Friday, June 21, 2019

Day 14: June 20, 2019

It's been two weeks. Two weeks since we all first gathered as a big family. In some ways, it was like we were just being "born." Unsure of where the hell we were headed, a big ball of UNKNOWN creating anxiety, fear, and lots of "what ifs." We had dinner at our house and as we humans do, we tried to plan for what the next 2.5 months would hold with the BIG DAY kicking off the chemo the following day, though all of us trying to ignore the fact of what that meant exactly in terms of poison injections in to Oliver to cure him. We discussed plans, we were prepared as ever! We had broth made, we had tea made, we had the itinerary. We were READY!


I remember three things vividly about that night, which now seems like two million years ago: 1) Justin breaking down at the talk of the drugs that would be injected in to Oliver's body, and holding on to Oliver, wishing more than anything that he could give himself to take this from his son. NO ONE wanted to talk about the logistics of THAT (meaning the logistics of the drugs)-- No one wants to think about how the drugs that heal, hurt. And to think about it, as a parent, just utterly breaks your heart and it came out in the raw emotion of dad that night 2) Colleen that night saying (and I paraphrase) that there will be times throughout this process where one of us may do things that hurt another one of us, but at the end of the day, we are ALL in this together, and we are doing everything in love FOR OLIVER. 3)  A conversation that ensued around the table about the life changing nature of this all. That while we had no idea what we would experience, it would change our lives.


It is interesting being two weeks from that night to look back at ALL we have learned about this process. Anyone who is reading this humble blog is probably completely overloaded from the mass amount of information I put in it, that we have been absorbing and learning the last two weeks. It is truly a before and after, and we will never be the same.


In that vein, we evolved and learned again yesterday in the roller coaster that is this ride.


After such a stellar night on day 13, around 1am, Colleen kissed Oliver on the head and thought he felt warm. Took temperature: 100.3. Cue: oh shit. An hour later: Still 100. An hour later: still 100.


They got some choppy sleep, with the saving grace being that Oliver still FELT awesome. I heard them around 5am and got up and did an assessment of Oliver myself. Colleen had JUST given him Tylenol as his fever still had  not gone down and had actually climbed up to 102. When I got in there at 5, it was 101.5. Not good. We knew enough that fever = bad. So, we called SCCA and the guy we talked to needed some serious bedside manner: "uh, based on the counts we received from the ER yesterday you need to get back to the ER ASAP." Ok, not calming!


So, at 6, I woke Justin up and the scramble to get to the ER began. We were off to Seattle this time to the UW ER as chemo was scheduled for 6/21 (the following day), and they are associated with SCCA, so could administer chemo in the hospital if needed.


Justin and Colleen took off with Oliver to the ER in Seattle while I stayed behind to get the kids off. Oliver putting on his fancy clothes:



Everyone was masked. Because Oliver had a fever for several hours over 100 degrees, it was about 100% certain it was neutropenic fever, which is apparently really common in cancer patients and means that essentially anything and everything could get him sick. The doctor said that even Oliver's own toothbrush could get him sick, and some cancer patients have to use a new toothbrush every day. Something as simple as that, could be fatal. That is INSANE. Again to what we would not have known or expected two weeks ago-- the frequent ER trips, and the fevers that are common in chemo/cancer patients that can be life threatening. Oh, the things we have learned!


Poor mama had had a long night and so crashed out in the ER (sorry Colleen, we have all had vulnerable pictures on here...the faces of cancer!)


Oliver getting settled in to the ER.


While everyone else was at the ER, I had an appointment to take Fred (the dog) to the vet. I noticed a quarter sized growth on his neck a while back, that didn't seem to be going away.


The boys wanted to come with me to the vet. PSA: this is NOT A GOOD IDEA.





I then took the boys to Grace's where they were PUMPED to spend the day! I mean... Mario cart and trampolines... #winning.


Meanwhile, Oliver was posing for us!


They had run more tests upon entry to the ER, and found that his WBC (white blood cell) count was at a 7. For comparison sake, "low" is 500. Normal people are 2000. So he was at essentially zero. And with a fever meant that he definitely had neutropenic fever. As such, plan was to hold him and admit him to the hospital for at least 48 hours, and then pump him full of antibiotics.


Mostly the ER was just a lot of sitting around, and waiting to be admitted to the hospital (waiting for a bed to open). In the inter-city ER, there was a lot of trauma and interesting people, apparently. Wasn't quite like the ER we visited close by our house. After I picked the kids up at 3pm, we headed over to Seattle to see Oliver and take him a little surprise that Grace and family had gotten made for him (#oliverstrong bracelets!) The ER room was tiny and little boys want to touch everything and promptly stick  their hands in their mouths, so we took them to explore UW a bit upon arrival.
















Another cool thing about all of this is that they are getting to see parts of the city that they never would have seen before, so again, a positive in a slew of not so positives.


At around 5pm, we got back to the hospital with Bennett complaining that his tummy hurt pretty bad. I was supremely worried he was going to blow chunks everywhere based on how he was acting (and I think Justin was too). So we promptly left and each took a kid (thinking that would help with carpool- it didn't). We also didn't want Bennett around Oliver if he did have some sort o a bug. TURNS OUT he ate like crap at Grace's (a donut and chips...) so he was hungry. He took a poo and ate ten pounds of dinner and was a different kid. GO FIGURE (but at least the better alternative). Meanwhile, at 5pm, Oliver and crew finally got a room! (Nick was visiting too).


Later in the evening, Oliver called room service AKA: the hospital cafeteria to order food.



The four of us were home for the evening, and it just felt... weird. Unsettling. Both Justin and I commented on this. Not like it would make sense for all three of us to spend the night in the hospital, but you just feel like you are DOING something if you are there, and if you aren't, you feel useless. However, that said, it was probably good for the boys to have both of us for the evening with a little bit of "normalcy." Bennett picked me a bunch of flowers... sweetheart that he is.


And Owen/dad/I had some pretty epic games of basketball.


Bennett also made a mud hole to which he promptly decided to put on his "race clothes" and ride his bike through.


Later in the evening, both kids took baths and did their hair to show Oliver next time we saw him.



We heard from Colleen that she and Oliver were all settled in to their room, and had the thought that Oliver would probably crash hard for the night after being awake all day. Of course, dinner first! SO good to see him eating.






The present that the boys and I took Oliver:





And with that, we enter in to the LAST day of cycle one, which is today (June 21), day 15. I read a book to the kids called the Invisible String which is basically about how we all have invisible strings connecting all of our hearts together, expanding to the whole world, so that no one is ever alone (a book that helps kids if they get scared and their parents or loved ones aren't right beside them). These bracelets are a tangible "invisible string." They show our unification of Oliver and let him know that he is not in this alone... we are going to fill this tiny part of our world with his favorite color, sky blue, and the fight against this awful disease. #oliverstrong


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