Fight For Ellie

$55,528 of $50,000 goal

Raised by 505 people in 18 months
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.
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After an exceedingly special trip to Disney we have been able to enjoy several days back home filled with Ellie’s downright hilarious personality. She has been active and happy and enjoying every single person that has come to visit. Wednesday night we were able to take her to Pie Five to enjoy some amazing pizza and be interviewed by Fox 25 for a story that will now air next Tuesday. However, yesterday morning Ellie began to show signs of a neurologic change. She was extremely tired, vomited and struggled with an extreme increase to her head pain. These are all signs the shunt could not be working. This could be due to another brain bleed, an increase to the size of the tumor, or several other scenarios. After spending time with her oncology team we have decided it would not be in Ellie’s best interest to bring her into the hospital to be put through any more procedures and/or pain. We spent last night and today meeting with several people from Hospice. Our main goal has always been to make sure Ellie is comfortable and out of pain. This has become even more of a challenge now and we fully recognize the situation we are in. Nothing can prepare a parent for the choice to accept hospice when it seems like you are giving up the fight. However, we view this choice as an obligation to allow Ellie the grace and comfort she deserves for whatever she may face in the coming days, weeks or months. We will always retain the choice to terminate hospice and get back under the care of our amazing oncology team but with the full time aid of hospice we feel fully supported in ensuring our girl is as comfortable as possible at all times. Ellie has been ecstatic and energetic today and while filling out some of the most heart wrenching paperwork we were lucky enough to be listening to our girl laughing and singing the entire time. Therefore our choice is easy right now. We continue to put one foot in front of the other even though we are paralyzed with pain. We continue to laugh and love with our family even though the anger may be eating us alive on the inside. We continue breathing when it feels like we are drowning in grief. We will wait patiently for moments of clarity and happiness with Ellie and we will cherish these like the unimaginable treasures they are. We thank everyone for your continued support and kind words.
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Ellie had two spinal taps to help relieve the pressure in her head to get her the time needed to schedule her surgery to place the permanent shunt. On Valentine’s Day Ellie had the shunt put in her head and we quickly saw her symptoms improve. We were able to bring Ellie home two days later. The doctors have decided to discontinue chemo therapy after scans now show increase in size to the skull base tumor, as well as increases to the size and amount of tumors throughout her body. We will now aim to care for Ellie entirely at home with treatments that will not be so aggressively harsh on her system. The new medications will hopefully prolong her time as well as improve her quality of life overall. Throughout months of continued warnings by the doctors about the inevitable outcome of this disease Ellie has continued to show her strength. Already since being home we have gotten to enjoy so much amazing time with Ellie. She is in great spirits and loving to play with her sis and all our amazing supporters that have visited. We look forward to some exciting and happy times with Ellie in the upcoming days. We have seen the absolute gruesome and cruel nature of cancer hit our girl and our family in the most excruciating ways in the past six months. While we cannot deny the pain we still feel, our focus now will be on enjoying these times with our loving, beautiful and amazingly strong princess and nothing else.
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Our sweet girl has taken another turn. After four days of lethargy, vomiting, severe head pain, a blood transfusion and three trips to the doctor she was admitted back into the hospital. She was quickly taken for a CT scan of her head which showed increased size of the tumor, a bleed inside the tumor and pressure in her brain. She will have a spinal tap in the morning to relieve the pressure and the doctors will evaluate her symptoms in the following days. The hope is that her symptoms will subside which could allow the neurosurgeons to put in a permanent shunt to drain the pressure in her brain. However the doctors have once again been extremely upfront about the risk of this surgery when her situation could be inevitable. We have spent the last three weeks making some beautiful memories with a joyous and active Ellie. Ellie and Maryk got to celebrate their fourth birthday with family and each other at home. After a holiday season that almost took Ellie we never believed we could have that again. We will use the energy and hope this has given us to once again saddle back up for the next week which will undoubtedly be emotionally draining for us and more physically draining for Ellie than we could ever imagine. This girl knows only how to fight and so we will continue to stand with her strong and hopeful.
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Here is an update from Taylor and Rory

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
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Symantha Sexton
14 months ago

Sending my love and prayers to your amazing family always. Praying God's holy spirit washes over each of you. Especially your precious Ellie

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$55,528 of $50,000 goal

Raised by 505 people in 18 months
Created November 3, 2016
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DeAnn Shadid
13 months ago

My thoughts are so often with your precious family. Much love and many hugs.

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13 months ago
Symantha Sexton
14 months ago

Sending my love and prayers to your amazing family always. Praying God's holy spirit washes over each of you. Especially your precious Ellie

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