My daughter, Kaila, began her journey with the TAFRO variant of iMCD in August 2019. A couple of months before her 14 birthday she was transferred to Lurie Children’s hospital in renal failure. She was finally given a diagnosis of iMCD 31 days later.
In the last year, she has spent over 9 months in the hospital fighting for her life. Kaila has endured more in her life than any child should. Countless scans, X-rays, procedures, infusions, blood transfusions, hemodialysis treatments, chest tubes to drain her pleural effusions, pericardial drains until they put in a pericardial window, endless labs, and multiple transfers to the PICU for respiratory failure and uncontrollable bleeding. She has tried various treatment plans and we are still working with her doctors to find the right protocol that will work for her. She has taken high dose steroids, Eculizumab, Siltuximab, Rituximab, Sirolimus, Tocilizumab, 3 rounds of Etoposide, and Cyclophosphamide and one round of R-CHOP. She is currently taking Jakafi/Ruxolitinib as her new maintenance drug. She has had constant ups and downs since being diagnosed with this disease. She is our warrior!!