As I see kids with a new DIPG diagnosis, it takes me back to that hospital meeting room and I remember exactly what I felt at that moment. The shock and horror to learn your child has a terminal diagnosis. Now that we’ve been battling for over seventeen months (click here to read Dylan’s story), I thought […]
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We just returned home from treatment #2 in Mexico. Dylan again seemed to tolerate the treatment well, which was a relief. Spending a night in a Mexican hospital makes us appreciate the comforts of home. It’s clean and everyone is very nice, but it’s quite spartan. We are becoming better users of Google translate, which […]
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Happy New Year! We had a nice, relaxing holiday season. Dylan had fun with all of her cousins and got her top requests of body wash and pajamas for Christmas. She seems to be holding steady, with regard to symptoms, and we head to Mexico again next week for treatment #2. It’s a long journey, […]
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Here is the latest update on warrior Dylan- Dylan had her first treatment in Mexico last week – she tolerated things better than expected and now we wait to see if there will be any positive effects from it. We are set to return in early January for a second intra-arterial chemotherapy treatment. It was […]
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Dylan had an MRI on Wednesday – the pons is stable; however, nothing could explain some of the new symptoms she’s having. Her oncology team believes it to be radiation effect and pseudo-progression. Jeff and I aren’t really buying that, and time will tell. We know her cancer is diffuse, so our hunch is that it’s active somewhere […]
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When Dylan was diagnosed with DIPG on August 8th, 2018, my mind quit functioning properly. All my thoughts became centered on Dylan and her care and treatment. I had previously been dialed in to my diet and exercise and I instantly lost the brain power to worry about my food. Now that we are fifteen […]
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Today marks one year since Dylan was diagnosed with DIPG. One year. I honestly didn’t think she’d still be here when we were diagnosed last August. I remember last August 7th and 8th so vividly. Going to the eye doctor to find out why Dylan’s lazy eye seemed to be getting worse. The eye doctor […]
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Today is the first day of brain cancer awareness month. On May 8th, it will be 9 months since Dylan was diagnosed with DIPG. In August, we were told that 9 months was the average survival time, but that wasn’t guaranteed, as many kids are not given even that much time. But here we are, […]
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