After little more than a month of recurring fevers, and no unusual laboratory blood work results, we finally noticed an oddly shaped abdominal swelling over our 8-year-old daughter Kylee’s liver area. On March 6, 2015, the pediatrician’s office, knowing there was some sort of mass in there, sent us directly to the Children’s Hospital to get an ultrasound and further testing. Tests confirmed that Kylee had an over 20cm mass and a very enlarged liver.
After being admitted and waiting four long days for the oncologists to consult with surgeons about doing a biopsy first or a full surgery, it was finally decided that this mass needed to be removed immediately.
Kylee had a life threatening surgery on March 10 by an amazing surgeon. We believe we were miraculously placed in his capable hands by God himself.
Going in to surgery we were told that circumstances pretty much had to be ideal to save the undamaged part of her liver. We were told that they wouldn’t know until the operating room if there would be proper artery connection to supply life to the remaining liver. We were also told that the other main obstacle would be to remove the large mass without it rupturing. By the grace of God she made it out of the 6+ hour surgery with no complications, and they claimed that amazingly her strong little body actually handled this major surgery better than they expected. They removed the entire right lobe of her liver and her gallbladder along with the approximately five pound mass.
The biopsy results returned as malignant, but we were already told to expect this due to its size. She remained in the hospital 10 more days while her incision healed until she was cleared from the Surgeon to go home and wait for the treatment plan to be determined by the oncologist team.
Kylee was diagnosed with a very rare and aggressive cancer called Undifferentiated Embryonal Sarcoma of the Liver (UESL).
Undifferentiated embryonal sarcoma of the liver is so rare that only small series have been published regarding treatment; however, use of aggressive chemotherapy regimens seems to have improved the overall survival. Luckily Kylee’s surgeon was able to remove the entire mass with clean margins, and post-op tests showed that it was all miraculously contained to the single mass (not spread anywhere else in her body). Apparently, this was to the amazement of the medical staff given how big it was — but this basically put us in a very good scenario for our situation. Our oncology team had to connect with oncologists in other parts of the country to determine the best treatment plan because it has not been seen by them here before. It was decided that doing chemotherapy is thought to give her the best prognosis because it will kill any microscopic cancer cells that could have transferred through her body before the removal of the mass.
She just completed seven rounds (five months) of aggressive chemo in August, and is now in a six month “recovery” period. She lost all of the hair on her entire body including eyebrows, lashes and head. She went through more pain and sickness that any 8-year-old child should ever experience. She has a boomerang-shaped scar stretching from one side of her body to the other at the bottom of her rib cage. She was isolated from almost everyone during the entire six months of fighting this monster due to suppressed immune system resulting from the two types of aggressive chemotherapy medications she received through central venous catheter (Broviac) that was placed by her surgeon. She was taken out of school in the blink of an eye and put on a hospital homebound program, where she still remains, without being able to say goodbye to any of her peers. This was difficult for her.
We got through this battle thanks to everyone’s steadfast prayers and encouragement, and now pray that she never has to experience a recurrence for the remainder of her life. These next two years are vital. Kylee has been so strong, brave and amazing through this whole thing so far. Her positive attitude and confidence is such an inspiration to us and so many others. The love and support that has poured in from our family, friends and community has humbled us and given us so much joy and strength to fight this battle. We are so grateful to our “village” for loving and supporting our Kylee with us. Please keep praying for healing, health, and comfort as Ky continues on through this battle!
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!