Lydia’s Story

Site created on July 12, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Emily Kilburg

I just realized that it's been almost a month since the last update. We are starting our 6th week of radiation! Billy is the only one getting zapped with the proton laser rather than the spine and brain. We've had some ups and downs but Lydia is hanging in there. 

It's been an intense and stressful couple of weeks and I really haven't felt like talking about it. Cancer sucks and that's it. 

Lydia started to lose her hair in patches so she shaved it off. That was difficult for her to deal with since "hair is everything" (Fleabag S2, 2019).  Lydia is adjusting and is rocking the beanies. She's not interested in wigs and we are very proud of her self-confidence. 

Lydia has also been working hard in her therapies. She can say 'Ah' for 20 seconds (try it). She's hoping to be able to walk independently by Halloween so she can 'scare the crap out of people' on the Haunted Trail. Excellent goal in our opinion. 

Lydia's appetite is waxing and waning but we arebworking on adding kgs. We're keeping her weight steady with night time gtube feedings. The vomiting has also decreased. Yay! We still carry barf bags everywhere because you never know when it will hit. 

We are so grateful for everyone's support. We are extremely grateful to Gremlin Growlers for hosting 'Blast the Blastoma' benefit and The Curious Pig for providing food. Our friends and community are incredible! I was able to catch the tail end of the benefit and I was blown away at the amount of time and effort. My Southern Harm sisters went above and beyond. Thank you, thank you, thank you! 

We should all be home together for Halloween before starting chemotherapy in November. 

St. Jude continues to be phenomenal and we are very happy with the care. The photos show a representation of the ups rather than the downs.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Lydia Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Lydia's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top