Make A Child Smile

Josiah's Story
written by mom Maria

When I was pregnant with Josiah my doctor ordered an amniocentesis because my blood work came back abnormal. There was a possibility that my son was going to be born with Spinal Bifida or Down Syndrome, the results showed no signs of either illness. Josiah was born on September 17, 2002, he was a healthy baby until May 2003.

We noticed red dots in his scalp and he was very quiet and not wanting to eat or drink. His pediatrician couldn’t tell exactly what the red dots were so he sent him to a dermatologist. The dermatologist did a biopsy of Josiah's scalp which were sent out for testing. Josiah was diagnosed with self-healing Histiocytosis, no idea what that was, we were told to keep an eye on the red dots. As time went by, the red dots spread to his body and we noticed Josiah getting weaker everyday.

In October 2003, his pediatrician noticed that his white blood cells and platelets were high, he also had several ear and urine infections, he was sick all the time. The doctor wanted to repeat the tests again in November, the results were the same. Josiah was referred to Dr. Paul Thomas (hematologist/oncologist) at Santa Rosa Hospital, for more testing in December 2003. By that time, Josiah was very sick, his skin color and eyes were yellow, weighed only 16 lbs., didn't want to eat, play or do anything, just wanted to be left alone.

On December 26th, 2003 we had to rush him to the emergency room he had 102° fever and was admitted to the hospital. The doctors didn't have any idea of what was making Josiah so sick, apparently he had all the symptoms of Leukemia, so he was scheduled for a bone marrow biopsy which came back negative.

On January 10th, 2004, he was scheduled for a liver biopsy, the results were Langerhans Cell Histiocytosis, a rare disease that 1 out of 200,000 kids get a year. The news were devastating to us because Josiah was so weak and didn't have the strength to go through chemo! They were giving him a 50/50 chance of him making it, he was very sick and weak. On January 16th, 2004 he had his first dose of chemo and two days later was sent home. On January 20th, Josiah was rushed to the emergency room and send to ICU for 2 weeks, he had an infection in his blood, doctors were very concerned and did everything they could for him. The LCH had invaded his liver and on March 8th, he was diagnosed with Primary Biliary Cirrhosis.

Josiah needed a liver transplant in order to survive. His bile ducts were destroyed and all the toxins were going back into his body. He kept going through chemo and was being followed at a transplant clinic for the following 7 months. Josiah was placed on the waiting list for a liver transplant on November 13th, 2004. On November 27th, Josiah woke up in the middle of the night vomiting blood, I rushed him to the emergency room, a varices vein had burst and had two more He was intubated and his doctor took care of the vein temporarily. He needed a liver transplant immediately, but there was no donor available for him.

Monday, November 29, 2004 a liver was available for Josiah! He was transported to the University hospital were Dr. Neigut and Dr. Mejia wanted him ready for his transplant. The liver was in Dallas, TX and we had to wait until the doctors were sure the liver was good for transplantation. Finally the liver was here and Josiah received the gift of live a second chance in life, his transplant, on December 1, 2004! Everything went fine until his lungs were filled with fluid. He had to be intubated again and a tube was placed in his lungs to drain the fluid out. He was finally discharged from the hospital on December 21, 2004.

On March 22nd, 2005, Josiah was rushed to the hospital for fever, it has his first liver rejection. Doctors tapered his medicine and now he's doing fine. Josiah will be monitor by Dr. Neigut and Dr. Thomas for his transplant and histiocytosis, this illness can always come back and attack his liver again or any other organ. He also has to be monitored for any signs of rejection to his new liver.

It has been a few years from Josiah's transplant and having high counts of EBV, and he is still being monitored once a month at the transplant clinic. So far his counts go up and down, but nothing alarming, he doesn't have any other symptoms of the EBV. Josiah has had several MRI's, CT Scan's and in December 2006, he also went to go see Dr. Arar (Kidney) for an annual check up and also an ultrasound of his Kidney.

Josiah has been doing very well; our only concern is the EBV, but other than that, we Thank God and the doctors for our miracle child, our little hero for being so strong. He has gotten to the point where he takes his own medicine and when people see him they can't believe it, as soon as he sees me getting the medicine ready, he takes it from me and drinks it.

His Diabetes Insipidus sometimes gets out of control, there are times that he's constantly drinking and going to the restroom and times that he's ok. Dr. Lynch is monitoring him once a month also, and may have to change the dose on his DDAVP. Josiah is finally at the 50% scale in the growth and weight chart which is something we were all looking forward to. Josiah is a strong boy who loves playing with remote control cars.