I have locked myself in my room. I have one million things to do and by “one million,” I mean to say that I have four things that I actually need to do, and 999,996 other things that feel like a great way to occupy myself while I run around my house screaming, “I have no time for all this shit!!!”
The four things I need to do and why I just can’t deal:
1.) Get a new nanny. Pardon while I sob just typing those few words. This topic is fraught for two main reasons, first being that our current nanny is the be all, end all of nannies. She is everything that I could need from the role and the thought of her leaving us for grad school is so offensive I can’t even feel it. But it turns out, despite me telling her I will pay her $10,000/hour to stay, she is leaving at the end of the month. I have spent many hours pondering if I can live with the guilt of shaming her into staying, and I don’t think I can, but damn if I haven’t thought about it. On repeat. The second reason the search for her replacement is difficult is because it means confronting and navigating a future that is a slurry of big unknowns. I either need a full-time, 8am-5pm, responsible and always available, nanny while portions of us move back to Philly, or alternatively I just need a care-free college girl who wants 10 hours here or there to occupy a three-year old and make sure the older kids don’t bleed out so I can write some blog posts.
Turns out the cancer path illuminates via slow drip.
This is something that I don’t think I can ever fully explain to those who support us, nor prepare someone for. Even in the opportune moments when you have an actual “roadmap,” you have only a fraction of a clue of what’s ahead. But when the roadmap turns to, “Well, let’s see how labs look in a month,” the slow drip becomes something that’s too painful to put words to. So I decline calls and let texts stack-up. One month, 28 more days for everyone to ask, “How are things?” and one month, 28 more days for me to answer with something simple when really I oscillate daily between a summer with a care-free nanny and planning my eldest’s funeral.
It’s dark, guys. It’s dark. So I just avoid finding a new nanny, because avoiding planning for the future helps it to not come, right?
This actually brings to mind a therapy session mid-March, pre-Philly, when I told my therapist that I couldn’t start packing because it was too overwhelming to consider what was in front of me. So I was 72-hours out from leaving for six-weeks and hadn’t done a single thing. She suggested that I choose one thing to do and just do that. Just one thing. So I went in to Target and bought a travel shampoo and a bar of soap. And it’s not to say that it solved everything, but sometimes we don’t need to solve everything, we just need to move toward something, anything.
Wow, I’m doing the same thing with a nanny as I did with packing. This is why I write! It’s not for you people, it’s for me. For my mind, for my psyche, for my survival. There is nothing new under the sun, and far less new under the heaps of anxiety.
Ok, so the first item on my to-do list is to find a new nanny and I don’t want to. But I am going to type out this melodrama and then set a timer for 30 minutes and commit myself to care.com.
Image credit: @Justgirlproject
Ok, quick pivot. I am not going to keep listing the things I need to get done. I will tell you the list includes what is for dinner and exercise, but the details for which are basic and you can all connect the dots that you see fit. Instead, I am going to give you a quick health update. That’s what you all really want right?
Give the people what they want.
Last Friday Jude came down with an earache and 102.5deg fever. It was out of nowhere and unexpected. We haven’t dealt with a lot of earaches, the only other experience being once with Beaudin at 12months old. Luckily we had all the remedies on hand (mullein garlic oil, Wish Garden Ear Be Well, and Lavender essential oil.) The next day, Beau and Selah both had very mild fevers of 99 deg. Because Beaudin is still on central line fever protocol, we have to take fevers very seriously. High fevers were also Beau’s singular symptom at diagnosis so no high-fever passes without a hefty dose of PTSD for Joshua and I. Over the weekend everyone was mildly fevering and had runny noses. By Monday, everyone seemed well enough, but the boys couldn’t return to school without a COVID negative test. So Tuesday, we headed to our local Walgreen’s for a “rapid” test.
A friend of mine commented, “I hope the experience administering your children’s test was as awkward and hilarious as mine.”
Naturally, I didn’t reply. Gah. I hate being so fucking dark, but turns out when you are on this side of the pediatric cancer divide, there is nothing left to be hilarious about administering medical procedures to your kids while they sob.
To be clear, I love this friend. (Hi, Hannah, stop worrying that I’ve called you out.) She is one of my top-five; the person I talk to most often. And still, she wrote a simple text and I felt a chasm of misunderstanding open between us and my angst swallowed me right up. This says far less about her than it does about me which is that, in stress, I wing 4. If you know, you know.
I still ask Beau if he remembers the room with the pink orca. I just wonder when he will remember. The tears, the screaming. I wonder when I will forget.
I wish I could just laugh about a stupid COVID test that is truly insane. Handed through the bank-teller- like drawer by the pharmacist and administered by me in a mini-van with three kids. I mean, what is this pandemic life? It’s full of complete and utter ridiculousness, if you can push aside the trauma to laugh about it.
Ok, so there we are, self-administered COIVD tests in a mini-van behind us. The results are in fact anything, but “rapid” and after 48-hours we find out the results are lost and must be re-done. GAHHHHHHH! At this point, the kids will have been out of school for the mandatory “10-day post initial symptom” protocol so instead of another test, we just decide to wait it out.
Selah never showed many symptoms aside from a mild fever for one day. So, naturally, I spent a couple hours wondering when she would end up with Leukemia. You see, Beau was never sick growing-up. Never. He was hardy. I could list on one hand the number of times he was sick. And for years I thought that was a good thing. But turns out, having an under-active immune systems or an over-active immune system dumps you into the same problem: a dysregulated immune system. I have read a couple articles (peer reviewed medical journals, not goggle, okthanksbye.) that detail children how who have very few immune activating events (aka, healthy kids) share the same risk factors for Leukemia as kids who have overactive, weakened immune systems (aka, chronically sick kids). So while Selah remained symptom-free, I pondered if this was just a foretelling of our future.
There are people who have multiple children diagnosed with Leukemia, how long until I was one of them. Gah, it’s fun being me.
Wednesday I resigned that the kids were never going back to school and we went on a hike in Boulder. It was lovely. Beau complained of the aching in his legs and I did my best to replace thoughts of, “he is relapsing,” with “he hasn’t hiked in 3 months, this is normal!” Jude, per the usual, sprinted up the inclines and cried out from the top about why we were taking so long. Really helpful. Luckily there were some trail runners running (fast) laps up and down the trail and Jude waited for us while adoring these athletes.
Thursday Beaudin had an appointment for IV Vitamin C. The warrants a separate post, but there we were. Thursday night Beau spiked a fever, just below the threshold for heading directly to the hospital. And of course, because this is how things happen, it was 9pm. It is hard to think straight in the dark, even more difficulut on a day you’ve also stepped outside hospital protocol to seek supportive care and let a (trained) stranger access your child’s port. OH THE TIMING! So, we set alarms to check-in on him every two hours to see if his fever held, or pushed over the threshold.
There are lots of words to write about this 12-hour stretch, but the long and short is that we were up all night, and aged approximately 3 years. His fever never rose.
Friday morning, everyone was on the up and up! Fever-free!
Meemaw picked-up Selah for ballet class and I went on a walk by myself. Footloose and fancy free!!!!!! Until 10am, when my mom called to let me know that Selah had puked during ballet class. A masked three-year old puking in a tutu. Lovely.
Selah spent the rest of the day in bed, puking on and off, asking when she’d feel better and if she needed to go to Philadelphia.
This is a picture of Selah who refused to be sat down for the next 24-hours and Joshua unable to keep his eyes open, for even a picture!, because we have both lived without sleep for longer than humanly possible.
Because there is no rest for the weary, we also had to call Beau’s team to check-in about his persistent fever. Though it was hovering below the threshold to take him immediately to the hospital (101.3deg), it was now closing in on 24-hours which gets even a mild-fever to the hospital. We decided with his team to get his labs done before nightfall because all decisions are easier to make in the light of day. Josh took Beau to the hospital, I laid in bed with the puking three-year old, and Jude lived his best life of unlimited screen time.
Beau’s labs came back high enough to keep us out of the hospital, but low enough to make Joshua and I feel generally shitty. All of his labs have been trending down since April which is: normal for CarT, normal for relapse, normal for a virus. Some of his labs, like his platelets were lower than they have been since his lowest point of treatment. It’s hard to see labs so low and not worry.
Luckily, I have dear cancer mom friends who can talk me out of this worry by reminding me that virus’ can chew threw platelets, and that these low labs are good if perhaps his CarT is working. It’s helpful to have voices of reason just a text away.
It’s also helpful when one of those friends sends a care package that arrives during this insane week and I am able to sip Cold Buster tea from an aptly gifted mug.
By Friday night Selah had stopped expelling, but still felt crappy and ended-up spiking a high fever from 12midnight to 5am, crying and aching, while I rubbed her back. She was hotter than I’ve ever felt her and I wondered back to how hot Beau felt when his Leukemic fever was 105deg for days on end and our doctor assured us it was viral. I wondered if our pediatrician ever laid in bed and worried that she missed it, like I laid in bed and worried that I ever believed her. I knew it wasn’t viral. I knew it. I considered that this was God’s way of telling me that Selah would not in fact be getting Leukemia and how odd it was for Him to give such a sign through her suffering. I then decided that just like medical decisions, theories on faith are also best decided in the light of day and tried to stop thinking about it.
At 6am, I told Josh I had to tap out, and laid down with the worst headache of my life. My whole head felt like it was being pulled apart and the only way to find any relief was to push my palms into my eye sockets as hard as I could and lay my weighted blanket directly a top my head. Josh gave me a very large dose of Benadryl and I slept for 12 hours. Yes, all-day. I got out of bed for dinner, then went back to bed. Jude came to my bed before he went to sleep and worked hard to hold back tears as he cried,
“Mom, I am just scared your head hurts…I just don’t want you to be sick.”
As I assured him I would be all better come morning, he cried about clearly much more than my headache. I rubber his back and reminded us both, “It’s ok, we are all going to be ok…”
Sunday, everyone was well!! And by “well” I mean that no one fevered, vomited, or had a weighted blanket on their face.
Today, everyone went to school. And I locked myself in my room with no intention except a quick blog post. (HA!) and finding a nanny.
Ok. Seriously, this has gone on long enough. It’s almost 11am and now I have less time than ever to require 30 minutes of attention be given to care.com. If you are still here reading, wow.