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.