Guest post by Nichole, Mom to Jordell with Gaucher’s Disease type 3
Jordell was always a normal little boy but seemed to have a big tummy and was sick alot. All the doctors said it was normal and he would just grow into his tummy. When he went for his 18 month check up I asked the doctor once again and he felt it and knew that something wasnt right so Jordell had an ultrasound 2 days later and they found out he had a very massive spleen. They got him into Blank Childern’s Hospital in Des Moines, Iowa.
They wanted to wait a few months but when I got on the computer and looked why someone would have an enlarged spleen everything pointed to leukemia. As any worried mother would do I fought my hardest to get him in as soon as possible so they got ahold of the doctor and wanted to see him the next day. So we traveled the 2 hours that night and got right in the next morning.
They did a bone marrow biopsy and the doctor told me that we wouldnt go home untill he could tell me whats wrong with him. So went had to stay in the hospital and I was very nervous all day and finally he came in and told me that Jordell had leukemia, my heart sank. Right away we started talking about Chemotherapy. Jordell had surgery on Feburary 22, 2008 to have a port placed in his chest and got a dose of interthecal chemotherapy. He was going to start Chemo that night but then the doctor came in and said they didnt think he had leukemia.
After that they ran more tests and everything came back negitive. The doctor then got ahold of another doctor in Rochester, Minnesota and thought they could find out what was wrong so we went by ambulance 3 and a half hours in the snow and ice. That was not a fun ride! When we got there, right away they started running more tests. I have never seen so many doctors in my life, I think there was every kind of doctor you could ever think of come in and out of his room. They decided to send us home since in was Friday and they couldnt really do much over the weekend but we had to come back Monday. But we were very excited to go home and sleep in our own beds for a couple nights!!
So we went back Monday and did some more tests and found out other ones came back negative. Still confused about whats going on. We went home Tuesday the 4th and had an appointment for Friday the 14th set up in Iowa City, Iowa and hopefully by then we would know what it was that was wrong.
On March 13th I got a call that said Jordell had Gaucher Disease. They werent sure what type yet but I was relived to have a diagnosis but also scared because I didnt know much about Gaucher Disease. Thankfully we went to Iowa City the next day!
Latest Comments