Day 23: June 29, 2019

We are starting to feel like we are in a new normal. A "remission" of sorts, within the cancer treatment. The days ebb and flow, and feel... normal. Minus the fact that the little boys aren't here. And minus the fact that we still have those little reminders that cancer is ever present: hair falling out, discussions of treatment starting soon, temperature reads every hour. And minus the fact that we aren't kidding anyone, least of all, ourselves, that this is all still very real and very much being in the middle of cancer treatment.


While it's a nice break and feels like something "normal" (whatever that even really is), it's still a bit (a lot) restricting. Cancer does have the power to take some freedoms away, freedoms that we all take for granted. I was thinking about that the other day as I was driving to the airport and then flying. It's a luxury that a cancer patient doesn't have- to travel. Among other things in the same vein. As a 22 year old college kid used to doing whatever, it's still, at times, unfair to have your world halted in this way.  Oliver can't go just anywhere. He's not in school right now, he's not working. He has to be careful with who he's around because his immune system is so compromised. He pretty much always has to wear a mask to protect himself. Even AFTER treatments, he is planning to be in our care at our house for possibly even up to a year. The other day, after hearing that the side effects of chemo can be as rough as the actual treatment and can take up to a year to work out, he asked us the other day if we were ok with him being here possibly up to a year post chemo. 


Some people are able to carry on more "normal" lives during chemo and treatment for cancer. These are the people who go in for infusions once every couple of weeks for a period of time, and don't have aggressive 21 day cycles with just a few days "off." Unfortunately, this is not Oliver's story and he does have the aggressive treatments, but we are happy for the times where it does feel like a rhythm outside of hospital walls.


We brace each day for any unknown. Will his tummy feel ok? Will his fever spike? And we are all bracing for what is to come here in the next couple of days with the start of round 2. We know there will be changes in the dosage. We know it will be more intense. But we don't know how that will impact him, or us as his caregivers. We at LEAST know now that the meds that they prescribed to help him with the side effects, did no such thing and made the side effects WORSE. So at least we have learned there what does not work. But how will more chemo impact him, and how will we be prepared to help him through it? We just don't know right now.  Last night Oliver came in the door after dropping a friend off, and just blurted out: "Jenn, when are you flying back to get the kids? Are you going to be here on Monday when round 2 starts? I'd really like you to be here if you can since there's so much changing."


I paused. And almost cried. And both Justin said at the same time: "That's all she/I needed to hear."


While Oliver is by far the one most impacted by all of this, all of our worlds have been shifted and rotated as well. The way our work looks, the way our summer looks, the way our daily lives look- all different than planned or as they were in the before life. But that said, I don't think any one of us would change anything. I think we all feel more empowered that we are ABLE to be here for Oliver. And upon asking, we will drop anything and everything we can to support him through this.


OG joked the other day in response to something (that I can't recall) that he is "so excited to start chemo again." We all laughed but I think deep down, we are ready to get on with it. As we get closer and closer to round 2, the anxiety of the "what ifs" starts to build. We can't go under it, we can't go around it, we have to go through it. And through it is just what we plan to do, with all guns blazing.


Day 23: started off with a bit of a walk for me to walk off the soreness of the gym from the day before. It was a much cooler walk than the one a few days before in Kansas City.

I got back and some of Colleen's friends, and Oliver's friend, had arrived from east of the mountains to have brunch and hang out for the day. It was so lovely and the weather was perfect!

With hair falling out and the sun shining, Oliver was getting some heat on his head. Baby hat to the rescue!

A little walk around the neighborhood after brunch.

A picture of Colleen and her girlfriends. It was so awesome to meet them and spend some time with them.

 And Oliver's friend was such an amazing young lady as well. I guess they have been friends since elementary school!

Back in Kansas City, the boys were having a blast with grandma and grandpa (duh). They spent the morning at the trampoline park, and then the afternoon at some sort of sports place (didn't really understand the details on that). The night cap was another trip to the water park! As my dad said, he and my mom are anxiously awaiting the return of the varsity team to take over for these monkeys. We miss them like crazy, but know how much work they are. I think it also is hard when you are NOT used to the routine of having high energy kiddos. I actually feel really bad about possibly changing my flight for a day (to fly back Tuesday so I can be there on Monday to meet with the doctor/round 2). I don't want my parents to feel like I'm putting the kids all on them, and I don't want the kids to feel slighted either. I keep having to remind myself that it's one day. They are in good hands. This is obviously an extenuating circumstance. And it's really important that we are there for Oliver to meet with the doctor and get our bearings for round 2. But with all of this, man you just feel pulled.

Yesterday afternoon, we attempted another bike ride. I KNOW. After the day before.... what the hell was I thinking? We left from the house and attempted grand ridge, which apparently (as Justin tells me) is a cat 1 mountain bike race. We just kept going and what do you know? With DOING IT MORE, I was actually not half bad. We climbed and climbed and climbed and Justin said, dang you are actually a good climber. Once I get comfortable with the freaking obstacle course (IE: rocks and roots), I do ok. He kept saying, do you want to keep going? Sure? Why not? No kids at home, and it's beautiful out and what do you know, I'm actually having fun!? We got to the top of the ridge and were about an hour in and he said, so do you want to turn around or keep going- we are about 1/2 way. I guess we'll keep going! At the end of the day, I DID IT ALL! It was about a 20 mile ride, which is not that big of a deal, but I did the mountain bike stuff. Amazing!

This was the point where we were in the middle of nowhere and Justin said to me "we are able half way." I died a little bit, and then kept chugging along.

We have had more and more bracelet photos coming in. I can't even tell you how awesome it is to get these! It warms our hearts, it warms Oliver's heart and it is a show of solidarity for everyone supporting Oliver right now. #oliverstrong.

Day 22: June 28, 2019

The world has a funny way of teaching you lessons of things that both you didn't think you needed to learn, and also things you know you need to be better at but resist.


Case in point: yesterday and this sentence: IT IS SO HARD FOR ME TO ACCEPT HELP.


First lesson: mountain bike riding with Justin yesterday. What I said, and how I acted: it sucked. It was brutal. I got passed by a goddamn RUNNER. I was ungraceful and all over the place. I ate shit. A lot. I was a stubborn ass that reused to accept his help, because I HAD THIS. I could do it on my own. I did this for about 45 minutes. There were a lot of 4 letter words (sorry to the couple that heard a symphony as I came flying out of an opening in the trail and scarred them for life with the amount of f-bombs generated).  Towards the end of the ride, I realized (and DON'T TELL MY HUSBAND), it would probably behoove me to accept his help. He said stand up, straight legs. Being as I was behind him, because why would I let him watch me and help me, I started to mimic what he was doing and WHAT DO YOU KNOW. It worked. Huh. Well that's fascinating.


And you know what? My accepting the help and advice, the last 30 minutes of the ride were enjoyable. I was able to climb and descend much better, and actually it seemed....easier. I was able to enjoy what we were doing, and how nice the day was.


Second lesson: the countless people offering to help with Oliver right now. Bringing food. Ordering bracelets. Giving gift cards. Offering to come clean. Playing with and watching the kids. Giving and giving and giving. I am not going to lie, this has been very uncomfortable. Especially to those of us that are NOT the cancer patient and are externally FINE. We are FINE. I am still working (albeit remotely), although Justin/Colleen/Oliver are obviously not really working right now (which is to say, financially we are ok.... although bracing for the medical bill impact... HELLO!) We are able to make meals. We are able to clean. We are able to care for the kids. Kind of like in the above- I am ABLE to ride a bike. But you know what? When I just let go of my ego and my stupid stubborn ass-ness (that's a word!), it makes the effort EASIER. Similarly, when we all let go of our ego and allow people that WANT to offer help and assistance to us right now, it makes our life so much easier. We are able to refocus more on Oliver and his care, and enjoying the good moments with him (and it takes some of the burden in the bad moments).


It has been so hard, though, as someone who has a bit of a chip and wants to prove I don't need anything or anyone. Like I said, stubborn ass-ness.


But the world shoved in my face: Yes, you do need help. Allow it. Embrace it. You don't owe anything in return, except to offer the same to anyone else down the road who may be in the same position. People are giving to us what we need, and don't even know what we need. The generosity has been so completely profound and humbling. Like I have said before, you know your tribe, and then in certain moments of clarity, you really KNOW your tribe. It's been a lesson of learning to accept help, to embrace help, to not feel like I have to repay anyone, and to expand my "family" of sorts to all of these amazing people that are so graciously giving to us. Who know us, and our needs before we can even see them.


I guess all of this to say- like the mountain bike ride- it makes it easier when we accept the help. It makes the ride flow. It makes it seamless. It allows us to enjoy the bumps more so than if we were trying to do so on our own. The gratitude we have for everyone who has stepped in to reach out a hand, in whatever way, has truly been eye opening and another life changing lesson in this whole experience.


We started off the day at 4:30am yesterday, and I did something that I haven't done in years by joining Justin as he went to work at the gym in Bellevue! When Justin and I met, it was at the gym. I worked in the same building, and before we were even dating, we were friends but we would see who beat each other to the building first (me going to the office, him going to work at the gym). I'm not sure who ultimately won those races, although I tend to think probably me (ha!), but needless to say, it's been a LONG time since I have been anywhere except for home at 6am. Without kids, I figured, why not?

It was fun to see some of Justin's clients that I haven't seen in a really long time, before we had a gym at our house and when I went to Bellevue more frequently to work out. Proof that I made it here! It's been probably 8 months since I last was at the gym in Bellevue. Also, another example of needing Justin's assistance: I am SO MUCH MORE SORE when he trains me than when I do it alone. That's a good thing.

Back at home, Oliver was up and ready to tackle the day. The night prior, his fever spike up to over 99 and so we were a little worried we might be heading back to the ER (if it is over 100.4 for an hour or if it reaches 100.9 at all, that is the ticket in). Everyone said, "welcome home, Jenn" and braced for it....but, luckily, it came right back down within a few hours. Phew, crisis averted!

Boys in Kansas City with grandma and grandpa, enjoying some down time with tablets. They had a good night and apparently didn't wake anyone up!

First up for them on the agenda: LEGOLAND!

Oliver and Colleen took advantage of another "feeling good" day for Oliver- the break between treatments, and headed to see Rocketman. I know that this was really good for him to get out of the house and do some "normal" stuff, versus being stuck at the house like a sick patient. They also headed to Costco!

While they were at Costco, we were on our bike ride!

After we got back from our ride, we had some friends drop by 200 more bracelets (yes!). Forgot to take a picture, but was so nice to visit with them! And then, another friend, Collette (Owen's original nanny), brought by a big bucket "energy kit" of homemade chicken soup for the big guy. As I said, amazing friends we have.... a thank you doesn't quite cover it.

Lexi came over around dinner, and after dinner we all got out for a walk. Pictured here: Oliver modeling his new crocs (thanks Nick and Dawit!)

We had challenged Oliver to make it around the entire neighborhood loop by Monday. Must have been something in the air last night, as we did the whole loop last night- overachiever! This was about 3-4x as far as he's gone the last few days, with a giant climb in there.

The kids back in Kansas City were wrapping up their day at the water park, where they had loads of fun! I mean, how could you not- kids with grandparents and swimming in the summer. Good memories being made there!

 The countdown to round 2 is on, but I think we are all feeling refueled and powered up by this super good streak. Oliver has gained some serious strength this week in how he's walking (remember when our goal was just to even get him on the deck or to walk the length of the house) and how he's eating. We are rocking straight towards round 2 and ready to just continue the fight. Again- thank you to our team of people who have given to us without hesitation--for bringing Oliver (and us) food, for sending gift cards, for the notes and calls of support and love, for watching our kids (especially to grandma and grandpa right now!), for the amazing bracelets, for the presents for Oliver, for coming to see us and Oliver-- for knowing what we need, even when we don't. Your love and support and endless giving means the world. #oliverstrong.