Zaida's New Treatment in New York!
After nearly 9 years of almost continuous chemotherapies, surgeries, radiation treatments, scans, blood draws, relapses...
She's been granted compassionate use for a drug that has great promise for her! It's a drug that is still in trials in adults, so trials for children are a long way off.
Zaida may be the first kid to ever get this drug!
She has not been doing very well. She's running out of time, and this could be exactly what she needs.
It will require many brief trips to New York so they can follow her closely.
It's a huge opportunity!
Let's all ease their burden and help this family with their upcoming travel expenses!
Follow their story at http://www.caringbridge.org/visit/zaida!
Then I got the same message on Facebook.
Then again on Twitter.
I wrote her back, asking for more information. It was a tech conference and she wanted me to speak about social media...
I thought, No... because I'm terrified of public speaking... but then I got to thinking... How often does this kind of opportunity happen? Maybe it would be good for me to really step out of my comfort zone... I could do that. Whatever, I said yes.
Then, there we were, in the middle of a terrible place, with NO more options for Zaida, and they gave us a week or so... She was dying, and I couldn't wrap my head around that. This child, who I held for 9 months, who nursed from my body for 3 years, who trudged through 9 years of pokes, chemos, scans, surgeries, and radiation, who did everything with passion and grace (and a preteen's attitude), who wouldn't take shit from anyone, she was dying?
This was fucked up. Just fuck everything. I'm done.
I saw my daughter die. The worst possible thing... A million things to do, a million emotions... Planning her visitation, what to do with her, and her legacy, and her tributes. And planning her Celebration of Life, all for her, for her people.
I'm still here. I can live in this world. I can handle anything... Zaida's okay now... I could do it. So I did.
I was honored to be part of a panel discussion at The Digital Health Evolution Conference in Philadelphia, about how social media impacted Zaida's treatment, myself, and our family. It was a conference for entrepreneurs, execs, doctors, and others in the healthcare industry.
The communication between patients, families, and their entire healthcare team is crucial, and can only get better as these industry leaders come up with innovative ways to improve engagement between patients and healthcare staff. The digital technology we all are using must be a integrated into the healthcare system.
I was on the panel "The Role Of Social Media In Patient-Centered Care & Preventive Medicine."
Afterward, several people thanked me for being there, for how real and personal the topic became.
I wanted to honor Zaida, and hopefully her life and struggle will make a difference, yet again.
Here are the photos http://digitalhealthevolutionconference.com/photos/
RSVP here if you can (or just come!): https://www.facebook.com/events/398742593844348/
“It will be the little things that you will remember. The quiet moments, the smiles, the laughter. It will be the memories of these little things that help to push away the pain, and bring the smiles back again.”
On behalf of Zaida’s Family, you are invited to a Celebration of Life for our precious girl.
Please join us for a FUN, free, kid-friendly evening of sharing memories, music, and love. There will be face painting and other kids’ activities, live music, entertainment, as well as plenty of food, drinks, and desserts.
Zaida has touched the lives of so many and we hope you can come out to celebrate and honor her beautiful spirit.
All are welcome to join us! We look forward to coming together as friends, family, loved ones, and community to remember this amazing young lady. Thank you all for your love and support!
Saturday, May 6, 2017
4:30 PM - 9 PM
Vista Ridge Community Center and HOA
2750 Vista Pkwy, Erie, Colorado 80516
Julie and I were interviewed yesterday for this article.
Thanks to everyone! <3
Please drop in anytime. There are no planned services, simply visiting, a repeating slide show, some of Zaida's favorite music, and light refreshments!
We expect plenty of pink and bright colors! No rules; anything goes!
We love you all. Thank you for your love and support! ♥ ♥ ♥
Check back on the link below for her slideshow.
There is plenty of parking in the lot, in the field beyond the lot, and at the neighboring bank.
Her obituary, details on the event, and an area to leave condolences:
I'm very sorry to hear this. Sending love.
Oh Nichol, I don't have words for you. The tears are flowing and I can offer to be here for you. Please let me know how I can help. I am sending hugs to you and Runa. I am so sorry for your loss. Prayer from all of my family.
Our hearts are broken as we cry for beautiful Zaida and for Nichol and all her family and friends. Zaida put up such a courageous fight and was an inspiration to so many, including us. Heaven welcomed an absolutely beautiful angel on this day. May our Heavenly Father embrace Zaida's family with comfort and loving peace. You are all in our thoughts and prayers. Warm hugs, Daniel & Lori Richardson
My thoughts & prayers have been with Zaida and the entire family. May God give you strength & comfort as you watch over your sweet child.
We have not had the pleasure of meeting your darling Zaida but have loved watching her fight for her life and showing her spirit. We send you all the love we can gather... Mike and Pam Walters
I am Zaidas Grandmother. I wish to say Thank You To all the great, sweet people who donated money to help my Grand Daughter and Daughter Nichol. Merry Christmas to all of you.