I’m consumed by this. I’m consumed by Ronan’s disease. I research whenever I get a free second; doctors, hospitals, treatments, other kids, side effects, medicine’s, anything and everything I can get my hands on. I have to because I can’t look back at this and regret that I did not do enough. I can’t even focus on my twins anymore. All I care about it trying to find the answer or a clue to saving Ronan’s life. I am consumed and it is not a fun place to be. It is dark and lonely and I can’t stop. I’m like an addict and Ronan’s Neuroblastoma is my drug. I want to be able to enjoy things in my life, but I can’t. I think about him and his disease even when I sleep. I am on research overload, exhausted, and cannot focus on a thing. Every second I am away from the computer and doing something else, I am filled with too much guilt. I know there is only so much I can do… but if I stop, what if I miss something really important?? A piece of information that could somehow help us. I need to stop. I am going to drive myself crazy. I just love him so much. My heart is shattered into a million pieces and I don’t know how to put them back together. I am angry, sad, mad, scared, weak. Why him? Not him. This still cannot be real. I am so overwhelmed with everything in my life..even the simple things like Liam and Quinn’s homework at night. They deserve so much better than what they are getting at home right now. Everyone is on pins and needles. I’ve got to find a way to do things better around here. I yelled at my mom tonight. She was just pointing out the facts… like how stressful our house is. I yelled at her and asked her what did she expect? I shouldn’t have done that, but for some reason it is easy to take my anger out on her. I guess because she’s my mom and I feel comfortable enough with her to do so. It’s still not right…
I watched the evening news tonight with Katie Couric. They did a segment on Neurblastoma. The girl featured on it was Hayley Kudro. She is 6 and is towards the end of her treatment for Neuroblastoma. I sat and watched her story and cried. She is so beautiful and strong. She is really responding to her treatment and it sounds similar to what Ronan will be doing. He will be doing the immunotherapy as well as some other things that are supposed to increase his percentage of survival. I copied the story that was on the news tonight. You can read it below.
Neuroblastoma is the most commonly diagnosed cancer for babies in the first year of life. It’s an aggressive disease and less than half of its victims survive. But there’s new hope in a new treatment. CBS News Contributor and Neurosurgeon CNN’s Dr. Sanjay Gupta reports on this promising therapy that’s already saving young lives.
Kindergarten was supposed to mean new friends and ballet for 6-year-old Hayley Kudro. But she said she wasn’t eating well because of her tumor. “It filled up my whole belly,” Hayley replied.
Instead, she’s spent the past year enduring toxic treatments for a cancer her family had never even heard of.
“We didn’t really have a choice,” said Haley’s mom, Karen. “It was do this, or lose her.”
Last year, Hayley was diagnosed with neuroblastoma – a cancer of the nervous system. It was the most aggressive form: she had a softball-sized tumor in her belly that choked her liver and pancreas.
“Without treatment it will grow and spread and kill the child within a matter of months,” said Dr. John M. Maris, of The Children’s Hospital of Philadelphia.
Hayley had the standard treatment including chemotherapy, major surgery and radiation. But she’s also receiving a drug treatment called immunotherapy – designed to rev up her own immune system to kill the cancer. The immunotherapy drug not only stimulates the child’s immune system, it attacks tumor cells.
A new study of 226 high-risk patients like Hayley found that adding the immunotherapy to the standard therapy improved the survival rates by 20 percent. It was so effective, the trial was stopped early.
Gupta asked Maris, “How often do you get to say in cancer research, ‘wow, we’ve found something that works, maybe even cures?’”
“This is one of those moments where we’ve proven a therapy makes a major difference,” he replied.
This is an expensive treatment, costing up to $40,000. Its side effects are relatively mild, just severe flu symptoms once a month during the treatment.
Immunotherapy will be added to traditional treatments in a variety of cancers including breast cancer, melanoma, and kidney cancer.
Hayley is back in first grade. Doctors believe her tumor is gone. Thanks to immunotherapy, it may not come back.
This is all I can write tonight. I have a raging headache and have been throwing up off and on for a couple of hours. Sorry for the gross details… nobody wants to hear about my puking. But this is my blog and censoring what is going on with me is not going to happen. Ronan is asleep due to not napping today and I am going to turn everything off and go to sleep too. We have a very busy day tomorrow with getting his scans done. Thanks for visiting my blog. Please help me spread the word about Neuroblastoma and send this to everyone you know. Thank you<3
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