In April 2013, we switched hospitals and never looked back. KJ continued the blood transfusions after all they were working. He had more energy, growing, less sick and fewer hospital stays. However, the doctors did further testing. A TCD screening on the head, MRI of the brain, and Ultrasound of the heart. The test revealed KJ's sickle cell was much more severe then what we previously was told. MRI revealed the disease has been causing mini silent strokes in the brain. Left heart valve is enlarged and liver has slightly too much iron 'iron overload.' OMG! What?! Really?!! He's only 5- years old, what type of quality of life will he have at ages 10, 15, 20? Will he live to be our age, 40?!!
On our 6th Wedding Anniversary, we spent the day at the hospital with all the boys, including my nephew Quincy. KJ was getting his every 3-weeks blood transfusion. The twins Kalen & Karson were screaming and crying as nurses drew blood for the human leukocyte antigen, or HLA the testing for bone marrow. A few weeks later, we learned BOTH twins were a 100% bone marrow match!! We ultimately, choose Karson as the donor because the umbilical cord blood stored was from his cord. Yes, doctors are using both cord blood and bone marrow stem cells for his transplant!!
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| KJ receiving a blood transfusion and still getting used to his port |
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| Kalen & Karson horsing around waiting to have their blood drawen for HLA testing, or bone marrow match |
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| Kalen & Karson (Karson is wearing the Spiderman shirt) |
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