Round 5 - A Harsh Reminder

We checked in to SCH for Charlotte's fifth round of chemotherapy yesterday - a batch of methotrexate. Charlotte has handled this medication well so far, so in a lot of ways we were pretty relaxed about the chemo for this week. The actual milestone for this admission was to get Charlotte's NG tube placed to help with nutrition and medicine delivery. While we knew that Charlotte wasn't excited for the process of getting a tube stuck through her nose and down her throat, we were hopeful that it would go quickly and smoothly. Boy, were we wrong.

After getting settled into our room in the morning, we waited a bit for some anti-anxiety medication to be ordered and administered before the tube placement. The hope was that Charlotte would be relatively calm and the nurses could get the tube inserted through her nose and we would get on with treatment. Despite having some success in the past with the anti-anxiety meds, they didn't seem to help this time around. Charlotte tried very hard to calm and soothe herself before the tube was placed, but even when she was as "ready" as she could get, we could all tell that she was quite tense.

The lovely nurse Carmen (seriously, one of our faves here) did her absolute best to make the insertion fast and as comfortable as she could. It only took about 10 seconds, but I can tell you that it didn't feel that fast to any of us, least of all Charlotte. But, there was success! The tube was in. We've been told that the discomfort generally goes away pretty quickly, but Charlotte was still quite worked up about it. Netflix and hot cocoa were seemingly the only things that offered some relief, but that relief was pretty minimal.

About 15-20 minutes after the tube was placed, Charlotte started getting sick. We don't know if it was nausea from medication, or discomfort from the tube, or too much hot cocoa, but whatever the cause, the result was rough. I'll spare the details, but in a word, I'd describe the experience as visceral. Few things can make you feel more helpless than watching your child be sick, and this was that feeling cranked to 11. And of course, with as sick as she was, she vomited up the tube, meaning all the stress and discomfort was for nothing. Back to square one. So yeah, fuck you, cancer.

Eventually we got Charlotte cleaned up, and back into bed to rest. She was a lot more comfortable, but we found ourselves in a tricky spot. We got admitted at 9 am and it was now around 1:30 in the afternoon. We knew that we still needed the NG tube reinserted at some point. We also needed to actually start the chemotherapy, which had been delayed due to complications with the tube. We also all needed some food for the day, which was definitely contributing to stress. We had been banking on the NG tube addressing that for Charlotte and hadn't considered the whole day spinning out of control.

I ran to grab some food from the cafeteria for the three of us, and got back to the start of a discussion with some of the medical team around timing for take 2. We weighed the pros and cons, but ultimately decided to give ourselves a break and postpone the tube placement by a day. We talked about a few different approaches with some Benadryl and numbing spray, and hoped that those combined with more rest would be a winning formula. We were able to get settled and focus on chemo for the rest of the day. Unsurprisingly, Charlotte was exhausted and she fell asleep in the early evening, and we did our best to rest and relax for the night.

After Charlotte had been asleep for a while, we were alerted by our night nurse that Charlotte's primary oncologist had tried to reach us about the next tube attempt. It was late enough that our phones were on 'Do Not Disturb', so we had missed her call. We were able to get in contact with her after a few minutes of phone tag, and were happy to hear that she was up-to-date on the situation, and she had a plan. Dr. Brittany wasn't confident that Benadryl would be sufficient, and she was advocating hard for us and Charlotte to have additional support from the mobile sedation team. She wanted to make sure that Charlotte would be put under for the next attempt, and hopefully have no feeling or memory of the actual tube being inserted this time. We could not have been more on-board with this development, and we're so very grateful to have a team that is fighting for us.

We woke up early to try and order Charlotte some breakfast before 8am. We were originally told that she couldn't eat after that for the anesthesia. We ordered a single pancake at 7 am, and were given the standard wait time of 45 minutes from the nutrition team. Around 7:30 or so, Carmen was back for the day shift and let us know that we should actually have until 9 am to get Charlotte some food, which was an extra relief. However, nobody told the kitchen about that timing, so even though we place a breakfast order, it was never delivered. Lauren called at 8:15 to see where it was and they told her that they didn't make it because of the 8am deadline. Lauren calmly tried to explain that the deadline was now 9am, but more importantly, that we placed the order as early as we could have hoping to have the food at 7:45, which by our math, is still before 8. The kitchen seemed to think differently.

Enter Carmen, who was able to call them and let them know that our girl needed a pancake, and that they needed to bring it to her quickly. It still took about 30 minutes, but hey, our breakfast was here and Charlotte went to town. After she ate, we explained to Charlotte a little bit about what would be happening later, and how it would be a lot different. She still wasn't excited, but I think she understands that it needs to happen and that this will be a better process.

After breakfast, she was able to go to Physical Therapy for half an hour, and then school for an hour. She was very excited about both of those things, and it was nice to see her be happy.

That brings us to where we are now. The procedure is scheduled for a few hours from now, and we're anxiously watching the clock. Well, Charlotte is asleep, but Lauren and I are trying to keep ourselves busy and feel prepared for another go at this thing. We know that we're in good hands with everything, but it's definitely been a reminder about how challenging it can be to get through this.