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 ~