Our Celebration!

Dylin's party @ Golden Spoon to celebrate her good news! Thank you to all of our friends who came to support us and thank you to Golden Spoon for your donation!

Dylin's story & a reason to celebrate!!!

Dylin was born with Polycystic Kidney Disease. She has been the miracle child, unaffected by this horrible disease so far. But 2 years ago this month, Dylin became very ill. We thought it must have been from her kidneys, but it wasn't. We were now looking into what could be an entire new disease, in her blood! Dylin spent 3 months in and out of the hospital and saw countless doctors.  After numerous tests and 5 specialists that could not agree on her diagnosis.... I took matters in my own hands! It was midnight on a Friday night and I searched on UCLA's website for the pediatric hematology group.  As I looked over pages of doctors’ names, I prayed I'd know which one to email and hopefully grab their attention.  As any mother would, I chose the lead Chief of Staff for the Hematology group.  I wasn't playing around! I sent a brief email and attached Dylin's numerous lab & radiology reports. TEN hours later, we received a call from UCLA asking if we could be there Monday morning. They had never seen a PT/PTT (blood clotting ratio) count so high before in a child.   I thought my heart was going to stop. You never want to hear news like that from a world renowned medical center. Dylin and I flew there on Monday morning and after 12 vials of blood drawn, we had a meeting with 5 members from the hematology group, including the head doctor I emailed. Dylin was diagnosed in 24 hours. She has a lupus variable in her blood that makes it hard for her blood to clot. It affects her liver, which was the first sign we had that there was something wrong. As much as you don't want to hear Lupus or that she now has two incurable diseases, it was a relief to have answers. The good news that was presented, but not promised because Dylin was so young, was that UCLA had seen children grow out of it as their blood "got older." For the past two years, we've watched carefully of accidents and tested her blood every 3-6 months. Last week, Dylin saw the hematology group in Vegas to check her blood count. We've been told that if we didn't see the numbers lowering by the time she was around 6 and 7 years old, the disease would probably not go away. Last night, I received a quiet phone call from Dylin's doctor. When I heard a crackling voice on the other end, my heart sank. His voice was crackling because he was choked up with joy to tell me Dylin's numbers didn't just decrease but that they stabilized to where they should be; just like any other child!

We still have a long tough road ahead with Dylin's kidney disease but as for today, we are celebrating that our little Rock Star's battle for life has paid off!!

In honor of Dylin’s amazing news, our good friends at Golden Spoon would like to host a “Dylin Night.” A portion of all sales on THIS Thursday, March 24^th, at the Eastern/Sienna Heights location will be donated to The Dylin Cenname Medical Fund. As of today our family has raised & donated over $125,000.00 in funds for research, to find a cure for PKD.

Dylin & her family will be at Golden Spoon from 5:30-8:30pm. You may also support her by purchasing frozen yogurt anytime during business hours and mention you are there for Dylin!

Thank you for your ongoing love & support!

Announcing Dylin's own BE KIND shirts!

We are excited to announce Dylin's very own Be Kind Shirts.
If you aren't familiar with the Be Kind shirts and what they're all about, I strongly urge you to check out http://www.joshstevensfoundation.com/

One month before Josh’s 13th birthday, he lost his life in tragic accident. His time on Earth was much too short, but his kind heart and spirit will live forever. Josh was known for his unique brand of kindness. His legacy continues to inspire. The Josh Stevens Foundation was created to honor his life and the example he set for us all to follow.

The Josh Stevens Foundation and Dylin's Foundation have joined together to bring awareness to the Be Kind campaign and Polycystic Kidney Disease. Profits from shirt sales will be shared between the two foundations.

When thinking of a slogan for Dylin's shirts, I explained to her what we were doing and asked her what she wanted it to say. (on the front of the shirts they all say Be Kind, and the back's have different sayings on them).Without a moments hesitation Dylin said, "What about, Rock On! Because I Rock On after all my blood tests and other testing." I had chills through my body, and knew this was perfect!!!
She also told me down to the detail of what she wanted her logo to look like. With Dylin's requests, this is what I sketched. The entire project was exciting for the both of us and we are happy to share this with you!

This logo and Josh's logo are both on the back of the shirts as well!

 

A long overdue update

Nov. 22, 2010 - I have been trying to update our other website for a year now. It locked me out, anyway… let’s catch you up!! Dylin has had a GREAT year. She is in 1st grade now! You’d still never know anything was wrong with her. Strong, Sassy and Self Sufficient!! Dylin not only has PKD, she was diagnosed with a transient blood inhibitor. This was found when she was having signs that her liver wasn’t working. It is in the lupus family and means that her blood will may not clot if she were to have an injury. It’s complicated, let’s just keep it as that! In research, I’ve found that PKD and Lupus run closely in some families. You know, cause one disease isn’t enough, bring on more! ;o) Dylin’s blood tests have been good and her last Nephrologist & Cardiology appointments went so well, they both decided to give her the rest of the year off in testing!!! That was 6 months ago. We are grateful everyday to have our little firecracker. I will say that I’m not naive to the fact that I do get scared thinking “when’s our day?!” but I keep busy (too busy), pray, research, laugh and enjoy Dylin everyday…. it’s how I keep my sanity. (or what’s left of it!)

Update

 October 5th, 2009 - Dylin has her blood test this Friday. Please keep her in your prayers!!We have had the blessing of not seeing any Doctors since the first of June. Dylin has a nice break, as long as nothing arises, until September. She will then have testing to make sure her blood has started to clot. During this nice break, we have been spending lots of time making up for the many days in Doctors, hospitals, labs, UCLA & diagnostic centers. Tyler & Jordyn have been the most amazing troopers and are always supportive.

Another milestone completed!

Dylin Graduated from Pre-school!!! As sad as I am for losing my little side kick when she is off to Kindergarten, what a huge triumph it is that she is going to Kindergarten.

Update since UCLA

JUNE 1, 2009 ONE MONTH & NO DOCTORS VISITS!!!! THANK YOU TO EVERYONE WHO HAS BEEN PRAYING FOR DYLIN.