Wednesday
Wednesday was long. Since Henry was wide awake from midnight to six mom didn't sleep too much either. He started to get hungry around 5 and started asking for daddy to come back because he wasn't allowed to eat or drink anything until after the procedures so I was being mean to him and not letting him eat. Henry had been in pain despite a couple meds he was taking and we asked what we could do about it. The doctor said that basically until he gets the chemo his body will keep trying to fight the cancer and he will keep fevering and having pain. We were set to start the chemo meds right after his procedures. We didn't have a time for those procedures until 10 and they were scheduled for 1:30pm. Most of the day he was sore and grumpy and dreaming about eating. He wanted a chicken leg like a character in How to Train you Dragon 3 has and root beer.
Jeremy teased the nurse that because she got everything ready and all her ducks in a row that the procedure time would be pushed back. He said now it was gonna be a 3 since she was so diligent. He was right. At 3 we went down with Henry. We had told him he needed tests done and they would put him to sleep. We told him about the port and how it would help him not need pokies any more. We talked to him about cancer and Leukemia. He was so afraid that they were going to hurt him during his "sleeping tests" that every time it was mentioned he would cry and tell us he didn't want to. The Childlife Specialist (very nice, laughs at Jeremy's jokes and just very personable) came down with Henry because we could only go so far with him and she could go past the parent barrier. She asked them to order something for anxiety and when they gave it to him he could care less if we were there. We met the anesthesiologist and doctor putting in the port. They talked to us a bit and we signed the consent papers. We told them mom and dad are both anesthesia light weights and Henry may not need much either. The Childlife Specialist was able to distract Henry with a game on a tablet before he had the anti anxiety med and once he got that he went with them with no complaints. His port placement went well, they did not find any cancer cells in his spinal fluid but the bone marrow biopsy had to be done on both sides of his hips because his bones were so soft from the steroid that it was causing trouble with the sample. Henry took awhile to wake up and they got him back to his room around shift change time at 7 pm. They had a long list of blood tests that needed to be done and some of them were from a study we agreed to be in. It took awhile to get the orders for that and as the night wore on Henry spiked a fever and his pain went up significantly.
Jeremy teased the nurse that because she got everything ready and all her ducks in a row that the procedure time would be pushed back. He said now it was gonna be a 3 since she was so diligent. He was right. At 3 we went down with Henry. We had told him he needed tests done and they would put him to sleep. We told him about the port and how it would help him not need pokies any more. We talked to him about cancer and Leukemia. He was so afraid that they were going to hurt him during his "sleeping tests" that every time it was mentioned he would cry and tell us he didn't want to. The Childlife Specialist (very nice, laughs at Jeremy's jokes and just very personable) came down with Henry because we could only go so far with him and she could go past the parent barrier. She asked them to order something for anxiety and when they gave it to him he could care less if we were there. We met the anesthesiologist and doctor putting in the port. They talked to us a bit and we signed the consent papers. We told them mom and dad are both anesthesia light weights and Henry may not need much either. The Childlife Specialist was able to distract Henry with a game on a tablet before he had the anti anxiety med and once he got that he went with them with no complaints. His port placement went well, they did not find any cancer cells in his spinal fluid but the bone marrow biopsy had to be done on both sides of his hips because his bones were so soft from the steroid that it was causing trouble with the sample. Henry took awhile to wake up and they got him back to his room around shift change time at 7 pm. They had a long list of blood tests that needed to be done and some of them were from a study we agreed to be in. It took awhile to get the orders for that and as the night wore on Henry spiked a fever and his pain went up significantly.
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