Welcome to Aurora's CaringBridge site. We will be using this to keep our family and friends updated in one place. We appreciate your prayers and words of hope and encouragement.
Aurora recently celebrated her 16th birthday in April and has been a Type 1 diabetic for 11 years. A short two weeks after turning 16, we went to the local clinic for what we thought would be a quick visit to address some knee pain she had been experiencing. The x-ray revealed a large tumor on her left knee, which required further follow-up. An MRI confirmed the x-rays findings and more. A bone biopsy was done the next week (April 29th), and she was diagnosed on Wednesday, May 4th, 2022 with cancer due to imaging and preliminary results of the biopsy.
On Wednesday May 11th, 2022 the full sequence results of the biopsy was made available and the results were inconclusive but hopeful. The following day the "tumor team" Including the pathologist, her oncologist and the surgeon and their teams met to discuss the results. It seems Aurora's diagnosis is a little more complex than we were thinking and not so clear cut (that's why the full biopsy results took longer to get). This type of tumor can "mimic" an angiosarcoma (very aggressive malignant cancer ). We are not looking at a bone tumor in nature but one of vascular origin presenting in her bone. That being said, it has been a very destructive tumor and her left tibia and knee area fragile like an eggshell.
The results seem to be moving in our favor with a strong indication that this tumor is an Epithelioid Hemangioma (EH). It does have a "cousin" Epitheliod hemangioendothelioma (EHE) and we are hoping to rule that out with more testing. EH and EHE are so rare that they spring up in less than 1 in one million worldwide. Meaning they don't have many to compare historically to.
As stated above, they are leaning towards the EH which they classify as a "low grade malignant potential tumor" verses its' cousin EHE (high grade malignant tumor). She needs more tests and a full body scan to see if it is showing up anywhere else to rule out EHE completely. If anything shows up on imaging or anything is left after surgical intervention ideas for chemotherapy have been tossed in as a probability.
Aurora is set to have major surgery that will include but is not limited to salvage efforts to keep the integrity of her left leg including cleaning out as much of the tumor and effected bone and soft tissue as they can and grafting a donated cadaver tibia on her leg (Please keep that family in your prayers too). We will be making many two hours trips and some over nights away from our home over the next many weeks and months. This will be a long and arduous journey for Aurora with a lot of physical therapy.
If you could lift our family in prayer, or continue to do so, our family would greatly appreciate it.