Josiah R. - Quilt Finished in 2006
Born: September 17, 2002
Illness: Langerhan Cell Histiocytosis,
Primary Billiary Cirrhosis, Diabetes Insipidus
A Thank you from Josiah's Family!
Written February 19, 2007
We just received Josia's quilt and let me tell you I had never seen such a beautiful gift like the one Josiah received today. We just felt in love with it and I wish you would of seen Josiah's face when he opened his box, he was speechless, he didn't know what to say, there was tears in his eyes then he just grab the quilt and huged it so hard that he wanted for me to take pictures with his quilt. My mom couldn't believe that every single square in the quilt was stiched. We can tell how much love and dedication was put in every single square and we would like to THANK every single person that helped with Josiah's quilt, that is something that I will always treasure in my heart. Is nice to know that there is people out there that care for our children even though they don't know them personally, but it shows how much you care for them and we can't THANK YOU enough for that. I personally want to THANK YOU ALL VERY MUCH FOR THE WONDERFUL GIFT THAT MY SON RECEIVED FROM WONDERFUL PEOPLE LIKE YOU.
Love always,
Maria, Josiah's mom
Josiah R.'s Story
written by mom Maria
When I was pregnant with Josiah I had to have an amniocentesis exam because my blood work had came back abnormal and 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 illnesses. Josiah was born on September 17th, 2002, he was a healthy baby until May 2003.
I noticed some red dots in his scalp and also noticed him being very quiet and not wanting to eat or drink. His pediatrician couldn’t tell exactly what the red dots were so he sent me to a dermatologist. The dermatologist did a biopsy of the red dots and sent them out for testing. We finally got the results and Josiah was diagnosed with self-healing Histiocytosis, so we were told to keep and eye on the dots. As time went by, the red dots spread to his body and I noticed Josiah getting weaker everyday.
In October 2003, we took him back to his pediatrician and he noticed that his white blood cells and platelets were high, too many urine and ear infections and he was sick all the time. The doctor was concerned and wanted to repeat the tests again. In November 2003, he had more tests done but the results were the same. The doctor referred Josiah to a hematologist/oncologist 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 because he had 102° fever. He was admitted to the hospital, he was very sick that even the doctors didn't think he was going to make it. The doctors didn't even know what was wrong with him. Apparently he had all the signs 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 it a year. The news were very devastating to us because Josiah was so weak and didn't have the strength to go through chemo! They were giving us 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 placed in ICU for 2 weeks, he got an infection in his blood, doctors were very concerned and didn't know how to tell us that Josiah was not going to make it. The Langerhans Cell Histiocytosis had invaded all of his liver and on March 8th, he was diagnosed with Primary Biliary Cirrhosis.
The only way that Josiah was going to live was by having a liver transplant. 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 varicose vein had burst and there were two more about to burst. 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 29th, 2004, a liver became available for Josiah! He was transported to the university hospital were doctors wanted him to be ready for his transplant. The liver was in Dallas, TX and we had to wait until the doctors made sure that the liver was good for transplant. Finally the liver was here and Josiah got his transplant on December 1st, 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 fluids out. He was finally discharged from the hospital on December 21st, 2005.
On March 22nd, 2005, Josiah had to be rushed to the hospital for fever, had another liver biopsy and showed signs of rejection. Doctors tapered his medicine and now he's doing fine. Josiah will be constantly seeing his hematologist/oncologist doctor for signs of the 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.
Written by Josiah's mom Maria in September 2005
