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.