Day 11: June 17, 2019

Day 11. Day 10 felt so good to be in the double digits, felt like we were cruising along. Day 11 feels like we are in an abyss somewhere- the days are running together and are getting long. It feels like we are too far away from the next treatment (day 15) and not far enough down the road. It just feels like this is going on foreverrrrrr but we are only on freaking day 11. Gah. I'm not complaining, and we are marching solidly on, but Day 1 seems like literally MONTHS ago at this point. I think Oliver is ready to get on with it too. He asked the other night, "So do I go back tomorrow?" "Nope, you have 4 more days" and he groaned. This whole thing is an absolute test in patience, of which I have little of to begin with. I'm sure there is a lesson in this.


That said, we are in to a bit of a rhythm with our days "off" of treatment. Without sounding condescending, I am reminded of the days of having a newborn. We track EVERYTHING. Pee, poop, food intake, meds, temperature, heart beat, blood pressure, etc. Just like a newborn- every 3 hours, time to eat! And similar to a newborn, Oliver has his days and nights a bit flipped. Seems to crash a bit hard during the day, but during the nights he is ready to party (well, maybe not quite party, but he is awake and fidgety and can't sleep). It has literally taken all 3 of us to help care for him, and especially when he has the bad nights because then someone is up with him all night mostly. We are thinking this may be the steroids or something causing his anxiety, which we taper off of today given that we are 3 days past chemo. That said, our goal today was to try to get him up more so that he would have a more restful night. I remember doing this with Owen, too, as a newborn, with the difference being that we would wake Owen up during the day by tickling him and throwing him up in the air (safely)…. can't quite do that with Oliver but we can force him up. Oliver doesn't get grumpy per se with us, but he's not happy either (although I know he will appreciate a better nights sleep). It's all done in love.


 First up- 7am after being up at 4am and trying to get back in to a normal routine. It is so good to at least see Oliver out and eating/drinking. Last week at this time, there was none of that.

He also seems to be eating with a voraciousness that was 100% NOT there even just a few days ago. It was just forced a few days ago, and now he actually seems hungry. We are so new at this and stumbling like baby deer through it, so are not sure if this is just being a few days away from chemo and generally feeling better, or if we have the right mix of meds working.

Mom forgot to give dad Bennett's father's day present that he made in school on actual Father's Day, but remembered yesterday am. Bennett said that the rule was that he opened it for dad. Who doesn't love matching tie dye shirts! Super cute.

His favorite food is cookies. HAHA!

Colleen and Owen also kicked off the day with riveting matches of connect 4 and uno. Today was Owen's first day of summer break! Bennett still has school for one more week.

In that vein, Owen's best buddy from preschool last year moved to California at the end of the school year. They haven't seen each other in a year, but they are in town visiting and he was able to come over and have a full day playdate with Owen. I wish I could adequately capture the volume of giggles I heard yesterday. It was so precious. Reunited and it feels so good. They picked up like no time had passed.

 I finally asked if Owen's buddy was a lefty or a righy when they were playing golf. Turns out he is a lefty, like Owen!

While the boys were playing, we dragged Oliver out for a lunch in the sun, with the goal being that he would be up and outside for about an hour. He was man of few words except to reiterate how sleepy he is. At the end of lunch, girlfriend Lexi stopped by to see him for a few minutes (forgot photo op).

Ollie ate a solid a lunch again, too!

The rest of the day was pretty uneventful. I worked, Justin worked, Colleen juiced for Oliver and ran to the store. It was nice in the aspect that there was nothing really "exciting" that required all of us to completely ditch plans and it was a mildly productive day from that regard. Oliver really is doing "better" but I think mentally is struggling with how difficult this all is. As much as we tried to relay how difficult it would be, we couldn't really comprehend how bad it would be either, and I think it is a struggle. He isn't really up for visitors as it takes a TON out of him. We asked him the other day if he was ok with Lexi coming over and he's like "sure, as long as you don't invite the pope over." Ha! Good to know there is still some humor in there.

After dinner time, another forced outing, again to try to help with a more peaceful and uninterrupted nights sleep. Justin and Oliver having a father/son heart to heart.

While they were doing that, I was teaching the boys how to play basketball. Well, Owen has played, but I was teaching him some tricks, but Bennett hasn't played before. It was so cute.

Owen ended the day with another riveting day of connect 4 (I love this shot!)

Again, all in all, a pretty uneventful day. We are getting there. It is a bit hard to wrap our heads around the fact that we are not even through ONE cycle, and I think Oliver broke down a little bit with Justin due to that. Justin's words to him were "Oliver, we are going to get you through ONE day at a time. Our goal is to get you from morning to night. You cannot go down the road of how much is left. ONE day at a time." It's good advice for all of us.