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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.
Apr 28, 2010 9:17am
Gia has finished "Delayed Intensification I"- this was basically the same chemo she was given in September when her treatments started. To make sure that the leukemia cells do not come back in the bone marrow, they will be repeating (with some changes) her intense chemotherapy. She was hositalized once during this round for a few days. She developed a fever (103), and when they checked her blood levels, she didn't have enough WBC to fight off an infection. She was immediately put on IV antibiiotics and was given two RBC transfusions and platelets. Her fever stopped within a few hours of the IV antibiotics, but she had to stay for 48 hours to assure the doctors that she didn't have a blood infection. They have to let the cells sit in a culture dish for 2 days to be positive. Thankfully she didn't have an infection and was released as soon as possible. While she was there, she was able to do some fun things. The zoo came for a visit, bringing a parrot and a turtle, and a few other small friends. Gia also had a visit from "Build a Bear Workshop" where she was able to pick a stuffed animal and an outfit. She chose a spring bunny with a great summer outfit. She also had a visit from a beautiful Golden Retriever who comes up to see the kids every few months (pic). So, even though she was in the hospital, they had some neat things to keep her smiling:) She has now started a new round of chemo "Delayed Intensification II". This involves weekly visits to the clinic over the next two months, along with a spinal/brain treatment once a month, and 2 rounds of aparaginase shots every other day for six shots. This round of chemo has been pretty hard on her little body. She's tired out physically and starting to feel frustrated emotionally. She hasn't been in school much, but she stays caught up on her work with her strong motivation, and with the help of her teacher, Katie Hooks, who comes to work with her at home. She was unable to ride over the past few months due to her energy level being depleted, but has gone twice in the past few weeks! :) She has met a new friend at the farm, a Welsh Pony named Rosie. Gia rode Rosie on her first trail ride last Saturday, and she loved being out in nature riding through the beautiful trails. She has always been inside for her lessons, but with the nice weather, they are going to be outside a lot more. I'm so thankful that she has this to enjoy- it's so therapeutic for her. No matter what she's feeling, being at the farm always puts a smile on her face. She's such an inspiration for everyone that comes to know her! I just pray that she gets through these next few months with no complications, and she'll be sailing through the last phase of treatment "Maintenance" which is due to start in August. This part of chemo (16 months long) is the last phase, and is very mild compared to what she's endured. Please keep her in your thoughts and prayers. One last thing, a close family member, Kathy Hanley, is going to walk in the "Make a Wish Walk for Wishes" this coming Saturday. She started a team in honor of Gia, team "Gia Oppedisano". If anyone of you can make a donation or attend the walk in Gia's honor that would be great! You can go to the website link http://maw.kintera.org/faf/home/default.asp?ievent=338391. (Sorry this website doesn't have a hotlink option) You can also email me for the link.
Thanks for your continued support.
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