With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses. In St. Louis, volunteers are raising funds for COTA in honor of transplant patients like local teen, Reilly Fitzmaurice.
Reilly is the daughter of Brian and Amy Fitzmaurice. Born in 2003, Reilly was diagnosed with Auto Immune Hepatitis Cirrhosis. The doctors at St. Louis Children’s Hospital in St.Louis, Missouri have recommended a life-saving liver transplant. An estimated $200,000 is being raised by St. Louis volunteers.
Volunteers are needed to help plan and implement fundraising activities. Individuals and groups who are interested in learning more about volunteer opportunities please contact COTA for Team Reilly F Community Coordinator, Kristin Orcutt 520.269.3703 korcutt5@ymail.com or another key community volunteer.
To stay up to date with #rallyforreillyfitz please see our blog updates or like the“Rally for Reilly Fitz” Facebook Page.
Reilly’s Story
Reilly Fitzmaurice is 13 years old and is in the 7th grader. Her life up to October 2016, had been a normal one, blessed with good health. She enjoyed playing recreational sports, including volleyball and soccer, and hanging out with her family and friends.
We began to notice some subtle changes in the late summer of 2016, which we related to puberty. She was sleeping more and started gaining weight around her mid section. Then in October, Reilly stayed home from school for a week due to complaints of not feeling “well” and having a low-grade fever, which at the time we thought was a bout of the flu. She rebounded by Friday and went to school and even played in her soccer game that evening! Over the weekend, she complained of trouble taking a deep breath and that is when we noticed how enlarged her mid section had become. The pediatrician was called Monday.
Thankfully, we were able to get Reilly in to see her pediatrician on Tuesday, which was the October 25th. Upon examination, the doctor was extremely concerned with her enlarged spleen and blood work was performed. He immediately suggested we take her to have an ultrasound performed on her abdomen. However, before this test was performed, his office called and told us to immediately go to the hospital because it appeared by her blood test results that she might have leukemia. When we received this news, like any parent, we were in shock and very scared and confused. But from previous experiences with our children, we learned not to jump to any conclusions until we got more information. But in the moment it seemed impossible not to have a complete breakdown from the thought that Reilly’s could have leukemia.
Once we arrived at Mercy Hospital in St. Louis we met with a leukemia doctor at the Cardinals Kids Cancer Center. He told us Reilly would quickly be admitted so they could perform extensive testing to gather more information. We also met with a patient advocate from the leukemia team and she talked to us about the potential of a leukemia diagnosis and treatment. Until this point Reilly had remained very calm and stoic until the talk about leukemia. She broke down and cried and asked us, “Will I lose my hair”? We tried to hold back our tears in support and told her “We weren’t sure yet, but no matter what you will be ok.”
Once Reilly was admitted to the hospital, they told us that her blood counts were dangerously low and would require blood transfusions. She received a total of 5 blood transfusions, as well as 2 platelet infusions that day. However, they quickly stopped these when they noticed her blood levels weren’t improving and her spleen was filling up and your abdomen was becoming visibly enlarged. At first the doctors were not giving us much information because they needed to get more information from diagnostic testing. More blood work, a CT scan and ultrasound of her mid section were ordered.
Upon the results of the testing, leukemia was ruled out, however the CT and ultrasound showed that she has significant scaring and extensive damage to her liver. The liver specialist doctor reviewed the findings with us and told us she would need to perform a liver biopsy to determine the exact extent of Reilly’s liver damage.
At the same time another doctor performed a bone marrow test to rule out the possibility of a rare bone marrow and blood condition called aplastic anemia, which fortunately came back negative. While we were very relieved to learn Reilly did not have leukemia and aplastic anemia, we still knew something was still very wrong with Reilly. Somehow we were hoping that there was a reasonable medical explanation for Reilly’s sickness.
Then came the bad news. The liver specialist doctor came to talk to us about the results of the liver biopsy. She told us Reilly’s liver was completely scarred and would not be able to heal itself and the only option was for her to get a liver transplant. The doctor had already contacted the Liver Transplant Team at St. Louis Children’s Hospital to inform them about Reilly. She told us Reilly had a condition called autoimmune hepatitis cirrhosis. She explained with autoimmune hepatitis something triggers the body’s immune system and the body attacks its own liver and destroys it. She explained to us that the enlargement in Reilly’s abdomen was from a combination of her enlarged spleen (from blood platelets collecting) and from another complication of liver cirrhosis called ascites. Ascites is fluid that builds up in her abdomen because the blood has difficulty passing through the liver, causing excessive fluid to accumulate.
While Reilly was in the hospital at Mercy, they started her on a treatment of high doses of prednisone steroids (to slow down the body’s attack) and with strong diuretics to alleviate the pressure of the fluid in her abdomen. From the diuretic treatment Reilly lost 10 lbs. of fluid in her abdomen. The doctors explained that diuretics are a necessary part of the treatment plan. But they explained they always must be used with caution because they can quickly cause damage to her kidneys.
After Reilly was released from Mercy Hospital we met with the Liver Transplant Team at St. Louis Children’s Hospital. They explained to us the intensive liver transplant evaluation process Reilly would have to go through to get listed for liver transplant. They explained that with Reilly’s condition she would need to get a full liver transplant from a deceased donor. They told us in the mean time, Reilly would be taking the standard drug treatment before transplant, which are diuretics and high doses of prednisone steroids then transitioning to an autoimmune suppression drug called Imuran-which used to be a chemotherapy drug. They told us the plan moving forward would be to monitor her blood work closely by weekly blood draws while she was taking her treatment of drugs. They told us we needed to check her weight every day to monitor fluid gain from the ascites in her abdomen. Accordingly to Reilly’s fluid gain we would adjust the diuretic medicine, but would need to closely monitor her kidney health and tolerance to the drugs. They also said she could already have developed varices in her esophagus and rectum, so she would need an endoscope procedure. Varices are enlarged blood vessels, like varicose veins, which develop from portal hypertension-which is an increase in the blood pressure within a system of veins called the portal venous system. Veins coming from the stomach, intestine, spleen, and pancreas merge into the portal vein, which then branches into smaller vessels and travels through the liver. For the potential varices, they said the main risk is they can rupture and cause life threatening bleeding, so they told us to monitor Reilly closely for vomiting or deficating blood.
To make matters much worse, during all of this we learned our current health insurance would not be adequate coverage for all of the treatment Reilly required. So we had to wait until December for our new policy to be in effect.
A week before Christmas, Reilly developed severe abdominal pain, nausea and a fever. We were always told to look for abnormal symptoms and took her to the ER at Children’s Hospital. After a paracentesis procedure (where they use a large needle to draw fluid out of the abdomen) they determined Reilly had peritonitis, which is an infection in the fluid in her abdomen, and very dangerous. She was hospitalized for 5 days and treated with IV antibiotics. While she was hospitalized, they completed the liver transplant evaluation process required for listing-which includes exhaustive testing and meeting with every specialist that will be involved with the liver transplant process-including the surgeon, all of the liver transplant heptologists (liver) doctors, infectious disease doctors, nutritionist, psychologist, anesthesiologist, nurses, social worker and child life specialist.
The head of the liver transplant team explained the typical symptoms and potential complications that can occur from autoimmune hepatitis liver cirrhosis include low blood platelets, easy bruising, risk of bleeding, enlarged spleen, fatigue, itching, lack of appetite, muscle loss, forgetfulness or confusion, ascites (fluid retention), spontaneous bacterial peritonitis (infection in the fluid), hepatic encephalopathy (from toxins in the blood stream) and liver cancer. Unfortunately Reilly had already developed most of them, except liver cancer.
Due to the condition of Reilly’s liver, the autoimmune disorder and her age, the transplant team told us she would be placed on the adult liver transplant list. They said their intent is to get a full size healthy adult liver, in order to give Reilly’s body the best chance at a successful transplant. They told us after surgery she will hopefully be in the hospital for only 1-2 weeks. She will remain in intensive care for 3-5 days then will be moved to the transplant floor for the remainder of her hospitalization. She will have a main line catheter implanted in her chest that runs close to her heart, for easy blood draws and treatment, for the first month. She will have to take around 20+ medications to help her body heal and prevent rejection of the new liver. They said overtime, Reilly will be able to decrease the amount of medication she takes, depending on her health status. But they said Reilly will need to remain on a few anti-rejection drugs for life. They told us that the anti-rejection drugs are very expensive and we would need to consider a financial plan for paying for them. They also emphasized that we needed to understand all of the other financial considerations involved with providing Reilly with the necessary medical supervision and treatment she will need for the rest of her life. It was at this time we learned about the Children’s Organ Transplant Association (COTA), the non-profit that helps transplant families raise money to assist with transplant-related expenses.
They told us that with Reilly’s autoimmune condition there would be a possibility that Reilly would need another liver transplant surgery in the future. We learned that there is a point based system for adults, called the MELD Score. The higher the number means the more severe. They told us the wait time all depends on the availability of a deceased donor with the right blood type, size and vascular considerations required. The told us if Reilly’s health declines then she would get more points and move up on the list. Either way they told us to always be ready to come to the hospital for the transplant surgery. They said it could be a few months or a year.
On January 12th, Reilly had an endoscopy and colonoscopy procedure. During the endoscope they placed a camera down her esophagus to look for varices (enlarged blood vessels). At the same time during the colonoscopy they were looking for varices into her rectum along with any signs of another autoimmune condition called inflammatory bowel disease. After the procedure, the doctors told us they found varices in both her esophagus and rectum. They said they did not complete the procedure because they found she had a fungal infection in her throat. They told us the fungus in her throat was probably caused by a combination of the immune suppression drugs and the antibiotics she was taking. They said Reilly would need to take another course of medicine to treat the fungus before the procedure could be performed.
The second endoscope is scheduled for Thursday, February 23rd at St. Louis Children’s Hospital and will be performed by the head doctor of the liver transplant team. During this, they will place rubber bands around each of the enlarged blood vessels in order to prevent rupture or bleeding, which can cause fatal consequences.
During the past few months we have had countless people that have approached us and asked us how they could help Reilly and our family with financial support. From our introduction from St. Louis Children’s Hospital and extensive research, we have decided to partner with the Children’s Organ Transplant Association (COTA) to start a fundraising campaign in honor of Reilly. COTA is a non-profit organization that helps families of transplant patients raise money to pay for transplant related medical expenses for life. All contributions made to COTA are 100% tax deductible.
Currently our main focus is keeping Reilly as healthy as possible. Due to her health, she is unable to attend school and has frequent blood work performed to monitor all of her levels, including kidney function. She is enrolled in a program through the Rockwood Special School District called Home Bound, in which she meets with a teacher one-on-one throughout the week to complete her school work. Thankfully for technology, she is able to stay connected with many of her friends and classmates, which she is not able to see very often.
Through all of this, our family prays, believes and remains hopeful that God has a plan for Reilly and her future. A plan to heal her and make her healthy and strong again. We are very grateful for all of the support we continue to receive from our family, friends and community.
Brian and Amy Fitzmaurice