him. I am thankful that no matter what obstacle comes our way, God comes through for us and helps us overcome. We were in desperate need of another car before Ryan started radiation. We were able to purchase one that will fit our needs, and I know it was God that brought us that opportunity and the means with which to buy it.
I am grateful for my children, Ryan's parents and aunts and uncles. Without them, this fight would be unbearable. They give us both strength daily and they are all there to fill any needs that we may have. This is a fight for the entire family and it gives me much strength to know they are all there right along side of us.
Please take a minute today.... look at the obstacles in your own lives. Then open your eyes and see the Glory of God all around you. We all have battles in life, we all have trials. But know that God is with you, He will never give you more than you can do, because He will equip you. May you all have a Blessed Sunday!
This fight is ugly. It is harsh. It is bitter. There are many ways to describe the battle with cancer, but one description you seldom hear is gratitude. It is so easy to dwell on the harsh realities. Only see the pain and the sickness. It breaks my heart to watch Ryan as he gets his port accessed. To hear his cries and see the fear in his eyes, even though he is being so brave and holding so still. It kills me a little more each time he is throwing up, unable to keep even water down. There are many things that hurt me as I watch him struggle. It is so easy to get caught up in those things, and to lose hope and faith that this little boy will be strong again.
There are, however, very many things to give thanks for in this fight. I give thanks for Ryan himself. To see the courage our boy exhibits every day makes me so grateful that we have him in our lives. If he can muster a smile when he is exhausted, or can manage a giggle when he is being sick, can not I, who has health, smile and giggle with him?
It is so hard to watch the doctors and nurses fill his little body with poison, knowing that the side effects alone can kill him, and yet know that through these drugs, he will have a chance at life. I am grateful for the drugs. I am grateful for the same doctors and nurses that do everything in their power to make things as easy on Ryan as they possibly can. I am thankful for the nurses that keep smiles on their faces and laughter in their eyes, even when they see and have to deal with the unthinkable. It takes a remarkable type of person to be a children's oncology nurse. I will forever be grateful for their strength.
I am grateful for all the people that have come into our lives to help us with this battle. The prayer warriors, the ones that have contributed to our fund raising efforts, the ones that just plain out CARE. There are many angels out there and no words can express my thankfullness to them.
I am thankful for God himself. I praise God that I am strong enough to help Ryan... and that He keeps Ryan strong enough to fight. I am grateful to God for the little things in our lives that give us pleasure and divert us from the attrocities we face. I am grateful for sunsets... for sunshiney days... for the picture of a snowman in Arizona that brought a smile to Ryan's face. I am grateful for the music and the children's songs that Ryan delights in singing and having sung to him. I am thankful that no matter what obstacle comes our way, God comes through for us and helps us overcome. We were in desperate need of another car before Ryan started radiation. We were able to purchase one that will fit our needs, and I know it was God that brought us that opportunity and the means with which to buy it.
I am grateful for my children, Ryan's parents and aunts and uncles. Without them, this fight would be unbearable. They give us both strength daily and they are all there to fill any needs that we may have. This is a fight for the entire family and it gives me much strength to know they are all there right along side of us.
Please take a minute today.... look at the obstacles in your own lives. Then open your eyes and see the Glory of God all around you. We all have battles in life, we all have trials. But know that God is with you, He will never give you more than you can do, because He will equip you. May you all have a Blessed Sunday!
Tuesday, February 5, 2013
I so wish I knew what the future holds. I have never been one to worry about what tomorrow will bring, being content to live for today.... knowing that, no matter what was down the road, I would be fine.
There are so many unknown factors in the battle of cancer. Even the day today factors.... will Ryan eat today? Will Ryan feel good enough to go out of the house? Will Ryan's counts be good enough for him to participate in a scheduled activity? The unknowns that affect us day to day are overwhelming. It is hard to make any plans, to anticipate any event. We never know if today is the day he will have to be rushed down to Primary's for a blood transfusion, or if today is the day he will develope a fever out of nowhere and have to rush to the hospital for that.
We live in anticipation for the results of his labs that are done twice a week. They determine if Ryan will be able to go out to dinner with the family, or even to the grocery store. If his counts are good, he can go swimming, an activity that he dearly loves. It is so hard not to know from day to day what he will be able to do.
Yesterday his home health nurse was here to do labs, and he asked about radiation treatments. Ryan's radiation is scheduled to start on Feb 25. We were told of some quite serious side effects to expect from the radiation when we went to his initial radiology appointment a couple of weeks ago. I guess it really did not hit home with me until yesterday while talking with Scott, Ryans nurse. It is so easy to think... yes, that could happen, but it WONT happen to us. Now the unknown of just what will happen is almost unbearable.
Because of the location of the tumor on Ryan's spine, the radiation is going to affect his lungs and his esophagus. He will probably lose his ability to swallow, and because of this will need to have a feeding tube. Because he is so young, they will probably put a feeding tube into his stomach.
The lungs will be damaged, causing him to probably be on oxygen. There will be some serious burns at the radiation site.... best case will be like third degree sunburn... bad enough for a young child. The burns could be quite severe, causing muscle and tissue damage. He will probably need IV antibiotic therapy.
These possibilities (very likely) along with the continuing chemotherapy and the side effects that are becoming more invasive from that is taking its toll on our family. It is getting harder and harder to take this "one day at a time", while not knowing what tomorrow will bring.
I need to take a lesson from Ryan himself. I need to draw from the strength he is showing each and every day. He takes each set back and each side effect in stride and carries on. When we say he is a Warrior, that is, indeed, what he is. I need to take each new thing that comes up one at a time and face it when I have to face it. I need to draw strength from the knowledge that God is in control of this and of everything. I know that God will equip me with what I need in order to do my best for Ryan.
So please, all of you Prayer Warriors out there that are praying for all of us... pray that we find the strength and the peace of one day at a time. Let us take each issue that may arise and overcome it as we need to. Pray for us not to worry, not to fret. You all are a very important part of our battle, and we love you for being here for us in our need. God Bless you all.
There are so many unknown factors in the battle of cancer. Even the day today factors.... will Ryan eat today? Will Ryan feel good enough to go out of the house? Will Ryan's counts be good enough for him to participate in a scheduled activity? The unknowns that affect us day to day are overwhelming. It is hard to make any plans, to anticipate any event. We never know if today is the day he will have to be rushed down to Primary's for a blood transfusion, or if today is the day he will develope a fever out of nowhere and have to rush to the hospital for that.
We live in anticipation for the results of his labs that are done twice a week. They determine if Ryan will be able to go out to dinner with the family, or even to the grocery store. If his counts are good, he can go swimming, an activity that he dearly loves. It is so hard not to know from day to day what he will be able to do.
Yesterday his home health nurse was here to do labs, and he asked about radiation treatments. Ryan's radiation is scheduled to start on Feb 25. We were told of some quite serious side effects to expect from the radiation when we went to his initial radiology appointment a couple of weeks ago. I guess it really did not hit home with me until yesterday while talking with Scott, Ryans nurse. It is so easy to think... yes, that could happen, but it WONT happen to us. Now the unknown of just what will happen is almost unbearable.
Because of the location of the tumor on Ryan's spine, the radiation is going to affect his lungs and his esophagus. He will probably lose his ability to swallow, and because of this will need to have a feeding tube. Because he is so young, they will probably put a feeding tube into his stomach.
The lungs will be damaged, causing him to probably be on oxygen. There will be some serious burns at the radiation site.... best case will be like third degree sunburn... bad enough for a young child. The burns could be quite severe, causing muscle and tissue damage. He will probably need IV antibiotic therapy.
These possibilities (very likely) along with the continuing chemotherapy and the side effects that are becoming more invasive from that is taking its toll on our family. It is getting harder and harder to take this "one day at a time", while not knowing what tomorrow will bring.
I need to take a lesson from Ryan himself. I need to draw from the strength he is showing each and every day. He takes each set back and each side effect in stride and carries on. When we say he is a Warrior, that is, indeed, what he is. I need to take each new thing that comes up one at a time and face it when I have to face it. I need to draw strength from the knowledge that God is in control of this and of everything. I know that God will equip me with what I need in order to do my best for Ryan.
So please, all of you Prayer Warriors out there that are praying for all of us... pray that we find the strength and the peace of one day at a time. Let us take each issue that may arise and overcome it as we need to. Pray for us not to worry, not to fret. You all are a very important part of our battle, and we love you for being here for us in our need. God Bless you all.
Monday, February 4, 2013
Today is World Cancer Day. Cancer is a horrible, ugly, debillitating, killing disease. Cancer of any type in any age is devastating and changes the lives of those fighting and caring for the victims of the disease. I think that to hear the words "You (or someone you love) have cancer" are the scariest words in the world.
Millions of dollars are spent each year on research and developement of new treatments for Cancer. Almost every day you hear something about Breast Cancer, Lung Cancer, Prostate Cancer or any number of adult onset cancers. The news is full of stories that show support for adult cancer.
How often do you hear the media mention any childhood cancer? Occassionally there will be a story about an individual child that achieved a dream, or accomplished a goal against all odds. Those stories are wonderful and heart warming. But seldom do we hear of any research, new treatment, or breakthrough in the battle against childhood cancer.
Very little money is spent on finding the cure for childhood cancer. I was never aware of this until this disease came slamming into our lives. Some of the treatments these children recieve are the same ones that have been treating this for twenty five years. Our children are dying every day because of lack of funding and lack of attention for the problem. Are not our children and the cancers they have every bit as important as Breast, Lung, Prostate and any number of adult cancer?
How many of you had even heard of Ewings Sarcoma before having it effect someone you came into contact with? I know I had never heard of it before Ryan was diagnosed. It is considered a "rare" cancer, affecting approximately 250 children in the United States each year. Do these 250 children not deserve the best treatment, the latest in research, the chance to live?
The lack of funding and research on childhood cancer will not change until WE change it. There is a effort being made to have the White House light up yellow in September, 2013 to show support for childhood cancer. Every October, the world turns pink in support of Breast Cancer. Is it not time for us all to go yellow in support of Childhood Cancer?
https://www.facebook.com/yellowandgoldforcole is a link for a family that lost their child to cancer. They are fighting the fight for awareness of this horrific disease. They have not given up the hope and the fight for other children and families that battle daily.
Please take a few minutes today and go to this site.... Another beautiful child lost to cancer, her family has started a foundation in Anna's name to help other families and to bring awareness for the need for research. https://www.1million4anna.org/.
It is up to each of us to fight for our children. It is up to each of us to CARE. Together, great things can be accomplished. Please research and do your part today in raising awareness for Childhood Cancer. What better day than on World Cancer Day?
Millions of dollars are spent each year on research and developement of new treatments for Cancer. Almost every day you hear something about Breast Cancer, Lung Cancer, Prostate Cancer or any number of adult onset cancers. The news is full of stories that show support for adult cancer.
How often do you hear the media mention any childhood cancer? Occassionally there will be a story about an individual child that achieved a dream, or accomplished a goal against all odds. Those stories are wonderful and heart warming. But seldom do we hear of any research, new treatment, or breakthrough in the battle against childhood cancer.
Very little money is spent on finding the cure for childhood cancer. I was never aware of this until this disease came slamming into our lives. Some of the treatments these children recieve are the same ones that have been treating this for twenty five years. Our children are dying every day because of lack of funding and lack of attention for the problem. Are not our children and the cancers they have every bit as important as Breast, Lung, Prostate and any number of adult cancer?
How many of you had even heard of Ewings Sarcoma before having it effect someone you came into contact with? I know I had never heard of it before Ryan was diagnosed. It is considered a "rare" cancer, affecting approximately 250 children in the United States each year. Do these 250 children not deserve the best treatment, the latest in research, the chance to live?
The lack of funding and research on childhood cancer will not change until WE change it. There is a effort being made to have the White House light up yellow in September, 2013 to show support for childhood cancer. Every October, the world turns pink in support of Breast Cancer. Is it not time for us all to go yellow in support of Childhood Cancer?
https://www.facebook.com/yellowandgoldforcole is a link for a family that lost their child to cancer. They are fighting the fight for awareness of this horrific disease. They have not given up the hope and the fight for other children and families that battle daily.
Please take a few minutes today and go to this site.... Another beautiful child lost to cancer, her family has started a foundation in Anna's name to help other families and to bring awareness for the need for research. https://www.1million4anna.org/.
It is up to each of us to fight for our children. It is up to each of us to CARE. Together, great things can be accomplished. Please research and do your part today in raising awareness for Childhood Cancer. What better day than on World Cancer Day?
Saturday, February 2, 2013
Blessings and Lessons....
Lately, I have had a very hard time focusing on any positive aspect of this battle. It is so easy to despair, to worry, to fret, to stress.... there are many things to worry and stress out about. There are many things to fear.
Today I want to focus on the good things. The blessings and lessons Ryan and I are receiving and learning from our fight. Sometimes, if you can just let go of the fear, the joy and light have room to seep in.
Everyday we go through our routines and our lives, almost in auto pilot. We do our chores, our jobs, our whatever it is we need to do in a day, and time slips by and moments pass us up with little or no notice. The first lesson I have learned is to appreciate the moment. You never know when an opportunity for a blessed memory will happen.
This morning, after a very bad night of throwing up and cleaning up, Ryan asked his Papa to come sit with him and snuggle. Such a small request, but oh so wonderful. This is a moment for Ry and Papa to share... just the two of them. It is an opportunity to love each other. It is a moment to cherish.
Every night at bedtime, Ry asks me to sing to him. I am one of the worlds WORST singers... yet this small child blesses me by wanting me to sing. I tuck him into his blankets, sit on the end of his bed, hold his precious little hand and sing. It is such a wonderful few minutes I get every night. This disease can never take these moments away from us. They are planted in our hearts and in our memories.
The next lesson/blessing we have is that there are many people out there that truly DO care. Our lives have been so touched by so many stranger/friends. People we will never have the privledge of meeting face to face, but that we love, nonetheless. There is a little boy in Florida named Aiden that I had the chance to meet a couple of weeks ago. Three years old, and he loves Ryan and prays for him everyday. He sent a little floppy stuffed dog to Ryan so he would not have to be in the hospital alone. This little toy has become Ryan's buddy. He does not go anywhere without his B Dog. He sleeps with him nightly and this toy brings him so much comfort. Aiden and Ryan have never and probably never will meet, yet I feel they will be life long friends.
Whenever things are hard or I am overwhelmed, I read Ryan's facebook page and see the many well wishes and the prayers being said daily for him. Such comfort and peace these prayers give me. Ryan loves to sit with me and read the page with me, and he often asks how many people love him on facebook.
Another lesson/blessing is the generosity we have been shown. This is not an inexpensive fight we are waging. The costs of day to day care, the costs of transportation, meals at the hospital, etc. (I could go on and on) People have been very generous with fund raising and donating to Ryan's fund. Without the kindnesses of so many people, we would have the added burden of falling behind in our bills and not being able to afford to help Ryan. I Thank God every day for all the fantastic, caring, sharing people that have helped us.
One last lesson I want to mention is being taught to me every day. That is a lesson in being strong. The teacher is Ryan himself. I watch the struggles this little boy goes through and how he overcomes each one with courage and strength. I have learned that if he can smile after throwing up, if he can laugh after crying so hard about having a shot, if he can keep on keeping on with the bravery he has... then who am I to complain or whine about helping him on this journey? I am amazed at how well he is handling the ups and downs, the trials he has to endure, the medicines, the lab draws, etc. He truly is a hero.
Please, if you get anything out of this blog today, just do not ever take for granted the every day, small things that are so easy to overlook. You never know when those moments may never come again. May you all love a little more, show a little more kindness, and most of all, trust in God a little more today. He loves us and is in control.
Lately, I have had a very hard time focusing on any positive aspect of this battle. It is so easy to despair, to worry, to fret, to stress.... there are many things to worry and stress out about. There are many things to fear.
Today I want to focus on the good things. The blessings and lessons Ryan and I are receiving and learning from our fight. Sometimes, if you can just let go of the fear, the joy and light have room to seep in.
Everyday we go through our routines and our lives, almost in auto pilot. We do our chores, our jobs, our whatever it is we need to do in a day, and time slips by and moments pass us up with little or no notice. The first lesson I have learned is to appreciate the moment. You never know when an opportunity for a blessed memory will happen.
This morning, after a very bad night of throwing up and cleaning up, Ryan asked his Papa to come sit with him and snuggle. Such a small request, but oh so wonderful. This is a moment for Ry and Papa to share... just the two of them. It is an opportunity to love each other. It is a moment to cherish.
Every night at bedtime, Ry asks me to sing to him. I am one of the worlds WORST singers... yet this small child blesses me by wanting me to sing. I tuck him into his blankets, sit on the end of his bed, hold his precious little hand and sing. It is such a wonderful few minutes I get every night. This disease can never take these moments away from us. They are planted in our hearts and in our memories.
The next lesson/blessing we have is that there are many people out there that truly DO care. Our lives have been so touched by so many stranger/friends. People we will never have the privledge of meeting face to face, but that we love, nonetheless. There is a little boy in Florida named Aiden that I had the chance to meet a couple of weeks ago. Three years old, and he loves Ryan and prays for him everyday. He sent a little floppy stuffed dog to Ryan so he would not have to be in the hospital alone. This little toy has become Ryan's buddy. He does not go anywhere without his B Dog. He sleeps with him nightly and this toy brings him so much comfort. Aiden and Ryan have never and probably never will meet, yet I feel they will be life long friends.
Whenever things are hard or I am overwhelmed, I read Ryan's facebook page and see the many well wishes and the prayers being said daily for him. Such comfort and peace these prayers give me. Ryan loves to sit with me and read the page with me, and he often asks how many people love him on facebook.
Another lesson/blessing is the generosity we have been shown. This is not an inexpensive fight we are waging. The costs of day to day care, the costs of transportation, meals at the hospital, etc. (I could go on and on) People have been very generous with fund raising and donating to Ryan's fund. Without the kindnesses of so many people, we would have the added burden of falling behind in our bills and not being able to afford to help Ryan. I Thank God every day for all the fantastic, caring, sharing people that have helped us.
One last lesson I want to mention is being taught to me every day. That is a lesson in being strong. The teacher is Ryan himself. I watch the struggles this little boy goes through and how he overcomes each one with courage and strength. I have learned that if he can smile after throwing up, if he can laugh after crying so hard about having a shot, if he can keep on keeping on with the bravery he has... then who am I to complain or whine about helping him on this journey? I am amazed at how well he is handling the ups and downs, the trials he has to endure, the medicines, the lab draws, etc. He truly is a hero.
Please, if you get anything out of this blog today, just do not ever take for granted the every day, small things that are so easy to overlook. You never know when those moments may never come again. May you all love a little more, show a little more kindness, and most of all, trust in God a little more today. He loves us and is in control.
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