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Welcome to Ella's CaringBridge website. We've created it to keep friends and family updated about Ella's journey. Get started by reading Ella's Story.
We update the journal daily, so visit often. Also, please sign Ella's Guestbook and check out her photos!
Ella has quite a long story in her 13 months of life, so I will try to fit it all in!
Just before her 2 month well baby check up, we noticed these little red dots on her that are called petechia. At the pediatrician, they ran a CBC and the results showed all of her blood counts were low! They sent us directly to the St. Jude Affiliate, who then admitted us to Huntsville Hospital. That night Ella had to get a catheter placed in her groin because no one could get a regular IV started. They gave her blood and platelets that night, and the next morning, we were being transported to St. Jude in Memphis. They thought Ella had leukemia. They did a bone marrow biopsy and ruled out leukemia. Within 3 days, we were sent home. Ella did not get any better, and her blood counts continued to drop. We were sent back to St Jude, and they started running other tests to try to find out what was going on. They never could figure out the exact cause. Ella continued to have low blood counts, and then she developed CMV. She got VERY sick and was put on a ventilator. She continued to get worse, and they decided she needed to put transferred to Le Bonheur Children’s Hospital just down the street. They thought she might have to be put on ECMO (a type of heart & lung bypass machine). Once we got there, they stabilized her and she continued to do a little better each day. She got off the ventilator in about 12 days and we were transferred back to St Jude within about 3 weeks. During all this time, the doctors were treating the CMV she had. After returning to St. Jude, she continued treatment, and after awhile, her counts started to rise and were showing signs of her bone marrow working. Soon after, they sent us back home.
We were to follow up in Birmingham, AL about her CMV at Children’s Hospital. She was doing really well at home for about 2 months, and then her counts started to drop to a scary level again. The CMV doctor in Birmingham decided to refer us to their hematologist at Children’s to see if we could figure out what was going on. They admitted Ella into the hospital for one week. Ella had a lot of blood tests run and another bone marrow biopsy done. All the test results pointed to MDS with monosomy 7, which is a type of pre leukemia. In most cases, children who have MDS with monosomy 7 go on to develop AML (a horrible type of leukemia). Her only hope was to have a bone marrow transplant ASAP. They searched the Be The Match Registry and found her a perfect match! All we know is the person is a male from Europe. The transplant was on December 9th and is providing a new chance at life!