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.
Friday, July 26, 2013
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.
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