Sadly Cade was readmitted only a few hours after my last post. Chris and Rylan got to the RMH and Cade perked up when he saw Ry, as I hoped he would, but it only lasted a few minutes. That’s when I knew there was no way he was going to make it unti Friday without being readmitted. He wouldn’t eat or drink anything for lunch, medications became an agonizing battle, and he just looked miserable. He was sitting on Chris’ lap at the kitchen counter and I looked at him and could just see how terrible he felt. I said to Chris- I’m going to call Suzie (Dr Knipsteins nurse), it’s time. He needs to be admitted. It’s better when it can be a controlled situation because then they have us on the schedule to go straight to their day hospital here (where we were Wed for the blood transfusion) and they get him set up and then transfer him over to the inpatient “HOT UNIT” as they call it and have him admitted. This process bypasses us having to go through the ER to get admitted. It’s really nice. And everything is on the 5th floor which is also great. So we are always going to the same floor, just going down a different hallway for whatever we are here for- clinic, day hospital visit, or in patient stay. I really like their way of doing things here, it keeps things simple given the situation.
We got some stuff packed up at the RMH and went over to the day hospital where he almost immediately passed out with me in the bed. They drew some blood and got him hooked up to IV fluids and gave some morphine IV to better control his pain. We stayed in the day hospital for a couple hours and then were transferred over to our room on the inpatient unit once the shift changed over. We got a different room again this time. Our tour of the rooms continues…trying to figure out which room is the best one on the unit. Thankfully his mouth sores don’t seem to be as bad as they were last time. His mouth is an angry red, so it definitely hurts, but neither the doctors nor I see any open ulceration like we had the last time around. That’s a plus! I’m praying it only gets better and heals from here vs. getting any worse! 🙏🏼 It’s a nice break for us both when we get to this point. The battle to take meds and drink and eat can come to a temporary hault. He gets fluids throught the IV as well as a lot of his meds change over to IV giving him a little break. It’s nice. He even gets a break from his injections, which I didn’t touch on in the last post.
This round he will be having the harvest of his WBC done. In preparation to do this, I have to give him injections of a drug called Neupogen every evening. This drug will help his body to start spilling out new baby WBC. He will get these injections for over a week and then next Tuesday they will look at a specific blood test to look at how many of these baby WBC are floating around in his body. If it is where they want it, then he will be admitted first thing Wednesday morning to the PICU for the harvest. They will sedate him and connect him to a huge machine (which looks a little like a small ECHMO machine for my nurse friends) and it will continuously take blood out and put it back in to him. During this process the machine can separate and pull out all of these baby WBC while giving him back the rest of his blood. They will then take all these special cells and freeze them until the heavy chemo rounds when they will be thawed and given back to him as a self-donation bone marrow transplant in order to help his body recover his WBC faster in that phase of the treatment. This whole process can take up to 6 hours. They hope to get the amount they need all in one day, but sometimes it can be a 2 day process. At the end of the first day, they will send a specimen off for the lab to determine just how many of these cells they were able to collect. If they’re happy with the number, the process is done. If it is to low, then they do it again the next day. The collections shouldn’t effect his general WBC since it’s not taking his mature cells, so we are hoping and praying that once the process is done, if his counts are looking good that we will be able to go home home for the weekend again. We are really praying for this as his 3rd and final round of the induction phase of his chemotherapy currently is set to start on that following Monday, August 27.
For the time being, we are just hanging out in the unit. They didn’t actually start him on IV nutrition (TPN and Lipids) this time because he has at least been drinking well. I thought because he didn’t eat much yesterday that they would have started him on it today. But in rounds they said he is still drinking well so they’re actually decreasing his IV fluids instead to try and make him more thirsty and see if he can maintain enough fluids himself to maintain hydration. If and when that is the case, then he would be able to leave. That’s the only thing keeping him here at the moment. His pain is still there, but it’s controlled by IV morphine, which we changed to oral morphine today. Tomorrow they’ll probably put all his medications back to oral in preparation for him to discharge again soon. His mouth doesn’t look any worse, which is great. It still definitely hurts him, but if we can keep moving in this direction, then we may be able to go back to the RMH for a couple of days before coming back to the PICU for the harvest. It’s all just a matter of time. One day at a time. He’s been pretty tired today. Crabby, whiny and tired. Rightfully so. It’s ok with me though. Rest and sleep is when healing occurs. His body will do exactly what it needs to do. We just follow his cues. That’s how this game works. It’s his rodeo. We are just here on the ride to help him conquer the bull. This beast of a bull. And I can’t wait for the day!
Our Warrior Journey 