Jan 10, 2017 Latest post:
Jul 20, 2018
Late November, Gracie was seen at Blank ER after coming home with a mild fever, headache and a stiff, painful neck. It was clear that she was being seen for possible meningitis.
After a series of exams, the doctors were able to rule out meningitis and the overall diagnosi was an infection of some sort. The resident ordered up a CBC panel and a urinalysis. Her WBC (white blood cell) count came back slightly elevated and her hemoglobin was below normal. Once her urinalysis results came back normal, it was determined she was fighting a viral infectuon. We were discharged with care instructions and an appointment to follow-up with her primary care physician in two days
We took her in for her follow up with Dr. Robus, our primary doctor, who agreed with the diagnosis and with similar care instructions (rest, fluids, ibuprofen) and reminded me that viral infections could linger beyond a parent's comfort level. We scheduled an appointment for her to have repeat labs drawn on December 27.
We took our girl home and prepared for Thanksgiving. Our weekend was without incident and Gracie was actively participating in all of our family activities.
Throughout December, I would notice that Gracie seemed more fatigued than normal and took ocassional naps throughout the day, but aside from missing only one day of school, I didn't see a true decline in her overall health. She seemed even pickier when it came to eating, but that is truly nothing new with Gracie. A pickier eater somply can't exist, I'm sure of it. A couple days before Christmas, I couldn't help but notice she seemed slightly more fatigued and less interested in participating in normal teenage social activities. At that point, I was merely counting down the days to her appointment on the 27th and filled with immense relief once we were in the office, though as soon as I saw the numbers on the scale, I knew that something other than a virus was going on. It was at that point when I knew I would chain myself to the exam table before allowing anyone to send us home with without further testings. After hearing an irregular heartbeat during her routine exam, Gracie was sent for an EKG and to the lab for another blood draw. We received her EKG results immediately - they proved to have abnormal results. A cardiologist was consulted and it was determined that she would be fitted for a cardiac halter monitor on Friday, January 6. We would have to wait for the following day for her lab results. Dr. Robus called us immediately Wednesday morning with results. Her WBC fortunately went down, but her hemoglobin remained below normal. Addition results showed that Gracie had an alarmingly high SED rate (the rate by which the red blood cells fall to the bottom of the tube in an hour). Normal SED rate for a girl Gracie's age is 0-20. Gracie's SED rate was 0-113, indicating inflammation in her body. Further labs were drawn and sent to Mayo. We were also scheduled to meet with Dr. Stephen Elliott, a pediatric diagnostic specialist at Blank Children's Hospital on Tuesday, January 6. Mayo was testing for a barrage of findings: Systemic Lupus, Crohns Disease, Rheumatoid Arthritic, Aplastic Anemia and all auto-immune diseases. Once we met with Dr. Elliott on Tuesday, the findings from Mayo were negative for everything they tested, but confirmed the high SED rate. Additional labs and a chest x-ray were ordered and we were told we'd get a call the next day with results. We weren't home for more than a half hour before Dr. Elliott's office called to let us know that her check films showed "thickening of the medialstinum" and she was scheduled for a chest CT the following morning at 8:40. By 10:00am, we learned that Gracie had massive amounts of enlarged lymphnode masses in her chest wall and a pleural effusion (fluid surrounding her heart.) She was admitted to Blank and was taken immediately to have an echocardiogram by a cardiologist.
After a lymphnode biopsy, bone marrow biopsy and PICC line placement under general anesthesia, we met with Dr. Woods, a pediatric oncologist and learned that our precious, amazing girl has Stage 4 Hodgkins Lymphoma.
And the Colemans are at war. Cancer doesn't stand a chance.