Well, we started consolidation today. This is supposed to be one of the easiest phases (Easy is actually not a word I would associate with any of this, but you know what I mean). Unfortunately, it didn't go so great at clinic today. First of all, this morning, her rash was literally oozing through her dressing all over, it looked so yucky. The dressing had stayed on overnight, thankfully, but I could tell it was quite painful. We addressed it first thing and they said when she went to the RTU and was sedated, they would remove the dressing and take a look at it and decide what to do.

They decided to start treatment with yesterday's ANC of 700, so before we got today's blood tests back, they sent us down to the RTU to get the lumbar puncture (chemo in her spine). That was a nightmare. It started out as usual, with David holding her while the anesthesiologist put her out. We went and got something to eat, and were back in time for her to wake up. She woke up her usual way, screaming and flailing and wanting to leave right away. However, the dressing they decided to put on was the smallest one, they use it for babies (the logic being let as much skin exposed to the air to start to heal as quickly as possible). After about 2 minutes of crying and flailing, the dressing started to fall right off. The nurse decided that there was no way that dressing would work, if a little movement makes it fall off. So they were scrambling for about 10 minutes trying to figure out what dressing to put on her, trying to keep her from pulling out her line with her hysteria. Not fun. So the anesthesiologist decided it would be best to put her back out for the dressing change again, since she was so out of control. While she was doing so, she mentioned to us that Brinley has a VERY high tolerance for the anesthetic, and she has to give her quite a bit to get her totally out. Not something you want to hear, but okay. So she hurried and put her out, and normally they have us leave the room until she wakes up again. Not this time. So a minute or so after she was out, the nurse looked at the machines and went into a panic. I mean, she was scared. Apparently Brin had completely stopped breathing. So we watched her fumble around trying to get the oxygen mask to put on her face. That didn't help, so she had to get a ball on the end of it blow the oxygen for her. In the meantime Brinley had started to turn blue. I think it was the most terrifying 30 seconds of my life. Finally after a minute or so of the nurse breathing for her, the anesthesiologist said to have her try to breathe on her own, which she did, and was fine after that. I even think if the nurse had not completely panicked in the first place, I would have barely even noticed, but the nurse was fumbling around with the oxygen, and everything she said had panic in her voice. At one point she said to the anesthesiologist, "She did it AGAIN!" So it happened the first time too. The anesthesiologist was perfectly calm and told the nurse "I know, that is why we have all of this equipment!" I think she was annoyed that the nurse had been so panicky in front of us and she apologized profusely afterwards. She said she decided to sedate her again because she has a daughter the same age and couldn't stand seeing Brinley in pain when she knew she could do something about it. We appreciated that. She also said that she was very sorry that she left us in there, she said she should have had us wait outside like usual and that there was nothing we should worry about. But it was an awful moment for us, I could just picture her dying right there on the table with us being helpless to do anything. I can only imagine what the heart rate monitors would have said for David and I! I wish the nurse would have been more calm, I will be terrified every time we have to do this now, and we still have many more sedation's to go. Needless to say, I now know why they leave parents OUTSIDE the RTU during these procedures. We are on a need to know basis.

As for the dressing, they found a different small dressing that sticks better, and most of the rash is exposed, so we can put a cream on it. They also said we can skip the alcohol step for dressing changes and just use the other cleaner on it, which still stings, but not like alcohol. It may take a little longer than normal to heal because of her low white blood cells, they said hopefully in a couple days it will be looking better. Let's hope so, it looks so very painful. And itchy!

After that, we went back up to clinic for the chemo they put into her central line, and she cried up until we left the clinic. We felt bad for the others in the infusion room getting their chemo and having to listen to her scream, but hey, what can you do? She was having a bad day! Before we left we found out that her ANC had actually dropped overnight to 500, which was quite a surprise for all of us. But they said she was still okay to go ahead with Consolidation. So this phase will go like this:

Today was the only day she will get the vincristine (chemo in her line). She will take an oral chemo medication every day called 6MP. Side effects: low blood counts, mild nausea, mouth sores, abnormal liver function tests. Once a week for the next 2 weeks she will get the chemo in her spine, (more sedation), and then she will have a week with no back poke. This phase is about 1 month long.

I guess you could say today was a slap in the face, out of our dream world and back to the wonderful world of cancer. I wish I could do it for her.

9 comments:

Amy said...

I am sorry you guys had such a rough day back- my heart just aches for this little sweetie, and all she has to endure! PLEASE know you guys are in our prayers, and I hope you have a better next few days

JohnH said...

Rough Day. Hang in. The Refiner is firing you into a precious unbreakable eternal family.

Stacy said...

Wow scary! I'm glad you are home now though. I hope the rash goes away soon - that is such a bummer. Give her cute cheeks a kiss for me!

Ashley said...

Stupid nurses! They don't know anything. Hope tomorrow is a better day.

Danielle said...

Megan Patrick sent me your website and I just wanted you to know that we will be praying for you! We have a little Brinley who is two and can't imagine going through this! Good luck this week, you are doing a great job!

Kristin said...

To Ashley,

Surely YOU would not have panicked like that right? I actually DID think about you and how you would have handled all that.

Sole said...

Wow! you had me at the edge of my seat reading your post today! I'm sorry things are getting so rough! Just hang in there and push through, till you get to the next break! The kids don't miss a prayer without metioning Brinley! (nor do we) Caleb is now praying that "Brinley could go play with her dogies today" I'm not sure what he means by that, maybe the stuffed animals he picked out for her? but I'm sure Heavenly Father's got the message! Love you guys!

Anonymous said...

Sorry that you had that experience with the nurse. Taylor is so beautiful. She has really grown up. So many of the conference talks were about hope through adversity. I'm glad that you have the hope through Christ and his plan of salvation.
You are a wonderful writer. I really thing that you could turn this into a book to help others who have to live through this situation.
Joyce

Ashley said...

No offense taken! I was teasing. I try to play it cool when I'm freaking out on the inside but I never know what really comes across. I could never do pediatrics though, that would be a tough unit.