First off, sorry for the delay in the update. Chase tends to get cranky and threatens to turn off my Mac if I’m on the computer longer than he likes. Since I’m also trying to get some work done while up here, that of course takes precedence. And once again, I’ve exceeded the character limit, so this will be broken down into two updates. I’ve been writing some each day or trying to, but this post will start with today and move backward.
I’m not sure what it was about last night, but Chase and I both had a horrible time getting to sleep. We didn’t go to “bed” until nearly 2 am, but even the dark didn’t stop us from conversing. I would tell him to go to sleep, and then about three minutes or so later, he’d start talking again. Unfortunately, we’ve gotten into a haywire schedule of staying up fairly late and sleeping in. Although at home, we’re the type that loves sleeping in late, so making sure I get myself up and going in the morning while I’m here is anything but pleasant or easy. But, in order to get him up and eating breakfast by high noon, I’ve got to get my own ducks in a row first, so to speak. Yes, I said breakfast. I’m not sure what it is about either of us, but even though we’re far past the traditional breakfast hours, we don’t go straight for lunch.
But I digress...back to today. The night-shift nurses generally take blood samples from him before their shift ends so the doctors will have his counts by the time they do morning rounds. Dr.Cooper warned on Sunday that he would probably need blood products within the next day or so, and today his blood platelets dropped enough for him to require an infusion. The process itself is no big deal, but since he tends to break out in a red, itchy rash on his body when he gets them, he has to be pre-medicated with benadryl before hand. I hate benadryl for him because it never fails to knock him out. Sure enough, our lack of being able to go to sleep last night and the benadryl have done a number on him.
About 2:45, I attempted to wake him up and felt his face. It was hot. He’s been bundled up in a blanket, which I thought perhaps was affecting his body temperature. However, when your white blood cell counts are in the basement, fevers and sometimes infection are inevitable. So, I took his temperature under his arm, which I knew would be a bit off and would have to be verified by the nurses, but I wanted to see if I needed to call his nurse in. 38 degree Celsius ( 100.4 Farenheit ) is a temperature we want to avoid. Having said that, when I watched the digital read out on the thermometer rapidly move up to 37.9 I cringed. Then it went up to 38...38.1...38.2. Each fraction of a degree made my stomach knot up. He topped off at 38.5 (101.3), so I went out to the nurse’s station to tell Laurie. His temporal temperature had risen from 37.2 this morning to 37.5. She re-checked his armpit temperature and it was still 38.5. Given that, she drew more labs and they ordered fluids and vancomycin, which is an antibiotic known around here as simply vanc. Chase is vanc sensitive, meaning he can break out in a rash from it, so guess what? More benadryl!!
It’s not like we haven’t been through this drill before, but I’m so terribly disappointed for him. He’s been in great spirits and getting out and about in the hospital, and definitely eating well. I especially thought his appetite was encouraging and was hoping that eating trend would continue since he’s lost 8 lbs since he was admitted on February 25th. Going on fluids tends to rob him of his appetite and with benadryl in the mix, he’ll sleep, making it doubly difficult to get any real calories in him. I hate seeing him like this. He’s absolutely wiped out and doesn’t look like he feels good whatsoever. He tried to stand up to go to the bathroom and didn’t feel he had the strength to walk in there even with my help.
I left at 7pm tonight and his fever was up to 39 (102). My mom, who is with him now, called at 9:30 and thankfully his fever is now down to 99 and he was able to get up from the bed and go to the bathroom. Hopefully the worst of his fever is behind him and he’ll soon get an energy boost from a blood transfusion.
3/8/2010
Speaking of calories and eating, he fussed at me last night for giving him fat-free yogurt. I actually brought it up here for myself, but he asked for some and was none too pleased with what he received, grumbling something to the effect off how was he supposed to gain any weight if we gave him fat-free yogurt? I made sure when I ordered room service last night to include strawberry yogurt NOT fat-free. He snatched it off the tray post haste when it arrived.
The thing about Chase is that he rarely asks for food or drink. You literally have to put it in front of him or sit next to him with a dish that smells really appealing so he’ll eat. I’ve found that watching TV with him in bed while bringing a small bag of chips with me has been a great lure among other tactics. Yesterday, I went downstairs to grab some lunch for us both. They had beef quesadillas on special, so I ordered one of those and a grilled chicken sandwich with fries with the intent on keeping the quesadilla for myself. Turns out I shouldn’t have counted my proverbial chickens because when I offered him a choice, he took the quesadilla and ate 3/4 of it....THEN he went after my fries. At least I got a few bites of what he didn’t finish though.
I’ll go ahead now and apologize in advance for getting into “potty talk”, but I think you’ll appreciate the story once it’s done. As I said earlier, we have to use tactics with Chase to get him to do the things he should be doing. Right now, one of those “things” is to have a daily drink laced with miralax for constipation (remember, I already warned you what this would be about). Constipation is one of the lovely side effects of chemotherapy. We’ve been through the miralax struggle before, but Chase claimed that he never liked to drink it because they mixed it with grape gatorade, which he never really cared for. So,we thought that mixing it with tea or fruit punch would entice him. At first it did, but after a couple of days of it, his appetite starting to pick up, which then started his digestive system working again, that ended up turning him into a bit of a gas factory. Around these parts, they don’t really sympathize with gassiness. They just want to know if you’ve pooped. Not just IF you’ve pooped, but when was the last time and what was the consistency. Gross talk I know, but we’re used to it around here. This and urine output.
Well, a couple of days ago, Chase had a nurse named Stacy. I don’t recall if we’ve had her before or not, but I really, really like her. She’s another one who will push Chase, so he’s been responding well to her. That and I think Rebecca may be coaching her a bit because she seemed to know how to handle him pretty well. Stacy was his day nurse a couple of days ago and then his night nurse last evening. When she came in to do his vitals, his “spiked” fruit punch drink was STILL on his table untouched. How do I know he never drank any? Because the little bit of paper wrapping on the end of the straw was still there. Chase wanted to avoid the gas, so he avoided miralax.
Remember those tactics though? Not thirty minutes later, Chase said he was thirsty. Knowing he had a Nestea in the fridge that my mom had bought him, I went to the family kitchen to get it, but made a detour to the nurse’s station for a packet of miralax. I told Stacy that I intended to secretly mix it into his tea, and a grin broke out on her face. Another nurse Chase has had who often jokes around with him, told me be sure to mix if for a while so it won’t be gritty. Great advice! Not only did I put miralax in that, but I put the rest in the bottle with the remaining tea.
He drank all of it and suspected nothing!
Stacy came in later and asked with a slight smirk if he had had anything to drink. I replied, yes, the entire bottle. After Chase is completely done with all of this I’ll confess, but for now I’m guilt-free!
Monday was certainly grand central station around his room. He had a team of no less than 4 dermatologists who came in to check on his little toe where they had taken the biopsy and to look at the other sores on his feet. The biopsy proved inconclusive. Lovely. It wasn’t cancer related yet once chemo started, they’re going away. Dr. Cooper said it could be that white blood cells were accumulating and causing the issue and now that they’re going down, the sores are going away. Although I’d much rather have a definitive answer, knowing and seeing that they’re going away is still a relief.
He also had Callie from Physical Therapy come by. She’s new to us and when she first attempted to get Chase out of the bed, he really resisted. I was out in the hall with Beth from psychology when lo and behold, out comes Chase with Callie!! I was so happy to see him up and moving around. He ended up walking around the nurse’s station for 15 minutes. They had a great conversation going, which was about some hikes she’s been on in exotic locations, and that kept him walking with her for 15 minutes.
Chase also had about seven others who dropped by within a 20 minute window as well. Not sure what was in the water Monday, but they all for some reason, descended at one time.
Later that afternoon, there was a little carnival of sorts downstairs. Chase took a leisurely bath and then we headed down there together. Most of the games were geared for younger kids with the exception of the Wii via LCD projector and a game of carpet hockey that Chase really got into. They had a net set up, field hockey sticks and a ball instead of a puck. Although he had to take frequent breaks because of fatigue and to catch is breath, he had a great time playing against the volunteer, me, and another patient. I even ended up playing goalie for her after Chase had to sit down.
Sunday was an excellent day around Egleston for Chase. His Scout troop made plans to visit him. We honestly expected maybe five kids, and Chase was very excited about seeing the guys no matter how many showed up. Jason came and got us in the room and we walked down to the Aflac lobby. The first thing that struck me was that he was in his full dress uniform. If she was in his Class A (hope that’s right) that meant the rest of them were, too, which I thought was pretty cool. As we turned the corner that led to the hallway toward the lobby, there were a lot more than four or five kids. There were half a dozen and quite a few of the Scout leaders. Please see the pictures that I uploaded from the visit. My favorite I think is the one of the Scout leaders taking pictures of the boys. For some reason, the sight of them just struck me as humorous.
But back to the visit, I could tell how thrilled Chase was upon seeing how many had taken time out of their Sunday afternoon to get into their uniform and come down to see him. He felt pretty tired and weak since his counts are dropping, but to look at him, he had found a bundle of energy. He was animated and very talkative. Although he had that blasted mask on, I could tell he was smiling. His eyes always give him away.
We were both just expecting a visit, but they had brought him some goodies, too, which took him by surprise. Everything was of course, Boy Scout themed from a Monopoly game, a Rubic’s cube, to flashing buttons all three of which celebrated the 100th anniversary of the Boy Scouts. He was also given a dream catcher that is now hanging over his bed. They also gave him a set of Boy Scout figurines. Chase chuckled when he showed them to me. “You see the one with the bow and arrow? You can set him up so he’s shooting the Scout Master.” One of his fellow Scouts shared that with him and I shall not divulge the boy’s name. I also won’t divulge which Scout Master Chase or I were thinking of either. Not that we uttered the name out loud mind you.
As I close this and get ready to completely crash tonight, I want to once again express my deepest gratitude to everyone for your prayers and support. I would also love to extend my heartfelt thanks to the Cub Scout troop that feeds Troop 774 for the gas cards. They’re greatly appreciated!!
God Bless!!
Caroline
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