Aug 25, 2019 Latest post:
Oct 15, 2019
Welcome to our Caring Bridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.
Paisley Marie Loomis was diagnosed with Acute Immune Hepatitis with liver and bone marrow failure . She was able to recover from the liver failure with a trial of steroids at Laurie's Children's Hospital in Chicago, but unfortunately the bone failure has to be healed by a bone marrow transplant. She has been the strongest little girl through out this process. Here is her story ! ' Late May of 2019 we noticed that Paisley was getting a cold with a cough, but was starting to turn yellow known as Jaundice . We took Paisley to the emergency room on March 2019 at Allen Hospital in Waterloo, IA. After they reviewed and evaluated Paisley they immediately transferred her to Stead Family Children's Hospital in Iowa City , IA by ambulance for near liver failure. We spent approximately 2 weeks in Iowa City trying to figure out what was causing Paisley's liver to fail. Test were all coming back negative and doctors were determined that is was rare case of Acute Immune Hepatitis. This is a condition in which her own immune system is attacking an unknown source in her liver. After Iowa City doctors diagnosed Paisley there was nothing they could do, but to transport her to Laurie's Children's Hospital in Chicago, IL for a liver transplant.
When we arrived in Chicago Paisley was rushed in for a liver biopsy for further testing to see what exactly going on inside her liver. They confirmed that her immune system was causing her liver to fail. At this point she was in liver failure and was immediately placed on the top of the liver transplant list.As we waited for a liver for Paisley, the doctors asked to start her on a trial run of steroids. This trial is fairly new and have had success with patients in liver failure. So, we agreed to the trial and after 1 full week Paisley's liver levels started to decline. This was great news and after 3 weeks she was no longer in liver failure . They then placed Paisley on the standby list for a liver transplant. We were blessed that the trial had worked. The doctors were excited as well because there are approximately 200 cases per year in the US. In Chicago, they see about 25 of these cases. Paisley was only the 10th patient that they have had success on the use of steroids. Then, on our last week at Laurie's Children's Hospital we then told some bad news. Paisley has gone into bone marrow failure.
The doctors explained to us that patients with this diagnosis usually develop bone marrow failure after liver failure. Due to the treatment that Paisley would have done, they thought it was best to send us closer to home. So, on July 4, 2019 we headed back to Stead's Family Children's Hospital in Iowa City by ambulance. The doctors between Chicago and Iowa City had been communicating on the treatment plan for Paisley. Her liver levels were still coming down, so we had to wait for those levels to near normal before we could treat her bone marrow. At the end of July Paisley took her last dose of steroids for her liver and we had to return to Chicago for a check up.
On August 6, 2019 we went back to Chicago to visit the doctors to determine how Paisley's liver was doing. After the visit the doctors told us that Paisley's liver function was doing great and Iowa City could move forward with the bone marrow transplant. But a few days later we were surprised to see Paisley's liver numbers were increasing fast. in Iowa City. After a long day waiting for a decision from the team of doctors in Chicago and Iowa city. It was determined that her Immune System was back attacking her liver again. They immediately began another round of steroids to to calm her immune system down to protect her liver.
On August 12, 2019 we were informed that they have found a match for Paisley's bone marrow. This match was a match of 12 out of 12 markers and they scheduled her to be Impatient at Iowa City Children's Hospital on September 19 to start to prepare her body for transplant and she would receive the donor stem cells on September 26. This date is considered "Day Zero". Day Zero is the day Paisley's Immune System is reborn and has to start over.
One day before Paisley was suppose to be admitted to the hospital to start treatment, Paisley developed a fever of 104. This set her transplant date back to October 3, 2019.