Upon arriving, there were several hours of meetings with doctors, specialists, nurses, etc to discuss his cancer, treatment, medications outside of the hospital, plans for what we need to do outside of the hospital. All of this was relayed to me, but I will just say- it is stuff that never in 100 years would I have considered, having never experienced anything like this before. For obvious reasons (and this I knew), everything has to be super sterile and clean due to Oliver's susceptibility to infection and illness. But what I didn't know was the importance of keeping HIS bodily fluids away from us- IE: using gloves if he throws up and we are helping him, sanitizing the crap out of everything- where he uses the bathroom, sheets for sweat, etc. Apparently he is so toxic from the chemo drugs, that these can pass along to any one of us via bodily fluids, which would obviously not be good. WHO KNEW (not I: not a world that I have ever ventured in to).
Oliver's treatment started at about 10:30am. His infusions are approximately 7.5 hours to 8 hours a day, and as I mentioned yesterday, he will go for 5 days straight as the first part of the 15 day cycles. They up the dosage every day, and check his baselines each day to see how he is doing. Due to the length of his infusions, and the meetings with everyone yesterday morning, the crew was at the hospital from about 7am-6:30pm. Luckily, most got a nap at some point. We did find out that the length of time (8 hours) is a bit atypical of how long these take (in comparison, most people only have 1.5-2 hour infusion treatments- so quite the difference). When meeting with the doctor yesterday, we found that the recent scan earlier this week showed that the relentless C has continued on its aggressive trajectory and moved in to his lungs, which is obviously, bad.
Justin relayed that after this they relayed the numbers/prognosis, nature of the cancer which meant no deviation from super aggressive treatments. One thing I can say was the general consensus by anyone and everyone is that the numbers DO NOT MATTER. We are in this to fight and as long is Oliver is willing and able to, we will do so. We truly believe that all of us will come out of this kicking and screaming in a fight against C that will be (in little brother Owen's words): epic.
A few pictures:
Cousin Eli came to see Oliver yesterday. And I almost died because I haven't seen that kid since, I don't know, he was 14. Ok, stop tripping with me and growing up!
Getting ready to start treatment:
Naptime and the sweetest of pictures of brothers holding hands.
Getting ready to go home for the night. DAY ONE DONE! Little bit of a rough ride home with a puke break on the side of the road. But a little anti-nausea meds saved the day once back here.
Back at our house, the brothers Valente took a step of solidarity in this freaking fight. Or as Bailey said, support in the college kid who can't find shampoo. And as I said, Justin is for hire... as long as the cut is only a buzz.
Love these kids so much. Justin and I went to bed last night thinking, ok, tomorrow we go again. He was exhausted from being there all day- the emotions, the information, etc. I was feeling similar- information overload, juggling the littles by myself all day and trying to maintain a sense of normalcy for them (obviously not the harder job), but despite our exhaustion, we just looked at each other with our heads spinning. You can't sleep. Despite the exhaustion, you can't sleep. Your mind, despite knowing you can't fix anything, WANTS TO and won't let you rest until you figure out how (but you don't, and so the cycle continues).
The absolute hardest part of this seems like it will not be the sitting around. Or the knowledge of what this is. Or the medications. Or the details of what we need to do to stay clean and sterile. Or the back and forth to Seattle. It's knowing that Oliver already is starting to feel the big yuck. Seeing him physically feel how his body on the inside is (ILL) and not being able to "fix" it and make it better RIGHT NOW as parents is excruciating. In all the realness and positivity I am trying to convey, the most used sentence at our house lately has been "this fucking sucks." And not trying to deviate from being positive because we are also more determined than ever to fucking fight, but you NEVER want your baby to be hurting and not be able to take some of that. Helplessness is a truly awful feeling as a parent, and all you can combat it with is love.
I kind of eluded to this yesterday, but it's so interesting (although probably shouldn't be- we all know it), how the mechanics of your life can change in an instant, and you don't care because you'll do everything you can for the fight and journey you are on. So, onward we go. Day 2!
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