It is the last day of September, the last day of Histiocytosis and Childhood Cancer Awareness month. I have so many feelings rolling around inside of me... JOY- Olly is doing so well! He is pretty much like a normal little boy.. he is six weeks seizure free, happy, sleeping though the night, totally potty trained, and just so beautiful and spunky. FEAR- There is no cure. So many of Ollys histio friends are relapsing, we lost a histio warrior this week- she was diagnosed 3 weeks ago, and we KNOW that there is a huge chance that Olly will relapse. every bump, rash, daydream, owie, and sniffle I worry, Is this it? There is no funding for research, no insurance coverage for the meds, when they can treat it- they can cure it.... GUILT- yes guilt. Why did my baby survive, why did he put this beast inplace when so many havent.... I STILL have not told him about Abby Grace, the little girl that was his first friend on the first day of his outpatient chemo who ALWAYS had a hug and a smile and was a brilliant ray of sunshine even when he was so sick... He asks about her sometimes, I change the subject rather than to tell him that she dances with the angels.. like Raymond, Caleb, Silas, Talia, Gabey, Niles, Francisco, Steven, Robert, Thomas, Trinity, and Destiny... and these are just the names of the kids that I can remember off the top of my head, of kids we knew either online or while in treatment..... I sit and pray and hug and hold the parents of these babies and cry with them over the losses and think, Thank you, Jesus, for not taking my baby. He was much sicker than several of these kids and they were taken.... and I am guilty because I am watching Olly run with his dog as I type this and smiling while they hold pictures of their children and cry. HOPE- I know that we are fortunate to live in California and that the medication that is giving him a fabulous quality of life is legal here. I know that God has a plan for him and that he will touch the lives of others. I pray every day for the researchers to be funded enough to be able to find a cure.... Until then, I hold onto the knowledge that SOMEDAY my baby will be cured. He will be whole and happy and have no more meds or pain or fear.... Whether that is here on Earth or someday in Heaven this WILL HAPPEN and that gives me Hope. Please, think about histio/cancer kids more than just in September... Cancer doesnt end on Oct 1. It keeps going....
Posted on: Wed, 01 Oct 2014 01:46:19 +0000
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