Fight For Ellie
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.
We apologize for the long delay in updates these past couple weeks. We have been in a holding pattern the entire time as her scans were rescheduled for yesterday, January 16th. Ellie had a PET scan of her entire body and CT scans of both her head and chest. To start with the good news, the chest CT showed her pneumonia to be completely gone and her head CT showed major improvements to the head bleed. The neurosurgeons have decided Ellie will not need a shunt and the temporary drain was removed today. Also, her skull base tumor did not light up at all on the PET scan. This is a sign that the tumor is not metabolically active at all and is mostly likely scar tissue at this point. However, Ellie now has many more areas of worry throughout her body and the previously identified tumors are showing up more active and larger than the November PET scan. This means her skull base tumor is responding greatly to chemo. However, the cancer throughout her body is not only not responding to chemo, it is also gaining strength and size. There are also questions regarding her brain function in the area where the bleed was. We are filled with mixed emotions right now. As her complaints of head pain have almost completely ceased the past couple weeks we really did not see the scans showing anything other than progress for all of her tumors. While the news of progress to the largest tumor originally identified is outstanding news, any of the other tumors can quickly become catastrophic. After spending 53 out of the last 59 days in the hospital we may be able to go home in a couple days but only to check back in a few days later for another round of chemo that can only combat a fraction of her disease. We were told days before Christmas to be prepared to lose Ellie. We struggled to accept this news in the following days and quickly began to dismiss it completely as we saw her improve day by day. Unfortunately the very ground we stand has been rocked to the core once again. The doctors will begin to formulate another treatment plan in response to the new developments and we will continue to build hope for Ellie in a time full of emotional landmines. Thank you for all of your thoughts and support.
Taylor & Rory