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!