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.
11/2014 - It's been a great year - just healing and clear scans!