DIPG

Five Ways My Parenting Has Changed Since My Niece’s Brain Cancer Diagnosis

The day that Dylan was diagnosed with DIPG, by far one of the worst cancers out there, is the worst day of my life thus far. I can vividly remember those days in August 2018. I had an almost 3-month-old and was easing back to work from maternity leave. I also had a one-year-old and […]

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MRI Day 1.29.20

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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dipg warrior dylan as a baby in sunglasses

Our Little Honey Badger

Dylan came into this world as a force. She still is. When she started walking, it was with such purpose and “swagger” we nicknamed her honey badger. She always knew exactly what she wanted and went right for it. I am sure that having Mason as a big brother helped her with this also. Sister […]

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Mother holding daughter with pediatric cancer

What I Wish I Knew At Diagnosis

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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Dylan Update 1.10.20

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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ballet shoes representing cousins, one not dancing dipg

Fighting Back Tears In Ballet

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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Dylan new year's dipg update

Dylan Update 1.3.20

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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Brother and sister standing in front of Christmas tree

Dylan Twirling in 2016

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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Dylan Update 12.18.19

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 Update 12.6.19

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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