Castleman Disease Collaborative Network
Our 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.
Between August 2019 and August 2020 she spent over 9.5 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 tried various treatment plans till her doctors found the right protocol that worked for her (thanks to her doctors collaboration with the CDCN). Kaila’s initial treatment plans included high dose steroids, Eculizumab, Siltuximab, Rituximab, Sirolimus, Tocilizumab and 4 rounds of chemo (3 rounds of Etoposide, and Cyclophosphamide and one round of R-CHOP).
Thanks to the CDCN’s research she is currently taking Jakafi/Ruxolitinib as her maintenance drug and is in remission!! Before their research showed there could be a benefit to repurposing Jakafi to treat Castleman disease, Kaila had constant ups and downs and was living in the hospital. We are so thankful for the CDCN! We appreciate everything they have done for Kaila and our family. They have given our daughter her life back!!!
Please consider donating to the CDCN to further their research and help them find a cure for our warrior!
Our 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.
Between August 2019 and August 2020 she spent over 9.5 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 tried various treatment plans till her doctors found the right protocol that worked for her (thanks to her doctors collaboration with the CDCN). Kaila’s initial treatment plans included high dose steroids, Eculizumab, Siltuximab, Rituximab, Sirolimus, Tocilizumab and 4 rounds of chemo (3 rounds of Etoposide, and Cyclophosphamide and one round of R-CHOP).
Thanks to the CDCN’s research she is currently taking Jakafi/Ruxolitinib as her maintenance drug and is in remission!! Before their research showed there could be a benefit to repurposing Jakafi to treat Castleman disease, Kaila had constant ups and downs and was living in the hospital. We are so thankful for the CDCN! We appreciate everything they have done for Kaila and our family. They have given our daughter her life back!!!
Please consider donating to the CDCN to further their research and help them find a cure for our warrior!
Be the first person to donate to the cause!
Our 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.
Between August 2019 and August 2020 she spent over 9.5 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 tried various treatment plans till her doctors found the right protocol that worked for her (thanks to her doctors collaboration with the CDCN). Kaila’s initial treatment plans included high dose steroids, Eculizumab, Siltuximab, Rituximab, Sirolimus, Tocilizumab and 4 rounds of chemo (3 rounds of Etoposide, and Cyclophosphamide and one round of R-CHOP).
Thanks to the CDCN’s research she is currently taking Jakafi/Ruxolitinib as her maintenance drug and is in remission!! Before their research showed there could be a benefit to repurposing Jakafi to treat Castleman disease, Kaila had constant ups and downs and was living in the hospital. We are so thankful for the CDCN! We appreciate everything they have done for Kaila and our family. They have given our daughter her life back!!!
Please consider donating to the CDCN to further their research and help them find a cure for our warrior!
Be the first person to donate to the cause!