Everyone sees the cancer child. Those bald heads and brave smiles are so beautiful, adorable, brave, heartbreaking and inspiring. To those of us in the Cancer World, we see the determination and the pain that is behind those cute pictures. We see the hundreds of procedures, the hours of fighting nausea, the pokes and prods, the tests, the fatigue. Those not in our world see and say "Awww, what a sweet little child, he/she is so brave!" and they go on with their lives thinking.... "That will never be MY child."
Today I am going to open my heart and gut and pour out some of the pain that is buried inside. Cancer pain. I am not the one hurting and having poison poured into my veins.. having shots every night that HURT and make my bones ache. I am not the one that can not eat because every thing tastes like rusted metal, or because I know that if I put it in my mouth, I will be spewing it out very soon. I am not the one that has to take handfuls of meds every single day, nor have my temperature taken over and over and over because fever means a trip to the ER and yet another hospital stay. I am not the one that can not go out to play, or to the store, or to Chuckie Cheese, or ANYWHERE because my blood counts are too low. I am not the one that cries because, once again, my hair falls out and I look "different", that has no energy to walk even through the house without having to stop and rest. I am not the one that has to sleep 20 hours of the day, that can barely sit up some days, that has to be rushed to the hospital to have blood transfusions to help give me some strength back. I am not the one........
But.... I am the one that watches and sees and is there 24 hours a day to witness just how hard this Cancer stuff is. I am the CAREGIVER.
I hold the tiny hand and rub the back of the warrior having poison pumped into his veins. I watch him go from playing to drooping and watch as the nausea starts to roll in, I grab the barf bag and hold it for him as he wretches again and again.
I am the one that has to give him those horrible shots every night. I am the one that he begs and pleads and cries to to NOT give him those shots. I am the one that goes into the other room after those shots and cries and aches because I have to do it.
I am the one that tries, every day, to find SOMETHING that will taste good, something that he will eat and enjoy. I make trips across town to buy him something that he wants, just to get home and find out that he can't eat that, either. I am the one that nags and pesters and says "Take a bite... take a drink" over and over and over until I feel like I am a broken record.
I am the one that doles out those handfuls of pills every day. I have to keep them straight... what time to give them, what days to give them, wake him up to give them if they are around the clock meds. I have to clean his port access and give him intraveinous drugs... sometimes while I am so sleepy that I can barely have a sane thought in my head.
I am the one taking those temperatures so often, feeling his head constantly to see if he is warm, throwing things into an overnight bag in a hurry because there has been a fever and we have to go NOW.
I am the one that rubs his legs night after night because his bones just plain hurt. My hands ache from rubbing and rubbing for hours... but that is the only thing that seems to help him rest.
I am the one that struggles with watching the other kids outside playing and then turning to see him laying on the couch with his IPad... I see the sadness and the boredom. I try to find things to entertain him, to stimulate him...but I so often fail him in that. I stay home with him and long to be somewhere... anywhere but here. And then I feel guilty for feeling that.
I am the one that drives through the blizzard time and time again to rush him to the hospital.. or to take him to have chemo, or radiation.
I am the one that sleeps on those horrible couch/cots at the hospital for nights on end, and wish I was home in my own bed.
I am the one that stands in the shower at any time of the day or night... because the shower is my safe haven where I can go and cry and sob and yell at God that all of this is NOT FAIR.
I am the one that, on top of all of the stuff I have spewed out, has to fix dinner, do the dishes, laundry, etc. and find the time and the strength to still be a mom (grandma) and take care of the rest of the family, too.
CANCER HURTS!!!! It hurts entire families, not just the cancer kid. It hurts the siblings that get to watch their brother fight and not understand why. It hurts to not be able to play with them, or to have them gone so often, or to have mom and dad spend so much time and energy on them and not have a lot of energy left to take care of the sibling.
It hurts the bread winners... the ones that HAVE to go to their jobs every day...even though their hearts are not with it, they want to be home taking care of the cancer child, too.
Please.... when you pray for that cancer child..... pray for the ones that hurt that you do not see. Sometimes it is only in the prayers for ME that I can get through one more day.
If you sincerely want to help someone fight the fight... Don't just say, "Let me know how I can help you". They will never tell you. Take them a meal, text them to tell them you love them, take them to lunch. The person that is fighting so hard behind the scenes has no idea how you can help them. They are in survival mode... just get through the day mode.... But, they will be so grateful that you thought enough to DO something... they just don't know how to tell you what it is they need.
I am not strong, like my cancer kid. I do not go into this battle with a smile on my face. I whine, I complain, I am weak. I yell at God. I HURT. But, I will go on. Just be prepared for tears at odd times. I have God beside me... in me.... and with me. And I have all of you reading this on my side. This fight is not about ME... even though I wrote this blog today. It is about RYAN.
Thank you, ALL, for your love and support and prayers. They truly are what get me through my day.
Thursday, March 5, 2015
Friday, January 30, 2015
Reality hits
I have been in a state of denial about this whole relapse with Ryan. I knew in my head that it is real, and that we are facing "hell on earth" again... but my heart just had not accepted the reality of it all.
Yesterday, as I was driving to Primary Children's Hospital, the song BLESSINGS came on K-Love radio (The only station Ryan will listen too!) When we finished our fight last time around, I made a slide show with some pictures of our fight and that was the music I chose to play in the show. It spoke to my heart that our blessings truly do come from heartache. When the song started playing, I felt as though my stomach had been punched and I started crying. My heart finally knew that this was all real again.
Ryan is such a little trooper. He was in great spirits all day... talking and laughing with the drs and nurses. We visited with his oncology doctors and found out the plan of action we will take.
He will begin chemo as an out-patient, meaning we will go to the Oncology clinic every day to receive his chemo and IV fluids, then we will go home. There will be five days chemo, and two week break, so every 21 days we will begin another round. We were told that his bone marrow is tired from so much chemo last time around, and that it never fully recovers.... so his "rebound" time will take longer and longer as we go on. The 21 day cycle is ideal, but if his blood counts drop, that 21 days will become longer and longer. We will be on this fight for nine months to a year.
Already, we are receiving Blessings in our renewed tears and pain. There are so many GOOD people in this world. We have an army of beautiful people that are showering us with love and prayers... and there are some really great things being planned to help Ryan and our family get through this. I will be posting more about those things as they happen... for now I can say... HOPE is such a powerful emotion. Anticipation and fun activities to look forward to bring us hope and strength. For a little while, we can focus on fun and family and not the BEAST. God is truly blessing us with many angels here on earth.
Count your blessings, friends. Find joy in the mundane, every day minutes that make up our lives. God blesses us with so many things, if we just take the time to see them... sunrises, sunsets, butterflies and blue jays, snowflakes and frost patterns, babies smiles and the stories that our elderly people want to share. Love someone, and help someone that needs what only you can do. And hug your kids. You never know when YOUR smile may be the blessing God has for another person today.
If you would like to view the slideshow of our first fight, go here..... http://www.smilebox.com/playBlog/4e4449774e7a45344d6a4d3d0d0a&blogview=true
Yesterday, as I was driving to Primary Children's Hospital, the song BLESSINGS came on K-Love radio (The only station Ryan will listen too!) When we finished our fight last time around, I made a slide show with some pictures of our fight and that was the music I chose to play in the show. It spoke to my heart that our blessings truly do come from heartache. When the song started playing, I felt as though my stomach had been punched and I started crying. My heart finally knew that this was all real again.
Ryan is such a little trooper. He was in great spirits all day... talking and laughing with the drs and nurses. We visited with his oncology doctors and found out the plan of action we will take.
He will begin chemo as an out-patient, meaning we will go to the Oncology clinic every day to receive his chemo and IV fluids, then we will go home. There will be five days chemo, and two week break, so every 21 days we will begin another round. We were told that his bone marrow is tired from so much chemo last time around, and that it never fully recovers.... so his "rebound" time will take longer and longer as we go on. The 21 day cycle is ideal, but if his blood counts drop, that 21 days will become longer and longer. We will be on this fight for nine months to a year.
Already, we are receiving Blessings in our renewed tears and pain. There are so many GOOD people in this world. We have an army of beautiful people that are showering us with love and prayers... and there are some really great things being planned to help Ryan and our family get through this. I will be posting more about those things as they happen... for now I can say... HOPE is such a powerful emotion. Anticipation and fun activities to look forward to bring us hope and strength. For a little while, we can focus on fun and family and not the BEAST. God is truly blessing us with many angels here on earth.
Count your blessings, friends. Find joy in the mundane, every day minutes that make up our lives. God blesses us with so many things, if we just take the time to see them... sunrises, sunsets, butterflies and blue jays, snowflakes and frost patterns, babies smiles and the stories that our elderly people want to share. Love someone, and help someone that needs what only you can do. And hug your kids. You never know when YOUR smile may be the blessing God has for another person today.
If you would like to view the slideshow of our first fight, go here..... http://www.smilebox.com/playBlog/4e4449774e7a45344d6a4d3d0d0a&blogview=true
Saturday, January 24, 2015
Second Verse.... Same as the First
SECOND VERSE.... SAME AS THE FIRST
There is an old children's song that goes like this....
This is the song that never ends... It goes on and on, my friends..... Someone started singing it not knowing what it was.... and they'll continue singing it forever, just because... (and repeat over and over)
As most of you know, Ryan has relapsed. A small tumor taken from his right lung is Ewings Sarcoma. We feel as though we have been thrown head first into that children's tune, and that this nightmare journey we started on Nov 6, 2012 will never end.
Ryan had the lung resection surgery on Wednesday, Jan 21, 2015 and came home the following night. We did not tell him of his cancer recurrence until we were at home with his family all together. I will never forget the look in his eyes the moment we told him that we are in the fight again. He had a flash of terror, and then despair. His eyes pooled with tears that were just to much to shed, and his lip started quivering. After a few deep breaths, he said with all the conviction his little body could muster... "WE WILL KICK CANCERS BUTT.... TO PLUTO!!!"
Our boy is AMAZING. and STRONG. The news of the relapse brought me to my knees, took the air from my lungs, and had me in a literal tail spin. All it took was those few words from our true warrior to bring the entire family into FIGHT mode. We are in the battle again... and ready to fight.
Thursday we will return to Primary Children's Hospital to have a port placed in Ryan's chest. And we will meet with his oncology team to discuss our plan of action. I know he can not have the same chemotherapy as he did before, and that is the only proven protocol that is known to kill Ewings. There are other chemos, and we will be trying them... but they do not have the track record of the protocol he was on before. On Monday, Feb 2, he will begin his new treatment.
Statistics show that recurring Ewings, especially in the lungs, is very hard to fight. But statistics are just numbers. Warriors do not give up... Ryan has not given up.... our family is not giving up. I hope Ewings Sarcoma wants to travel in space... because that is exactly where Ryan is sending it!
Thank you all for being with us through our first "verse', and thank you for joining us in this second verse. We are praying that it will be "same as the first" and that the outcome will be NED once again. We can not do this without the support of the thousands of you that love our boy, and pray for him. You will never know what you have done for us.
With God, and you all on our side, WE WILL KICK CANCERS BUTT TO PLUTO!!
There is an old children's song that goes like this....
This is the song that never ends... It goes on and on, my friends..... Someone started singing it not knowing what it was.... and they'll continue singing it forever, just because... (and repeat over and over)
As most of you know, Ryan has relapsed. A small tumor taken from his right lung is Ewings Sarcoma. We feel as though we have been thrown head first into that children's tune, and that this nightmare journey we started on Nov 6, 2012 will never end.
Ryan had the lung resection surgery on Wednesday, Jan 21, 2015 and came home the following night. We did not tell him of his cancer recurrence until we were at home with his family all together. I will never forget the look in his eyes the moment we told him that we are in the fight again. He had a flash of terror, and then despair. His eyes pooled with tears that were just to much to shed, and his lip started quivering. After a few deep breaths, he said with all the conviction his little body could muster... "WE WILL KICK CANCERS BUTT.... TO PLUTO!!!"
Our boy is AMAZING. and STRONG. The news of the relapse brought me to my knees, took the air from my lungs, and had me in a literal tail spin. All it took was those few words from our true warrior to bring the entire family into FIGHT mode. We are in the battle again... and ready to fight.
Thursday we will return to Primary Children's Hospital to have a port placed in Ryan's chest. And we will meet with his oncology team to discuss our plan of action. I know he can not have the same chemotherapy as he did before, and that is the only proven protocol that is known to kill Ewings. There are other chemos, and we will be trying them... but they do not have the track record of the protocol he was on before. On Monday, Feb 2, he will begin his new treatment.
Statistics show that recurring Ewings, especially in the lungs, is very hard to fight. But statistics are just numbers. Warriors do not give up... Ryan has not given up.... our family is not giving up. I hope Ewings Sarcoma wants to travel in space... because that is exactly where Ryan is sending it!
Thank you all for being with us through our first "verse', and thank you for joining us in this second verse. We are praying that it will be "same as the first" and that the outcome will be NED once again. We can not do this without the support of the thousands of you that love our boy, and pray for him. You will never know what you have done for us.
With God, and you all on our side, WE WILL KICK CANCERS BUTT TO PLUTO!!
Friday, July 26, 2013
The Journey
November6, 2012..... Election Day. The day we heard the horrible, life-changing, most frightening word in the English language..... CANCER.
Our minds were numb, our emotions running rampant for the next few whirlwind days. Our precious, happy, loving, teasing little boy had *gulp* cancer. The fight of our lives was on. Scans, surgeries, bone marrow aspiration, biopsies, all searching for the answers the doctors needed to diagnose and begin the mind and body altering treatment that would save our precious Ryan's life. November12 we were given the verdict... Ewing's Sarcoma.
The medical team met with us and gave us the road map we would follow, and told us of road blocks and side effects that most assuredly would come over the course of treatment. Chemotherapy began immediately, and the race for Ryan's life was on.
276 days ago...it seems like years in some ways and just minutes in others. There have been so many changes in those days. One of the first course of action in treatment was putting Ryan on a high steroid regimen. during the steroid phase, he puffed up like a balloon, and gained over 20 pounds.
We were grateful for those extra pounds, because it was not long before he was so sick he could not eat, and the weight dropped off. He lost his hair. Physically, he does not look like the same little man, but he looks now like the super hero warrior he is.
We have spent 72 nights inpatient at PCMC. Nights that Ryan had to wake up and pee every two hours to clear the poison from his kidneys. Many of those night were spent rubbing his legs that were hurting as a side effect of the chemotherapy. This young boy, who should have nothing more to worry about than passing his spelling test and what prank to play next on his sister, was tied to a hospital bed fighting nausea, having his body pumped full of poison.
Every day for six weeks we traveled the hour long commute to Huntsman Cancer Center for radiation to his spine.
Ryan has had about 70 port accesses, a 3/4 inch long needle stuck into his chest to access the port placed in his artery to enable blood draws for labs and to administer the drugs. For a few weeks, he also received TPN feelings through this port because he was so sick he could not tolerate anything in his stomach.
We have give him 97 neupogen shots.... The dreaded "pokeys". He has had 15 transfusions of packed red blood cells and platelets. Ryan has had 4 echocardiograms, 4 CT scans, 3MRIs, and a few ultrasounds. He takes several medications daily, often as many as 12 pills a day.
We have had two stays in the ICU unit, one of those he was connected to the ventilator to keep him breathing.
This has been our journey, our fight, our lives for 276 days. We will never be the same as we were before November 6, 2012. We are stronger, we are more caring. We are aware of the need for childhood cancer research...for finding the CURE so no child has to fight this fight. We have a stronger faith in God, and in people. So many strangers have become part of our family and the outpouring of love,prayers and support have held us up so many times.
July 26, 2013...... Bell Ringing Day! There is a little bell hanging on the wall of the ICS ward where Ryan and I have spent so many days and nights. When a child completes his chemotherapy regimen, the medical staff gathers with friends and family and sings a song and the child rings the bell, telling the world that he has completed the journey!
Ryan's scans show NED (no evidence of disease)! We have beaten the monster! Today at 5:30 pm, he will ring the bell, loud and clear! We invite all of you that have prayed, loved, and supported us in so many ways, to find a bell and ring it with Ryan.
The Journey never ends, it evolves into the next adventure. I do not know what the future holds for my hero Ryan, but I do know that he is strong enough to take it head on. I know that God has this child and our family in the palm of His hand, and that, no matter what the future brings, we will be blessed in it.
Our minds were numb, our emotions running rampant for the next few whirlwind days. Our precious, happy, loving, teasing little boy had *gulp* cancer. The fight of our lives was on. Scans, surgeries, bone marrow aspiration, biopsies, all searching for the answers the doctors needed to diagnose and begin the mind and body altering treatment that would save our precious Ryan's life. November12 we were given the verdict... Ewing's Sarcoma.
The medical team met with us and gave us the road map we would follow, and told us of road blocks and side effects that most assuredly would come over the course of treatment. Chemotherapy began immediately, and the race for Ryan's life was on.
276 days ago...it seems like years in some ways and just minutes in others. There have been so many changes in those days. One of the first course of action in treatment was putting Ryan on a high steroid regimen. during the steroid phase, he puffed up like a balloon, and gained over 20 pounds.
We were grateful for those extra pounds, because it was not long before he was so sick he could not eat, and the weight dropped off. He lost his hair. Physically, he does not look like the same little man, but he looks now like the super hero warrior he is.
We have spent 72 nights inpatient at PCMC. Nights that Ryan had to wake up and pee every two hours to clear the poison from his kidneys. Many of those night were spent rubbing his legs that were hurting as a side effect of the chemotherapy. This young boy, who should have nothing more to worry about than passing his spelling test and what prank to play next on his sister, was tied to a hospital bed fighting nausea, having his body pumped full of poison.
Every day for six weeks we traveled the hour long commute to Huntsman Cancer Center for radiation to his spine.
Ryan has had about 70 port accesses, a 3/4 inch long needle stuck into his chest to access the port placed in his artery to enable blood draws for labs and to administer the drugs. For a few weeks, he also received TPN feelings through this port because he was so sick he could not tolerate anything in his stomach.
We have give him 97 neupogen shots.... The dreaded "pokeys". He has had 15 transfusions of packed red blood cells and platelets. Ryan has had 4 echocardiograms, 4 CT scans, 3MRIs, and a few ultrasounds. He takes several medications daily, often as many as 12 pills a day.
We have had two stays in the ICU unit, one of those he was connected to the ventilator to keep him breathing.
This has been our journey, our fight, our lives for 276 days. We will never be the same as we were before November 6, 2012. We are stronger, we are more caring. We are aware of the need for childhood cancer research...for finding the CURE so no child has to fight this fight. We have a stronger faith in God, and in people. So many strangers have become part of our family and the outpouring of love,prayers and support have held us up so many times.
July 26, 2013...... Bell Ringing Day! There is a little bell hanging on the wall of the ICS ward where Ryan and I have spent so many days and nights. When a child completes his chemotherapy regimen, the medical staff gathers with friends and family and sings a song and the child rings the bell, telling the world that he has completed the journey!
Ryan's scans show NED (no evidence of disease)! We have beaten the monster! Today at 5:30 pm, he will ring the bell, loud and clear! We invite all of you that have prayed, loved, and supported us in so many ways, to find a bell and ring it with Ryan.
The Journey never ends, it evolves into the next adventure. I do not know what the future holds for my hero Ryan, but I do know that he is strong enough to take it head on. I know that God has this child and our family in the palm of His hand, and that, no matter what the future brings, we will be blessed in it.
Sunday, July 7, 2013
Wishes
Last night we took Ryan and Abby to the drive in movie theater. It was a beautiful night after the rain stopped, nice and cool. Ryan spotted the first star in the sky and together we quickly said.... "Star light, star bright, first star out I see tonight, I wish I may, I wish I might, have this wish I wish tonight. Ryan looked at me with so much glee on his face, a smile in his eyes and on his face. He said "I wish I never have to have Chemo again!"
My heart broke a little bit, and tears welled up in my eyes. We have one more chemotherapy session left in our fight. It will be a five day admit where Ryan will be given two extremely potent drugs. This round is the hardest on his body, we have always ended up having a transfusion and usually with an extra admit for fever and him being neutropenic after this round.
It hurt to have to tell him that his wish could not come true, that we HAVE to have this last round. It hurt to see the disappointment in his eyes and the smile fade from his face. He is such a trooper, the smile faded for just a few minutes, and he was back to his sweet self, smiling in anticipation of seeing Despicable Me 2 and Monsters U. No matter the setbacks, no matter the disappointments, no matter the not being able to eat, or the feeling sick... he always smiles through it all.
It hurts to see what this BEAST has done to Ryan. People that see his "before" picture do not recognize him as the same boy he is today. He has changed physically so much. Some of the changes are temporary, and he will once again look the way he used to look. His hair, eyebrows and eyelashes will grow again. He will gain weight back, he will look more like a "normal" little boy. There are a lot of changes that will not be go away, most of these you can not see on the outside.
Ryan will always have to be careful to not damage the vertebrae that are dead in his spine. Now I know that he is showing symptoms of "Chemo Brain." He has always been able to express himself in his words. Now he "loses" words and struggles to say what it is he wants to say. He tries to explain what the word means, but ends up frustrated because he can not quite express what it is. He forgets how to do things, for example... one day he can do his math problems fine, and understands the concept very well...and the next he struggles to do even the very most basic math... forgetting how to do it. In the middle of playing a game, he forgets what to do. He forgets things that happened just a short time before. Part of chemo brain is losing balance. He can not stand on one foot for even a second, even struggling to do it when holding on to something. He can not walk heel to toe without toppling over.
Some of the research I have done on chemo brain says it is temporary, and that after treatment the patient will improve, while other research says that in children, chemo brain to some extent is a permanent condition.
We will continue fighting the Beast.... not in beating the cancer itself... that we have conquered through God's Grace and miracles.... but in the residual side affects left over from the fight itself. Ryan will do it with a smile on his face and with the strength he has shown all through this journey. I will do it with determination and with Faith. God has seen us this far, and He has been so good to us. I know that He carries us in His arms and that He will get us through.
Ryan's wish for no more chemo will not come true right now... but soon... very soon... he will not have to face it anymore. For that we give God all thanks and glory.
I, also, made a wish on that first star last night. I wished that, someday, someway, NO child will have to go through the battle Ryan has gone through. Right now my wish is just as improbable of happening as Ryan's is. Children are diagnosed each day... children are dying each day. I will not give up the wish, nor the fight for the cure.
Please, keep Ryan in your prayers as we finish up this phase of our journey. You are all loved and appreciated more than you will ever know by our family. Without you, and your prayers, I do not know that we would be where we are now. God is good.
My heart broke a little bit, and tears welled up in my eyes. We have one more chemotherapy session left in our fight. It will be a five day admit where Ryan will be given two extremely potent drugs. This round is the hardest on his body, we have always ended up having a transfusion and usually with an extra admit for fever and him being neutropenic after this round.
It hurt to have to tell him that his wish could not come true, that we HAVE to have this last round. It hurt to see the disappointment in his eyes and the smile fade from his face. He is such a trooper, the smile faded for just a few minutes, and he was back to his sweet self, smiling in anticipation of seeing Despicable Me 2 and Monsters U. No matter the setbacks, no matter the disappointments, no matter the not being able to eat, or the feeling sick... he always smiles through it all.
It hurts to see what this BEAST has done to Ryan. People that see his "before" picture do not recognize him as the same boy he is today. He has changed physically so much. Some of the changes are temporary, and he will once again look the way he used to look. His hair, eyebrows and eyelashes will grow again. He will gain weight back, he will look more like a "normal" little boy. There are a lot of changes that will not be go away, most of these you can not see on the outside.
Ryan will always have to be careful to not damage the vertebrae that are dead in his spine. Now I know that he is showing symptoms of "Chemo Brain." He has always been able to express himself in his words. Now he "loses" words and struggles to say what it is he wants to say. He tries to explain what the word means, but ends up frustrated because he can not quite express what it is. He forgets how to do things, for example... one day he can do his math problems fine, and understands the concept very well...and the next he struggles to do even the very most basic math... forgetting how to do it. In the middle of playing a game, he forgets what to do. He forgets things that happened just a short time before. Part of chemo brain is losing balance. He can not stand on one foot for even a second, even struggling to do it when holding on to something. He can not walk heel to toe without toppling over.
Some of the research I have done on chemo brain says it is temporary, and that after treatment the patient will improve, while other research says that in children, chemo brain to some extent is a permanent condition.
We will continue fighting the Beast.... not in beating the cancer itself... that we have conquered through God's Grace and miracles.... but in the residual side affects left over from the fight itself. Ryan will do it with a smile on his face and with the strength he has shown all through this journey. I will do it with determination and with Faith. God has seen us this far, and He has been so good to us. I know that He carries us in His arms and that He will get us through.
Ryan's wish for no more chemo will not come true right now... but soon... very soon... he will not have to face it anymore. For that we give God all thanks and glory.
I, also, made a wish on that first star last night. I wished that, someday, someway, NO child will have to go through the battle Ryan has gone through. Right now my wish is just as improbable of happening as Ryan's is. Children are diagnosed each day... children are dying each day. I will not give up the wish, nor the fight for the cure.
Please, keep Ryan in your prayers as we finish up this phase of our journey. You are all loved and appreciated more than you will ever know by our family. Without you, and your prayers, I do not know that we would be where we are now. God is good.
Wednesday, May 29, 2013
Faith
I have been reading and hearing of so many little children that have gotten their angel wings this week. My heart breaks for their families and the ones that love them and have followed their journeys. Why do some children "make" it and some do not? The answer to that question is one of God's mysteries, and we will know the answer when we meet God.
This is a fallen world... there is pain, there is sin, there is sickness and there is death. All of these are indiscriminate, they hit every economic level, they hit every social class, every ethnic group, every age. No one knows from day to day when sickness will hit their family, when death will come, when there will be some unbearable pain fall upon them. God does not "give" us sickness... He does not bring us sudden death, or extreme pain.... when these strike, it is simply because they exist in this world. It is not because we have "done" something to displease God, to "earn" our trials. God can, and DOES use this death, sickness and pain to bless us and to bring us closer to Him.... He uses these to bless others and to strengthen others. He uses these things for HIS good, and the blessings He pours out are amazing and wonderful, and could come through no other way than through the pain, death and sickness.
Most of you reading this already know that Ryan is cancer free. Most of you know the journey we have been on. You have been praying for us, and trusting God for just what it is He has done. For all of that love and prayers we have received from you, we are eternally grateful. Now I want to tell you just exactly what God has done for Ryan and for me. I want to use our story to bless others, to help others, and to glorify God.
From the very first of our fight with Ewings, I have been told to "Claim the miracle.... to trust in nothing less that total healing for Ryan." I know that many of you have done just that.... and for those prayers and faith, I thank you. There have been days that I have been in total despair, I have cried and I have ranted to God... WHY??? WHY??? My faith has faltered, then returned, then faltered again. I had to come to the realization that we are human, and we have human emotions... God given emotions. When I was feeling that the only way God would bless us was to have perfect faith in nothing short of a miracle, I felt inadequate. I felt that my faith was not enough. Over this journey, I slowly turned it all to God. I quit telling God what to do. I had to accept that God knew what He was doing, and that... NO MATTER WHAT... it would be good. My faith and my love of God grew and grew. I came to KNOW that God would use this journey in some wonderful way.. whether or not Ryan lived or not.
On May 12, 2013 Ken and I went to church, as we do most Sundays. We praised God, we prayed, we worshiped and we learned God's Word. The pastor preached, we sang the invitational hymn, the pastor and deacons went to the front to pray for people. Same routine as countless other Sundays. At the end of the song, our pastor said that it was hard to close the service this day. He said he felt as though someone was not going to be there in a week, or a month, but that God was in control of it, and God would bless them through it. It seemed to me as if he was looking right at me. His words hit me like a kick in the stomach. I went home from church and prayed that God would give me the strength to face whatever the future held. I prayed for God's will to be done. I gave it all to Him, truly for the first time. The rest of the day, I felt a peace unlike any I had felt from the beginning of the journey.
On Monday, I got up early and was making coffee... barely awake and not thinking of anything. Every night I sing to Ryan to help him get to sleep. The joke in my family is that I get the kids to sleep quickly because they go to sleep to get away from the noise! Ryan always asks me to sing Amazing Grace every night. While making coffee, the thought came to me, almost as if someone was standing next to me talking... "You need to sing Amazing Grace at Ryan's funeral.... It will be important to him for you to sing him to sleep." Never, ever would I have ever thought that on my own. The day passed and I prayed for strength to get through... for my family to all have the strength we would need to face whatever happened. I again turned it all to God... God's Will. Ken also began praying in earnest (unknown to me at the time) for God's Will and for strength.
The nurse came on Monday and did labs... and when the clinic called me with Ryan's blood counts, I was dismayed. The counts were very low, dangerously low, and I was told to bring him into the clinic early the next morning to have transfusions. Ryan and his cousin Bailey had been playing all day, and he seemed fine. I began taking his temperature every few minutes to watch for the fever that usually accompanies the very low blood counts. At 8:00 pm, he had a slight fever (100) and I decided to call the ER and tell them we were coming in. Ryan and I left for PCMC, and by the time we got there, his fever was 104.4, his blood pressure was 50/30 and his heart was racing at over 200 beats per minute. He was in septic shock. The ER doctor told me to call the family in, that it was very serious. I called Ken and had him bring Ryan's mommy and daddy down to the hospital.
They intubated Ryan and sent him to the PICU unit. He fought and fought the tube for the ventilator, and they restrained him and sedated him. It was so hard to see our hero literally fighting for his life. Through this all, I had a peace... a calmness. We did not know if he was going to be with us or if he was going home to God. It was while Ryan was in PICU that God gave us the miracle. Ryan rebounded so quickly, the doctors were amazed. They were able to take the tube for the ventilator out the next day... and Ry was moved up to the regular oncology ward later that evening. The next day they were able to remove all oxygen and we were able to go home. The doctor told me that it was nothing short of a miracle that he recovered so fully so quickly.
I KNOW that is when God took all sign of cancer from Ryan. I KNOW that it was in turning it all to Him that we received the miracle. I KNOW that through all of this, God will be glorified, that he will use this story to His good. I KNOW that, no matter what the future holds for us, God is in perfect control.
Two weeks later, on May 24, 2013, Ryan had scans to see where his tumor was and the spots on his lungs. That evening , Dr Luke came into the room and told us that Ryan is CANCER FREE!! There is no sign of the tumor and there are no spots on his lungs!!!!
I can never thank all of you enough for you prayers. your support and you love through our journey. Please know that it was through the prayers of many that we are where we are. If any of you have been blessed by Ryan or our family through this fight, I ask that you write to me and share just how you have been touched, or strengthened of changed. I want to save an account of just how much God has used this for His good for Ryan to have for the rest of his life.
The journey is not over.... but there is His perfect light at the end of the tunnel. We have three more rounds of chemo, and scans every three months to check that the cancer has not returned... but I know that, NO MATTER WHAT, God has this!
This is a fallen world... there is pain, there is sin, there is sickness and there is death. All of these are indiscriminate, they hit every economic level, they hit every social class, every ethnic group, every age. No one knows from day to day when sickness will hit their family, when death will come, when there will be some unbearable pain fall upon them. God does not "give" us sickness... He does not bring us sudden death, or extreme pain.... when these strike, it is simply because they exist in this world. It is not because we have "done" something to displease God, to "earn" our trials. God can, and DOES use this death, sickness and pain to bless us and to bring us closer to Him.... He uses these to bless others and to strengthen others. He uses these things for HIS good, and the blessings He pours out are amazing and wonderful, and could come through no other way than through the pain, death and sickness.
Most of you reading this already know that Ryan is cancer free. Most of you know the journey we have been on. You have been praying for us, and trusting God for just what it is He has done. For all of that love and prayers we have received from you, we are eternally grateful. Now I want to tell you just exactly what God has done for Ryan and for me. I want to use our story to bless others, to help others, and to glorify God.
From the very first of our fight with Ewings, I have been told to "Claim the miracle.... to trust in nothing less that total healing for Ryan." I know that many of you have done just that.... and for those prayers and faith, I thank you. There have been days that I have been in total despair, I have cried and I have ranted to God... WHY??? WHY??? My faith has faltered, then returned, then faltered again. I had to come to the realization that we are human, and we have human emotions... God given emotions. When I was feeling that the only way God would bless us was to have perfect faith in nothing short of a miracle, I felt inadequate. I felt that my faith was not enough. Over this journey, I slowly turned it all to God. I quit telling God what to do. I had to accept that God knew what He was doing, and that... NO MATTER WHAT... it would be good. My faith and my love of God grew and grew. I came to KNOW that God would use this journey in some wonderful way.. whether or not Ryan lived or not.
On May 12, 2013 Ken and I went to church, as we do most Sundays. We praised God, we prayed, we worshiped and we learned God's Word. The pastor preached, we sang the invitational hymn, the pastor and deacons went to the front to pray for people. Same routine as countless other Sundays. At the end of the song, our pastor said that it was hard to close the service this day. He said he felt as though someone was not going to be there in a week, or a month, but that God was in control of it, and God would bless them through it. It seemed to me as if he was looking right at me. His words hit me like a kick in the stomach. I went home from church and prayed that God would give me the strength to face whatever the future held. I prayed for God's will to be done. I gave it all to Him, truly for the first time. The rest of the day, I felt a peace unlike any I had felt from the beginning of the journey.
On Monday, I got up early and was making coffee... barely awake and not thinking of anything. Every night I sing to Ryan to help him get to sleep. The joke in my family is that I get the kids to sleep quickly because they go to sleep to get away from the noise! Ryan always asks me to sing Amazing Grace every night. While making coffee, the thought came to me, almost as if someone was standing next to me talking... "You need to sing Amazing Grace at Ryan's funeral.... It will be important to him for you to sing him to sleep." Never, ever would I have ever thought that on my own. The day passed and I prayed for strength to get through... for my family to all have the strength we would need to face whatever happened. I again turned it all to God... God's Will. Ken also began praying in earnest (unknown to me at the time) for God's Will and for strength.
The nurse came on Monday and did labs... and when the clinic called me with Ryan's blood counts, I was dismayed. The counts were very low, dangerously low, and I was told to bring him into the clinic early the next morning to have transfusions. Ryan and his cousin Bailey had been playing all day, and he seemed fine. I began taking his temperature every few minutes to watch for the fever that usually accompanies the very low blood counts. At 8:00 pm, he had a slight fever (100) and I decided to call the ER and tell them we were coming in. Ryan and I left for PCMC, and by the time we got there, his fever was 104.4, his blood pressure was 50/30 and his heart was racing at over 200 beats per minute. He was in septic shock. The ER doctor told me to call the family in, that it was very serious. I called Ken and had him bring Ryan's mommy and daddy down to the hospital.
They intubated Ryan and sent him to the PICU unit. He fought and fought the tube for the ventilator, and they restrained him and sedated him. It was so hard to see our hero literally fighting for his life. Through this all, I had a peace... a calmness. We did not know if he was going to be with us or if he was going home to God. It was while Ryan was in PICU that God gave us the miracle. Ryan rebounded so quickly, the doctors were amazed. They were able to take the tube for the ventilator out the next day... and Ry was moved up to the regular oncology ward later that evening. The next day they were able to remove all oxygen and we were able to go home. The doctor told me that it was nothing short of a miracle that he recovered so fully so quickly.
I KNOW that is when God took all sign of cancer from Ryan. I KNOW that it was in turning it all to Him that we received the miracle. I KNOW that through all of this, God will be glorified, that he will use this story to His good. I KNOW that, no matter what the future holds for us, God is in perfect control.
Two weeks later, on May 24, 2013, Ryan had scans to see where his tumor was and the spots on his lungs. That evening , Dr Luke came into the room and told us that Ryan is CANCER FREE!! There is no sign of the tumor and there are no spots on his lungs!!!!
I can never thank all of you enough for you prayers. your support and you love through our journey. Please know that it was through the prayers of many that we are where we are. If any of you have been blessed by Ryan or our family through this fight, I ask that you write to me and share just how you have been touched, or strengthened of changed. I want to save an account of just how much God has used this for His good for Ryan to have for the rest of his life.
The journey is not over.... but there is His perfect light at the end of the tunnel. We have three more rounds of chemo, and scans every three months to check that the cancer has not returned... but I know that, NO MATTER WHAT, God has this!
Monday, May 20, 2013
Lessons From a Six Year Old Super Hero
I knew when we received the Cancer diagnosis that our lives would change immediately. Nothing would be the same. I knew we were in for the fight of our lives. I knew that there would be days that would be so painful they would require more strength than I had in me. I was in shock, and I was afraid.
What I did not know was that this little six year old boy, fighting with all he has, would teach me so much. So many lessons in love, hope, strength, compassion, and endurance.
First lesson was that I too easily get caught up in the world and what happens politcally. The doctors found Ryan's tumor on election day last fall, and I so quickly learned that there are so many more important things than who is president. I was one to watch the news every day, several times a day. I have learned that I can not make much difference in the state of our nation, but I can make a difference in the life of one little boy.
Next lesson is that, when you begin to focus on someone else and helping them with their trials, you quickly forget about your own. If you ever begin to feel down in the dumps and feel like your situation is hopeless... visit and volunteer at a children's hospital. The strength and joy you can see in these kids, even though they are fighting against all odds, is nothing short of amazing and so inspirational. It breaks my heart every time we go to Primary Children Medical Center to see so many children that are sick and hurting.. but it also fills me with determination to keep fighting. Who am I to complain of anything in my life when I see these small kids stay positive and upbeat when they are literally fighting for their lives?
I have learned that there are so many kind and loving people in this world. Ryan has touched the lives of so many that we have never met, yet we have come to love as family. He shows all of us that there are heroes in this world, and they are not actors, nor sports figures, nor celebrities of any sort. They are the kids like Ryan that fight every day, they are the men and women that CARE and do whatever they can to bring awareness, or a smile to the kids that are fighting.
I have learned to depend more on God... to turn to Him and trust in Him that everything that happens in our journey will be good, no matter what. I am learning that true Faith is not in claiming the miracle.... it is knowing that God has this, and He will use our fight for His glory. I have learned that God does, indeed, grant miracles... and there have been many we have received thus far.... but that it is God's will that be done, not ours.
Another lesson is that I can NEVER take any thing for granted. I can not get so busy and wrapped up in my own issues that I fail to see the small blessings we receive every day. I no longer let the little things in life go by without stopping to appreciate them. Memories are made each day, and I am learning to cherish them. Seeing Ryan and his sister playing a game and laughing... Telling a joke and laughing together.... holding Ryan's hand each night and singing to him while he goes to sleep.... and so many, many more.
I have learned to take things a day at a time, sometimes an hour at a time. I do not know where we will be tomorrow in this journey, all I have for certain is RIGHT NOW. The best thing I can do for Ryan is to live each day as fully as possible. To make every day special... to appreciate the things that each day brings. Look for the butterflies, smell the flowers, delight in the rain storms, marvel at the sunsets. Appreciate LIFE!
Nothing in our lives will ever be the same as it was BEFORE CANCER..... but that does not mean it can not be better. We are better people for this trail, we are stronger, and more caring. I have learned that every person we come across has a story.... they have the issues in their own lives that they are fighting. I have learned to slow down, to listen to someone share their trials, to try to understand and to care.
I have learned that the prayers of many can overcome so much, and I have learned to reach out for those prayers. The love and support and prayers from all of you that follow our story mean so much to us, I can never begin to express our gratitude to each of you. Please know that our load is lightened by knowing that you do care, you do love us.
Thank you, Ryan... for the boy you are. And thank you for letting me share this journey with you. Thank you for the lessons you have taught me, my little super hero.
.
I knew when we received the Cancer diagnosis that our lives would change immediately. Nothing would be the same. I knew we were in for the fight of our lives. I knew that there would be days that would be so painful they would require more strength than I had in me. I was in shock, and I was afraid.
What I did not know was that this little six year old boy, fighting with all he has, would teach me so much. So many lessons in love, hope, strength, compassion, and endurance.
First lesson was that I too easily get caught up in the world and what happens politcally. The doctors found Ryan's tumor on election day last fall, and I so quickly learned that there are so many more important things than who is president. I was one to watch the news every day, several times a day. I have learned that I can not make much difference in the state of our nation, but I can make a difference in the life of one little boy.
Next lesson is that, when you begin to focus on someone else and helping them with their trials, you quickly forget about your own. If you ever begin to feel down in the dumps and feel like your situation is hopeless... visit and volunteer at a children's hospital. The strength and joy you can see in these kids, even though they are fighting against all odds, is nothing short of amazing and so inspirational. It breaks my heart every time we go to Primary Children Medical Center to see so many children that are sick and hurting.. but it also fills me with determination to keep fighting. Who am I to complain of anything in my life when I see these small kids stay positive and upbeat when they are literally fighting for their lives?
I have learned that there are so many kind and loving people in this world. Ryan has touched the lives of so many that we have never met, yet we have come to love as family. He shows all of us that there are heroes in this world, and they are not actors, nor sports figures, nor celebrities of any sort. They are the kids like Ryan that fight every day, they are the men and women that CARE and do whatever they can to bring awareness, or a smile to the kids that are fighting.
I have learned to depend more on God... to turn to Him and trust in Him that everything that happens in our journey will be good, no matter what. I am learning that true Faith is not in claiming the miracle.... it is knowing that God has this, and He will use our fight for His glory. I have learned that God does, indeed, grant miracles... and there have been many we have received thus far.... but that it is God's will that be done, not ours.
Another lesson is that I can NEVER take any thing for granted. I can not get so busy and wrapped up in my own issues that I fail to see the small blessings we receive every day. I no longer let the little things in life go by without stopping to appreciate them. Memories are made each day, and I am learning to cherish them. Seeing Ryan and his sister playing a game and laughing... Telling a joke and laughing together.... holding Ryan's hand each night and singing to him while he goes to sleep.... and so many, many more.
I have learned to take things a day at a time, sometimes an hour at a time. I do not know where we will be tomorrow in this journey, all I have for certain is RIGHT NOW. The best thing I can do for Ryan is to live each day as fully as possible. To make every day special... to appreciate the things that each day brings. Look for the butterflies, smell the flowers, delight in the rain storms, marvel at the sunsets. Appreciate LIFE!
Nothing in our lives will ever be the same as it was BEFORE CANCER..... but that does not mean it can not be better. We are better people for this trail, we are stronger, and more caring. I have learned that every person we come across has a story.... they have the issues in their own lives that they are fighting. I have learned to slow down, to listen to someone share their trials, to try to understand and to care.
I have learned that the prayers of many can overcome so much, and I have learned to reach out for those prayers. The love and support and prayers from all of you that follow our story mean so much to us, I can never begin to express our gratitude to each of you. Please know that our load is lightened by knowing that you do care, you do love us.
Thank you, Ryan... for the boy you are. And thank you for letting me share this journey with you. Thank you for the lessons you have taught me, my little super hero.
.
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