As I was perusing the Amazon generated playlist, “Your Top Songs of 2019,” I started thinking about the joy that music brings. So often, we start playing music in the house, and it doesn’t take long before a dance party breaks out and everyone is singing and having fun. Both Dylan and Mason love music […]
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Things have been going well over the last week – Dylan lost her second tooth and had a fun hair appointment with her friend, Bridget. She continues to be holding steady from what we can see. She will be having surgery this week to have an ommaya catheter put in. This goes into her left […]
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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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Watching my daughter and several other six-year-olds practicing their leaps in ballet class, one can’t help but be filled with joy. They each have been given a little cone to jump over, turning this into a game and heightening the fun. The energy and exuberance in the room make me smile and laugh as they […]
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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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This video is from exactly three years ago: December 19th, 2016. Dylan was 2 (almost 3 as her birthday is in February) and was so excited about the pretty dress she received from Grandma. We wanted to post this video to show you the real Dylan. She has lost so much to DIPG, physically. You […]
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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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