Friday was a long day at clinic. Dylan had his MIBG scan and CT spec done in morning and then he needed to return to the PDH to see what we were going to do with his medi-port. First they sent him to x-ray to make sure it was still in the right spot, that came back as fine so next was to try and access it. Dylan was really nervous but being his usual brave self he persevered. The swelling had gone down but it was still bruised and tender. The nurse inserted a longer than usual needle into his port, and surprisingly it sat flush to his skin, so his port must be way back now, she also mentioned it felt like it had tilted. When they drew back, lots of air, old blood and the white anesthetic medicine came through, after a while it eventually had blood draw back. They flushed it with saline and then heparin locked it, there was resistance to the push, but they did get it through. Dylan has been neutropenic since Monday, Dr Modak said it is from the Cyclophosphamide given when he had the Retuximab several weeks ago. The Cyclophosphamide (Chemo) was very low dose, in fact Dylan had no hair loss at all, but it seems neutropenia was bound to set in. Dylan has been on GCSF injections since but so far there has been no movement in his neutrophils. Friday night Dylan developed a cough and runny nose and by Saturday morning a low grade fever that came and went. We monitored the fever and by afternoon we were left with no choice but to go to Urgent care for admission. I had left his line in his port as I had that “mother instinct” that he was not far off an admission. All attempts to draw blood from his line failed and we had to pull it. The nurse attempted with a new line, but when he flushed it, Dylan screamed in pain, so the nurse decided to remove it immediately in case it too was in the wrong spot. So poor Dylan ended up with a peripheral IV line in his arm. Dylan has been started on Vancomycin, Amakacin and Aztreonam antibiotics, blood cultures taken, nose swab taken and admitted on the pediatric floor as febrile neutropenic. Dylan is well in himself, eating well and full of attitude! The doctors said they are going to leave his medi-port alone until the surgery team come to assess the situation. Alyssa was very excited to know that Dylan was on the same floor as her, and she will come visit him when she does her routine walk around the ward. Alyssa is looking fantatsic, even after 7 incisions in her body during surgery over the past 2 weeks!