Today, May 1.
As far as the Chemo goes today was a bit scary.
This is day three (last day of drugs for this cycle) and she was to get four different drugs today. She has had all four in the last two days without any problems, besides some vomiting- but we can handle that! One of the drugs administered has the potential for allergic reaction... sending kids into anaphylactic shock. Its very rare but because its life threatening the protocol is that a nurse will stand bedside for the entire hour it takes for the drug to be administered. I guess some hospitals have pulled this because a problem is so very rare and it takes up so much nursing time. But today the protection of the Alberta Children's Hospitals strict protocol was on our side! During this time blood pressure and vitals are done every 15 min, she did great for the first one and then started to nod off in her daddys arms. While the drug was going in our nurse started doing some teaching so we could learn how to take care of her port and line for once we are discharged. We need to know how to clean it, change the caps, change the dressing around it, how to use the heparin lock. Charlotte did one head nod like she was falling asleep and then just tucked into Rob, asleep. I kind of thought we had just bored her with all the teaching. Our nurse asked if it was nap time and she should be sleepy, but by the time we had answered "no" she was already shouting in Charlotte's ear and tugging on her shoulder. Charlotte did not respond. Before we knew it our nurse had her blood pressure read-it was very very low, stopped the evil drug, started the "anti-allergic-reaction-drug," called the doctors, debriefed with all-there was an extra 6 people in the room... and Charlotte was waking up! This was in a matter of 5 minutes. It all went very fast, and excruciatingly slow. Within the next ten minutes she was sitting back up and playing peek-a-boo with one of the "extra" nurses. It was pretty amazing to see how she could bounce back.
The rest of Charlotte's drugs were delayed for a couple of hours to ensure that we were out of the woods with this reaction. The rest of them went well. Now our (doctors) biggest concern will be what to do about this drug for her next two cycles. Please pray for guidance for the doctors. We have over two weeks to come up with a new plan. It sounds like some of the options are: to introduce another drug before hand that will hopefully let her body accept this one again, try different doses and rates of this drug-maybe it just went in too fast they said, or find out if there is something else that can be used in place. Our main fear is that we wont know what will really work until we try it. That means we might have to risk this again. I'm sure that her safety will be covered even better for her next rounds, but its still scary to think about. The doctor said this this is the first case of this they have had here in well over a year. So we will be venturing into a less known territory.
This definitely reminds us that we are in a great hospital that thankfully refuses to "cut corners" and puts their kids first. Our nurses are amazing and really on the ball. We are surrounded by loving supportive people (you) whose prayers and well wishes help us get through each day. And, as a friend put it so well, the super-natural strength from God that is carrying us through all of this.
Before all that happened we had a visit from the "weekend" doctor who said she was doing really well and that at this rate we might even be discharged (as far as the Ronald McDonald house) by Monday or Tuesday. That is as long as our teaching was done and we had sufficient time to practice, and then do each step on Charlotte in front of the nurses. We got part way through trying out the cap changes and heparin flush on the dummy before we move on to trying it on Charlotte, now we just have to try the scariest step of cleaning the whole dressing over the port. Doing it on the dummy is easy, but he sits pretty still and does not complain when we rip tape or bandages off him!
I'm not sure what today's turn of events will mean for our discharge date, but we were really happy to hear that will be an option. We were told not to expect to go "home" this cycle. I guess we will see what our primary doctor and nurse have to say on Monday.
Goodnight to all,
We love you,
From Rob, Allison and Charlotte