To be honest, I don’t remember much about June 11. At least after 7:45am. Like I mentioned before, transplant started at 4:10am and the infusion ended at 7:45am. I had been so keyed up for the past 24 hours, hell, for the past 4 months, that Thursday was a day to kinda zone out and just be. Gregory and I spent the day relaxing and trying to catch up. We didn’t sleep much, but we did do absolutely nothing. He crashed at 11:00 and we slept until 8:00 this morning. Granted it wasn’t a solid sleep, staying in the hospital is not a place for solid sleep. Between potty trips, vitals, meds, blood draw, weight check & just being in the hospital, it’s never completely restful. Yet, I did feel so much better this morning. Note to self: Do not attempt any further all nighters. Or semi-all nighters. It does not make for a happy caregiver.
One of the side effects of his last chemo, Melphalan, is a sun-burn like reaction. Gregory’s skin will turn dark, like a tan and it will begin to flake off. Gregory’s has started with his scalp and his groin area. Currently they are bright red, like a sunburn and his scalp is getting flaky. It’s itchy, too. They are going to start him on Atarax for the itch, but the pharmacy didn’t have it on hand. It’s been ordered in and he is being given Benedryl, for the time being.
They started him on a calcium supplement, yesterday. This regimine can strip his calcium, he was low, so there you have that.
This mornings weight check proved that he is losing weight and not eating enough to maintain weight. His weight this morning was 12.4K. His admit weight was 12.8K. TPN was started today, too. Which is so very good. While I still need to log everything he eats or drinks, I don’t have to constantly harp him about it and stress over wether or not he has eaten anything. His Mucositis will also get bad enough that he won’t be able to eat. He also is on a Pepcid like medication. The TPN can be hard on the kidney’s, so they will be monitoring his kidney function, very closely.
Whew! Lots of changes for one day. His IV pole is packed, now. Two pumps that take two lines each and four infusion pumps for medications. For posterity sake, I should mention that diharrea has kicked in. Of all the side effects, this is the one I dislike the most. Enough said.
Counts: HCT ~ 36.4, Platelets ~ 29, White ~ 1.9, ANC ~ 1805
His HCT should NOT be this high. It jumped nearly 10 points from yesterdays. Dr Manley suggested that his marrow is giving it one last go before giving up the goat (or is it gohst?). It is not related to his Bone Marrow Stem Cell Transfusion. He received Stem Cells, only. They are incapable of finding their way, engrafting and producing anything that fast. Needles to say, they did run a repeat CBC to confirm HCT it was the same. Hopefully I will have a clearer answer, tomorrow.
He is going to continue to get sicker. His job, right now, is to rest and get through these symptoms. My job, right now, is to learn his cues so we can correctly address his symptoms. I think we make a pretty good team.
The family next door. This topic has been weighing really heavy on me. I’ve felt the need to document my emtions towards it, yet I did not want to put my energy there. This family is fighting a second relapse of Leukemia. I don’t recall which one. The kid is significantly older than Gregory, yet young enough to be treated here. The maximum age is 24, I think. He has been having a rough time. When I say rough time, I mean ROUGH. Rough enough to give me anxiety and tiny panic attacks. For those of you that know me, not much puts me into a panic, nor causes me anxiety. This situation has. Despite the fact that I KNOW that each case is different and each treatment/recovery is different, I can’t help but imagine Gregory in this kids shoes. It’s been pretty painful to be next to. I’m also not the type to demand a different room. This is reality and there are going to be rough times all around. I cannot shelter myself from it. I’ve had several conversations with the mom and we hit it off pretty well. They moved him up to ICU today, not because he was in dire straits, he just needed intensive care than can be provided there. It’s a good move for him. Here’s my truth. I’m really glad he is not next to us, anymore. While the next patient could be struggling as well, and/or Gregory could have some really rough times, for the meantime, I am glad he is not next to us. On the shirtails of all these emotions, his mom comes to see us and tells us she has something for Gregory. She brings in this HUGE four foot tall black ‘n white tiger. It’s cute and Gregory loves it. The mom thanked me for reaching out to her and bringing her some comfort. I tell you, she has been through hell and back, times three. She needs a little bit more than simple human comfort. If there is any extra energy to spare, I would love it if Lonnie could have some lovin’. His family, too.
Ginormous thank you’s to all of you who helped us to get through, sent positive energy, thought happy thoughts and helped to create a happy home for Gregory’s new cells. They are currently swimming about the insides of Gregory, searching for a place to live and making it their new, happy home. Go cells, go!
The OffSpring back HomeHome received a delivery from Super Sibs, today. They were so stinkin’ excited. They both received Trophy’s awarding them for their Strength, Courage and something else (I can’t remember!). They were very timely and so very well received.
If you ever get a chance to see your child on a narcotic, whoa! The morphine kicks in so fast. A few minutes after it is administered, Gregory gets this mini-high. All excited and talkative. It’s truly a trip. He received another dose tonight and was obsessed over getting something to eat. He finally agreed upon something from the snack basket. We opened them up, place them in snack bowls, arranged them on his lap (as he was lying down) and he promply fell back asleep, without even touching them. As long as he is not demanding and snappy, I am indulging any little whim he has. As long as it is reasonable attained. If/When he winds up on steroids, I know that there will be snapping and severe demanding. I’ll cross that bridge when I get there. At this point, I’m trying to keep his manners in check. One day he will be well, again, and I am trying my hardest not to create a little hellion.
The OffSping from HomeHome and I had a chance to web cam, tonight. Finally. It was really cool. They got to see Gregory and Gregory interacted with them, too. Gregory refuses to talk on the phone with anyone. So being able to see them was pretty cool. We will try to do this more frequently.
That’s about it, for now. Everyone have a fantabulous weekend. It’s the start of your summer vacation, for many of you. Enjoy it!!! Don’t waste it!!! There is nothing like summer time. Period. Love to you all. More later, gotta jet.
- Music:Gregory ~ Sucking the Bejeezus Out of His Pacifier