My Story

In April of 2010, Emaleigh was diagnosed with CLOVES Syndrome. In Dec 2011, she was diagnosed with bilateral Wilms Tumor. Emmie had a greater risk of developing cancer because of her CLOVES diagnosis. After 6 months of chemo and a left kidney nephrectomy, she is now cancer free! We have to follow-up every 3-4 months. We have a page on Facebook for Emmie too. Click here


Emaleigh was born at Virginia Baptist Hospital after only 28 weeks and 1 day of pregnancy on October 10th 2009 weighing 2 lbs 11 oz. Her stay in the NICU was for 79 days. She has a twin brother that is 1 minute older with no congenital syndromes. Abnormalities were discovered with Emaleigh’s feet during the standard second trimester ultrasound, although the extent of her malformations, were not fully recognized until after birth. Unable to obtain a diagnosis, we began researching hospitals that specialized in overgrowth disorders. After traveling to Boston Children’s Hospital in April of 2010, Emaleigh was officially diagnosed with CLOVES Syndrome.

In the summer of 2010, doctors began analyzing Emaleigh’s overgrowth tissue by performing a surgery to remove a small lipoma (Non-Cancerous Soft Tissue). After the biopsy was performed, doctors were able to assess the risks for future tissue excising and decided on an “as needed” or “Medically Necessary” approach for future lipoma Excisions.

In November 2010, Emaleigh underwent her second surgery, Orthopedic in nature, lasting five hours. The primary purpose of the surgery was to help restructure Emaleigh’s feet to enable her to fit into shoes in order to help promote her ability to walk.

In January 2011 Emaleigh underwent a full body MRI screening to eliminate the possibility of potential lesions, growths, or tissue problems (primarily in her chest cavity) while also evaluating the extensive overgrowth on her right buttock and leg. With a limited number of cases worldwide (approximately 100), doctors have few treatment options at this time. Fortunately, Emaleigh’s MRI was negative, other than a large left kidney. Doctors continue to monitor her growth and Lipoma’s regularly.

November 14, 2011, Emaleigh underwent her 3rd surgery, again, orthopedic in nature. She had a transmetatarsal amputation (removal of toes and long foot bones) on her right foot and a toe amputation on left foot.

December 2011, we found that Emaleigh's lesions in her kidneys (yes both kidneys) showed early stages of Wilms tumor. Wilms tumor is a type of kidney cancer in children. She started her first round of chemo on 1/10/12 and was on an 18 week schedule with work-ups every 6 weeks to check her progress.

February 2012 - 6 week follow-up revealed that the masses in her right kidney are gone and all but 1 are responding to the chemo in her left kidney. 6 more weeks of chemo were scheduled.

April 2012 - Chemo cleared up the right kidney but the tumors in the left kidney either grew or did not respond. April 27th, we went for our left kidney nephrectomy (removal of left kidney).

June/July 2012 - We finished our last dose of Chemo and had our quarterly MRI. Her remaining kidney is clear and cancer free.

Now that Emaleigh is in remission, we have the ability to focus on her Overgrowth Issues. We started a new drug in February 2013 called Sirolimus to either maintain her current overgrowth or reduce the lipomatous tissue. We will monitor her kidney with quarterly scans, discuss our orthopedic issues every 6 months, talk to our nephrology team, and our discuss our next steps with our Overgrowth team.

4/2013, Both Emaleigh's kidney and abdomen look good but there appears to be a flat spot in the head of her femur, which turned out to be nothing but an "Emaleigh anomaly".

11/2013 - Emaleigh went through another surgery to remove some excessively large bones in her right foot.

12/2013 - Emaleigh developed a foot sore from her cast placement.



Adrienne Blankenship posted a new journal entry, "All is well - Couple of things!".

Hi Everyone!Two things I wanted to share with you - our friends, family, and amazing support system. I truly wanted to say thank you for all of your love, prayers, gifts, ... Read more

Adrienne Blankenship added a new photo.

Adrienne Blankenship posted a new journal entry, "Great Visit - All Clear".

We had a wonderful day today. We started out with Emmie's favorite Bob Evans boiled egg and sausage link breakfast, then off to the mall to get her ears pierced. The first ... Read more

Adrienne Blankenship added a new photo.

Adrienne Blankenship posted a new journal entry, "Upcoming Cincinnati Trip".

Emmie is on the backend of a cold. While I thought all of her symptoms were gone, this morning she complained of a sore throat. The last scan showed a nodule because of ... Read more

Adrienne Blankenship posted a new journal entry, "Next Cincinnati Visit and update".

We have just confirmed our August Cincinnati appointments. We'll be heading in for her routine abdominal MRI, Ultrasound to measure the growth (hopefully slow growth) ... Read more

Adrienne Blankenship posted a new journal entry, "Results of CT Scan".

We went in for a CT Scan yesterday at noon to make sure the nodules were gone and the results were: No suspicious pulmonary nodules. Woo Hoo!!!Thank you to our amazing ... Read more

Adrienne Blankenship posted a new journal entry, "Hoping it's just a minor hiccup".

Well it looks like we went in for a Chest X-Ray and needed a CT Scan. It's funny because the radiologist team said something similar while we were there since those two ... Read more

Adrienne Blankenship posted a new journal entry, "Looks like it might be an all clear".

Emaleigh had her chest X-Ray and the radiologist did not notice any nodules. So we're waiting for Dr. McCurley and/or Dr. Adams to be sent the report for the official ... Read more

Adrienne Blankenship posted a new journal entry, "Tomorrow is the big day! Chest X-Ray".

Tomorrow at 2:45 Emaleigh has her Chest X-Ray to see if that 3mm nodule is gone or has grown larger indicating something horrible.Please keep us/her in your thoughts and ... Read more

Adrienne Blankenship posted a new journal entry, "Appointment not quite what we expected".

Our MRI went on without a hitch but it was mentioned that Emmie had to be suctioned (a lot) to be sedated. Nephrology went well and we'll have to schedule an ultrasound to ... Read more

Show more recent activity