Laynee Costello

Age: 4 | Diagnosis: Recurrent Rhabdomyosarcoma | Date of Diagnosis: 01/3/13

Laynee’s fight began back in December of 2012 when she started having clots appear in her diaper. Concerned her parents took her to the local emergency room that dismissed their claims and sent them home. Shortly after Laynee’s vagina began prolapsing, and she was rushed to the ED once again, but this time a pediatric ED who was able to diagnose what they believed quickly was rhabdomyosarcoma. Further testing confirmed their suspicions, and a large tumor was found in her vagina. Shortly after that, Laynee began chemotherapy post-Broviac placement. Laynee fought long and hard while her three older sisters stood by her. Her central line became her “tubey” and being bald “was beautiful.” Watching her family stand by her and shave their heads was one of the most powerful things to watch. Her spirit was never relenting. Laynee endured intense chemotherapy until November 2013 when the best line a parent could ever hear was uttered… “No evidence of disease.”

The life-threatening battle was over for now. The chemo caused extensive tooth decay and physical delays, but hey we were out of the woods. Laynee worked tirelessly with PT and OT at both St. Christopher’s and the local school district to “just be a regular kid again.” We enjoyed nearly two years of clean scans and that oh so joyous phrase “no evidence of disease,” until two weeks ago. Laynee went in for her routine scans when “no evidence of disease” was off the table. How could this happen when rhabdomyosarcoma? This was not the plan. What else could we do besides wait on the biopsy of both the original tumor site and her bladder (where the new tumor was found). After days of an agonizing wait we got the news we were hoping not to hear, both sites are positive for rhabdomyosarcoma. Laynee will not only be undergoing intense multi-drug chemotherapy but radiation as well. This Friday Laynee has her PET scan and next week bilateral bone marrow biopsies to see if her cancer has metastasized. After that, her port will be placed on Wednesday during the bone marrow aspiration, and chemotherapy will be started immediately after.

Best case scenario Laynee will have local spread, and hopefully, the chemo and radiation will be enough (we were warned that her ovaries would have to be frozen to preserve fertility and her bladder will most likely be destroyed, leading the nephrectomy tubes). This next line is the most challenging line to write; if her cancer has metastasized, there is nothing more we can do but attempt to prolong Laynee’s life since it will have become terminal.

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