Its been a busy couple of weeks in the Larrabee household and by busy I mean normal, and by normal I mean we survived our first seasonal illness. Last night was the first night that all parties have slept straight through from bedtime to morning, and let me just take a moment to reiterate that sleep deprivation would be the easiest and quickest way to get any secret out of me. I think there is a general consensus that sleep deprivation is hard for humans, but if there is a subset of humans that have a significant and profound decrease in mental health after 2 or 3 consecutive nights of disturbed sleep, count me as one of them.
Josh and I were laying in bed the other night, after a particularly long and tiring bedtime routine filled with tears and mucus and way-to-long books, and wrestling and coughing, and wondered to each other if we would ever NOT be tired. It’s a really productive thing to worry about exhausted, late at night, I promise. Sometimes I find myself wondering, did we just have too many kids to ever be rested again? And although I would be hard pressed to figure out exactly which child I could ever live without, I do wonder if by welcoming all of them, we exchanged, without knowing it, the feeling of being rested. Dark musings on the end of a sleep deprived, illness filled week. Are any of you readers with multiple young kids not tired? And if so, what’s your secret?
On Friday night Josh was feeling uneasy about Beau’s complaints of leg pain. He had been running hard during some cul-de-sac baseball and finally said his legs hurt too bad to continue on. The trouble is that Leukemia (or in our case, what would be a relapse) can present with leg pain, but the chemo’s he is currently on can also have leg pain as a side effect. So you hear leg pain and you spend the rest of the night pulling yourself out of the relapse spiral, but you’re pulling yourself out of that spiral from the banks of, “the chemo my kid takes is wrecking his body,” which is also shaky ground. It’s a crapshoot.
So, Josh was feeling angsty about Beau’s complaints and suggested we go get local labs run. It cost us $43 and 30 minutes of times and can give us a close and pretty effective look at how Beau is doing. My initial reaction was to be annoyed with Josh- I felt like he was overthinking this and giving-in to the fear of relapse. And I have been perfectly successful recently in not worrying constantly about relapse and Josh’s concern was cramping my vibe. The nerve! But if I have learned anything from being married while your child has cancer- it’s that the best choice is almost always to support your spouses hair-brained concerns because inevitably your own hair-brained concerns will surface soon enough, and you’ll want them supported. So, 7pm on a Friday, Beau and I headed off to the hospital.
The great blessing of the hospital where we get our local labs is that we have befriended the phlebotomist. She is a grandma-aged lady and from day one has taken to Beau, and he to her. We have actually hung out outside of the lab, getting coffee and going to a park with the kids, and so luckily, I have her cell phone. I texted her to ask if she knew the lab hours. Well, not only did she know them (they are open 24/7), but she was actually working. This was a little gift to Beau who was straight pissed that we were going to the hospital to be poked, unannounced.
When Beau has his blood drawn, they prep the draw area with a heat pack. I am not sure he always needs it, but he is a creature of habit and he knows EXACTLY the way a blood draw should be done, and that involves a purple heat pack. Anyway, on this occasion when nurse Deb removed the heat pack to prepare the site for the draw, we saw, most suddenly, his whole hand covered in red dots.
And then it all made sense. The kind of sense that makes you marvel at how quickly the brain can process information that before that exact moment was distinctly disconnected. The email from Selah’s school about exposure to Hand Foot Mouth (HFM), Beau’s complaints that the tomato soup from dinner burned his throat….That’s why we are here, bc he has HFM. Oh crap, what does that mean to him? Floor 7 inpatient here we come?
“Wait, do you have a thermometer in here?” I asked Deb.
Sure enough, 100.3deg. A fever…No!
“Beau, open your mouth.”
Sure enough, canker sores, everywhere.
I pulled up his sleeves and red spots covered his hands and extended up his arms. I pulled off his socks: the same. I started to chuckle. ‘How is this happening!’ I laughed to myself. Then a text pinged through from a close friend and classmate of Beau’s, “Do you think this is HFM?” followed by a picture of her son’s HFM covered hands. Oh Lord, it’s here.
Luckily, by getting his blood drawn that night we were able to be sure that his ANC and white blood cell count (WBC) were at a level to battle off Hand Foot Mouth without needing to be inpatient, phew! Normally, Beau’s blood levels will not be as high, but since he just started maintenance chemo, he is not in the sweet spot yet. Or maybe, he is in exactly the sweet spot- to battle HFM. His ANC is 4,000. Perfect for HFM. Not perfect for maintenance treatment when they try to keep it between 500-1500, but perfect for now. They do not adjust up the chemo, to bring down the ANC, for the first 3 months, so eventually we will be there, but for now, we are riding high.
And thank goodness we had gone in when we did. If we had not gone, and then seen his pocked hands later that night at home, we would have had to head in anyway, so in fact, the trip to the lab was exactly necessary. For a different motivation, but necessary nonetheless.
Our team at Children’s felt comfortable to let Beau ride at home and check back in the morning, baring an increase in temperature. Luckily, the next morning his slight fever had broke and we were back in the 97 degree’s, where we love to be.
Hand Foot Mouth proceeded to run it’s course through our household and was, generally, not the worst thing that’s ever happened. And by that, I mean, it was terrible. There was lots of weeping and sleep deprivation and a lack of hydration, and temperature taking and a consecutive week of off school, but well, it was not as bad as cancer has been and compared to the last 9 months it felt completely approachable.
The other hindsight, silver lining, is that Beau’s contracted and conquered his first sickness post immune system reset. In July, when they took his immune system and bone marrow down to zero, and then “rebooted”, they wiped out the intelligence of past sickness. It’s like he is a new baby, ready to encounter the world of germs and build immunity. So, in fact, exposure is a healthy and necessary, albeit scary, thing. We are so thankful that he got it, kicked it, and is no worse for the wear
Everyone is sleeping through the night, without fever, and aside from a lingering cough from Jude, able bodied and back in the game. We are thankful, or maybe just relieved!! that our first illness of the winter is behind us, though truth be told the fear of what is to come as winter cold and flu takes hold, is a real, real thing.
The Heavy Wait 