My Story

Last updated: Wednesday, June 1, 2016

Emilia was diagnosed with Ewing's Sarcoma, a rare bone cancer, on 7/5/13 after complaining of pain in her leg after basketball practice on 6/24/13. A trip to the local urgent care that night revealed a mass in her pelvis, ten days later we got her diagnosis. Her 14 cycle chemo protocol was started at Children's Hospital of Philadelphia (CHOP) and subsequent treatment was given at Hershey.

On Oct 15, 2013 Emilia had surgery to remove the tumor from her Ischium and acetabulum and reconstruction consisting of an internal hemi-pelvectomy with saddle prosthesis was done at CHOP by Dr. John Dormans. She completed chemo March 1, 2014 had 10 days of whole lung radiation and was in remission on April 18, 2014. Emilia had 10 months of freedom from treatment where she attended sixth grade, earned distinguished honor roll and continued PT twice a week. On Feb 16, 2015 at her three month check-up, blood work revealed low platelets and a subsequent bone marrow biopsy confirmed that she had therapy related myelodysplastic syndrome or t-mds. A heartbreaking and exceedingly rare side effect of one the chemo drugs she received for Ewing's Sarcoma, this malignancy can only be cured with a bone marrow transplant. Max was tested but was only a 3/8 match so the national bone marrow donor database was searched and though a perfect match did not exist, we found and used a 9/10 match. The anonymous donor is a 22 year old female whose identity we may only learn after one year. The high dose chemo required before transplant began June 17 and transplant day was June 27. Emilia spent 37 days in the hospital and once discharged was transfusion independent. She continues to recover from the transplant but is doing exceptionally well and waiting for her immune system to be strong enough for her to return to school.

2/5/2016

Emilia developed a fever and was fighting what we thought was a bug but it turned out to be relapsed therapy related AML (Acute Myeloid Leukemia).

3/9/2016 Our bone marrow donor has had lymphocytes collected and this immune therapy will be given in escalated doses starting March 21 to get her back into remission. Only 12 years old, Emilia is fighting cancer for the third time in less than 3 years.

6/1/2016 Emilia developed grade 4 stage 4 graft versus host of the liver, gut, eyes and skin and after 76 days in the hospital, died of complications on May 19, 2016. We hope research advances treatment of pediatric cancer so no other family or child is faced with such loss and suffering.

Thank you all for your support and messages of hope and love over the past 2 years and 11 months.

Stats:

7/5/2013 Pelvic Metastatic Ewing's Sarcoma

10/15/2013 Internal Hemipelvectomy with saddle reconstruction

3/20/2015 Therapy Related Myelodysplatic Syndrome (t-MDS)

6/27/2015 Unrelated Matched Donor Stem Cell Transplant

2/5/2016 Relapsed Therapy related Acute Myeloid Leukemia (t-AML)

3/9/2016 completed 5 days of clofarabine and cytarabine

3/21/2016 DLI from MUD donor who gave marrow 6/2015

5/19/2016 Emilia died peacefully from complications of gvhd


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