Wednesday, June 26, 2013Posted 19 hours agoToday Jonas spent the day at CM and had the final two tests (lumbar puncture and bone aspiration) that will complete the picture of exactly where we stand. Even before those results are all in, we have had consultation with our doctors. He has no new lesions, but the standard course of treatment has not done much for beating his current cancer back.Last Friday we met with our assigned doctor from the POETIC department at Children's Mercy. POETIC stands for Pediatric Oncology Experimental Therapeutics. They will take over Jonas's cancer treatment from our primary oncologist at this point as we switch over to a clinical trial/experimental treatment. The clinical trial they have recommended (and that we have agreed to) for Jonas is a 21 day chemotherapy regimen (with an experimental drug) that can be repeated and repeated if it appears to show promise. Unfortunately, our doctor tells us, this will not be a CURE for his cancer. It will most likely just buy him some time. Jonas has an aggressive form of Ewings. The earlier Ewings returns to a patient in under 24 month's time, the more difficult it is to stop. -Jonas's cancer came back after just nine months.Needless to say, the past few days have been an emotional rollercoaster for our family. We have been researching and reading, pouring over medical trials and natural cures, pulling out our hair and mulling over our options. Too many options. But we have to get this right. Now is a very critical time in the progression of his cancer. So..... we put ourselves in the hands of our medical professionals with their wisdom and experience, hoping that this is the right choice.Jonas will begin his clinical trial next Tuesday.
I have people to thank and other news to share, but I have to get some sleep. We're all emotionally drained. I will post again soon.One other note. We are a self-employed family. And summer is our slow season since everyone is outside doing physical activity - it's not typically when people buy exercise equipment. If you know of anyone who would buy a commerial-quality piece of exercise equipment please have them call Joel. 816-665-1768. We have ellipticals, treamills, bikes and steppers like you would find in a healthclub. Heavy-duty stuff. Or visit our website FitnessServiceKC.com to see for yourself. We would really appreciate your business.My heart goes out to my husband who can't stand the idea of not spending every minute of the next year with his son...just because he is stuck breaking his neck to make ends meet.
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About JonasJonas has been suffering from intense facial and headache pain
for approximately two months. His...
5 years ago