I told you so!

John is not good at getting up in the mornings. This is mostly because, no matter if goes to bed at 8:00 or 10:00, he is just as likely as not to lie awake in his bed, completely still for one to three hours before finally giving in to sleep. If he takes an afternoon nap, it is all but impossible for the child to go to sleep. He typically goes to bed with minimal protest, but sleep is elusive.

He has always gotten by on minimal sleep. Chemotherapy is supposed to make you tired, right? Not this kid. He had 8 fairly intense cycles of inpatient chemotherapy as an infant. Six months' worth. It was not uncommon for him, at less than one year of age to nap less than an hour during the day. So...imagine a restless 12 month old baby, far from walking independently, but very adept at crawling, tethered to an IV pole for 3 days straight while toxic poison is pumped into him, then flushed with saline (constant peeing, constant diaper changing). And the only napping he does is dozing while nursing. Good grief! Reliving it makes me tired.

He finally started napping every day at around age 3. That's right, when a lot of kiddos are trying to give up an afternoon nap, John finally agreed it would be ok to take one. That ship has more or less sailed by now, though, as he's nearing his 6th birthday.

John never slept in a crib. He quietly and unobtrusively co-slept with us. Well, quietly after he was diagnosed and on the road to healing. Before that he screamed all night long. Anyway, he would lay in bed quietly, waking to eat, maybe going back to sleep, maybe not. When we moved him to his own bed, we moved along with him because he had a TPN + lipids (think intravenous Ensure shake) infusion going on all night long, so we couldn't risk him getting out of bed or getting tangled in the IV lines, etc. We would all go to bed at the same time. Matt & I would fall asleep quickly, and John would be just as likely as not to be just laying there, wide awake.

When we were able to move to our own bed, one of us would put John to bed and lay there with him until he fell asleep, at which point we would sneak out of his bedroom. Well...three hours later...invariably the one of us on bedtime duty would give in to sleep and end up sleeping with the boy while he was staring at the popcorn ceiling of our old farmhouse.

But...obviously...I have digressed.

Knowing that he struggles with getting up in the morning, I was looking forward to allowing him to sleep in on long, lazy summer mornings when preschool ended this spring. I wanted him to stay up as late as he wanted catching fireflies and roasting marshmallows. I did not want him to go to summer school. I felt very strongly that he should have the summer off from school before starting Kindergarten. I feared school burnout before his school career even got off the ground.

John, however, insisted on going to summer school. It's a full day; preschool was only a half day, so I knew his little butt would be dragging after a few days. He went to summer school Monday and Wednesday of this week. (I'm typing this Wednesday evening). Tuesday was a big day of doctor appointments, capped off with a visit to an arcade/giant indoor playground. He had a baseball game tonight, so by bedtime, the...boy...was...tired.

When I put him to bed tonight, I reminded him that he needed to go to sleep quickly because he would have to wake up super early for school in the morning.

He said, "Ugh! What day can I stay in bed and sleep late? I don't like to get up early."

I said, "Well, you can sleep late on Saturday, and then every morning except Sunday after summer school is over."

He said, "Man, I'll sure be glad when school is out so I can sleep late in bed."

I did not say, "JOHN CLARK! I TOLD YOU SO! I TRIED AND TRIED TO CONVINCE YOU SUMMER SCHOOL WAS NOT FOR YOU, BUT YOU WOULD HEAR NONE OF IT!"

But I sure wanted to.

And...in other news...more important news...John's five-year-post-diagnosis appointment was yesterday. The exam went well. He appears to be a 48 pound picture of health. We're still waiting on the lab results on his catecholomine urine test. (it's a test that checks specifically for neuroblastoma tumor markers in the urine) We and his doctors have no reason to suspect this test will show anything outside the normal range, but I am still biting my nails as I await the phone call from our oncology nurse practitioner telling us all is well.

Thank you for reading this tonight. Thank you for your support of our family through the last five years. Thank you for loving John. Thank you for praying fervently and unceasingly for his healing.

Thank you.

Losers

A rambling stream of consciousness on lost items and the losers who lose them:

If we're friends on Facebook, you're aware that one of our cordless phones has gone missing. We have two interchangeable handsets: one upstairs and one downstairs in my office. The batteries are so worn out on each of them that I frequently swap them; one phone usually won't last me the whole day in my office. Leave it off the charger? Well, that's bad news.

The beauty of the cordless phone is, of course, also its weakness. You've never lost an old-fashioned, wall-tethered phone, have you? It's not possible.

At some point in cordless phone history, manufacturers became aware of the tendency of the handset to go AWOL, and added the "find the phone" button to the base unit. It's pretty simple: just push the button, and the missing handset starts to beep like crazy, thereby saving, minutes, hours, or in our case, theoretically even DAYS of searching. A wonderful innovation...as long as the battery is not dead in said phone.

The problem is, I couldn't remember that I needed to press the "find the phone" button when I was in proximity to the base. You see, the one handset that isn't missing, has been in my office because a tax accountant does have some need of a phone this time of year. Since one phone was right there on my desk, it didn't really register (at such a convenient moment) that I should push the button. I would remember when I was upstairs, with a need to use the phone, but, I guess that's when my cell phone would come in handy (assuming it wasn't lost at that moment).

I finally got around to pushing the handset locater button yesterday. Guess what. My phone that won't keep a battery charge for 5 hours...won't keep one for 5 days either. There was no beeping. The phone is still missing.

No, PW, I don't think it's in the barn.

I hear my mom's calm, logical voice inside my head, just as clearly as if she were standing next to me, "Think back to the last place you saw it..."

Oh, wait, that's not her voice; that's mine.

A dozen times a day, John and I have the following conversation:

John: "Mom, can I have some apple juice?"

Me: "Yes, where is your cup."

John: "I don't know."

Me: (patiently) "Think back to the last place you saw it..."

John: "I don't know!"

Me: (less patiently) "Go find it. We're not starting a new sippy cup every time you want a drink. Only one cup per day; that's the rule."

John: whine, whine, whine, whine

Me: "Go look for it if you want a drink."

John: more whining

Me: I start looking for it, while he goes off to do something totally unrelated, largely unproductive, and entirely unlikely to result in location of above-referenced sippy cup. I finally give up, with the realization that the 20 minutes I've spent looking for the damn cup will not result in 20 minutes of time-savings from not having to wash an extra sippy cup that will serve as proxy to the cup that theoretically still exists somewhere in the house and will at some point, with enough searching, be located, albeit full of chunky, foul-smelling milk, or fermented juice .

When something is lost, I think of Uncle GAR. (not my uncle, the boys' uncle) Uncle GAR is good at losing things. Keys, hat, sunglasses, wallet, cell phone...nearly every time he and his long-suffering wife are home for a visit, it seems the weekend ends with the same scene: Auntie MAR making repeated trips to load the car, while GAR frantically searches for this, that, or the other (sometimes it's this, that, AND the other).

By virtue of being prone to losing things, Uncle GAR is very good at finding things. I think his secret is persistence. He doesn't give up; he looks until he finds it.

The night before John's big surgery...his exploratory laparotomy with excision of retroperitoneal mass...I was panic-stricken. John's Marian medal had gone missing. It had been given to him, along with one for me and one for Matt, when he was first diagnosed. It said "O Mary, conceived without sin, pray for us who have recourse to thee." I pinned it to his onesie every day using the safety pin that held the ends of his broviac (central line) in place. And at night, or in the hospital, while his central line was accessed (negating the need for the safety pin), I pinned the medal to his silky green blanket.

Because we had to be at the hospital very, very early for surgery, we were staying in Columbia at Uncle GAR and Auntie MAR's house. That evening, when we discovered it was missing, we all looked and looked for it, to no avail. All four of us, but especially Uncle GAR. We finally gave up and went to bed without having located it.

So we left for the hospital the next morning without it.

In the PICU, following above-referenced exploratory laparotomy.

I don't remember exactly when, but sometime that day (I think that morning before he went to work), Uncle GAR found it. It had mistakenly been thrown away with the medical supplies we had used to flush his broviac the night before. Yes, Uncle GAR had dug through the trash to find it. You know...it's always in the last place you look...

Thank you, Uncle GAR and St. Anthony.

John with Uncle GAR and Auntie MAR

Playing at the grain bin job site

I still haven't found the phone, but when I was looking for it this evening under the couch, I did find something else that had been missing...PW's gum boots. So, maybe we'll call it a wash.