Fight For Ellie

In June of this year, 3 year old Ellie began complaining of constant headaches, especially when she was sleeping or laying down. She was diagnosed with swimmer’s ear for several months, but as the pain began to progress to her legs and back Ellie was seen by an ENT. He saw blood behind her eardrum and put in for a CT scan almost immediately. The scan showed a large mass at the base of her skull, and she was immediately checked into OU Children’s Hospital in OKC for further tests. Over the next week, the doctors did several more scans and tests, including a PET scan of her entire body. They found more tumors in the bottom of her femurs, the top of her femurs and several in her spine, as well as several spots throughout her body that looked like early stage tumors. At this point they decided to put a port in and place a plate in the top of her right femur where one of the larger tumors was located. They thought she was extremely close to having a pathologic fracture in her hip so the plate was put in for reinforcement. They believed she had an exceedingly rare malignant vascular disease called Epithelioid Hemangioendothelioma (EHE). The doctors at Children’s had not treated EHE before so several specialists in Boston and Houston that were experienced with this disease were brought in to guide treatment. They recommended a medicine called Sirolimus that has been used to treat EHE and Bisphosphonate Infusions to strengthen her bones. Ellie is also on several other medicines for pain, to fight infection and to strengthen her immune system. Sirolimus causes her to be immuno-compromised, however, the doctors refer to it as a “smaller gun” in comparison to chemotherapy. After 2 weeks in the hospital, Ellie was finally able to go home.
After a biopsy of her leg tumor came back negative for EHE, it was decided that a biopsy of the tumor origination point was needed, which was thought to be the mass in the base of her skull. Ellie traveled to Houston for the biopsy to be done and to meet what would now be her lead doctor, Dr. Iocobas at Texas Children’s. A neurosurgeon and ENT in Houston performed the procedure. Before the biopsy, a CT scan was done and after only 13 days on Sirolimus it was estimated that the mass in her head had shrunk 10%. After review of this biopsy, the pathology appeared to be exactly the same as the leg tumors. This biopsy was sent to Dr. Rubin, the end of the road when it comes to EHE, for another round of tests to confirm EHE. Dr. Rubin is a world-renowned pathologist and a global leader in EHE research.
Currently, Ellie is being treated for EHE, although absent a full confirmation. The hope is that all the tumors are responding to the medicine since the pathology is the same. The strategy is to continue Ellie on her current treatment plan. While Dr. Iacobas is steering the treatment, an amazing group of doctors in OKC is administering and monitoring Ellie’s treatment weekly. Another round of scans will be done in December once she has been on this plan for a full 90 days. At that point she will travel back to Houston to talk about further treatment and any changes if necessary.
EHE seems to be lacking on the information side due to the rarity of the disease. However, there are a few other cases like Ellie’s in which Sirolimus seems to be working miracles. At this point there a very little knowns for Ellie. Ellie has a long road ahead of her, not only over the next year, but for the rest of her life. There is currently no cure for this disease and she will most likely have to battle with it for the rest of her life. She is a fighter, and she has the most amazing group of supporters. In the past few months, Ellie and her family has seen so many acts of kindness, not only from her friends and family, but complete strangers. Thank you to everyone for your generosity, kindness and continued support. We ask at this time that you check for updates here, as Taylor and Rory are very busy taking care of Ellie and her sister during this difficult time.