August 9th update - New month, New treatment phase….

We’re trying our best to be more consistent with these updates!

July completely flew by, and we were tryin to be as optimistic as possible during her last stay, but that ended up being a 14-day hospital stay. At the time of the last update, we had been there for 4 days and things were looking pretty good aside from the fever that landed her there.

Unfortunately, she started to develop some pain on her right side the day after the last update, which then turned into another fever. The pain wouldn’t go away and turned into a few days of imaging, which was so hard on her. Between dealing with the pain, fevers, and the multiple attempts to insert an IV, she was just so over it.

Once they were able to do imaging for a few days, they were able to determine that she had an infection in her lung. They weren’t worried. They knew what medication to administer and said they expected her to recover soon.

One thing that they always have to go over before administering a new medication is explain what it does and what the potential side effects are. You guys know those commercials on tv where they have this amazing drug and everyone in the commercials looks so happy? Then the narrator lists like 30 side effects? Well, we’ve come to expect that being at the bottom of the list does not make her chances of getting them any lower.

So we try to do our due diligence and ask what we need to be looking out for. They mention a few of the most common side effects but are always hopeful that she gets none…

The first night after getting the new medication as I’m trying to sleep on the hospital couch…

“Daddy? Can you take your hat off of your bag? It kind of looks like a face looking at me.”

I guess I could see how the silhouette would could look like a head and shoulders. Moved the hat and didn’t think anything of it after that.

The second night after getting the new medication…

“Daddy? I think I’m hallucinating. Everything I look at morphs into a face. And I saw a face above the curtain (privacy curtain at entrance to the room) and it smiled at me and then it dropped below the curtain but I didn’t see any feet.”

So Rachel and I start thinking, “What changed? She hasn’t had chemo for a week? Well she did start that new medication for the infection, but they didn’t say that there were any side effects like this...”

They always say not to Google, just ask the doctors. But when all the overnight doctor has to say is, “sorry, I’m not too sure what may be causing it, but her vitals are stable. There’s not much else we can do except wait for the morning team…” Then yes, we’re going to Google.

Of course, it turns out that hallucinations are an extremely rare, but possible side effect of this drug. It’s later confirmed by the day team that yes, it’s probably what is making her see things.

So there we were, hoping for a short stay, ending up staying for 2 full weeks as she fought another infection and medication that made objects turn into faces and the walls turn into moving colors and patterns. She got through it and on day 14, we were able to come home.

She was home for 10 days before we had to go back to start the next phase of chemo. It was a very much needed 10 days for her body and mind to recover. Day-by-day, she started to feel more like herself and started doing normal things around the house.

It’s amazing how easily we all take everyday activities for granted. Just seeing her and Drew watching tv together on the couch, having her come out of her room to play board or card games, and seeing her on Fortnite or Minecraft, are all things where I’d just kind of sit there and look at her like, “I can’t believe how normal of a thing this is, but how much she hasn’t been able to do it since being diagnosed.”

After those 10 days at home, we were back at the hospital to start the next 28-day cycle of chemo. Since this particular chemo can have immediate side effects, it requires a stay of at least 72 hours. She was admitted on Tuesday, 8/4 with the expected discharge on Friday, 8/7 “if all went well”. The first day went great. She was tired from anesthesia to get an intrathecal chemo (chemo administered into the spinal column) and from also getting her new chemo, which is basically an IV bag full of chemo that will be pumping chemo into her 24/7 for the next 28 days, but her first day at the hospital was otherwise uneventful.

 Fast-forward to the next morning, she ended up throwing up 4 times and needed 4 IV poke attempts, including 2 attempts with an ultrasound machine, to get an IV line started to give her anti-nausea meds. It’s hard not to tell your daughter to stop mean mugging all the nurses and doctors when they’re genuinely trying their best to get you better as soon as possible, but I guess I’d be mad too if I threw up 4 times and got poked with needles 4 times too lol. That said, on day 1 of her diagnosis, the education nurses said “she’s still your daughter, you are still her parents, and it’s still your job to parent her no matter what’s going on.” And we truly believe in that. So Kyla, remember that they’re trying their best! They don’t want to poke you or give you medicine that makes you feel sick! But they do it so that at the end of all this, you get to have a normal life.

Part of that normal life is her spending time with her brother.💚

Drew has been an amazing little brother throughout this entire process, but especially during this summer. He’s come to the hospital for many mommy/daddy switches, spent time with her on FaceTime, and when she was finally home and still scared because of her hallucinations, he was more than happy to have sleepovers with her. He may not understand how much it means to her, but when your 14-year-old daughter comes up to you and asks, “Can Drew spend the night again? I like when he sleeps in my room, it makes me feel safe...”, all you can say is “as long as you ask him and he’s okay with it, sure,” while trying to contain a heartfelt smile knowing that your kids love each other. She finds him in another room and all I heard was, “Yeah! I can sleep in your room again. I like it!” Nothing makes you happier as a parent than to see your kids taking care of each other like that. So, if you read this in the future, thanks for being a great little brother Drew.

We also want to thank my parents. We had a big family vacation to go on a Mediterranean cruise planned almost 2 years in advance. Of course we couldn’t go anymore, but encouraged my parents to go ahead and enjoy themselves. The day after they left for 2 weeks was the day before Kyla’s 2 week hospital stay. We’ve always appreciated everything they do to help us, but nothing is as good of a reminder as literally not having them available at all. They do so much for the entire family and help out with Drew so much, and it’s not something we ever take for granted, but is something we want to continue to always be appreciative of.❤️

If you’ve made it to this point, thanks for spending a good portion of the day reading this. As always, thank you for your continued love and support. The summer has gone by so quickly, school is just around the corner, and though it’s been very different this year, we are forever grateful that we have each other and that we have all of you supporting us through this.

Thanks and love you all! Hope all is well!