Katherine Completes Our Family

Question for the other #DIPG parents: did your child develop hiccups as the tumor progressed? Thank you, and I am so truly sorry for conjuring up memories which may hurt. It’s just happening so frequently that I’m confirming if it’s a symptom. Thank you…

Katie had a good day. She is tired, occasionally gasping, coughing, having trouble swallowing. She sounds so congested most of the day. It ebbs and flows. She is fully aware though and insists on walking around, being involved in everything. Someone’s always attentive so she doesn’t fall. The questions, because she’s frustrated and wants to know what she can’t keep up with mentally anymore. She is agitated often, but I’d be much more than just agitated if it was me. I’d be angry and spiteful if I had a much more mature awareness of my prognosis. So we are trying to be patient and let her go through the motions. It’s hard though, not to scold, or just redirect her harshly. The guilt… That keeps it at bay.
We love this child so much. She completes this family, loves sherbet, art, musicals, is opinionated, rainbows make her smile, is stubborn as a bull, loves unconditionally, is eager to please, demands family togetherness daily, and deserves more than four…
Thank you everyone for the support.





Photo Cred: Jenni and Kanani

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