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.

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.

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!

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.

. 

Today a friend, with all good intentions, told me "Everything is going to be okay." I know it was said in love, I know it was said in the spirit of kindness, and was said to try to help. And I appreciate the sentiment in which it was said.

However, nothing will ever be "OK" in the same way things were "okay" before cancer hit our world. Cancer is NOT okay, ever. It is not OK in adults, and it even more is not OK in children.

Ryan is losing his innocence, he is losing his childhood. His OK would be running and playing, going to school, being the rough and tumble little six year old boy that he was BEFORE cancer stole those things from him. He should be riding his bike,  jumping on the trampoline, playing tag with his friends and cousins. He should be chasing and teasing Abby. That would be OK.

Instead, Ryan is tied to an IV pole 24 hours a day. He is fed through an NG tube in his nose. He gets too tired to walk around a store, or to go to a movie. He has many medications that he MUST take daily, and shots in his arm every night. He has lab draws twice a week. He sleeps more than he is awake. His play consists of board games and video games... he has no strength to run and play. This is his daily OK now.

Along with the daily things no child should ever experience... there is also the admits to the hospital twice a month to pump poison into him in the hopes that it will kill the cancer. There are the pokes and prods all day and all night while he is admitted in the hospital. There is the vomiting and extreme nausea caused from the chemo. There is being woken up at night every two hours to pee, so the chemo does not stay in his kidneys and destroy them.

Ryan is regularly rushed to SLC for blood transfusions. This is part of his OK. If he develops  a fever, he is rushed again to the hospital for another admit, while they pour even more drugs into his veins. We can never plan an activity from day to day because we do not know if he will be OK enough to do it. We can not plan anything around when he should be going in for chemo, because if his blood counts are wrong, that will be postponed, sometimes several times.

Ryan's cancer OK also included daily trips to another hospital to get radiation. His Ok included being burned from the inside out in the hopes that the radiation would kill his cancer. It also killed his spine where the cancer is located. Ryan's OK from now on is the T2 and T3 vertebrae are dead. They will not grow with the rest of his spine. They will always be brittle and easily broken. This means that from here on... Ryans OK will be to never do the things little boys do... he will not ride a bike, he will not jump on a trampoline, he will  not do anything that could jar his spine and cause the dead part to break or be crushed. His OK could include developing scoliosis in his spine because of the dead vertabrae.

Nothing will ever be OKAY again. We may survive this, we may all be stronger because of the fight, but we will never BE OKAY.

I hate what this damned cancer has cost our little boy.  I hate what cancer costs anyone that has had to fight it. I pray for the day that no child ever has to fight this fight.

Rough Week

My heart and my head are full this morning. It has been a difficult week, and my emotions are running rampant.This week, Ryan started his radiation. He was such a brave little man.

The first day, they decided to try his treatment without anesthesia to see how well he would do. It is scary to walk back into a maze of hallways, not knowing where you are going. Then to turn into a room called a Vault, cement walls, stark white and bare. Ryans eyes were as big as saucers, and I could see the nervousness on his face. Being the strong boy that he is, he just went along without making a sound.

There is a small table to lay on... narrow, with a cradle to put your head in. Ryan walked up to the table and was not tall enough to climb on so he lifted his arms for me to help him up. He whispered... Gramma, I am scared."  I told him it was ok to be scared, that I was there to help him, and all of the other people in the room would also keep him safe. Surrounding the table there were six people he did not know, and I am sure that led to some of his discomfort.

Ryan laid his head back into the "cradle" for his head, and they brought his mask to put on him. The mask is formed to fit his head exactly and it is so tight that when they placed it on, Ryan closed his eyes and could not open them again. He startled and asked to be able to see, so the technician took off the mask and cut eye holes in it. Once again the mask was placed on his head. Not a sound did Ryan make, but big tears were forming in his eyes and I could see the fear.  He squoze his eyes shut to try to keep the tears in, but they rolled softly down his cheek. I would have done anything to take away the fear in those eyes.

The mask in place, the next step is to raise the table he was laying on. Up, up, up it went and Ryan reacted with panic. He does not like heights, and asked them to lower the table. Of course they could not do that, and he started crying in earnest. The decision was made to put him to sleep for the treatment. With his tears rolling, they gave him the drugs that would put him out.

It broke my heart to see our boy go through that. It broke my heart to see those tears and the fear. I so wish there were something I could do to take this all away from him.

Immediately after that first radiation treatment, we headed to PCMC for his two day chemotherapy session. After talking with the doctors there, the decision was made to put an NG tube in Ryan's nose to enable him to get his medications and nutrition via the tube. The radiation will burn his esophagus and he will be unable to swallow, and it is getting difficult to give him certain meds now.

The next day while he was asleep for his radiation, they inserted the NG tube. When Ryan was waking up, he kept trying to pull the tube out and gagging, trying to make himself throw it up. When he was fully awake, he relaxed and accepted the tube, but he is very angry with me for allowing them to put it in. Ryan HATES the tube. He is refusing to eat or drink anything because it bothers him to swallow. I know that it will take some time for him to get used to having it there, and that it will get better.

I have been an emotional basket case throughout this all. I know and HAVE placed my trust in God, and I KNOW He is in control of all of this.  God will give me the strength I need and He will be with Ryan every step of the way.  Having said that, God made us human with all of the human emotions. I am angry. I am in despair. I feel helpless and unable to cope with all of this, let alone do what must be done for Ryan. I cry. I literally ache for all the little children we see every hospital trip. I cry out to God.... WHY??????

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.

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!

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.

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!

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!

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.

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?

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.

Every morning I get up at 3:45 a.m. to fix my husbands lunch for work and to kiss him goodbye and wish him a good day at work.  After he leaves and the house is dark and quiet is when I fall apart. It is the time when my thoughts and emotions overcome me and I  feel the most despair and fear over this horrible CANCER beast.

I fear that our little Ryan will never be a carefree, young child ever again. The boy we knew before CANCER is not the boy we have now.  He looks different, he does not have the energy and the spark he had BC (before cancer). It is so much more than just losing his hair, and the puffy look his face has now from all the drugs. The sparkle in his eye is dimmed, the glow on his face, and the giggle he so freely gave BC are seldom there now.  He worries so much about things, and he expresses it by rubbing his hands and picking at his nails.  Ryan is a small child, and he does not have the words to express his feelings.  I know he worries about his little sister, Abby.  He worries about his mommy and daddy.  He worries about getting sick and throwing up on his blankets or his toys. He worries about his friends at school, and that they will forget about him since he is  not there every day. I often wonder what other worries our boy has.  It breaks my heart to know he has these on his mind and in his heart. Six year old boys should not have a care in the world, they should be able to run and play and laugh and tease and just be kids.

I fear the side effects of the drugs they pump into his little body.  No one should have to be given drugs that destroy you from the inside out, let alone a little boy.  He should be eating like a boy.... everything in sight.... not having to be begged to eat just one bite.  He should be able to go outside and build a snowman, have a snowball fight,  go down a hill on a sled,  ride hs bike or scooter, run and jump and play like any six year old.  Instead, he stays inside,  has to be careful of falling, of bumping into things, of anything that could bruise or make him bleed.  I fear the chances of him developing another cancer down the road from all the drugs he is being given now.  I fear what radiation will do to him,  and that the side effects from that will be horrendous, possibly even permanent.

I fear that Ryan will always think of me as the Gramma that gave him pokeys, the one that made him eat when he did not want to, the one that made him do all the ugly, hard, and painful things that must be done to fight this beast.  Just the fact that Ryan will have memories of all these things breaks my heart.  It kills me a little bit inside each time I have to give him a shot and he begs and pleads with me not to give it to him.  It kills me a little inside when I tell him he has to eat before he can play a game and he tells me I am mean.  It kills me when he is throwing up and I am holding the plastic pan, and I see the pain and fear in his eyes. It killse me when we have to hold him down and he is so afraid to have his port accessed to do labs or to do chemo or a transfusion.

Last night someone told me that I am strong.  I have never felt more weak and helpless than I do now.  There is nothing I can do to take this from Ryan, but, oh how I wish I could.  All I can do to help this child is to hit my knees every morning. In all the fear and despair I feel over this CANCER, the one thing I can do for Ryan and to defeat my fear is PRAY.  When I am crying and feeling so helpless, there is strength to be found through God.  I know that.... no matter what.... God is good. God is in control of this and every situation.  God will get Ryan through this battle, and God will conquer my fears.

It means so much to me, and all of us that are watching Ryan fight this fight, to know that there are so many people out there that care enough to pray for us.  None of you will ever know the strength I get from you, and the love I feel from you. It is only through prayer and God's love and Grace that we will win this battle. Please know the gratitude I feel for you all. Please know that your prayers are working for me, because each day I am able to pick myself up and carry on, and do what must be done for Ryan, and each day I am able to rise above the fear and despair.

Thank you for being here with me on this journey.  I love you all.
~ Jill

 On December 12, 2012, while Ryan was taking a bath, we noticed big clumps of hair coming out in our hands. Ryan reached up to wash his head, and was startled when he pulled out a large clump in his fingers. With tears in his eyes, he asked Papa if his hair was all going to fall out  now. I had a talk with him a week earlier about one of the side effects of chemotherapy might be that he would lose his hair.

Papa told him, that, yes.... the medicines he was taking was making his hair come out. Ryan, the trooper that he is, asked " Will you shave my head, Papa? I want to cut off my hair instead of letting it all fall out."

Out came the clippers and off went the hair. Uncle Sam, Uncle Mike, Uncle Kevin and his cousin Dylan all shaved their heads, too... to show support for Ryan. He was such a brave boy.

I, on the other hand, took his hair loss quite hard. It made me cry to think this small boy would now look like a cancer victim. There was now a "mark" the world could see and know that our boy was suffering.Ryan no longer looked like our Ryan.

It took me a few days before I realized that losing his hair was not the stigma I had thought it was. Instead, it was a physical sign to the world that our Ryan is, indeed, a super hero. Now, everyone that sees him will know the battle he is fighting, and they will know that he is such a strong, brave little man. It is not a stigma to lose hair in this fight, it is a badge of honor.

Now, in the past few days, Ryan has started to lose his eyebrows and eye lashes. He is worried they will never come back, and he is taking the loss quite hard. He has cried and worried over this hair loss. I tell him that they will grow back, and that the loss is a sign to the world of what a brave boy he is. That there is no shame in the hair loss, that he can be proud of it, and know that he is strong enough to fight a fight that many adults would not be able to fight so bravely.

Each obstacle we meet in this journey is a battle to be won. Overcoming the feelings the loss of Ryan's hair, eyebrows and eyelashes has brought on is one small victory. I am proud to be seen with my little hero. I am proud of the way he has handled the loss.

 Last night we were at a little diner eating dinner, when a little boy in the booth behind us made a comment about "that boy has a bald head." Ryan looked at me and said, "That boy must not know about cancer." and went about eating a few bites of his dinner. I worried about how Ryan would react when he heard comments on his baldness.... now I know that worry was senseless. A battle won for Ryan!

November 6, 2012 began just like most other days, with a cup of hot coffee and catching up with emails. My grandson, Ryan, had a doctors appointment that morning, and I was anxious to hear what his pediatrician would say about the pain he had been having in his back off and on for a few months. Previous x-rays had shown no problem, and she was treating it as muscle strain. Ryan had been at our house for the weekend, and had been in a lot of pain and having trouble moving around much. His back was very sore and Ken (Papa) and I had spent a lot of hours rubbing it, and trying to give him some comfort. 

Crystal, Ryan's mom, called me from the doctors office in Layton, UT and said that the pediatrician still could not find the cause of the pain, and still thought it was muscle strain, but that she could take him to Primary Children's  Medical Center in Salt Lake City, UT to the emergency room and get further testing done. By the time they came by the house to pickup some things they needed for PCMC, Ryan could not walk without someone holding him up, and he was in extreme pain. 

After several hours of testing and scans, the doctor seeing Ryan at PCMC told us they had seen a "mass' on Ryan's spine, and they were going to schedule surgery to remove it. At that point we were told they thought Ryan may have neuroblastoma.. Just before time for his surgery, the doctors again came in to tell us that the decision to remove the tumor had been changed and they were just going in to extract a piece of the tumor for biopsy. 

By November 9, Ryan could not sit up on his own, let alone walk. His Aunt Nikki came to visit and Ryan wanted to go to the play area to get out of his room for a while, so Nikki and I loaded Ryan and his pillows into a wagon and took him, IV pole and tubes included, down to the play room. Abby, Ryan's little sister was visiting and she went down to play, too. Later that evening, once again the doctors came in to deliver the shattering news that Ryan has CANCER. The biopsy showed small blue cells that were consistent with several types of cancer and further testing would need to be done to pinpoint which cancer it was.

I do not think you can ever be prepared to hear the words.... YOUR CHILD HAS CANCER..... we knew there was a mass, we knew it was very serious... but somewhere in the back of our minds, I think we were hoping that this would just be all a big mistake and in a few days Ryan would be up and running and playing again. 

In the meantime, the neurologists had been monitoring Ryan and his motor skills, and trying to determine if surgery would be needed to relieve some of the pressure from his spine. They decided on a rigorous course of steroids to bring down the inflammation around the spine that was effecting Ryan's walking and standing. 

The next few days were nerve wracking and tense. Finally on November 12, the news came back that Ryan has Ewings Sarcoma. Ewings strikes around 250 children a year in the US. We had never heard of it before, but it did not take long for us to find out what a beast this was we now have to battle. But, battle it we will.... and we will WIN. 

 This blog will be about Ryan and his strength and courage as we go forward. It will be about the struggles, the triumphs, the tears, the joy over small achievements. It will be about my thoughts and observations and emotions as our family goes on this journey none of us wanted to take. 

Thank you for caring enough to take this journey with us. For praying for and loving us, and for standing by our sides. We know we are not alone, and for that, I give Thanks to God. It is through the prayers of many that we will get through this and how we will overcome. 

~ Jill ~