- Acute Lymphoblastic Leukemia (ALL)
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Learn More »It was a warm summer day when my five-year-old daughter, Julia, woke up complaining that her right arm hurt. That night, she came down with a fever and flu-like symptoms.
The next day, when she didn’t get better, I brought Julia to the pediatrician. He suspected two separate problems: a virus (explaining the fever) and nursemaid's elbow (explaining the arm pain). The doctor tried to adjust her elbow, but she yelped when he tried to manipulate the joint. He sent us home with instructions to visit the ER if the pain persisted.
That’s how we found ourselves at the hospital getting an arm x-ray later that day. The results were inconclusive. There wasn't any sign of injury except fluid and swelling in the elbow. Therefore, despite definitive proof, Julia was treated for a hairline fracture. She was sent home in a splint with a follow-up appointment at Children's Hospital to have her arm casted.
A week after the cast was placed, Julia woke up limping. When I examined her ankle I could see it had swollen up like a balloon. It was hot to the touch and bright red. I called the doctor. He told us to take her to Children's Hospital right away. After a full day in the ER and a battery of tests, we were visited by a Rheumatologist. She explained that Julia had what was known as "reactive arthritis," a temporary condition where the body responds to a virus with joint pain, fever, and rash (the latter which Julia also developed).
Julia's ankle pain never got better. A few days after our trip to the ER, her other ankle began to hurt. Still, the doctor's assured us this was a reactive arthritis and her cast was removed. They prescribed steroids to help control the inflammation. After a few weeks, we were instructed to taper her off the steroids. Unfortunately, as soon as we did, her ankle pain returned. This began a long cycle of unsuccessful attempts to control her joint pain. Eventually we were told that it looked like the original diagnosis was wrong. Julia actually had Juvenile Rheumatoid Arthritis and would need stronger medication.
For the next several months, Julia suffered through severe pain. She was frequently sick and tired. Yet, she tried so hard to attend school and remain positive.
Julia’s arthritis continued to get worse. Then one night, she woke up with a bloody nose that wouldn’t stop bleeding. We learned she was neutropenic (at the time, it was a word we didn’t even know). Again, the doctors suspected a virus of some kind or perhaps complications from a new medication she was taking. On May 29, 2010, we found out it was something much worse. Julia was diagnosed with Acute lymphoblastic leukemia (ALL).
Once we were told Julia had cancer, we learned her treatment would not be standard. The steroids and methotrexate used to treat Julia's arthritis are the same chemotherapy drugs used to treat leukemia. Since Julia had been taking these two drugs her body may have built up a resistance to them (and they also could have been masking the leukemia). Therefore, Julia would have to receive a "high-risk" treatment protocol.
Despite that upsetting news, Julia began treatment and responded beautifully. She handled everything with courage, grace, and a great sense of humor. Every day in the hospital she would get up, get dressed in something fancy, and keep busy all day long.
Her prognosis was looking great. She entered the maintenance phase of her protocol. Her hair started to grow back. And then, just a few weeks ago, we got the terrible news that her leukemia had relapsed. Julia will now undergo a bone marrow transplant. It seems her battle is beginning all over again.
But if anyone can stay strong, it’s my daughter. Her motto for fighting cancer from day one has been “fight it with sparkle.” And sparkle she does. Not just with jewelry or clothing, but a sparkle that shines from inside out. She’s the kid who, despite being sick, makes the most of every day. She is the strongest, bravest girl I know. She truly is a hero.
To read more of Julia's story please visit: www.astoryaboutfaith.com
ALSF Fundraising Page: http://www.alexslemonade.org/mypage/71640
Written by Shelley Abreu, Julia’s Mom
October 2011
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