All through the weekend, Carter was getting more and more tired and pale, but not to the point where we thought it was urgent to take him in for a transfusion. I was planning to take him in early Monday morning, before our scheduled appointment because I was pretty sure he would need blood. Well, early Monday morning, at around 5am, he woke up and was acting weird. His daddy got up with him first and came in a little while later and asked me to go see if I thought he was ok because he was getting worried about him. When I went in there, Carter was speaking in sentences but some of the words he was saying were not real words. He was getting really frustrated that I didn't know what he was saying. He would get up and try to show me but even that didn't make sense. We started to get really worried so quickly packed him up in the car and headed for the ER. He screamed and yelled at me for the first ten minutes, demanding that I turn around and take him back home. It was heartbreaking to listen to, but I was glad he was at least making sense and using real words. I called his Oncologist to let him know we were coming so the ER was expecting us when we got there. They took us right back. While we were waiting for the results of his CBC, I was trying to see if he was speaking more clearly or not. He was being very quiet and it was hard to get him to say much to me at all. A few times he started telling me something and then just stopped mid-sentence. I asked him to tell me his whole name and he just looked at me, a little confused and finally said, "you do it." So I said his full name and asked him to repeat it. It took a full minute for him to figure out how to say his first and middle name, and it wasn't pronounced correctly. He didn't even attempt his last name. These past 8 months have been full of scary moments but this one was REALLY scary. We finally got his blood counts and his hemoglobin was extremely low at 3.6. Last week it was at 7 which is right on the border of needing a transfusion. It was now as low as it was when he was first diagnosed. I could not believe it had dropped that low so quickly. His platelets were also very low at 13,000. They had him on IV fluids and then got his platelet transfusion done before taking us upstairs to be admitted. Since his count was so low, his first red blood cell transfusion had to go in over 4 hours. Yes, I said FIRST. After that one was done, his hemoglobin was up to 4.4 - not good enough. So over the night, he got another transfusion and it came up to 6.something (I can't remember exactly). In the morning they started another transfusion and it came up to 7.7. Finally. Even after getting fluids in the ER he was acting a little better. After the first transfusion he was doing pretty good. When I got back to the hospital yesterday morning, his last transfusion had just completed and I could not believe the difference from the previous morning. He's totally back to normal. What a relief! The doctors told us the reason he was acting so loopy was because of his low red cell count. Since red blood cells carry oxygen, his brain was just not getting the oxygen it needed. Especially how his numbers dropped so quickly, it can cause the altered mental state that we saw. We'll go back in tomorrow to check counts and see if he needs more blood.
The silver lining in all this? He still got his chemo yesterday so we're still on schedule. But that's not the best part.... One that he was scheduled to get was PEG-Asparaginase (the leg shots). I was going to wait till they did the shots Monday night before leaving to go home with the two younger kids. The nurse, knowing I was waiting for that, came and told us that they were giving him that drug IV!!!!!! I almost did a back flip right there in the hospital room. No joke. He ended up getting the his medicines Tuesday after all the transfusions were done then we headed home in the afternoon. We're hopeful that this could be his last admission to the hospital. Maintenance is just two weeks away and his counts should stay pretty consistent through-out. So cross your fingers for him!
All last week, with the exception of the morning after the clinic visit when he vomited 5 times in a 2 hour period, Carter was doing great. I was so impressed since last time he was on these medicines was when he was the sickest. The Zofran (anti-nausea) really helps him a lot. He refused to take it last time and since it wasn't a medically necessary medicine, I didn't force the issue. This time though, with his now-mastered-skill of swallowing pills, he takes it 3 times a day no problem. He's been full of energy and wanting to be in the pool all day everyday. I knew his counts would be dropping because of all the chemo but I didn't that they had reached their low point yet since he seemed to be doing so well. Well, Monday, the CBC revealed that they are, in fact, quite low. White blood cell count 400, ANC 0, hemoglobin 7 (on the verge of needed another transfusion), and platelets 137,000. He was not feeling well all day long. He had a sedation at 2:00 in the afternoon so he couldn't eat for the majority of the day. That doesn't help the nausea and makes it that much harder to actually get some food in his stomach after the sedation. The threw up a few times while we were there, including right after waking up. He wasn't interested in eating or drinking anything so they gave him some different nausea meds in addition to the Zofran he had already received. I can't remember what it was called but it made him so silly and loopy! It was hilarious. The whole car ride home he was saying the craziest stuff that made absolutely no sense. Once home, he couldn't walk in a straight line and kept bumping into the walls. Luckily, it just made him laugh and say, "I keep crashing!" Poor kid.
Last week and this week he's on the Cytarabine which is the one that I have to inject into his port at home for 3 days. That means he has to stay accessed (have a tube coming out of the port in his chest) from Monday to Thursday. He doesn't like it at all and walks like the Hunchback of Notre Dame. It's quite sad to see, really. But man, he is just such a trooper. He doesn't let it get him down. And you should've seen him when he got accessed yesterday! He didn't even cry a little bit! It was amazing and I continue to be so impressed with my little man.
His counts were finally high enough to start more chemo! Kinda bittersweet, but I'm glad we're finally getting it over with. White blood cell count 2.1, ANC 900, hemoglobin 10.3 and platelets 231,000. We spent the day in the clinic accompanied by our dear friend Lindsey. Carter was really happy she came to play with him and read him stories all day. Everything went really well even though he had a sedation at 4:00, which meant he couldn't eat anything the whole time we were there and could only drink water and juice for a couple hours. He was surprisingly fine with it. After he woke up from his sedation, he had already received all his medicine and he was not feeling very well. BUT, he just had to play the monkey game one more time before we left to come home. This morning he threw up about 5 times before he was finally able to keep down his anti-nausea medicine. He's doing much better now. Wish us luck!
Carter's counts were not quite high enough to do chemo AGAIN today! Bummer. I'm sick of driving to and from the hospital anyways, but when it's for nothing... sheesh. White blood cell count is 1300, ANC 600 (it needs to be 750). Hemoglobin 8.3 and platelets 143. Oh well, we'll try again next week. We spent the afternoon seeing Cars 2 instead of at the hospital so I guess it's not all bad news.
An hour after I posted the update yesterday, a nurse from the hospital called. They had just received the "chemistry" results from Carter's blood work. It measures things like protein and electrolyte levels, among other things. Everything looked really low, like half of what it should be. So either he was really sick or something had gone wrong with the tests. She asked me to come back in and let them draw more blood and run it all again. So, I loaded up the kids and back we went. Carter was so amazing and brave having his port accessed twice in one day! I was very impressed with him. The CBC only takes a few minutes and the results looked good. White blood cell count is 1700, ANC 300, hemoglobin 11.5 and platelets 287,000. The results look a lot more accurate given his current energy levels and feeling good overall. It's a bummer his ANC is so low but I was also a little relieved because he couldn't have started today even if the first test had been accurate. They sent the other blood sample down to the lab for "urgent" results which took just over an hour. While we waited, the boys played tag around the big square hallways through the clinic. We were pretty much the only ones still there so they just ran wild. The nurses kept saying, "Yeah, he's definitely not sick!" We turned on a movie in the waiting room and ate graham crackers and peanut butter for dinner. The results finally came back and everything looked totally normal. Yea!! So we headed home to start enjoying our extra week of no medicine.
We went in today for our all-day visit to start the 2nd half of Delayed Intensification. Carter was supposed to get 4 different medicines today, one of which requires him to be on IV fluids for hours before and after. His ANC has to be at least 750 and platelets 75,000 to move forward. Well, he wasn't even close, really. The doctor and I were both shocked to see his counts so low. White blood cell count is 900 with ANC of 200. Hemoglobin is 6 and platelets 138,000. His red blood cell count is just below the cut-off of needing a transfusion. Since I'd told the doctor that his energy levels have been pretty good and he's been acting totally fine for almost a week now, we decided to skip the transfusion today in hopes that his marrow will recover quickly on it's own. Carter's been fighting a cold or something for a few weeks now and the Dr. said that can sometimes cause counts to be a little lower. He assured me that this is nothing to worry about and we just set up an appointment for next week. There's a few good things from this. First, he was scheduled for a sedation at 3:30 this afternoon which meant he couldn't eat anything after 9:30 this morning. His appetite is still gigantic so I'm glad he didn't have to suffer through those long hours without food. Hopefully next week's sedation will be earlier in the morning. Also, we now have another week of him feeling good and getting better instead of going the other way. The hardest thing for me is that they tell me to bring him back in if I think he needs a transfusion after all. What am I, a doctor? It's hard to have that responsibility be on me. But we've made it this far, so I must be doing something right. Anyways, he's sound asleep on the couch now, hopefully recovering as we speak :)
I really do. This past week has been the worst as far as steroid side effects. He's gained almost 5 pounds, has been very moody, and hungry around the clock. He doesn't get mad very often, usually just sad. But when he's on steroids, he gets really mad. He stomps his feet and makes this face:
This was at our clinic visit yesterday. He went from very mad to super sad and then back to mad about 8 times during the 5 minute wait. That's not an exaggeration, either. He would start crying and want me to hold him because he was scared and the next minute he would stop crying, put on his angry face and punch me a couple times while demanding, "Take me home right now!" And then back to the crying. Luckily, the visit was just to check his counts to make sure he didn't need any transfusions so it was pretty quick. His numbers were all ok, thank goodness. White blood cell 3600 with ANC of 2800. Hemoglobin is 12.4 and platelets 238,000.
But I think the worst part about him being on steroids is that he doesn't sleep well AT ALL! And so he's always so tired. Add being constantly hungry to the mix and you've got a very tired family. Three nights ago, he ate a sandwich in the middle of the night - about 2am. The next night it was a couple bowls of cereal. And last night:
nachos.
This picture was taken at about 1 in the morning. Then he woke up again at 4am and came and told me that he was "super duper hungry" and wanted more nachos. He'd woken up at least once (it's all kind of a blur) in between and told me that he was having a hard time sleeping. Then the kicker is that he wakes up at about 5 or 5:30 for the day. Poor kid is just exhausted. And so are we.
His last dose of the steroids was yesterday morning so we're just waiting for it to clear out of his system so we can hopefully get some sleep around here!
