We just got back from another clinic visit. Carter's blood counts are looking great. In fact, the doctor came in with the print out and said, "These counts look, well, amazing. I don't know that I've ever seen such good counts at this point in treatment before." So I politely informed him that my son is amazing and he should just get used to seeing amazing things from him :) They ran another CBC just to be sure the numbers were correct and they came back even better the 2nd time! You better watch your back, cancer!! (white blood cells: 3600 ANC: 2800 Hemoglobin: 9.6 Platelets: 219,000)
Carter also got a Chemo Pal today! He was very nice and he's been a chemo pal to a few other little boys in the past. He brought all sorts of games and toys to play with. He was able to cheer Carter up after his port access (which went pretty well today) with a 3-D dinosaur puzzle. I think this will be really good for Carter. Hopefully, it will give him something else to look forward to on clinic days. A few minutes into The Very Hungry Caterpillar game, it was time to head back over to that stupid sedation room. I'm so sick of sedations! But this was the last one for at least a month. Carter did NOT want to take his sleepy medicine today. He asked me if he could just take a nap without getting the medicine. That wouldn't work very well, so they gave him the medicine and it took a little longer than usual for him to go limp in my arms. After it was over, the sedation doctor told me that she had to give him extra medicine today because he was fighting it so hard. Silly stubborn little boy. Then he was so asleep that it took a while for the nurse to wake him up. He slept the whole way home and has just been laying on the couch since we've been here. That extra medicine really wiped him out, I guess.
Carter spent the day yesterday in the hospital again. Not exactly how we envisioned our Saturday going, but it could've been A LOT worse. I mentioned in the last post that Carter was close to needing a blood transfusion at our last appointment. The nurse sent his blood to get typed and stuff (I don't know what else they do...) in case we needed to come in for a transfusion later in the week. The typing etc only lasts for 3 days, so until Fri. The nurse reminded me that Friday morning was the latest I could call in order to have the transfusion in the clinic and not have to wait that extra hour for the blood tests. The doctor made it sound like he would be fine until our next appointment. So all week Carter was totally fine, running around like crazy, not needing naps.... until Friday afternoon. Of course. It just hit him so fast. He got so tired and grumpy and looked extra pale and was very sensitive, didn't want us to touch him. He asked me to carry him to bed at 5:00. He woke up at 6:30 and then went back to bed at 7:00. He didn't sleep well, woke up every couple hours. We called the doctor Sat morning and she told us to head to the ER for a transfusion. We got all packed up and headed up there. There's a few drawbacks of being treated in the ER instead on the oncology clinic. The main one is that the nurses in the ER, although they're great, aren't used to working with cancer patients all the time so things like accessing his port can be a bit more of an ordeal. This was only his second time being accessed awake and it would've gone pretty well if the needle was placed a little better. I was sure to put the numbing cream on before we left our house and it worked a lot better this time. It was on for longer and I could tell that it made a big difference. Last time he could most definitely feel the needle going in. This time, his crying didn't get worse when she actually poked him so it seems that he couldn't really feel much more than the pressure. Anyways, once the needle was in, she couldn't draw blood from it. She kept having to move the needle around (while still inserted) and push it in further and pull it out a little bit to try and get it working. Carter was just screaming and telling her to stop. His hands were shaking and I'm pretty sure he's traumatized for life now. It was awful. She was about to have the IV specialist come in when it finally started to work. So she took some blood and started IV fluids. Blood transfusions are just all about waiting. Which leads me to another drawback of being in the ER instead of upstairs. Carter can't leave his room at all. There's so many sick people coming in and out of there all day long that it's just too risky. So from waiting for the blood tests then waiting for the blood to be ordered then the actual 3 hour transfusion, he was there for about 6 hours. That's a long time for a 3 year old boy to just sit on a hospital bed. Oh well, it's for his own good, right? And he's doing much better today. Much much better. The worst part was when I told him that they were going to give him some more blood and his response was, "So I don't die?" He's too smart for his own good.
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.
Carter was on the news last night! Here's a LINK to the story. We recorded it and showed it to Carter this morning. We watched it quite a few times and then Carter wanted to wear his bee suit again. Cutest bee I've ever seen :)
Last night was also the last day of the antibiotic that Carter has been on for two weeks. After his evening dose, I got to take his "tubey" out of his port. I was kind of nervous about it. The nurse showed me how to do it at our last clinic visit and I practiced on their chest dummy, "Chester". Carter was nervous for me to take the sticker off because he was afraid it would hurt. That was by far the worst part. Once I got the dressing off, I just had to fold up those little black flaps and pull the needle out.
We love it! This is the first time since his diagnosis that he hasn't had a tube hanging out of him! He's already taken two baths today. He used to love baths but when his port is accessed or when he had his PICC line we had to cover it up with a plastic sticker which we would have to take off after the bath. He hated that so baths were few and far between. But now, he's so excited to take a bath without any stickers on him. We have to look forward to these little victories. It's what keeps us going :)
Also, Carter's been telling us that when he's done with his little friend and tubey, it will be Jude's turn to have them. Jude is always trying to steal Carter's backpack so we gave him a little taste of Carter's life last night. We just taped the tube onto him for a few minutes. Carter thought it was great. Jude liked it at first but them just ripped it off. Silly boys.
We headed back to the clinic yesterday. Carter's numbers are going down, as expected, with all the chemo he's been getting. White blood cell count is 2000 with an ANC of 1000. Hemoglobin 8.1 and platelets 213,000. It was a relatively quick visit this time. After the blood counts, he was sedated for another lumbar puncture. The sedation nurse was really awesome this time. She was really cute with Carter and she kept telling me how cute he is. He snaked 4 bags of fruit snacks out of my bag and carried them with him over to the procedure room. All the nurses thought it was hilarious that he wanted to have them with him so he could eat them as soon as he woke up. Before they gave him the sleepy medicine, she asked him if he wanted her to put a sticker on his shirt while he slept so he would have a surprise when he woke up. He was pretty excited about that. It's a pretty quick procedure, just about 10 or 15 minutes. He does well with the sedation, thankfully. He wakes up happy and it just takes a couple minutes before he's ready to be up and moving around again. They gave him all his chemo while we waited for him to wake up so we were good to go as soon as he was awake. But he just wanted to stay and play! I had forgotten how active a 3 year-old can be! This past week or so Carter has been up playing all the time. He was finally giving Jude a run for his money! I knew it wouldn't last long so I just enjoyed watching them chase each other around and happily complied when asked to join the game. Just today, he's slowed down a lot though. He spent most of the day on the couch and even threw up once :( I was hoping to avoid that side effect all together. Poor little guy. He also has zero appetite. All he ate yesterday was fruit snacks and a pickle. THAT'S ALL! On the bright side, we'll be done with his antibiotics on Friday! That means no more "little friend". We are all very much looking forward to that. Although, he does have a pretty awesome Lightening McQueen backpack now. It even has wheels and a handle so he puts his little friend in that and pulls it around behind him. It's pretty cute. Maybe now we'll use it to take his books and things to the hospital. It's about time he starts carrying his own stuff! :)
P.S. It snowed here today! And do you like his hammer and Buzz Lightyear slippers? Yeah, he does too.
Monday was the start day for round two. "Consolidation" is what they call it. We were at the clinic all day long. 11 hours. They first did a CBC (complete blood count) and his counts are looking awesome right now. White blood cell count was 7200 with an ANC of 3400! Hemoglobin was 9.4 and platelets were 389,000. Everything looks "normal". The doctor told me that Induction (the first round) went "perfectly" and he's in remission now!!! Unfortunately, that doesn't mean the end of treatment is any closer than 3 years. If they stop treating him now, the leukemia will just come back. After the CBC, they sedated him and did another lumbar puncture with more chemo in the spinal fluid. Then he had to be on IV fluids for a couple hours since the chemo he was getting can be harsh on the kidneys and bladder. He had to be well hydrated. Then he got the chemo, then had to be in IV fluids for another 3 hours. It was a really long day!
Luckily, Chelsea's Closet was there! This foundation was formed by the mother of Chelsea, who passed away from Cancer. Once a month they bring their cart full of brand new costumes and let the kids pick one out to keep. They all get dressed up and do a parade around the in-patient unit and then do a craft and have a snack. It was so fun! The KATU news crew was there, too, so watch for us :) I don't know when it will be on. Anyways, Carter was driving this police car around so he wanted a policeman costume but they didn't have one. A bumblebee was the next best thing, I guess. Then he chose a sword to go with it. Makes sense. Everybody got a good laugh from him. My house is looking more and more like a pharmacy. This isn't even close to everything, just what I needed yesterday evening. He started oral medication as well as IV meds that I have been injecting into his port. Yikes. Since when am I qualified to administer chemotherapy to a 3 year old?! His port is "accessed" which means a needle is already in there with a tube coming out and a valve on the end. So I just have to clean it and hook up the syringe, push it in and then take it off. Not too difficult but I still get freaked out every time I do it.
I'd say he's feeling pretty good. Still has those chubby cheeks but they're slowing shrinking. He's been running around and playing with Jude. His new favorite game is "squirt chase". His daddy bought him a squirt gun and now he runs around chasing us and squirting us and everything else. He thinks it's the best thing ever. And why does he look so happy in the above picture?
Because he's chasing his little brother with his remote control car, of course. Also another favorite game. Jude is such a good sport because he can easily outrun the car or just pick it up but he plays along and does these huge dramatic falls when the car gets him. He's gonna be an actor. Or a stunt man. Maybe both.
We've been home from the hospital since Friday evening. It's so nice to be home! Carter is still on antibiotics for his infection. He's hooked up to a little machine that gives him his dose of medicine every eight hours. We change out the medicine cartridge every day. He'll have it for 2 weeks. He calls it his "little friend". He doesn't mind very much having it with him all the time. Dennison rigged it up into a backpack for him and he loves that.
Carter's hair is getting thinner and thinner. It's not falling out in large amounts yet, but it's getting long and he's been mistaken for a girl more times than we'd like to admit lately. So, it was time for "The Haircut".
Remember this beautiful hair?
There it goes....
There's a few little bald spots but it's mostly just thinner everywhere right now.
The finished product. It wasn't as thin underneath as we thought it would be, but it is still pretty thin. You can also see the front of the "little friend backpack".
Yep, we're still here. I got here this morning and they had just told Dennison that we'd be able to go home just after noon. Well, less than 1/2 hour later, the doctor came and told me that his blood culture had just grown something, which means infection. Bummer. The blood culture they took in the emergency room Tuesday night still hasn't grown anything, it was the culture they took yesterday in the hospital that has grown bacteria. Interesting. So they took more blood to do another culture and put him on a different antibiotic. As long as this culture is clean after 48 hours and he doesn't get a fever and nothing else comes up, he can go home Saturday afternoon/evening. But we're not getting our hopes up. He's doing well right now. No fever, not much pain, and he just wants to play letter games on the computer and eat Popsicles. And the beginning of his next round of chemo has been put off until Monday. So he should have the weekend to rest. That will be nice. That is, if we ever get out of this hospital!
Carter got his port put in today. This is something that we've been looking forward to and dreading at the same time. Now he won't have to have dressing changes on his arm every week. But in order to access the port, the nurse has to use a needle. I'm not sure which Carter would prefer.... but it doesn't really matter, now does it. So we had a check-in time of 8:00 this morning for the surgery. They didn't take him back to the operating room until about 10:45. I was amazed, once again, at how well he did on an empty stomach and having to wait for that long! While waiting, he played with his daddy:
We were all pretty tired....
Warning! This is the saddest picture ever! This was right after surgery. His nose is a little bloody from having a breathing tube during the procedure. He HATED all the stuff on his chest. Poor little boy, goes to "take a little nap" and wakes up with a very painful chest and a whole mess of stuff taped to it. Most of the time, there won't be anything on the outside of the skin like this. Shortly after he woke up, they came and took a chest x-ray to make sure it was in the right place and then they took the PICC line out of his arm. Yea, it's gone! Carter was happy about that. I think. It could've just been the morphine. Before he went to bed tonight. He was not a happy camper. His chest hurt and he was exhausted. He asked to go to bed at about 6:30. Unfortunately, he woke up a few hours later with a fever. He and Dennison are at the emergency room right now. It's looking like they'll probably have to spend at least tonight in the hospital. They will be doing a blood culture to check for infection and will have him on antibiotics in the meantime. It's killing me to not be there with him right now. Both of our other kids were already asleep for the night and since the baby needs to be wherever I am, it's just so much easier for Dennison to just take him alone. So, since I can't sleep now, I blog.
Tune in next time to see how the emergency room visit goes.... Sorry to leave you hanging.
We just got back from another clinic visit. Carter's blood counts are looking great. In fact, the doctor came in with the print out and said, "These counts look, well, amazing. I don't know that I've ever seen such good counts at this point in treatment before." So I politely informed him that my son is amazing and he should just get used to seeing amazing things from him :) They ran another CBC just to be sure the numbers were correct and they came back even better the 2nd time! You better watch your back, cancer!! (white blood cells: 3600 ANC: 2800 Hemoglobin: 9.6 Platelets: 219,000)
What a little cutie!
