Our Littlest Love - Ryan’s Hope

08/30/2025

Happy Re-birthday to our sweet friend Addy, Day Zero today and we’re only looking up from now on! Thank you to the amazing stem cell & blood donors out there, and thank you friends for any prayers you can share these coming weeks as she continues her journey.

Sending you all the strength & love Adelyn's Cure❤️❤️

10/10/2024

Our littlest love was nominated for Make-A-Wish Arizona by her team at Stanford Medicine Children's Health during transplant and last week she was invited to be the guest of honor at a special ASU Chi Omega fundraising event!!

The Sorority is incredibly active with fundraising and held a simply amazing gala — Brian gave a speech, the kiddos were on cloud 9 the entire evening (except maybe when Christian told me he wanted to take of his suit jacket, vest & bow tie immediately after arriving 😜). Ryan wore a beautiful new necklace, dress & sparkly HIGH-HEELED DRESS SHOES 😍 that she showed off to anyone who looked her way…it was a great evening.

Ryan’s wish is to have an outdoor play structure built that will have monkey bars and provide shade for her to play under — she’s SO excited, we’ll be sure to keep you updated once it’s built!

10/04/2024

Hi Emma — a little before bedtime message from Ry❤️❤️

10/04/2024

Today is Day +428

We 👏🏼 are 👏🏼 so 👏🏼 darn 👏🏼 blessed.

A year ago we’d just been readmitted to the PCU at Stanford Medicine Children's Health and today she’s healthy, she’s happy, she’s strong, she’s growing, she’s preparing for the ASU Chi Omega Make-a-Wish Gala tomorrow and she’s fresh off of our annual beach vacation with Grandma & Grampa (a trip we had to cancel last fall).

Today is ALSO Day 0 for our FAmily friend Emma!

Today is the day SHE got her new stem-cells!

Happy Re-Birthday Emma, we can’t wait to celebrate your engraftment and we especially can’t wait to see you again and celebrate Day +428 with you 🎉

09/29/2024

Please keep this sweet babe and her mama in your thoughts & prayers friends. 🙌🏼❤️ They need a calmer day tomorrow and an uneventful & restful evening until then.

Day -5

Tonight I’m updating you from the ICU on what was possibly the worst day of my life.

The plan for today was for Emma to start the next set of chemo medications. One of which (ATG for my FAmilies) is know to cause adverse reactions. Well… it did just that.

Emma had a pretty nasty reaction within an hour of starting this medication which consisted of shaking, VERY high blood pressure, and poor perfusion to her extremities. This whole event was nothing short of a nightmare and bought us a trip to the ICU where we will most likely stay for the next few days. Emma had to be sedated twice while the Drs tried to place an arterial line in order to get minute by minute blood pressure reads. I’m laying with her as I type this waiting for her to wake up.

The worst part is, even though she had such a bad reaction, we still have to somehow finish the 4 day course of this medication. We can’t go back. Hence why we are in the ICU. So she can be monitored extra closely.

I hate this. I’m terrified, and my heart is breaking that she has to go through this.

This journey has only just begun. Please continue to pray for my girl 🙏

High4 🙏 *Picture from before all the craziness started

09/26/2024

Please keep sweet Emma & her mama in your thoughts & prayers as she starts her transplant journey today.

We’re endlessly hopeful that Emma’s conditioning goes smoothly, her incredible (anonymous) donor provides the perfect amount of lifesaving cells, and that her mama can feel the strength of a village as far reaching as a friend of a friend of a friend of a friend ❤️❤️❤️

We love you so so so much Emma!!

Day -8

Here. We. Go

From here on out you will see me refer to days as - or + and then the number. These numbers refer to the days leading up to Cell day which is day 0 or, Emma’s RE-birthday! From there every day will be a + day. There are a lot of milestones along the way. Day 0 being the first and day +100 being a big one.

This morning Emma had her central line and NG tube placed. These will be used to give her chemo and any other medications needed and possibly nutrition at some point.
From there we went to our “new home” for a while on the stem cell transplant floor. We started decorating to make it feel a little less “hospital-y” The rest of the day has been relatively uneventful. Emma has been a little groggy from anesthesia and seemingly a little “down” which of course breaks my heart, but I’ve seen glimpses of my girl throughout the day. The NG tube is going to take some getting used to, but it didn’t stop her from showing off her “new feeding tube” to anyone she could. I’m hoping a little rest will bring my smiley girl back a little tomorrow.

Tonight she got some prophylactic medications and tomorrow morning she will start Busulfan which is the first of the chemo medications she will be given to get her body ready to receive her new cells from her incredibly generous donor.

Please send some good vibes his way too. Pray That the process to stem cell donation goes smoothly. I hope I get to thank him one day though I don’t know he could ever know how grateful I am for the selfless gift he is giving Emma.

I see all of your messages and texts coming in and I’m sorry it’s so hard to respond to everyone. But I promise I see them all and they mean so much to us. Please don’t stop that. I will write back when I can. Thank you so much for all of the messages and well wishes.

Please keep my girl in your thoughts. This is just the beginning.

🙏 High4

08/02/2024

Day +366 (…Because 2024 is a Leap Year🤣)

One entire trip around the sun for Miss Ry and her new cells 🙌🏼🎊

Happy Re-Birthday baby girl!! We love you so much!

07/08/2024

At PCH for her latest blood draw & checkup, should be the last one until her ONE YEAR post transplant visit in California in about a month 🙌🏼🤞🏼

Also, Ry & Daddy wanted to say to our sweet friend, Emma — an incredible Fanconi warrior friend of ours 😘❤️

06/13/2024

Check out Miss Ry! 🩹💪🏼

Her first post-transplant vaccine, DONE ✅.

Preparing for SCT/BMT last year wiped out all previous vaccine antibodies but now that her gorgeous new immune system is ready (lookin’ at you sissy Mikayla😍)…it’s time to strengthen it even more!

So grateful to be able to check this milestone off our list 🙌🏼❤️

05/29/2024

Look at our love! ❤️

7-year-old Ryan from Arizona lives with FA.

Ryan loves playing on the monkey bars and shooting mini-hoops off her brothers bunk bed. Her stem cell transplant (part of an FCF-funded study at Stanford) occurred this past fall and she is beyond grateful to be home and able to snuggle her kitty-cat Bridger 🐈‍⬛

Her mom shares how giving to FCF makes a difference to her family and so many others. Thank you, Carly, for your wholehearted support of our mission!

Ryan is in wonderful hands with her family, but it takes the entire community to continue advancing treatments for FA!

You can help this FA Month by making a gift that will change lives: https://fundraise.fanconi.org/famonth

05/01/2024

You guys. It’s. MAY. 1st.

Not only has that meant my Xennial mind has been singing *NSYNC “It’s Gonna Be May” all darn week like a lunatic, but it also means we’re 9 months post stem cell transplant for this gorgeous girl AND…it marks the start of (FA) month and the largest funsraising push of the year for this phenomenal org.

A gracious donor has offered to match $35k in donations to kick off the month!

Our goal is to raise $1000🙌🏼.

If we could ask $5 from you… that $5 doubles to $10 and then maybe if you share this post and one of your friends could donate $5… that doubles to $10. I’m guessing we can make quite an impact!

FAMonth

In Honor of Ryan Adel our Littlest Love