by: Diane and Al Hobart
On Sunday, August 31st, 2008, 6 week old Karleigh was running a fever. We took her to Mary Greeley Hospital in Ames, IA where her fever was 102.8. The blood work showed that her platelet count was very low. Karleigh was admitted to the hospital that night and additional blood work was done as well as a spinal tap to check for meningitis. Karleigh's original platelet count was 26,000 (normal is 120,000-130,000). When her level was checked the next day, it was 29,000. On Tuesday morning, Sept 2nd, her count dropped to 17,000, so it was decided that we would be transferred to Blank Children's Hospital in Des Moines IA so that a Hematologist could take over her care. The next 9 days consisted of many tests and a whole lot of unknowns. On Sept 11, 2008, Karleigh was diagnosed with Hemophagocytic Lympho Histiocytosis (HLH) which is a blood disorder that can be genetic or triggered by a virus. None of the known genes causing this were found in Karleigh, but because of her age at the onset of symptoms, it was determined that hers was genetic. The only cure for this disease is a bone marrow transplant. On Sept 12th, Karleigh took a turn for the worse and was placed on a ventilator with chemotherapy and steroids being started in an attempt to get the disease under control. Once she was stabilized and placed back on the conventional ventilator (she had been on a high frequency ventilator), we were transferred from Blank Children's Hospital in Des Moines to The University of Iowa Children’s Hospital in Iowa City which was on Sept 22nd. Karleigh made a great recovery after 3 more weeks in the PICU and 1 week on the Hematology/Oncology floor and we were able to return home on Oct 18th, 2008. She continued her weekly chemotherapy on an outpatient basis in Iowa City.
Karleigh was sent home with a feeding tube in her nose and 13 medications given twice a day. She also had surgery to put a central line in her chest so her chemotherapy and other medications could be administered. This line required a daily saline/heparin flush and once a week dressing changes. Despite all that, and the fact that she had lost much of her muscle tone, limiting her ability to move her arms and legs much, she was a very happy baby who loved to stick her tongue out at anyone who entered the room.
We were able to find a matched, unrelated donor through bethematch.org, the National Bone Marrow Registry, and hoped to go to transplant in December. However, Karleigh was still having high liver enzymes, so transplant was delayed until January.
Karleigh received her lifesaving bone marrow transplant on January 26th, 2009, but because of a very weakened immune system, she picked up a staph infection in her cheek and required surgery to clean it out as she didn't have the white blood cells to fight the infection. This surgery happened on February 7th and she was unable to be extubated after that surgery and again ended up on the high frequency ventilator for several weeks. Because of severe fluid leakage, peritoneal dialysis was also started on her at this time. We thought we were going to lose our sweet girl then, but she fought back with all she had and ended up beating all odds. She was nicknamed MIP (Miracle In Progress) by our CarePage readers and it was a very fitting name for her.
After recovering from this, we were finally able to bring Karleigh home on March 31st, 2009. Things weren't great, but it was wonderful to have her home. On April 9th, we took her to clinic for a check- up. She was running a fever, so we were readmitted to the hospital. At first we thought she was just having some withdrawal effects due to trying to taper her off of them, but, as the days went on, she began to have breathing problems again. On April 22nd, her breathing became very labored and we were transferred back to the PICU. She was placed on CPAP for a day, but was still working too hard to breath. She was eventually intubated again and was diagnosed with a severe lung infection called pneumocystis. Again, she ended up on the high frequency ventilator, peritoneal dialysis, and was critically ill. Against all odds, she beat the pneumocystis and was able to go back on the conventional ventilator.
After many weeks of fighting and beating all odds, Karleigh just wasn't getting any better and was starting to go downhill again despite still being on the ventilator. On June 7th, 2009, we made the decision to remove life support and our sweet girl earned her angel wings. Karleigh is the strongest person I know and she fought with all her might. She is loved and missed so very much!