Lilyan Maile King

Lilyan Maile King

Shortly before Christmas 2011, Lilyan’s right knee swelled to double its normal size so she was taken to the hospital for x-rays.  There were no signs of injury so we just applied ice, gave her ibuprofen, lots of rest and after just a couple days she was up and running.  Literally!  She was just fine until January 5th, when she began complaining that her left thigh hurt and by the next day she’d quit walking altogether.  As she laid in bed over the weekend, she developed increasing pain with movement in her left hip but otherwise felt okay.  Another trip to the doctor, the hospital netted no sign of injury, however blood tests indicated a very high sedimentation rate, indicative of internal inflammation.  She was scheduled with an orthopedist on Tuesday, January 10th.

Lilyan appeared to have improved a little and with no sign of further injury or infection she was diagnosed with transient synovitis and we were to continue the same course of treatment.  We were instructed to bring her back if her temperature reached 102.5 degrees as that may indicate a bacterial infection in the hip bone.  When she began running a mild temperature two days later, I was concerned and called the doctor back for re-evaluation. Her lab work was repeated and the sedimentation rate was even higher, at 120. On Friday, January 13th she was admitted to St. Luke’s for an MRI and further testing. Results showed lesions on her left hip, pelvis and right femur bones. For the next five days she was subjected to daily blood draws, potent cocktails of IV antibiotics, ultrasounds, an echocardiogram, bone biopsies, bone marrow aspirations and much poking and prodding by a team of doctors.  Nothing proved conclusive and they were ready to diagnose her with a rare, exclusionary diagnosis called Chronic Recurring Multifocal Osteomyelitis (CRMO). However the oncologist requested a CT scan as the final test needed to rule out any growth.  It was performed on the evening of Wednesday, January 18th.  Just before 10:00 am the next morning the panel of doctors entered the hospital room and told us that the CT scan shows a massive tumor stemming from the adrenal gland in her abdomen, that he was 99% certain it was a Neuroblastoma and that it had spread to her bones.  Stage IV Cancer.  Needless to say we were shocked, terrified; well, there are simply no words to describe the feelings we had.  Lilyan, with all the beauty and innocence of a child, asked why we were all crying.  “Because we’re sad that you’re sick,” we told her.  Her response? “I’m not sick.  I’m great!”  We were then moved to the other side of the Pediatric wing in oncology, our new home away from home.

Lilyan is a bright, articulate, charming young girl who loves books and stickers, “Go Diego Go,” and her family- especially her dogs, Fritz and Deja.  Lilyan is doing well and very much looking forward to beating the bully cancer.

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