It cued immediate calls to Seattle Cancer Care- the best in the area to do chemo treatments, and more specific doctors in TC. And it prompted the start of chemo just a mere couple of weeks later. The balls didn't just roll, they avalanched and it set off the whirlwind to get us to where we are now.
The start of round 3. Round 3 was pretty unfathomable 46 days ago. Even just the end of the first week of round 1 was not something easily processed. We took each day minute by minute, not knowing what to expect (there's that expectations word again). The days were long. We had no idea that by "aggressive chemo" that meant just that- 10-12 hour days in the hospital for infusions. That's pretty aggressive. We had no idea what bleo fever is, that it was EVEN A THING. We had no idea what neutropenic fever was and that it was EVEN A THING. We had no idea that Oliver would respond so poorly to certain meds making him essentially non-verbal and largely unresponsive for almost all of round 1, except to be dizzy enough to land in the ER a couple of times.
I'm fairly sure that all of us would be ok if we hadn't had to have learned all of this.
Round 3 feels... honestly? Exhausting. We are tired. We want to be done. It's 21 days, and we know generally what to expect. But it's hard to see your kid feel so bad, and to now have the knowledge that it's likely going to get worse. But, the saving grace that we have to focus on is that it IS hopefully the last round. We have to focus on that. It's kind of like when I told Oliver in the bleo fever that the Tylenol would start to work in ten minutes, and he could do anything for ten minutes. We can do anything for 21 days. It's long and short, all at the same time, but we can do it. Where it gets dangerous is when we start to focus on the "what ifs" of the AFTER. That is a path we can't quite allow ourselves to go down yet.
Waiting for the doctor after blood work. At the beginning of each round (day 1), and on days 8 and 15, they always do blood work and meet with the doctor to assess that the current plan is on track (IE: make sure his vitals are ok and he is not adversely responding to the treatment-- minus the "common" negative reactions. Meaning, if his vital organs were not handling it, we would be reassessing).
The good news is that his numbers look great, even better than last week. The doctor was impressed, actually, which is great news. His weight, however, was only 132, so down about ten from two weeks prior when he was at 142, which was a pound over his starting weight. It's been a battle the past week to get him to eat, and to find anything that sounds good to eat. But, he's holding steady in the 130s, and everything else looks pretty good. The doctor said everything he's feeling is pretty normal- nausea, fatigue- but to keep eating and keep moving. So we're bound and determined to try to do that, although we know that during the 5 day block, it probably won't happen.
The bad news of an early appointment: when scheduling sucks and they don't start infusions until 11am so you have to wait 3 hours in the infusion waiting room. Dumb. Makes for a looooong day. Yay for them for getting him back TEN WHOLE MINUTES early. (eye roll).
Finally he got back and after a bit of an issue with the IV (had to have another one put in- he was pretty dehydrated- also on the list: keep drinking!), he was finally set to go.
And promptly passed out.
Meanwhile, back at home, I was juggling the two little boys. All of our options this week for childcare were/are traveling, and so we are just juggling. Not ideal, but not that big of a deal either. Justin went in so that he could be there to meet with the doctor so I had little kid duty. I just figure work is going to look weird this week. I'll work early and late and help out with kids and chemo during the days. It is what it is at this point. I was able to buy a couple of hours of work with the kids by the TV babysitter. Sometimes, you just do what you have to do.
While Oliver was finally getting back to infusions at 11am, I decided the kids had had enough TV, and so we took off. First stop- the park to play.
Don't worry, Bennett still refuses to take off his hospital gown... so everywhere we go, he looks as if he was just released from the hospital. I loved the looks from people at the park almost as if they did believe we had just gotten released and went straight to the park. Ha!
We then headed in to Seattle, which is getting familiar to the kiddos (also talk about B's hospital gown there- he got all kinds of sympathy stares!)
We spent a few minutes in the room chatting (and getting apple juice/cheese which is the highlight for the kids), before heading outside.
After getting back, we hung out for a few more minutes before the kids hit their limit and craziness erupted in a tiny hospital room. They do pretty good if we run them around, but their limit is still pretty much just few hours over there.
Oliver was TOTALLY out of it yesterday. Completely zonked. Even during changes of drugs/hydration on the IV, he didn't budge. He crashed hard, which was probably a good thing. He was pretty non-verbal, as well, responding only by shaking or nodding his head. Scary as it reminded us of round 1 but he perked up and started to chat later in the day once he got home.
Back at home, kids were getting dirty outside, which is just what they needed.
I was able to get a little more work done in between tag teaming with Justin and the little boys, and the crew from Seattle made it home right as we were getting the littles to bed around 9pm. We were able to get Oliver some food (which he actually ate!)
He was still completely wiped, however, which is understandable. Sitting at the table after dinner, just bushed. If there was a photo collage of the faces of cancer, this would make the page.
And, with that, we are 20% done with the 5 day block. That is something. The 5 day block is BRUTAL, and takes a tremendous amount of focus and strength for all of us to make it through. It's not so much hard but it's just long days of sitting in the hospital, and each day seeing Oliver weaker and feeling like more crap. But, he's a trooper, a fighter, and he's resilient. If anything else, his numbers from his bloodwork tell us that even when he can't speak it, his body is handling this like a BOSS. Check out the photo from our insurance agent today- love it! #oliverstrong
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