Lydia’s Story

Site created on November 28, 2023

In early October this year Lydia was suffering from a loss of motor skills on the left side of her body. On November 1st we discovered that Lydia had a brain tumor. We have been overwhelmed and humbled by the outpouring of love and support from everyone since this news broke. Lydia had a successful surgery on November 7th to remove 85% of the tumor at UCSF. After recovering from surgery at UCSF Lydia was moved to acute rehabilitation at CPMC in the Castro. At CPMC her motor function has since returned and she is making amazing progress. While in rehab, to no one's surprise, Lydia became everyone's favorite patient. She has several new "besties" from the wonderful nurses and therapists at CPMC. 

On November 13th we learned from pathology that Lydia has brain cancer. She has Astrocytoma grade 3 IDH-mutant. This is an extremely rare form of brain cancer and happens to 1 in 200,000.  Lydia will be under going radiation for 6 weeks starting early December through January. Her treatments will be 5 days a week (M - F) at UCSF Parnassus.  Concurrently Lydia will be starting chemo therapy for the next 14 months. The chemo consists of a pill a day for 5 days in a row followed by 28 days off. The good news here is that daily travel won't be needed as she can administer the chemo pills at home. 

Speaking of home, Lydia returned home to us (Eli, Dave and Arrow) in Fairfax on Friday, December 1st. We could not be happier to have her home. She will continue her rehab at home with weekly visits from her Physical Therapist, Occupational Therapist and Speech Therapist. 

We want to thank everyone for helping take care of Eli, Arrow, the house and me (Dave) during this insane initial period. Forever grateful! We honestly would not have made it without you jumping in. Thank you for being our family. 

We also know a lot of folks have asked how to help. We absolutely need your help, and now that we know what life will look like for longer than 24 hours we are putting this site together to help coordinate meals, childcare, dog care and help around the house.  

MEALS—Doordash gift cards are the best for us at this time. We have limited fridge space so grab and go options are best. 

If you have sent one, we got it! Thank you so so much! We are overwhelmed by all the support. We plan to say thanks to everyone but it will take a while for us to get there. Do know that we love and appreciate you so much! 

VISITS—Part of Lydia's recovery involves social engagement. She would love to see EVERYONE! That said, her energy will be limited most days and we have a couple guidelines we need to follow. First, only two people at a time, please. Second, limiting visit time to 30 minutes. We know we live out of the way and it's a bit of a hike for most to get to us so we greatly appreciate your understanding with the small visiting windows. Please do not be offended if Lydia has to take a break. Good news is Eli can entertain you during breaks with all the most recent updates on dinosaurs (ask him about T. Rex). We will be attempting to share a calendar with anyone who wants to visit to sign up for a spot (more on this in a moment). Also, since radiation/chemo are bound to zap her immune system, we kindly ask everyone to be symptom-free, and wear masks/wash hands - we are well-stocked, so no worries if you no longer travel around with them.

CHILD CARE—Eli is a full blown 2.5 year old and has pre-school 5 days a week. We do have access to a Nanny to help with Eli pick up, meal prep, dinners, bath, bed time and even helping around the house during normal school weeks. We will need some help on weekends and during Eli's winter break coming up. Eli does love sleep overs now with his buddies. His schedule will also be reflected on the calendar mentioned above. 

DOG CARE—Arrow will be spending most of his time in the ADU at the back of our property. For those that have got Arrow clearance, taking him for walks or taking him for a day is very helpful. 

CALENDAR—This is coming. We will be sharing it with those that want to coordinate visits, meals, child care or just want to keep up to date. This will be shared in an upcoming post. 

With all that said, we want to say a heartfelt thank you to this phenomenal community of people. As Lydia has said, "this was not on our bingo card" but we feel so very lucky to have all of you in our lives. I have been in absolute awe of Lydia's attitude through all this. Her humor and huge heart has been a great asset. We will continue to post updates here and get the calendar going so folks can sign up. 

Again, thank you everyone for all the love and support. 

Now, let's go kick this cancer's ass. GO LYDIA! 

Newest Update

April 23, 2024 - Update from LYDIA!

Journal entry by Morrison Village —

Hello friends and family,

It’s me, myself providing this update!!

Well, well it’s been a busy couple of weeks over here, let’s go through the list:

  • Cuzzies Chew and Mel travelled from Hong Kong and Vancouver, respectively, to come help our little house and tiny person while we geared up for chemo. While they were here, they convinced me that the best idea for the following week would be to hop on a plane to join Caitlin, Joe and Jake in Hawaii! It was a great idea!  The boys (Eli and Jake) had fun splashing in the pool, checking out the beach and catching up on their favorite, Monsters Inc. We had the best time! Huge thanks to Caitlin and Joe for taking care of us while in Hawaii.  
  • Upon coming home, I got to celebrate my BIG birthday with my friends, which was so so good for filling my cup.
  • Also good for my soul was starting my six-week “healing with horses program” from UCSF and MarinHealth at Miwok stables in Mill Valley. I got to spend my birthday with Babe, the spunky rescued mare. It’s been a while since I’ve been able to ride, and will continue to challenge my body throughout recovery, but I’m excited to continue to work at it.
  • We also got a visitor this past weekend from South Carolina, cousin Jordan (aka Eli#1), and Eli #2 showed him his Fairfax ropes and all its T-Rex inhabitants. 
Regarding recovery, I had another MRI today that turned out to be stable (yay!), which is the best outcome we could ask for at this time. I will continue to get regular MRIs every couple months as chemo continues, but my oncologist seems optimistic that things are going well. On that note I am no longer needing to do regular therapy at CPMC, which is sad but awesome-awesome- AWEsome! We will be updating the calendar soon to reflect changes but likely we only need some help from time to time with Eli and running local errands for me. You can also just come to visit; would love to see you!

Next things on the horizon I’m excited to tackle as I continue to recover and increase my stamina:
  • Getting our yard ready for summer fun with Eli and friends
  • Completing our garden!
  • Continuing to cook (and testing  new plant based recipes)
  • Starting to try a new yoga practice (with some professional help)  as a continuation of increasing my mobility
  • Find out more about what I need to get started on for driver's training. The goal being to reinstate my license, when safe
I also want to take a quick moment to publicly thank Dave for being an amazing partner in life for all of this, it has not been easy.
 
And thank YOU all so much for your continued love, kindness and support. It does not go unnoticed or unappreciated.  We love you!

Sharing a few pictures of the adventures above.
 
xoxo, 

Lydia
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