Let’s Show Our Support for Kaila!
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Kaila Mabus is a beautiful, strong, spunky, kind and compassionate girl who I’ve been honored to know for the past five years. This fundraiser campaign was created to help alleviate the financial stress of ongoing medical bills and travel expenses (including meals, parking, etc) on her family, so they can continue to focus on helping Kaila get better enough to come home, and to also help pay for the treatment she will continue to need. Please consider donating to help Kaila. All raised funds will be split equally among the Mabus and Barrett families to help them pay their portions of Kaila’s ongoing medical expenses.
Kaila, 13 years old, started not feeling well 2-3 months ago. Initially thinking she had a virus, she started developing a fever and was very fatigued all the time. After a visit to the doctor and a blood test, she was told to go to the hospital for additional testing and imaging. The night ended with being admitted to Ann and Robert Lurie's Childrens Hospital in Chicago. She was admitted due to acute renal failure, and a very low hemoglobin and platelet blood counts. Over the next few weeks, Kaila had a number of X-rays, CT scans, ultrasounds, and biopsies of her kidneys and lymph nodes. Due to the renal failure, she had a catheter placed in her neck for hemodialysis. Kaila also couldn't keep any food down, and was constantly getting sick. She developed breathing difficulties due to enlarged and inflamed lymph nodes and fluid around her lungs. She was placed on high flow oxygen and had to go to the ICU two separate times. Over the course of 4 weeks, Kaila had nearly 20 rounds of hemodialysis and nearly a dozen blood transfusions. The fluid around her lungs increased and also settled in her abdomen and around her heart. She was very fatigued, kept getting sick, and lost a lot of body mass. Despite all of this, she managed to keep positive spirits and make her visitors laugh.
She had all the doctor's (kidney, oncology, rheumatology, hematology, infectious disease, GI, etc) stumped as to what was going on. Through more testing, it was determined that she was severely deficient of B-12. This was caused by pernicious anemia which is the inability for her body to absorb the vitamin B-12. B-12 is what our bodies need to make healthy red blood cells. Fortunately, this was a relative easy fix via injections. This helped with her blood counts, but it will be a vitamin that she will have to take for the rest of her life. Her body created antibodies against the B-12 vitamin, so she will need to get extra doses to make sure her body has what it needs to make the healthy blood cells. Due to high blood pressure, Kaila was also placed on medication to keep her blood pressure normalized. It was also determined that she has acute tubular necrosis (ATN) which is a medical condition involving the death of tubular epithelial cells that form the renal tubules of the kidneys. This should heal over time.
During the 4th week, Kaila had sudden and excruciating pain on her back and side. She was taken for more imaging and testing, and the doctors determined she had a large hematoma on her kidney. This was more than likely due to the kidney biopsy, and since her blood platelet count was so low, the blood couldn't clot like it should. She was put on bed rest for over a week while the hematoma would hopefully heal itself and the body would reabsorb the blood. The bed rest was done to avoid surgery which would have more than likely resulted in the removal of her kidney.
As some of the other tests and biopsy results came back, it was determined that the tissue from the lymph node wasn't sufficient to do testing. The doctors decided to remove a lymph node in her neck for more complete and accurate testing. So again, for the 4th time in as many weeks, Kaila was put under anesthesia for the removal of the lymph node. Samples were sent to Children's Hospital of Cincinnati and John's Hopkins for more in depth testing.
Those results came back, and a diagnosis was finally made. Kaila has a very rare disorder called Idiopathic Multicentric Castleman Disease (iMCD). It is a rare systemic disease that affects the lymph nodes and related tissues. Ultimately, having an impact on other organs (kidneys for Kaila). Unfortunately, Kaila has the version of the disorder that affects all lymph nodes, so the answer isn't as simple as removing the suspect lymph node. The Oncologist started her research and reaching out to experts in the field. Since this is such a rare disorder, there are very few with the expertise to determine what the treatment plan needed to consist of. Fortunately, there is a doctor (David Fajgenbaum) that has the disease and has dedicated his career to help determine the cause and find a cure for the disease. Kaila's oncologist reached out to him and a couple other doctors to gain some insight on a treatment plan.
Kaila is now on Day 47 at Children's Hospital. She has had her second weekly infusion as part of the treatment to hopefully put her into remission. This is called Siltuximab. This initial treatment should show results after the 3rd or 4th infusion. If not, there are other treatments to try, but they are a form of chemotherapy or radiation. During all this, Kaila developed TMA (Thrombotic Microangiopathy) as a symptom of Castlemans. This requires a separate weekly infusion (Eculizumab) which is an immunosuppressant, so she also needs to be on daily low dose of antibiotic to avoid getting any infections or viruses. She receives a monthly strong antibiotic that requires her to lay flat for 2 hours. She is also on a steroid to lower the inflammation in her body. This has caused her body to block the absorption of insulin resulting in high blood sugar. She needs a daily insulin injection and as needed insulin correction injections throughout the day when the blood sugar is higher than it should be.
Most patient's with Castleman Disease will eventually go into remission, but it could also recur throughout their lives. They will need to be monitored closely as it can have a devastating impact on other organs. The doctors are hopeful that Kaila should be able to go home in the next few weeks, but her body needs to respond to treatment, kidneys need to heal more, and she needs to regain her strength.
Kaila is no longer getting sick every time she eats, her vitals and oxygen levels are stable, and she is starting to move around a lot more. She sees physical therapy and occupational therapy a few times a week. She remains on a large amount of medications, and dialysis continues on about an every other day basis. Her spirits remain good, but she is ready to go home. Her family is ready for her to be home as well. Her mom and dad have spent most nights with her in the hospital. Her step parents, grandparents and siblings have also spent a lot of time visiting her.
Kaila will likely need treatment for Castleman Disease for the rest of her life, B-12 injections or pills, and possibly dialysis unless her kidneys can fully recover which the doctors feel pretty hopeful. If the TMA persists, there will be more that she will continually have to deal with. The doctors are also hopeful that the TMA will go away once the kidney functions are back to normal or more stable.
Here are some good resources for more information on Castleman Disease. It is not a cancer, but is recognized by the cancer society because the treatment is very similar. Kaila's form of the disease was not triggered from a virus. Her acquiring the disease is still a bit of a mystery.
https://www.cancer.org/cancer/castleman-disease/about/what-is-castleman-disease.html
And the website for the disease foundation itself: https://cdcn.org/castleman-disease/overview/
Kaila's family has agreed to work with the CDCN and send blood samples and workups for further research in an effort to help find a cure.
Thank you so much for your donations and your support for the Mabus and Barrett families but most importantly for your love, prayers and continued support for Kaila in her fight with Castleman’s.
Kaila, 13 years old, started not feeling well 2-3 months ago. Initially thinking she had a virus, she started developing a fever and was very fatigued all the time. After a visit to the doctor and a blood test, she was told to go to the hospital for additional testing and imaging. The night ended with being admitted to Ann and Robert Lurie's Childrens Hospital in Chicago. She was admitted due to acute renal failure, and a very low hemoglobin and platelet blood counts. Over the next few weeks, Kaila had a number of X-rays, CT scans, ultrasounds, and biopsies of her kidneys and lymph nodes. Due to the renal failure, she had a catheter placed in her neck for hemodialysis. Kaila also couldn't keep any food down, and was constantly getting sick. She developed breathing difficulties due to enlarged and inflamed lymph nodes and fluid around her lungs. She was placed on high flow oxygen and had to go to the ICU two separate times. Over the course of 4 weeks, Kaila had nearly 20 rounds of hemodialysis and nearly a dozen blood transfusions. The fluid around her lungs increased and also settled in her abdomen and around her heart. She was very fatigued, kept getting sick, and lost a lot of body mass. Despite all of this, she managed to keep positive spirits and make her visitors laugh.
She had all the doctor's (kidney, oncology, rheumatology, hematology, infectious disease, GI, etc) stumped as to what was going on. Through more testing, it was determined that she was severely deficient of B-12. This was caused by pernicious anemia which is the inability for her body to absorb the vitamin B-12. B-12 is what our bodies need to make healthy red blood cells. Fortunately, this was a relative easy fix via injections. This helped with her blood counts, but it will be a vitamin that she will have to take for the rest of her life. Her body created antibodies against the B-12 vitamin, so she will need to get extra doses to make sure her body has what it needs to make the healthy blood cells. Due to high blood pressure, Kaila was also placed on medication to keep her blood pressure normalized. It was also determined that she has acute tubular necrosis (ATN) which is a medical condition involving the death of tubular epithelial cells that form the renal tubules of the kidneys. This should heal over time.
During the 4th week, Kaila had sudden and excruciating pain on her back and side. She was taken for more imaging and testing, and the doctors determined she had a large hematoma on her kidney. This was more than likely due to the kidney biopsy, and since her blood platelet count was so low, the blood couldn't clot like it should. She was put on bed rest for over a week while the hematoma would hopefully heal itself and the body would reabsorb the blood. The bed rest was done to avoid surgery which would have more than likely resulted in the removal of her kidney.
As some of the other tests and biopsy results came back, it was determined that the tissue from the lymph node wasn't sufficient to do testing. The doctors decided to remove a lymph node in her neck for more complete and accurate testing. So again, for the 4th time in as many weeks, Kaila was put under anesthesia for the removal of the lymph node. Samples were sent to Children's Hospital of Cincinnati and John's Hopkins for more in depth testing.
Those results came back, and a diagnosis was finally made. Kaila has a very rare disorder called Idiopathic Multicentric Castleman Disease (iMCD). It is a rare systemic disease that affects the lymph nodes and related tissues. Ultimately, having an impact on other organs (kidneys for Kaila). Unfortunately, Kaila has the version of the disorder that affects all lymph nodes, so the answer isn't as simple as removing the suspect lymph node. The Oncologist started her research and reaching out to experts in the field. Since this is such a rare disorder, there are very few with the expertise to determine what the treatment plan needed to consist of. Fortunately, there is a doctor (David Fajgenbaum) that has the disease and has dedicated his career to help determine the cause and find a cure for the disease. Kaila's oncologist reached out to him and a couple other doctors to gain some insight on a treatment plan.
Kaila is now on Day 47 at Children's Hospital. She has had her second weekly infusion as part of the treatment to hopefully put her into remission. This is called Siltuximab. This initial treatment should show results after the 3rd or 4th infusion. If not, there are other treatments to try, but they are a form of chemotherapy or radiation. During all this, Kaila developed TMA (Thrombotic Microangiopathy) as a symptom of Castlemans. This requires a separate weekly infusion (Eculizumab) which is an immunosuppressant, so she also needs to be on daily low dose of antibiotic to avoid getting any infections or viruses. She receives a monthly strong antibiotic that requires her to lay flat for 2 hours. She is also on a steroid to lower the inflammation in her body. This has caused her body to block the absorption of insulin resulting in high blood sugar. She needs a daily insulin injection and as needed insulin correction injections throughout the day when the blood sugar is higher than it should be.
Most patient's with Castleman Disease will eventually go into remission, but it could also recur throughout their lives. They will need to be monitored closely as it can have a devastating impact on other organs. The doctors are hopeful that Kaila should be able to go home in the next few weeks, but her body needs to respond to treatment, kidneys need to heal more, and she needs to regain her strength.
Kaila is no longer getting sick every time she eats, her vitals and oxygen levels are stable, and she is starting to move around a lot more. She sees physical therapy and occupational therapy a few times a week. She remains on a large amount of medications, and dialysis continues on about an every other day basis. Her spirits remain good, but she is ready to go home. Her family is ready for her to be home as well. Her mom and dad have spent most nights with her in the hospital. Her step parents, grandparents and siblings have also spent a lot of time visiting her.
Kaila will likely need treatment for Castleman Disease for the rest of her life, B-12 injections or pills, and possibly dialysis unless her kidneys can fully recover which the doctors feel pretty hopeful. If the TMA persists, there will be more that she will continually have to deal with. The doctors are also hopeful that the TMA will go away once the kidney functions are back to normal or more stable.
Here are some good resources for more information on Castleman Disease. It is not a cancer, but is recognized by the cancer society because the treatment is very similar. Kaila's form of the disease was not triggered from a virus. Her acquiring the disease is still a bit of a mystery.
https://www.cancer.org/cancer/castleman-disease/about/what-is-castleman-disease.html
And the website for the disease foundation itself: https://cdcn.org/castleman-disease/overview/
Kaila's family has agreed to work with the CDCN and send blood samples and workups for further research in an effort to help find a cure.
Thank you so much for your donations and your support for the Mabus and Barrett families but most importantly for your love, prayers and continued support for Kaila in her fight with Castleman’s.
Organizer and beneficiary
Amy Stokes
Organizer
Antioch, IL
Brian Mabus
Beneficiary
