Zane (Kansas)

Zane DOB -12/20/2004 Zane was born on a Monday evening. We were so glad to finally have him here. Zane has two older sisters, whom both love him dearly even when they’re mad at him. He was jaundiced like every newborn tends to be. At his one month check-up, he was still pretty jaundiced, but I really thought it was because we had had a very cold and cloudy January and had not gotten out of the house at all. In February, we went to our doctor for Zane’s 2 month check-up….by this time I had noticed that the whites of Zane’s eyes were yellowish and his poo looked like a lump of mashed potatoes, so those two things were on a list of questions to ask I was going to ask Dr. C about. As soon as he walked into the exam room, he wanted to know how long Zane’s color had been like that. We were so used to him looking yellow that we hadn’t noticed how profound it had become. Dr. C immediately sent us out to our hospital for a liver function panel. I knew then that something was really wrong with our son. The next day, my fears were confirmed. Dr. C called me and told me what he thought the diagnosis was but that he wanted us to go Children’s Mercy in KC to meet with a GI specialist. Biliary Atresia?? What the heck was that? We had never heard of such a disease and of course everything on the internet that we read scared the hell out of us. Why our son? was a question that we asked ourselves over and over…I had a normal pregnancy, I took my vitamins, my two other children were fine. Tuesday, February 22, 2005 we went to Zane’s appt hoping that Dr. C was wrong but by the time we left KC, we knew that he wasn’t. Friday, February 25, 2005, Zane had his Kasai procedure. 10 weeks old was later than the usual window for a successful surgery, but it was successful enough to buy Zane time to get older and stronger. In June 2005, Zane had to endure a NG tube every night from bed time to morning to help him gain weight. In August 2005, he was officially put on the transplant list. Thanksgiving weekend, 2005, my husband picked Zane up early from the sitter’s because all of the kids were puking and pooing and we didn’t want Zane to catch it. When I got home 3:30 from work, Zane seemed to be in a lot of pain, so we took him right in the Dr. knowing that the office would be closed the rest of the week. Long story short, he had a fracture in his leg. Another side effect from the biliary atresia was the lack Vitamin D –this made his bones brittle. Zane was also starting to get these bumps on his elbows, the sides of his knees, on the palms of his hands and the balls of his feet which were becoming more and more painful. These bumps were the result of his cholesterol count way too high, eventually being over 1,200. His transplant team was able to get a medical exception that allowed him to go to number 1 because of his cholesterol count. March 29, 2007, after 19 months of being listed, we received THE CALL…everything went well with the transplant. In fact things were pretty “normal” for a transplant patient until March 2010. Zane had been complaining of his stomach hurting, so we went to our Dr. and after a cat scan and our doctor here talking with our doctor in KC, they sent us to KC. Zane had to have emergency surgery for an obstruction in his bowel. This mass turned out to be a tumor which when biopsied tested positive for Post Transplant Lymphoproliferative Disorder. We always knew what EBV was and what it could cause, but never dreamed that we would have to worry about this. After 6 cycles of chemo along with 2 cycles of Rituximab, we seemed to have put this behind us as well.


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