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Gia's journey with a chronic illness began in the winter of 2007 with a pain in her right elbow. We brought her to the pediatrician immediately, and were told to watch it to see what happened. A month later the pain became worse, and we went back This time she was unable to move her arm-that's when the referral process began.
We first saw an Orthopedic Surgeon who examined her elbow, took an x-ray, and concluded that there was fluid in the joint. He referred us to a Pediatric Rheumatologist. By the time we were able to get in (Feb. 2008), the pain had subsided, and there wasn't much to be done. Between then and April she would have pains in one elbow, then the other. A few weeks later it would be in her left ankle, then her right, never staying in one place very long. We were so frustrated- when we would go in to see the rheumatologist, there wasn't much for him to see- no symptoms for him to make a diagnosis.
In April 2008 she had a full blown attack- both elbows were red, hot and swollen, she couldn't walk because her ankles were too tender, she had pain in her shins, all this was accompanied with a fever. The doctor could finally see what we were seeing at home in its full severity. He wanted her admitted to run tests to rule out any other disease. The reason for this is because the medications he would use to treat JRA (Juvenile Rheumatoid Arthritis) could have been extremely harmful in the presence of another illness.
She stayed in the hospital for almost a week at that time. When her elbow was tapped by the Orthopedic Surgeon, her WBC's (White Blood Counts)were 100,000-an indicator for septic elbow. We had to wait for the culture test to show that there was nothing growing, and that it was an arthritic process. She also underwent endoscopy to take biopsies of her esophagus and her colon to rule out Crohn's Disease or ulcerative colitis. The final step was to have Hematology/Oncology come and do a bone marrow aspiration (but when the consult was done, Hem/Onc felt that it wasn't necessary- they would come into the O.R during the procedure and take some blood smears). All the tests were clear, and the rheumatologist started her treatments with a large dose of prednisone, and after which she was treated with anti-inflammatory meds.
Eventually, her disease began to peak through with the anti-inflammatory meds, so she was put on the next level of treatment-methotrexate. She was on this medication for almost seven months with no signs or symptoms of the joint pains. Gia's life was normal again, she was in dance for the year, and she would be able to do the recital, unlike the year before.
In the spring of 2009 it started again- painful swelling in her ankles, but this time she complained of pain in her neck, and her low back. These areas where not normal areas for JRA-she was treated with prednisone for a temporary fix, and was started on higher doses of methotrexate, given in a shot form. Her blood tests showed problems with her liver function, so she had to discontinue the methotrexate shots. She was unable to perform in her spring dance recital.
By the summer, 2009 she was having attacks and could have no other treatments but prednisone to help. We went to the E.R. two or three times, and because her pain was so severe she was given morphine. Each time it was said that it is due to her "JRA".
In August 2009, the rheumatologist ordered the regular blood work tests that he had always done, and this time her WBCs were abnormal. I received the call on a Sunday evening saying that "Gia's blood work showed immature white blood cells, and she needs to come in Tuesday for a bone marrow biopsy"
We went in Tuesday morning, the day before Gia's 8th birthday, to have the bone marrow aspiration. I received a call later that night, during our family party, to confirm that Gia does have leukemia. I was told to decrease the prednisone to 1/4 of the daily dose she was given-doing so will stop the prednisone from masking the disease, and they could repeat the aspiration on Friday to have a more accurate reading.
Gia was fine until Thursday night when the pain came on all at once. She said she couldn't breathe- the pain was so severe. We went to the E.R., she was put on morphine drip, and she was admitted. Her heart rate was 185, and her oxygen level was dropping. On Friday, Gia was to ride a horse for the first time on a surprise trail ride, but instead she was having her first treatment of chemotherapy. She was in bed for almost four days, unable to walk.
By day five, things started to look up, Gia worked with her physical therapist, and began to make small trips to the bathroom. It was so wonderful to see her take those first few steps, just like she did when she was a year old. We went home on day seven.
During our stay at the hospital, Gia had wonderful nurses and doctors overseeing her care, and we are very thankful for all that they did to make her stay there as comfortable as it could be.