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Casey's updated information
I would like to thank every one who have followed our story and have contributed to our cause for the past two years.
Casey has new challenges but I will start with the good news first. It's been a few months since Casey's medications has gone from 40 meds to 9 meds per day. Her endurance and tolerance for walking is much better. Her Chronic Graft Versus Host Disease is better controlled and Finally, She’s completely off the steroids that contributed to her weight gain and most of her side effects. She has lost a tremendous amount of weight and is now struggling to keep her weight on. Everyday Casey receives blenderazied meals via a G-tube 5 to 6 times a day along with her overnight fluids to hydrate her kidneys.. She seems to be much happier and loves spending quality time with her sister Lily who is her biggest motivator.
Within the past two years Casey has been hospitalized multiple times for fevers and viruses. NY Presbyterian for removal of her cataracts in both eyes, plus a kidney biopsy which diagnosed her with 30 percent or stage 3 chronic kidney disease. She was also admitted for almost 2 months spending Christmas and New Years at Children's Specialized Hospital for rehab in New Jersey. Her Last admission was at Memorial Sloan Kettering about 2 weeks ago where she spent 11 days for a fever and abnormal blood cells. A biopsy was performed to check for cancer and any other blood disorders. The results from the biopsy showed Casey has another life threatening disease called atypical Hemolytic Uremic Syndrome (aHUS) which is a rare, life-threatening, genetic disease that can damage vital organs such as the kidneys, heart, and brain. 2 weeks ago, Casey started treatment with a very expensive medication called Soliris or Eculizumab that costs about $20k per dose. She goes to Memorial Sloan Kettering every Tuesday for IVIG infusions, blood work and her the new medication called Ecluizumab for the entire day and rehab 4 days a week. She also receives a shot to help her hemoglobin as needed and on a monthly basis a very painful penicillin shot for as long as she is on the Ecluizumab.
It is a very sad situation and I try not to think about it. Knowing Casey has another life threatening disease (aHUS), chronic kidney disease, and still battling the side effect from the transplant called Graft Versus host disease
Thank you for visiting our website to support Casey Bardowell, a 9 year old girl battling significant complications from past cancer treatments. You can read about Casey’s medical history below. Her family has recently been left homeless due to the ongoing financial and medical demands required to treat Casey’s life-threatening conditions.
Please consider making a contribution to the family by clicking the link below, note that there is a small fee to use this method (~3%). If you wish to contribute and avoid this fee, you can use your PayPal account and send funds directly to Casey’s mom by using firstname.lastname@example.org free of charge. 100% of money contributed will go towards living expenses and covering needs for Casey’s ongoing treatment.
You may also send a check payable to Tracy Glasgow to the Kabel Family who will collect them until Casey’s family secures permanent housing and we can update the address:
c/o The Kabel Family
334 93rd Street
Brooklyn, NY 11209
PLEASE NOTE – ALL CONTRIBUTIONS ARE NON TAX-DEDUCTIBLE, WE ARE NOT AN OFFICIAL CHARITABLE ORGANIZATION
See Casey and her family's story on FOXNY.
Casey Bardowell is a beautiful 9 year old girl and currently an ongoing patient at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City. Casey has been in active, continuous, and intensive treatment for nine years since her initial diagnosis in August 2007 of pre-b Acute Lymphocytic Leukemia, a rare and life-threatening form of cancer. She received a bone marrow transplant on April 10, 2008 in the hopes of definitively curing her disease. Patients who receive a bone marrow transplant undergo intense chemotherapy, blood stem cell infusion, and lengthy recovery while dealing with significant immunosuppression.
Unfortunately, Casey developed a number of life-threatening complications following her transplant which have significantly compromised her quality of life. She has required regular hospital admissions, including two extremely long lasting stays of nineteen and ten months between MSKCC and Children's Specialized Hospital in NJ.
Due to her severe, refractory, chronic Graft Versus Host Disease (GVHD), Casey has received multiple line therapies which have created their own devastating complications including multiple compression fractures of her vertebrae, vision changes due to cataracts, renal insufficiency, and respiratory airway disease among other issues. She has also had countless surgeries and continues to require ongoing physical therapy and occupational therapy services.
Due to her pulmonary compromise, she requires a pediatric CIPAP machine overnight to maintain oxygen levels in her blood. She also receives fluid overnight through a Kangaroo pump to help her kidneys. On average, Casey requires 9 medications doses per day in order to manage her numerous conditions.
Casey's skin has been particularly problematic due to recurrent rashes and breakdown that require application of different creams and ointments four times or more per day. She has to be fully covered in order to avoid severe burns when going outdoors.
Throughout Casey's entire treatment at MSKCC her mother, Tracy, has remained her primary caregiver. This includes administering all her medications and feedings on a round-the-clock schedule both orally and through a gastrostomy tube, transporting Casey to medical appointments (and unexpected urgent medical visits) and organizing Casey's Homecare nursing support.
Her mom, a single parent, has felt the effects of Casey's treatment experience in a number of ways. She had to quit her job and has not been able to work since Casey's diagnosis due to the ongoing demands of Casey’s medical care. As a result, the family lost their home to foreclosure. After residing with extended family, they are now left homeless as her aunt is relocating. Due to Casey's medical condition, Tracy and her family must remain near MSKCC and cannot relocate with them.
Financially, the family is struggling and are in need of support, any contribution is greatly appreciated and will be used towards Casey’s care.
For press, contact and other inquiries, please email Matt Kabel at email@example.com.