Day 9 was a good day. We kept asking Oliver how he was and it was typically around a 5. Oliver's 5 is probably realistically a 3. So, not awful, but certainly not good. It was one of those days that was sunny and perfect outside and we had a fun day, but with that comes that sense of maybe guilt is the right word, in that you always know he's in the house feeling like total crap, and not able to be a part of the things that we are enjoying. We help him, he is stable, but 9.9 times out of 10, he's just going to go back to sleep. And it's not like we can just realistically sit there all day and WATCH him sleep. There is definitely some of that, and we definitely could, but I don't think he would want that. And we wouldn't want that from him, either, if the roles were reversed. We were talking last night about if we think he'll remember any of this, or if, as our days are blurred, he will "wake up" from this, or come out of it at the end and feel like either a) his days were blurred b) it's been a million years, or c) he's still on June 7, and can't figure out where the summer has gone. I mean he is conscious now, and can talk (but doesn't much), but we are almost hopeful that a lot of this he doesn't remember.
Whether it is wrong or it's right, as he's under our care right now, we all tend to hypothesize about this journey for him. For US, this is a life altering event. There will be a before and after and the people we are on either side, while they mirror each other, are inherently changed. We were talking and think that Oliver's entire existence is going to be morphed. You can't come out of this and be the same person you once were. I don't really think this is a bad thing. In fact, it may lead to good things- better health for all of us, a better bond as a family, a better ability to know that we are the storm that can fight like hell against anything and everything. But, that said, you can feel the winds of change even now, and wonder if he's aware of it too. It's two fold- making sure he has his meds and his care needs are met, and then also being sensitive to the fact that this, all of this, is something he is going to look back on and have to process the hell out of somehow. As life moves ahead and you continue to care for OG, you just wonder how exactly it is all going to look.
But, for day 9, we chugged right along and while our one goal of having him walk the length of the house was not quite met, we had many minor victories!
First up, a shower AND brushing teeth! (after an uneventful night's sleep....well except for Bennett who woke me up 12 times between 11-2:30am, and who Justin finally went in to sleep with at 3am.... it's always one of them. My kids have NEVER been good sleepers and we occasionally have nights that remind us of the newborn days. Yawn).
Shower was tiring, back to cuddle.
We had the day lined out on the spreadsheet and the pill bottles lined up! Our new regimen is getting in an anti-nausea med every 3 hours. He is still pretty nauseous, and obviously feeling like total a-hole, but this seems to at least help keep him comfortable, sleeping, and he hasn't thrown up. Literally it takes all three of us plus this spreadsheet to keep us on the ball with his meds. I honestly do not know how anyone goes through this type of cancer treatment on their own. I don't think it's possible. Perhaps if the treatment was less aggressive, it would be, but there's no way otherwise.
I went out to the gym mid morning for a little spin. One thing that I keep saying is that we need to remember to take care of ourselves, too. Both mentally and physically. While Oliver is (obviously) in the worst boat here, we are all worthless to him as his care team if we fall apart. I know for me (and how I have gotten through 20 busy seasons) is if I even squeeze in a 45 minute workout, it is basically like my space, my meditation, my church if you will... . It clears my head, and has the added bonus of healing my body. So, I took the opportunity yesterday to do just that. I was feeling a little foggy in the head (is it day 8, day5, day 9? 2019? I DON'T KNOW), so this helped.
In a similar vein, I think Justin's escape yesterday was playing with the remote control (RC) cars with the boys. They have REALLY all gotten in to this and it is a full fledged thing. Meaning, they would go camping up north for a full weekend, and just race cars all weekend. Justin loves this kind of stuff and tinkering around with the cars, and of course the little guys love to drive them. I know they are all excited for the day when they can go camp and race again, but they had a ton of fun plowing them around our property yesterday.
Brothers. Heart melting. A lot of people have asked how the little guys are doing with all of this. I would say... good. They were apprehensive at first when we told them Oliver would be coming to live with us because they knew he was sick, and they "didn't want to get sick." We explained that they can't get this illness and that his sickness is on the inside, and they seem to understand that. They do seem to struggle with why Oliver sleeps so much and can't have dinner with us. It's been a bit heart breaking as well to hear them pick up on certain things like- cancer cells, chemotherapy, etc., and then they ask: "mom, so the cancer cells are bad, am I going to get them? Why did Oliver?" "Mom, what is chemo?" It's conflicting in that I want to protect them from the "bad stuff" forever, but I am also a realistic in that I don't want them to think that bad stuff never happens. So I am both sad, and grateful that they are aware and understanding this experience. I think in some ways, it is good for Oliver to see them, too, especially when they are on their best (IE: Bennett the other day telling Oliver he loved him). I have to believe that those little kids can often subtly give a reason to fight like hell, so their big brother can heal and be strong enough to play and protect them again. This has also been good in that we have SO many people around right now. Oliver and Colleen. Bailey and Angel. People visiting. Having this big family together cannot be replaced. It is 100% the positive in all of this in that they (and we) are seeing how strong we are and how huge our support system is.
I can't even adequately describe how huge of a win this picture is of FOOD GOING IN. A few days ago this was not even happening in the slightest.
The outside picnic lunch required a lot of effort. Night night!
The little boys rode and rode and rode yesterday. We love summer!
And Owen also got to play a ton with Colleen, which he loved! They are enamored by her, which is so heartwarming and cute to see.
Colleen had the great idea that when all the kids were here, we should get a picture of them and Justin and have it framed for father's day. (OH YEAH. Father's day. Sorry grandpa Joe and grandpa Dave... I actually do have cards, but you might get them.... in a week). Colleen had psyched Oliver up for the picture so when Laura and Bailey came in to his room, he was like, "ready?" Ha!
We were going to try to make it to take the picture outside but Oliver was pretty spent after walking to the kitchen, so we decided that was a great spot to stop and do the picture there.
After the photo op, Colleen and Angel ran to get the photos developed and find a frame, and the rest of us played outside (Oliver went back to sleep).
Prior to dinner, had a few more photo ops.... which was a great idea as well!
After dinner, the kids gave Justin the fathers day gift. I think he was truly touched. As a gag, they also gave him a tub of preparation H. Owen goes "what is that poppy?" "You put it up your butt." The little boys: "That's SO COOL." HA!
Side note: any one local know a painter? We were going to paint our house and the shed this summer.... but, not looking like we are going to have the solid chunk of time to do it ourselves!
Meanwhile the little boys thought this would be cool. GROSS!
Late evening wrestle between dad and son... much to Bailey's dismay, he said, dang it you are still stronger. A least for a few more years, anyway...
We kept making Bailey go in to Oliver's room to deliver shake (complete with: protein, butter, veggies, fresh juice, yogurt- basically all of the good stuff in a drinkable form). He got to be the "bad cop" of forcing Oliver to drink the shake and also drink water, giving us a break from the chagrin when we force it all day. At one point yesterday, I brought food and water in to Oliver and told him to drink and eat, and he said "I know, I know, I'll go at my own pace." Ha! Luckily, he actually seems to be doing that. Versus a few days ago, he just wouldn't. We are probably getting to be better dictators, also. But, end of the day and the shake was gone. Yes!
We were also able to get to talk to some of the extended family inadvertently as Colleen had sent a bunch of the above pictures to a group on facebook and started a facebook video chat. All of our phones went off (think amber alert type of thing), and were all like "what is that?" And then there were several family members from east of the mountains on the line. So funny.
The kids were so excited that Bailey could put them to bed. I think that they will probably always remember this kind of stuff-- late night chats in the bathroom. I believe they were talking about what Owen wants to be when he grows up, to which he said baseball player and Bailey was explaining the process of what that takes.
All in all-- we are surrounded by family. By friends. With love. Oliver is comfortable, and hopefully his body is healing. It's so weird how you can move through life doing the same old, and kind of know you have support system around you, but then it takes something like this to REALLY see it and feel it. Everyone has it, so my advice is to tap in to that more often and not wait for a not so pleasant circumstance to bring the circle together. The one positive in all of this has been just that: feeling the circle of love, family and friends that was always there, but was just largely untapped prior to this. #oliverstrong.
1 comment:
Thank you so much Jen for your daily updates. These horrible times definitely have their Silver Linings....I am watching two very strong smart women come together... and everyone is benefiting from this....keep it up mamas!
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