In many respects, I have struggled to keep writing this because I partially feel that it is not my story to tell. I am telling it from my perspective, but it is ultimately Oliver's story. That said, the outpouring of love and support we have received just from this humble means of trying to keep people updated has been nothing short of astounding. So, I will continue to tell it. The good, the bad, and the ugly- the latter of which yesterday defined to a tee. My hope is that my telling our story we a) continue to show (and tell) Oliver just how HUGE his army is behind him b) that we touch someone or help someone else through our story and c) that when we are through this, we all have something to look back on, to remember the details that we will no doubt block, and think, wow, look at ALL we've come through.
With that. Deep breaths. Yesterday:
Started off the day with a bang. Bound and determined to figure out the right "formula" of what works best for Oliver. So, in typical type A accountant fashion, I set up a spreadsheet to track meds, food, liquids, and how he was feeling at any point in time. He woke up feeling pretty nauseous, which was expected after the build up of 5 days of chemo and being on the "off" day, and also why they gave him a long-lasting anti nausea med via IV while in the hospital the prior day. We tried to get him to eat a little bit, and he maybe took a few bites, but just was feeling like...puke. Started with the THC (weed) tincture as well to see if that might take the edge off.
I took the kids to school, and then ran to grab donuts as per requested by Owen for his summer birthday bash on Thursday. I also got a smaller box of donuts hoping that maybe we could even entice Oliver with a donut. At this point, epitome of health is out the window. If we could get even a fraction off a donut in him, we would be doing cheers for days.
We continued to push fluids and try to get him to eat, but he just felt like crap. At around noon, we left him for a little while (sleeping, and comfortable at that point), to go to Owen's kindergarten graduation. It was SUPER cute (and also super hot!) All the feels given that our big little guy is now almost a first grader! We are so proud of him and how much he has grown this year in kindergarten. He is such a kind person, and works really hard. It's heart warming to see. In the back of your minds (which: cue waterfall) is Oliver and just thinking about him at this age. You try not to do that, but you do, and it's....tough.
One of the parents made a 17 minute movie of the kids in Owen's class. It was super cute.
After we watched the video, Mrs. Samms (their teacher) showed us how they typically do a 3-4 minute dance party to get any jiggles out (after sitting for a while). Owen and his buddy Nolan had some great dance moves! Maybe somewhere along there is a dance gene after all. Who knew!
Mrs. Samms read us a book called "Leo the late bloomer" which was about a lion that couldn't read or write or do anything... but eventually he learned how. The last line in the book was "I made it!" All of the kinders apparently really connected to this book, so they wanted to share with their parents. They have come SO FAR in their year of kindergarten! Each kid got up in front off all of the parents and read about how when they started kindergarten they couldn't do something, but how now they can (like Leo). Owen's was about not being able to read, but now he can and he loves books! I was so proud of our kid (who used to be super shy) for getting up in front of probably 50-60 people and just belting it out (not all the kids could). He's grown up so much! Man, I love that kid.
Poppy was standing kind of in the corner out of the way and at first Owen only saw me (sitting in the crowd). At one point he looked up and saw Justin and his face just lit up! I think he thought dad was probably with Oliver, but he was so excited to see him there. He punched his buddy next to him "Look, my dad is here!" Apparently there is a game called hashtags by where Justin was (that of course Justin played with). After the ceremony, Owen said, "Dad why were you playing with hash tags?" Ha!
The graduates! And our amazing kinder teacher. We got SO lucky with her.
Bennett was in school, so it was just the three of us for a family photo op.
Owen and some of his best buddies. Nolan (the big guy next to him) is definitely one of his besties. They are the two big men in kindergarten, and Nolan's parents coached Owen's baseball team. Oliver- very left, was also on their baseball team. It is going to be fun to watch them all grow up together. Can't wait to display this picture at their high school graduation. It was fun as we got to know many of the kids in his class through volunteering in there regularly this year (and through baseball as well). It made me VERY glad I am not a teacher on the days I helped out, but it was great to know people he knew, and be able to talk to him about them. I am definitely NOT a PTA mom or a pinterest mom, but I was so glad to be able to do this.
We got home shortly after 1, and checked in on our other big kid. He woke up when we got there, and said that he was not nauseous any longer but just super dizzy. We ended up calling the nurse and talking to one of our main nurses, Candace, just to make sure we were on the right path and told her what we had done so far between the meds/THC/food/water etc. She assured us we were on the right path, and assumed that his dizziness was likely dehydration. He had peed before we got home and said it was pretty dark. So our goal then was to set the timer and make him drink every 20-30 minutes.
I left to get the kids around 3:30 and we swung by our friends to see the cats. They played with the cats for about 2.5 seconds then spent the rest of the time playing and jumping on the trampoline. I think the cats were just a ploy to get over there to play. Ha.
By the time we got home around 5pm, Oliver had continued to just crash down hill hard. He couldn't lay down because, as he said, the room was spinning so badly. He felt like he was going to puke. So he was sitting straight up, holding a bowl. At around 5:30pm, our kids went to our neighbors to swim (thank god), and shortly after, despite having a bowl, Oliver projectile puked all over (not good, as they really don't want you to throw up). And also, we have to be careful with cleaning it up as it is toxic to us due to the chemo drugs. It went all over Justin, all over Oliver. On the plus side! It also went all over a rug which I didn't like and so we promptly threw in the garbage. After several bowls of puke, started to pull on our hazmat gear for clean up and we started massive chemo laundry and hot wash of dishes. He still felt super nauseous and even more than that, just said he couldn't stop spinning, so we called the nurse back.
She was going to call in some steroids to help hopefully "reset" everything as well as a different anti-nausea med. At this point, he started kind of convulsing as well, which was SUPER scary. We were feeling guilty as hell that maybe it was the pot, but she assured us that would have been out o his system in the early afternoon based on when we had given it to him. She really thought it was probably a mix of a) effects of chemo b) drugs c) no real food or liquids to offset. She said if the new drugs didn't work, we should probably head to the ER in the morning.
I headed to the pharmacy around 7pm to pick up the new meds, and just had a moment. Completely lost it on the way in. It was one of those moments that all of us have had where the tears just won't stop. Uncontrollable. This is all so unfair. Feeling angry. Feeling that this is just unjust. He is such a good kid. Feeling helpless. I sat in the parking lot and just cried for all of this, for the feeling of WHY and WHO would let this happen to this kid, and for us just being so helpless as to how we can help. For knowing how angry he is (which he keeps saying to us: I am just so pissed-- which is so UNLIKE Oliver- the most calm and non-angry person I know). I finally made myself take a freaking selfie in the hope that it would help me pull myself together. Sometimes cry pictures are funny. I mostly felt sad, still, but it did help. And lucky you- because I am posted such vulnerable pictures of Oliver, I figure I can contribute my own as well.
Got home and gave him the new meds at 7:30 and 8:30. Didn't help. Literally sat side by side with Justin convulsing and craning his head upwards, all while involuntarily gagging. I got the kids down and then at 9pm called the nurses back, and just said, I think we need to go to the ER. This is not good. They 100% agreed. We decided Justin could get him to his truck and drive him down, versus ambulance. As I was moving the cars around and pulled the truck to a spot where Oliver could more easily walk to it (and/or Justin could carry him), it hit me that the song that was blaring was "everything is going to be allright." A few minutes later this struck me. Justin always listens to talk radio, not music, so I took this as a sign from the universe. It was comforting as I let this process and sink in.
We got Oliver out with his puke bucket and lined the truck just in case. At this point, the gagging seemed better from the meds, but he was still incredibly dizzy and convulsing.
Text from Justin at 10:30pm. Shortly after my phone went in to silent mode and so I missed a bunch of texts that were on a thread between me/Justin/Colleen.
The ER ended up pushing a bunch of fluids in to him, as well as anti-nausea meds. They don't think it was hydration. They also did a CT scan of his head as they were worried he may have had a stroke. His blood pressure was fine, and everything else checked out ok, as did the CT.
At around 11:30, they pushed some valium through his IV, and that seemed to (finally) give him some relief. I guess he looked at Justin and said, it finally stopped spinning. They were released around 1:30am, and made it home to crash.
We don't really know what the dizziness was from. We are thinking probably a combo of things, but obviously a call to the hospital to follow up and figure out next steps is in order. Bennett heard them pull in and came in to my room (which he never does). He said "mom, I'm scared, can you come in and hold my hand?" Sure, buddy. Because right now, we are all scared, and I need it just as much as you do.
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