One month down. Honestly, it has been a blur. It’s like time stood still and was on fast forward at the same time. I think I floated through the first week, then reality slowly started to sink in. I can’t even explain the pain of not having Dylan physically present with us. Jeff, Mason, and […]
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Dylan had an MRI yesterday in Portland. We put together this video to give a glimpse into her (and Casey and Jeff’s) day. It’s always hard looking at these pictures/videos, thinking of what Dylan is missing out on. We so wish she was in kindergarten with all her peers right now. However, we are also […]
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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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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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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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