Cure Our Dylin

Our Celebration!

noreply@blogger.com (Kristin) — Fri, 27 May 2011 18:28:00 +0000

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!!!

noreply@blogger.com (Kristin) — Wed, 23 Mar 2011 05:18:00 +0000

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!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:48:00 +0000

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

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:39:00 +0000

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

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:35:00 +0000

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!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:34:00 +0000

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

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:33:00 +0000

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

UCLA update

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:32:00 +0000

This 4 mo. old baby is having somewhat of the same issues as Dylin. She had a simple sore in her mouth that wouldn’t go away. They figured it was from sucking on the bottle, but her doctor decided to check her blood & it was discovered that her blood wasn’t clotting either. She was diagnosed of having the opposite of what Dylin has as far as the baby’s blood isn’t absorbing the protein, Dylin’s blood has a block (the inhibitor) that prevents the protein from clotting the blood. Isn’t she adorable!

UCLA

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:31:00 +0000

April 21, 2009

Dylin & I arrived at UCLA, it’s sad when you’ve been to so many medical places and you become so excited when you see how awesome a hospital & staff could be. It was like seeing rock stars & celebrities all over campus.

Dylin had 12 viles of blood taken yesterday and by this morning, 5 members of the hematology group met with us and said how baffled they were on the results. They said they truly thought that there was going to be a huge blood disease on their hands. Although that wasn’t the case. Dylin has an inhibitor in her blood that causes her proteins to not let her blood clot. The labs they were conducting were to determine which inhibitor like lupus or others. They concluded that she has the best one! (if you had to have one.)

She has a transient inhibitor. It comes & goes, most the time when she’d have an infection it’ll flare up. The only thing we’ll have to do is give her medication before any surgeries or if she were to get injured she has to have a medication to help her blood clot. (this will be interesting since she is our accident child & starts Kindergarten in a few months). This picture is some of the hematology group that met with us. LOVE THEM!!

On our WAY!!!!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:30:00 +0000

April 18, 2009 - We are heading to UCLA Monday morning. The doctors there say they will have tests done & a diagnosis by Tuesday afternoon. YEAH!!! We may see an end to the madness & then just take care of whatever this unknown medical issue is. I will hopefully be able to post updates while I’m there!

They CALLED!!!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:29:00 +0000

April 12, 2009 - Got a call back from Mayo & UCLA. Nothing is easy for us. Mayo wants to see me, but doesn’t see pediatrics. UCLA wants Dylin. We are working with them on making sure we have all our films together and we'll set up a date!

The wait is over.... sort of

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:27:00 +0000

April 8, 2009 - We finally received a call today. Dylin has an inhibitor in her blood. It is blocking the proteins in her blood to make the blood clot. The suggestion is to wait and see if the blood corrects itself in case she had an infection during those two weeks of blood testing. (all news to us as no one in this weeks of medical hell has been told us that there is a possibility that this could correct itself). Her Dr. would like to wait 4 weeks, repeat the blood test and if the blood didn’t change, then they start checking for which inhibitor it may be, like Lupus or some others. I of course asked, “Why haven’t you been checking this all along, why wait… you have taken so much blood, couldn’t you have run these all along.?!” But I’m just the dumb mother. I’m praying for UCLA or Mayo to get back to me. This has gone on way too long.

Not giving up!!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:25:00 +0000

The bracelet Dylin is wearing below is her charm bracelet. She is given a new charm everytime she has a procedure. Sadly, we are starting her a second bracelet. (she has over 30 charms) It does help to bring her a smile, knowing she has one waiting in my purse after a blood draw.

April 7, 2009 - No results yet! I made 4 phone calls on Monday & 6 today and no one can seem to find her results or have anyone competent calling me back. I’m so over Nevada health care. I’ve emailed 2 doctors at UCLA & 2 at Mayo Clinic. We are ready to leave this town. Many of you have emailed me regarding my health. I’m sorry for leaving you in the dark. I did delete my medical updates, sorry. The bad news kept rolling in for the past 4 weeks that it was just too much to handle, comprehend & share. I did go in for my yearly scans & told my doctor to hang on to the reports for a bit until I got Dylin’s health under control, but it wasn’t more than a few hours that the calls began to start. My left kidney is hemorrhaging, the tissue is damaged & I need to have a 4th thyroid biopsy. My Dad had thyroid cancer & I have nodules on my thyroid that like to grow & change shape so they just feel that hey why not, stick her with another biopsy. I will tell you that has to be the most uncomfortable feeling in the world…laying perfectly still, while they drive a needle in your neck. I’m becoming a pro now though. I think that is the plan now…. “everytime we don’t know what to do for Kristin & Dylin, we’ll just ask for more blood & biopsies.” I did see a surgeon & you’ll be happy to know that he said he’ll do nothing for me. =/ In a weird way it does make sense. He said you have a disease that we don’t like to do anything for. Since I do still have function in my left kidney, we’ll let it hemorrhage & wait until that last day to remove it. My PKD will attack the right kidney quicker & I will be needing a transplant sooner than necessary. It all just seems like a mumbo-jumbo mess!

Good News... Finally!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:23:00 +0000

April 2, 2009 - Her scan showed 3cysts on her right kidney & a complex cluster of cysts toward the bottom of her kidney. The left kidney was described as having ”other small cysts” (very informative). A year ago, she had 2 on her right & 3 on her left. One of the cysts on her right was very large and almost covering her kidney. Now it is in a cluster and her kidney has continued to outgrow the cyst. So the disease has advanced a little, but nothing major, GOOD NEWS FINALLY! They checked all of her organs & every single one looks great. The only hiccup is, once again her doctors thought that the liver & gallbladder would have the answers and it would solve the blood mystery. That isn’t the case, so now I’m not sure what they’ll think of next. I’m thinking this is ultimately it’s own blood disease & hopefully the test that should be back on Monday to give us the answers.

Update!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:21:00 +0000

March 30, 2009 - one more week until her latest blood test comes back. She goes in this Wednesday April 1 to Sunrise Hospital for liver, gallbladder ultrasounds.

Come ON!!!!!!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:20:00 +0000

March 25, 2009 - Lets guess some more! She is starting vitamin K this weekend to see if her blood is not producing potassium which helps the blood clot. She will be on it for one week & then they will draw more blood to see if the PT & PTT lowers. :o(

What a trooper!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:17:00 +0000

March 18, 2009 - Dylin had a brain scan today. PKD causes aneurysms & with this new blood “thing” going on…. she has more of a risk. The doctors wanted to put her to sleep because of her age. I did some serious yelling but convinced them that she is not a normal child, she will cooperate & lay still & go in the tunnel. Mothers know best…..she was fine, climbed right in, knew what to do. Laid there didn’t move an inch until almost the last 30 seconds I saw her little hand raise up the blanket. When the scan was done, she said, “Man I couldn’t help it, my belly itched so bad.” It still was OK, the scan worked & her test came back fine.

She is a ROCK STAR!!!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:16:00 +0000

March 16, 2009 - Saw the Hematologist today. Dylin was a trooper. 3rd blood draw & 5 viles & this time she didn’t cry!! As happy as I am that she is dealing so well with this, it’s sad when kids are used to exams, testing & knows how to climb into a CT scan. Because we have such great healthcare in NV (NOT)… Dylin’s test is being sent to a lab out of state and will take THREE WEEKS to get back. They are looking how her blood clots, seeing if she is protein deficient or has an inhibitor in her blood that causes it not to clot, or if she has entire different blood disease.March 2009 - Dylin began to have weird symptoms that were easy signs that her liver was not functioning correctly (so we thought!) Her doctor told us to take her to the ER immediately for testing. Her blood tests came back that her liver was functioning great but that they found that her blood was not clotting. For those of you that are in the med field, her PT was 15.4 and her PTT was 75. She was referred to a hematologist/oncologist & since then it has been a huge nightmare. Dylin is seeing 4 specialists, which none are on the same page. One thinks it’s related to her PKD, one thinks it’s a WHOLE NEW DISEASE, one thinks her liver is the cause, one doesn’t know. They all just seem to like ordering test after test, keep taking blood from a 4 year old & play the guessing game. It’s been a frustrating road. The troubling part of all of this, there is something wrong her blood tests get worse as the reports come in & her blood pressure has raised. Something is going on! Yet through it all, Dylin is happy, sassy & thinks living at the doctor is normal. She is a rock star! November 2008 - She’s amazing! Her heart is doing GREAT! Thank you Dr. Mayman.

Pray Pray Pray

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:15:00 +0000

September 2008 - 2 days before our 4th annual walk, Dylin started to encounter high blood pressure. Please continue to pray for her health. She has an appointment with her cardiologist next week. She is borderline starting medications to control her blood pressure, we pray that it goes down and she will not have to take any medications.

Update!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:14:00 +0000

May 2008 - Good new and not so good news…. Tyler and Jordyn’s kidney ultrasounds are clear! No signs of anything. We will continue to check every year. As for Miss. Dylin, her original cyst that was found in utero has now grown so large, it is covering most of her right kidney. We are waiting to hear the next steps in what tests we may have to do to see if it is damaging her kidney yet. This is not common. Most kidneys are covered in mass little cysts that cluster. Once again, Dylin is the odd child in PKD. Odd has been good for us thus far, as she is still one of the healthiest children, so we will continue to pray that this too will not affect her in any negative way.

Cross your fingers!

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:13:00 +0000

May 2008 - Dylin saw her nephrologist today and since her blood pressure has remained normal for quite a while, we will hold off on testing. She was due for an MRA (brain scan) and blood work, but at this time she will only have an ultrasound next week along with Tyler & Jordyn. Tyler & Jordyn have ultrasounds yearly to make sure there are no signs of PKD.

Testing today...

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:12:00 +0000

Sept 2007 - Dylin had her cardiologist tests done. Her heart looked fabulous! I must say Dr. Mayman is amazing and that was the easiest doctors visit we have EVER had. Dylin’s blood pressure was slighlty above normal, but we will continue to monitor that at home. She likes to scare us every once in a while - stinker!

Save My Kidneys

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 03:11:00 +0000

June 28, 2007 - Dylin is three!! She has done so well that even her doctors/specialists are baffled by her healthy little body. We have met a few children that are around her age that take anywhere from 10-19 medications a day!We are very blessed that Dylin is doing so well. As a baby she encountered high blood pressure. We began monitoring her BP at home while while she slept. Her nephrologist questioned whether or not to have her on medication. After spreading the word to family and friends, we had a prayer and fast for Dylin. The very next morning, we met with Dr. Aigbe and sure enough, Dylin’s blood pressure lowered over 20 points and has remained normal ever since. Dylin’s nephrologist and cardiologist see her every six months. Her creatinine (kidney function) remains normal. She has yearly ultrasounds, heart tests, and will soon have a brain scan as PKD can cause aneurisms

Kristin's Medical HIstory

noreply@blogger.com (Kristin) — Fri, 14 Jan 2011 02:47:00 +0000

I was diagnosed with Polycystic Kidney Disease on my 25^th birthday. While having a scan for a unrelated problem, the Doctors discovered the cysts on my kidneys. Doctors were actually puzzled as to whether I might have something different than PKD, since there wasn’t any known PKD history in my family. After DNA testing, it was later confirmed. After numerous tests the first year, my doctors concluded that I was stable. Even though my kidneys were functioning normal, I was advised not to have any more children or take any form of hormones which included birth control. Hormones (estrogen) can cause the cysts to spread and grow. The advice was a little too late, as I found out I was pregnant with Dylin. I thought the 9 months off from testing sounded great, but it wasn’t too long into my pregnancy that Dylin’s first cyst was discovered during an ultrasound. At that point on I lived at the OB’s office!
After Dylin was born, I had a CT Scan which showed that the specialist were correct. The disease had now spread to my pancreas and liver. My kidneys had enlarged and the scan denoted more cysts. The good news was that my kidney function had still remained normal. I had a brain scan in 2004 and it too was normal. Since we were at again another stable point, I had to start focusing on the positive. As I started to search for a cure for this disease, I discovered the PKD Foundation. http://www.pkdcure.org/