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4/4/2016 Latest post:
Hello family and friends, thank you for visiting Shane's CaringBridge site, where we will update his status periodically so you can check on him right here, anytime. How did we get here? It's a pretty interesting story...On February 13, Shane and his family had a fun-filled weekend at their ranch in Floral City, FL where they celebrated 2 birthdays, an anniversary, and Valentine's Day all in one weekend. It was a blast! Shane removed an embedded tick from his leg that weekend...something that was not unusual at all. About 9 days later, Shane noticed a very painful lump in his groin and at the time thought it may have been a hernia. He went to the walk in clinic and the doctor didn't know what to do with it and left undiagnosed. A day or two later a rash appeared on the painful lymph node, which gave us good reason to believe this was all related to that tick..."it must be Lyme disease," we all thought. So we got in with an infectious disease doctor and based on all symptoms (nausea, swollen lymph nodes, fever, muscle aches and pain) he was put on Doxycycline to treat a possible Lyme infection and was sent for blood work. Over the next few days, Shane felt a little better. Then he got worse. So we went back to the ID doctor and explained his symptoms got worse (fever, severe nausea, night sweats, muscle aches and pain, insomnia, cough, dehydration). The doctor added daily intravenous antibiotic (Rocephin) and steroids for the pain/inflammation to his treatment regimen. He felt better for a day or two then continued to feel worse. We showed up for his daily IV antibiotics and explained to the nurse how terrible he was feeling and pointed out his dehydration. She recommended we go to the ER, so we did.
After spending a few hours on a bed in the hallway of the ER Shane was finally admitted. After X rays, a cat scan, ultrasounds and several blood tests and cultures, the doctor told us he was concerned about all of Shane's lymph nodes being enlarged. At this point his breathing was very labored and had a high heart rate on top of his other symptoms. We had to wait until the next day to have all results read and visits from all sorts of doctors including the oncologist. The oncologist told us he wanted to do a bone marrow biopsy and then a lymph node biopsy. He wasn't ready to stop investigating Shane's condition. Everyone was nervous of such invasive procedures when we all believed his illness was tick-borne. So Shane underwent a bone marrow biopsy (which would take a few days to get preliminary results) and was discharged after 4 days because Shane's symptoms were somewhat manageable (thanks to the steroids). We planned to see the oncologist in the next few days to discuss PET scan and lymph node biopsy, but that night Shane's fever spiked at 104° and his night sweats, cough, nausea, and dehydration returned. By 5am the next day we were back at the ER. This time, hours went by and there was no room available. Shane's ID doctor came to visit while we waited on a bed in the hallway and he asked what brought us back. When he heard of Shane's fever he said, "this is not Lyme. I'm worried about Lymphoma."
At this point, we knew he needed help immediately. We signed AMA and left the hospital in Port Charlotte and went up to Shands Cancer Hospital in Gainesville. When we got there, Shane was severely dehydrated, severely nauseous, fatigued, labored breathing, and in pain with that horrible cough. He was so dehydrated they couldn't even get an IV through his veins. Finally they got one in his arm but his blood was sludge. So it was taking too long to rehydrate him and efficiently get his meds through his vascular system. He wasn't improving so they moved him to ICU where they put a central line in him. He was in terrible shape. He developed conjunctivitis and lost his voice from all the coughing...his cough sounded like a kazoo and he was so weak. His vascular system wasn't properly absorbing fluids so he gained 50 lbs just in fluid (he had not eaten solid food for almost a week). He was hooked up to so many lines and monitors. Once stabilized they did a lymph node biopsy. The ID doctor rooted for some tick borne illness while the oncologist had enough reason to believe lymphoma would be diagnosis. Our third day at Shands, Shane was diagnosed with a rare type of non-Hodgkin's Lymphoma: Anaplastic Large Cell Lymphoma (T-cell) ALK Positive. Our fear had become a reality. Shane chose to treat his aggressive cancer with the aggressive chemo regimen: dose adjust EPOCH, 5 days of IV chemo infusion in the hospital, about every 3 weeks for 6 months. And the first treatment began that very night.
Slowly, he started to feel a little better, and look a little better, now that we were treating the right illness. Still today he has a little nausea and fatigue, but about a week before every chemo he will feel somewhat normal. It's a bumpy road ahead but he WILL get through it. Shane sends his love to all of you, your support for our family means the world and so do your prayers. We will try our best to use this site to keep you up to speed on Shane's progress.