Clinic 2/22

He took this picture of himself :)

Yesterday was kinda rough. We headed to the clinic and I knew this would be the first time that the nurse would have to access his port while he was awake. I've been dreading this for over a month now. So when we first got there, the triage nurse put some numbing creme on his skin over his port. We then were sent back to the waiting room for 1/2 hour to wait for the creme to take effect. Once we went back, the nurse got all her stuff set up and I reminded Carter that she was going to put his tubey back in. I've told him this before, I just don't mention how they do it.

She said she was going to have to give him a little "owie". He looked at me with fear in his eyes and asked, "What's an owie?" So I told him that she had to poke him in order to put the tubey back in. He completely lost it. He was kicking and pushing me away telling me that he did not want her to poke him. I finally got him calmed down a bit and put him on my lap. The nurse (who was really fantastic) took off the creme and started cleaning the site. I told Carter that she was just cleaning it now, and it's ok. Then she got the needle, which is huge by the way, and I told Carter that it was coming and she said 1, 2, 3, go and it was done. He screamed and looked completely betrayed. But he was looking at the nurse like that, not me. That helped :) She was really quick getting the dressing put on and then I held him tight and he calmed down a little. Once she was done getting blood from him, she left the room and I started counting the checkers that Carter brought with him and he stopped crying completely. He even laughed when I accidentally tipped over the stack of checkers I was building and they went all over the floor. I was really impressed with how quickly he calmed down, although he kept reminding me that he did not want to get poked and he did NOT like that. The nurse told me later that how quickly they recover from their first access is usually a good indicator of how quickly they get used to being accessed all the time. She said Carter did really great so I hope she's right! So after that drama, we headed over to the sedation room while the nurses fought over who got to hold Vienna. Carter "took his little nap" for another lumbar puncture and while he was still asleep the nurse was able to give him the two shots in his legs and get the other 2 chemo drugs in his IV and de-access his port. I told you she was fantastic. After the shots, we have to wait one hour in the clinic to make sure he doesn't have a reaction to it. He slept almost that whole hour. Once he woke up, he had a little snack and we were on our way. All his counts are pretty low but should only get better these next two weeks. White blood cell count was 1400 with an ANC of 500. Hemoglobin was 7.6 and platelets 249,000. They were debating giving him another blood transfusion since his hemoglobin was so low. I'm really glad they didn't since it would mean another 4 or 5 hours in the clinic. The doctor asked how his activity has been (I can't keep up with him) and he didn't seem too concerned. I can bring him in this week if he starts slowing down a lot or looking extra pale. But the chemo he's on these next two weeks don't lower blood counts so it shouldn't be a problem. Hopefully.
Later that night, we were all together in the car and Carter wanted to go to the store. We were trying to explain to him why he can't go and be around all those people and germs. Ok, first I'll tell you a little background story. Carter's never been a fan of getting his teeth brushed and the only way I could get him to comply is by telling him that there were "candy bugs" on his teeth and I needed to brush them away. He's not scared of them, he actually thinks "candy bugs" are kinda funny. So, that being said, when he was in the hospital that first week, he wanted to go outside of the inpatient cancer unit and he wasn't allowed because his blood counts were so low. His daddy told him that he can't go past those doors because there's blood bugs out there. So this idea of "blood bugs" has been how we've tried to explain this situation to him. I was kind of nervous that the idea of bugs in his blood would scare him but so far it just seems to make perfect sense to him. Kinda weird, I know. Anyways, so last night we were talking about this again in an effort to explain why he can't go to the store. We were telling him that he has special blood that the blood bugs like a lot. We all have blood bug-eating monsters that keep the blood bugs from hurting us and he doesn't have quite enough of those right now so we have to be extra careful. Then I heard him say something that I never wanted to hear him say. "But if the blood bugs get all my blood...... then I will DIE!" I could hear the fear in his voice. Dennison and I looked at each other and then reassured him that we won't let that happen. That's why he has to take all this medicine and go to the hospital all the time and get special medicine there. It all helps him to grow more blood bug-eating monsters. And someday, his blood won't be special anymore, it will just be normal. It's already getting so much better. I was really impressed that he put that all together in his head. Impressed, and very sad. It was a hard conversation to have. And not 30 seconds after we stopped talking, he threw up in his lap. And then again. Could this day get worse? I didn't want to ask myself that question because the answer is always "yes". Once I got him all cleaned up, he was good as new. He ran around with his brother and dad until bedtime. Whew, I'm glad that day is over.