Day 21: June 27, 2019

Ok, so today actually is reason to jump up and down, as it "officially" (kind of) marks the end of cycle 1. We don't start cycle 2 until next week; however, we were told that the cycles are 21 day cycles, so I guess we just got lucky to have a few extra days reprieve between cycle 1 and 2.


Today, I left Kansas City- and my kids with my parents- to head back to Seattle. Flying at 35,000 feet today, the overwhelming feeling was... a bit of sadness. I hate leaving my kids. I mean, I love it, and I NEED a break from them sometimes (whoever doesn't, I want to meet you and also, I think you are lying!) But, I still hate leaving them despite needing to do so every once in a while. All of that said, there was some amount of feeling sorry for myself on the plane- some sort of introspect. For the summer that was going to be, for the unfairness of everything Oliver is going through, everything that is definitely not as it should be or as planned. For nothing going according to script. Today, if we had followed the "plan," we should have been driving to Kentucky to enjoy a few days sans kids: complete with golf, bourbon, and alone time. It's a time that is always special to us, and deviating from that felt... sad. But again, it's really more the whole of everything- occasionally, although mostly now we are in the thick of this battle and are somewhat numb to what we are dealing with- it hits.... man, this SUCKS that this kid has to go through this (it always sucks, but sometimes more overwhelmingly emotional about it than others). I had to check myself as this feeling came over me- the punch to the heart about everything- the unplanned, the cancer, the leaving my kids, the "what should have been", the unfairness, the feeling sorry for all of us.


Life is funny, because here we are, DESPITE our best plans and intentions. In the midst of THIS. The big smack on the ass that rearranged all of our thinking. And not just that, but our lives. FUNNY ENOUGH, we have ZERO control over anything in life. ZERO. What a logical statement that is, THAT WE ALL KNOW, but if you are like me, you fight that sentiment to the core. What do you mean I have no control? Ok, middle finger, YES I DO. Nope. I don't. We don't. YOU DON'T. We are all living testament to that statement. Justin is. Colleen is. I am. And Oliver, out of anyone, is. Rest assured that if any of us could have controlled any of this and changed course, even slightly, we would have done everything in our power to do so. The ONLY thing you have control over is how you respond to what life throws at you in the PRESENT MOMENT. Profound (and obvious), I know. As a numbers person that wants things to be black and white, and wants to control, well, everything, I can tell you that in no way, shape or form, would I have envisioned these past few weeks and these next few months as they are turning out to be. But you know what occurred to me on the plane as I left my kids 2,000 miles away and was slightly feeling sorry for all of us?


MAYBE IT'S BETTER.


Or not only that, maybe it's ENOUGH.


I had tattooed on me a while ago words that meant something to me. Enough. Grateful.


I have enough. I am enough. I do enough. It IS enough. I am grateful.


A reminder that I often am remiss to acknowledge and forget, and felt those words speak to me deep enough to have them permanently ingrained on my wrist. A constant reminder of what I need to be thinking and telling myself.

It didn't even come from this place of knowing Oliver had cancer. It came from a different time and place in my life WELL before cancer. I often struggled with feeling "enough." Beeing a good enough mother. Being a good enough wife. Being enough. Having enough. DOING enough. Living up and showing up to life and calling that GOOD ENOUGH. And then the second part of that, being grateful for everything that I can do, have done, do have, everything that I am.


All of this, this whole experience?


Exacerbates this sentiment, almost creepily. It makes me take pause even more now when I look down and at the relevance now. I took a step back, looked out that plane window, and thought well SHIT. No one could wish for this EVER, but look at WHAT it has brought. Right this second, it's not necessary to be sad and also Jenn, shut your stupid brain up: it is THIS MOMENT and it is THIS MOMENT. This moment I can choose to be grateful for what I am able to do. It's enough, and it's something even more. I get to be there for my family. We get to relish that despite the ugliness and shittiness of this whole situation, our family is more extended and closer than it has ever been, in a way we couldn't have created otherwise. My kids get to enjoy some alone time with grandparents that I would ultimately ruin by vetoing shit food and all their "fun" that is a treat with grandma and grandpa. I get to spend time with Oliver prior to round 2. I get to continue to know Colleen and I have heard I even get to meet some of her close friends. I get to be present for the other visitors who come through our door. I may even get to sneak in a bike ride and alone time with my husband.


There is so much to be grateful for.


Maybe sometimes things often go as planned and our lives line up in neat little boxes, perfectly according to that plan, but so often they don't. It's on us to be flexible and embrace the flow when they don't. Through this- the lesson (of many!) is-- what we can control is how we respond to that in the ONLY moment we can control: right this second. Even more relevant as all of us start to get anxious about round 2 starting soon. As Justin says: moment by moment. We will get through this. And through it all... we have each other. We are enough. We are grateful.


Phew. That was a lot of revelation for one plane ride.


Day 21 in pics:


Bennett and I cuddling in the am. He wanted to take selfies. Ok, kid! I look... tired.

 Meanwhile, back in Seattle: Oliver is still feeling good and everything is under control! No fever, minor nausea, but overall, not too bad (still a 2-3 out of 10).

My parents took the kids to a trampoline place in the morning, while I stayed behind to get a little bit of work done. Apparently the jumpy place was SO COOL according to the little guys, partly because they got "sticky socks!"

 Showing off the super cool sticky socks.

While they were gone, since I figured I would be on an airplane for a large chunk of the day, I decided to go for a little walk. I tried to take a couple of selfies to hopefully show how miserable walking in 95% humidity and 90 degrees is... but I don't think I adequately captured it. IT WAS HOT. BONUS! In all of my cancer reading lately, I have learned 1) everyone has cancer cells (it just is how an individual's body responds to them which determine if they develop 2) Sunshine is a natural medicine that helps eradicate cancer cells and 3) Saunas and heat therapy also eradicate them. SO, that walk: sunshine and sauna...I for SURE killed off some good cancer cells in that hour!

Uncle Jon showed up a little while later to take me to the airport. He also put together some ninja turtles for the boys. They were ENTRALLED.

Waving goodbye to the boys and grandma and grandpa (the boys in their ninja turtle headbands)!

While we were having ninja turtle fun, and I was making the trek to the airport with Jon, Oliver, Colleen, and Justin all took a walk down to the river in a sunshine break.

Today had a couple of visitors for Ollie and team as well: Jan (one of Colleen's good friends) and Katie (one of Oliver's best friends from high school).

Walk time after dinner! I got home from the airport as they were walking and drove up next to them.

All in all, a successful day. I am back in Seattle, grateful to be here. It is...quiet... without the kids. We have gotten more shots of #oliverstrong! Currently, we have a bunch to send out and deliver, but are waiting on the next shipment of 200 bracelets. Seeing this pictures of people wearing these warm all of our hearts, and truly do serve as a type of motivator to keep up the fight. #oliverstrong.

Day 20: June 26, 2019

I had an interesting conversation the other night with a friend who I don't really know all that well, but are connected through our kids. We somehow started talking about Oliver, as his diagnosis and his treatment right now are a common thread of my life and so it just seems to come up.... I almost throw up the awkward sentence without even thinking about it, oh yeah, and so my son has cancer. I should probably be more sensitive to the fact that it makes most people squirm, but I'm not and not because I am intending to make people feel weird but it's just SUCH a part of our lives right now, to  not say something would be like ignoring a giant piece of food smack in the middle of someone's forehead and not saying anything at all. The lines are just interwoven in to every part of our lives right now, for better or worse. In this case, luckily, my share wasn't awkward at all.  And the response that this person had to me and said to me resonated with me. She so eloquently said what we, as caregivers, have been feeling these past few weeks.


"I was with a friend through his cancer treatment 5 years ago so while I wasn't in the thick of it, my cancer cherry has been popped and I remember some of the realness of cancer treatment. I think one of the hardest things for me, as one of the people around the patient, was that I was also changed by my friend's journey, yet externally I seemed...the same, still? A sick person makes sense in a hospital or cuddled up in a quilt; I was a well person who LOOKED like I made sense at the grocery store, but I was someone who loved a sick person and the grocery store seemed INSANE to me. Life continued outside my body exactly the same, but inside I was in a completely new place. Like the couple in the movie Beetlejuice- they come home one day as ghosts, past the world they're still living in and what do you do? I guess you keep putting up that wallpaper in the attic? There was this mismatch between insides and outsides, that I remember made me feel like I was extremely alone when I was around other people.... I just wanted to share that with you because if you're feeling the same way, you're not alone."


Wow. Just wow. It took me two days to process that.


I couldn't agree more. And I think I have eluded to that already in this forum, but probably have not expressed quite so perfectly. What is so weird for all of us, as caregivers, is we are FINE. Externally, we are fine. But like this friend said, there is a mismatch between our insides and outsides. We are forever changed, but externally NOTHING has changed.


There are some people who have asked how they can also help care for Oliver. My .02 on that is that is that none of us really know HOW. We just DO. If you love someone, you care for them by loving them. By doing what you know needs to be done. By holding the puke waste basket. By not only being in around in the best of times.  By not letting your own needs and fears get in the way. By not being selfish, but by being selfless. Some people just don't have that quality, and I expect that they never will. By realizing, 100%, maybe even 110% that at the end of the day, nothing will ever be as it was before. This is something that will change all of us that are in the thick of it, as well as Oliver, forever. While the outcome is hopefully positive, he will forever be subjected to being poked and prodded and having scans, and anxiously awaiting the results of those scans. This will be his life going forward.  There will come a time, I'm sure, where we won't be regurgitating our current state: "going through cancer treatment" but it will be ever present, because it's a life change. The incarnation of the mismatch of what this does internally to what everyone sees externally.


I think why I am saying all of that, is because I had a perfectly "normal" day with the kids back in Kansas City. AND IT WAS SO WEIRD. It just feels unsettling to go from hospitals last week to playing with the kids this week. And I love it-today was a blast, don't get me wrong. It just feels.... weird.


In KC today, we took the kids to Worlds of Fun/Oceans of Fun for the first time. I think they were fans! Starting off the morning trying on their floaties for the water park later in the day:

Owen calls this the Jennifer face... I made the comment a few weeks ago when he gave me that face that I used to be told that was the Jennifer face. He hasn't let it go.

Walking in to the park!

Yahoo! Fun times!

 First ride of the day! Bennett was really excited to ride the horse.

We then found our way over to the children's area. We got lucky on a slightly cooler/overcast day, though the sun was intermittently out. And even better, it wasn't super crowded.

There was also a little petting area, which the kids LOVED.

On a little basket ride where if you turned a dial in the middle, it spun the basket. Owen almost made grandpa puke in theirs. Haha.

Their favorite rides (they said) were the two water rides we went on- a log flume type of thing and a river rafting one. They loved getting wet. I tried in vain to get Owen to go on a big roller coaster with me, but no dice. Maybe next year.

We spent several hours at Worlds of fun and then made our way on to Oceans of fun, but first: lunch stop!

I got caught up midday to everything going on at home. Oliver was doing great, no fever, eating, and still feeling like a 3 out of 10 (or 7)… Lexi visited in the morning and they had some family (Colleen's) visit in the afternoon. Hooray for another low key day for Oliver. I truly think these are the weeks that are going to fuel the chemo weeks.

Back in Missouri, we played at Oceans of fun for the afternoon. I think the kids could have spent all day there in the water. They loved the slides and the wave pool. Next up when I get back to Seattle: swim lessons!

Proof that I even joined in. Mostly I just didn't want the kids to drown so was ready to go full on lifeguard mode if I had to. Ha!

Towards the end, they got to be a little tired and cranky...long day! But once they got a little food (and a car nap for B, they were ready to go again!)

Back at home... ready and playing their hearts out again. They truly do not stop.

Yesterday evening, Nick joined Oliver again. It is so good that Nick is always such a good friend to Oliver, and especially now. He doesn't live super close but he's driven up the last few days to hang with him. We should all be so lucky to have a friendship like Nick and Oliver.

Apparently Nick even went on a walk with Oliver! I heard there were two walks yesterday again, too!

And of course, Justin and Colleen made dinner for everyone. I just received their food porn pictures.

Oliver's hair continued to fall out yesterday. As Colleen said, he kind of reminds me of a meth addict that keeps picking at himself. I guess even his arm hairs are falling out, which makes sense, but just did not even occur to me that those would also fall out. The things that you find out that you just never would have thought about before...

He's got a patchy bald thing going on top of his head right now.

Colleen sent me this picture-- a scrapbook that her mom made for Oliver. This picture is so sweet, and it is so cute that she refers to her grandson as a Tiger (and you have to love the baby Ollie in the Tiger costume!)

Again, a pretty low key day. A day that will fuel next week as we start our 5 day block on Monday, which are again, the 8 hours of chemo all day every day for 5 days straight. Grueling is the word that comes to mind. The visitors, relaxation, fun, and "normalcy" of this week are going to get us through the cycles on. This saying exemplifies this to a tee: