Day 12 started off just like the past few have...only this time with an early morning visitor in the big 6 year old.
It felt yesterday like we were getting in to a rhythm of figuring out what meds needed to go where, food in, liquids in, walks in, sleepy time.... all with a big red check. The one thing of the puzzle that we can't quite seem to get a handle on is Oliver's flipped days and nights. When Oliver got up yesterday, he said he had an awful night- was just antsy and anxious all night and couldn't sleep. But he is so night, didn't wake any of us up. He came out to eat a little bit and then promptly headed back to bed.
Owen helping out with chores! Colleen was heading back east of the mountains for a couple of days to work, and so Owen was spending time with her before she left. I am a fan if it gets him to do dishes!
We got Oliver up again late morning to eat, meds, and see how he was doing. He was still pretty out of it and falling asleep at the table. Again, foreshadowing- perhaps this should have been a sign of impending issues. His pulse was good, temperature good, just said he was tired.
And he said he was a bit cold. Poppy's sweater for the win.
We got him up again at 2pm to do the same as per above, and it was like he was in a dead middle of the night sleep. At that point, we were convinced that somehow the Ativan (a benzo) was having the opposite of a sedative effect on him at nights and making him jittery (the only difference in meds between day/night was this drug given at night), and so I called my uncle (a pharmacist) to chat about it a little bit (very helpful) and we also put in a call to the doctor. The nurse at that point basically said, well, don't give the anti-nausea meds every 3 hours like you have been, cut back on the Ativan, etc. Which is frustrating as they had been the ones telling us TO give the anti-nausea meds every 3 hours! Gah! It's like NO ONE REALLY KNOWS WHAT THE HELL TO DO! We just want a one size fits all solution and there's not one. Frustrating.
Meanwhile, Owen had spent the afternoon with his friend Grace and the kitties... and playing Mario cart. After I picked Bennett up from school, Bennett got to do some of the same. Happy boys.
We got home shortly after 5pm and Oliver was still crashed cold. Justin had tried to wake him up several times to no avail. He was sleeping peacefully so we let him, and based upon our correspondence with Seattle cancer care, we skipped the 5pm anti-nausea med. At around 6pm, Justin was out in the gym and Oliver came out and said "Hey can you get my pops?" Cue: panic. I was like "are you ok?" "I think so...."
Come to find out he was SUPER dizzy again, and nauseous. Shit. However, he had just peed and it was clear. We did a little back and forth of should we give him meds, and if so which one. At around 6, we gave him the anti-nausea, and it seemed to help. However, almost instantly, he got jittery. Ok, great- figured that one out, that is the med that makes him anxious and jittery. But it helped the nausea. Thought we had solved it.
Meanwhile, crazy little boys...
Oliver wanted to walk around some, so he did. We really thought that we had figured it out. Temp was still good, heart rate good, he ate some shake (filled with all the goods, as per usual), and some bagel.
Shortly after this walk, all shit hit the fan. Justin comes out. He's about to puke. Dizzy and lurching like last week. I walk in to the same situation as the week prior where they are holding a puke bucket, he's drooling and looks like utter hell. We give him an Ativan at 8:30 in the hopes that it may take the edge off some, while I was trying to get the little guys to bed and call SCCA to see plan of action. They FINALLY called me back at around 9pm and said best bet was to go to the ER again. I sent Justin and Oliver off, and apparently it was packed there so it was a waiting game until around 11:30pm-midnight when they finally got a room. Oliver was still shaking.
Fast forward past all that madness, we found out the following: a) Oliver has continue to lose weight- 129 pounds b) Chest x-ray to rule out any other issues (came back ok) c) other tests came back poorly. His white blood cell count was virtually zero, indicating an infection without the fever. He was at that point admitted to the hospital. In Justin's words: chemo takes the WBC as low to zero as possible without killing someone and about damn near did in Oliver's case. Said that he could have caught something from a fly or dust given how low the counts were.
They gave him 4 pounds of fluid, and he was able to eat. At this point, as I write this, we are still waiting on tests to figure out exactly what is going on. The pain seems to be eased from the valium, and he has had 4 IV's of antibiotics.
It was a long night of Colleen and I texting Justin and seeing how our guy was doing, and not much sleep (if any) on their end.
Yesterday morning, this song came on in the car. It has multiple meanings in terms of disconnecting and savoring what really matters in life.
What struck me yesterday morning and resonated with me all night was the chorus part:
Well, sing, sing at the top of your voice
Love without fear in your heart
Feel, feel like you still have a choice
If we all light up we can scare away the dark
Love without fear in your heart
Feel, feel like you still have a choice
If we all light up we can scare away the dark
I should also mention that Justin and I saw this guy in concert a few years ago, and I will never forget the moment of this song when we all joined together to sing. In fact, the crowd singing this song was how we got the guy to come back for an encore. It was, quite simply, moving. And today when that song came on my car, I realized that it had multiple meanings. IF WE ALL LIGHT UP, WE CAN SCARE AWAY THE DARK.
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