The title pretty much says it all. The chemo has taken over Daylon's body and it's a depressing thing to watch. As big of a pain the Busulfan was (having to do some many frequent dressing changes) the Cytoxin is sooo much worse. He's so weak that his cry isn't even a real cry. Not to mention all the vomiting has blistered his insides making his voice hoarse once again. He's on three different nausea medications and they have seemed to help. Yesterday he started on TPN (IV nutrition) because he was down to 6 oz. a day. A far cry from his normal 40-50 oz. It's also helping with the vomiting. Nothing in, nothing out...sort of. I don't mean to sound negative, we know that this is, unfortunately,one of the hard things he has to do to get better. It's just that it's been an emotional few days. It's so hard to watch Daylon suffer his whole life and now he's suffering more. I pray this transplant works. On top of feeling rotten from the chemo and his 1 year old molars coming in, he has to deal with the pain of bandage changes all day. Yes, it was just the Busulfan that required frequent changes, but when he vomits, they get dirty and need to be changed. Thankfully, I can get away with only doing the spots that are wet. He's not gagging and doesn't know how to commuticate that he's going to get sick, so I've yet to be successful with draining through his G-tube.
One other difficult thing about the Cytoxin, is that it can cause kidney, bladder issues. To keep it under control they run a constant flush and require that his diaper be changed and weighed by a nurse every 2 hours, 24/7. He's not the best sleeper these days so I end up waking him up most of the time. Sleep is a thing of the past. The crummy thing is if his diaper doesn't weigh enough than they give him medication to make him go within a half an hour. Yep, another change. Another half hour to get him back to sleep. It stinks too that we have to be super careful about handling him (in a non-EB way) since his body is expelling the chemo through his skin and urine. Everything gets thrown away (cloth diapers and onesies, I mean). Everything is wiped down with super strong, odorful cleaner and we have to be double gloved to change him.
On a happier note, Daylon's organs are all still function properly! This is a big, big deal. His organs stand a higher risk of deveoping life threatening issues than the other EB kids, since his form EB is internal as well as external, so the chemo is super risky. The doctor just came in and said that they're all really excited to that Daylon went all the way to Day -3 before he needed the TPN and they're floored that he hasn't run a fever the whole time! Infection is really common when you don't have an immune system and Daylon's sores allow for plenty of bacteria to grow. The final great thing is that today is his last day of chemo!!!! The effects of the chemo will still be around for a few more days, but at least he's done with that stage! Tomorrow is a rest day for his body and Thursday is the transplant! It's all happening so fast now. Once you start moving, it really goes.
Father's Day was, of course, on Sunday and the kids came down for their weekly visit. The nurses let us all be in the same room (3 person limit due to the room filters) for a few minutes to watch Brian open gifts and take pictures. Since Daylon started getting really sick on Saturday, I stayed up at the hospital and Brian was back at the RMH with the kids. Keira woke him up (all on her own!) at 6:12am and brought him to the table where she had made him a breakfast of Nilla Wafers, chocolate chip granola bar, blueberry yogurt, some rasins and a chocolate pudding cup. She's not allowed to use the stove, so she worked with what she had! I'm so proud of her. Brian said it was the best Father's day breakfast he ever had. When they got to the hospital and walked into Daylon's room, he pointed and said, "Da-da". Brian was face was beaming. It was so stinkin' cute!
Ya know, there wasn't a fancy breakfast, a bunch of presents and a day filled with all Brian's favorites, but as I'm coming to realize more and more, you don't need all those things to make someone feel appreciated. Brian seemed happier in the 20 mins. we all spent together in a hospital room, than he did in the full day celebrations of the past. It seems simple enough, and I always thought that was the case, but now I know it. It's really been such a blessing in our lives to raise a sick child. We've become mindful of many parts of everyday life that were always moments and decisions we took for granted . Each day you have together is a gift. Cherish it.