Nothing but THE BEST!

When I first googled "Lymphatic Malformation" I was overwhelmed at the photos and stories and results. No known cause, no definitive treatment, no reliable results. The photos are very upsetting. Most often LM are located in the neck and cause significant issues with normalcy like eating and breathing. We had, for all intents and purposes, "a good case". The actual growth is painless and Kayla was unfazed and was progressing normally.

Kayla with her Brothers Carter and Ethan 

As the LM grew it began to affect Kayla's eyesight and it became clear that difficult decision were going to need to be made sooner than later. The doctor Cassie and Sean were referred to, Dr. Patel, at Cincinnati Children's, performed the two sclerotherapy treatments. Dr. Patel is a specialist in many things pediatric, one being pediatric vascular malformation and hemangioma. These may sound similar but they are definitely not! Children's has seen LM, but does not currently have a specialist for this specific issue. After two sclerotherapy treatments with poor results Cassie was advised to begin oral sirolimus, a drug that has shown good results in LM patients. The scary down side is, the drug is fairly new, there is not extensive data on long or short term use, and if it did work, she would be on this medication for the rest of her life. There was hesisitation in removing the mass and Dr. Patel would not be the surgical doctor for any procedure like that, Cassie was given an option to follow up with a Pediatric Plastic surgeon. After that meeting, Cassie decided to get another opinion with led to the call to the international leading specialist in the treatment of Pediatric Lymphatic Malformation, Dr. Milton Waner.

Dr. Waner's name is at the very top of any google search for LM. He also seems to be attached to all of the amazing before and after photos online! He founded the Vascular Birthmark Institute (VBI) of New York and is internationally renowned in the treatment of Lymphatic and Vascular Malformations. He is also known for the difficult cases he takes on, like this crazy story of a teen from Morocco who had been give up on: http://www.wcax.com/story/30803387/ny-hospital-helps-teen-facial-transformation.

When I suggested to Cassie she go to New York for an opinion I think it seemed to her, over the top. Why travel to New York when we have such an amazing Hospital filled with well respected doctors here? Well, If you read about Dr. Waner and the work they do at the VBI you will agree this is where you go if your child needs help with LM. So last week Cassie made the call. The VBI asked for photos of Kayla, one of the attending Drs., Dr. Teresa O returned Cassies call a day later and for the first time Cassie and Sean heard the words "We can fix this". WE. CAN. FIX. THIS.

Here is Dr. Waner (left) and Dr. O (right) operating on a little boy from Britian who has not options left for him in the UK. See his before and after photo below!



Dr. O went on to explain that before sclerotherapy could be effective, the mass would need to be 'debulked'. De-Bulking is the removal of the mass via ultrasound guidance. And with a lot of good fortune perhaps removal will be the end of journey! We can only hope and pray.

Earlier this week after Kayla's last ophthalmologist appointment Cassie reported back to Dr. Patel the intention to travel to NY for the de-bulking surgery. Dr. Patel supports the decision, he is familiar with Dr. Waner and the VBI and their reputation in this field. Dr. Patel is going to be working directly with them for the follow up and post surgical treatments needed. It is quite a relief to know Kayla still has her team at Children's working on her side.

Kayla about 6 weeks old 

Dr. O's words have, for the first time, put Cassie's and Sean's mind a ease, even just a little, that Kayla will have a normal happy childhood. So now we will work to make it happen.... stay tuned!

XOXO! Aunt Connie

one more thing I have to say... I mentioned the teen from Morocco and the toddler from Britian... it has not been taken lightly or overlooked how blessed we feel to be working citizens of the United States of America where we have the fortune and means to find the best medical care in the world for Kayla.