Out of the Nest

Our little fledgling has returned to Target House for good, following his last inpatient stay at St. Jude (barring unexpected events, of course).

While we will spend every week day at St. Jude, our trips to the second floor will be restricted to social calls. This milestone is especially noteworthy in the course of a treatment for a child who spent the better part of five months living in the hospital here and more than two months total back in New York.

Where most children in this protocol are inpatient for about a week of each of the four months of chemo, Colin was out for less than a week each month and racked up even more time due to complications that attenuated his treatment. The circumstances of his departure on Friday overshadowed the significance of the moment, and it was only with a combination of frustration and relief that we finally packed into the car and carefully made our way back to Target House.

You’re From up North, so You’re Used to This (Not)

Friday morning brought with it a wintry mix of precipitation that legitimately ground the city to a halt. With no equipment to manage the snow and ice, I am tempted to say that it’s like having a kid with a trach and no suction machine, but that analogy is not compelling to most people. I should probably just stick to saying that it’s like having snow and ice and no plows to get it off the road.

When we left after dusk, it was clear that the slush on the asphalt had been moved around by the traffic but not removed at all, and as the temperature dropped below freezing, I dreaded the results. Even worse, in spite of the weather I still had to play the poplar game of reverse frogger where drivers are supposed to avoid pedestrians that dart, saunter or stagger across Poplar.

I had to test my brakes in front of a man with a cane who didn’t even glance at traffic as he trudged into the frozen slush. Driving on Poplar at the best of times induces a near-constant grimace, and dubious weather conditions raise the stakes so that I nearly had muscle spasms by the time we got home.

The whole time, Colin sat quietly in the back and, though not aware of the import of this particular discharge, was more able than I to absorb the fact that he was now out of the hospital. If anything, this is what he seemed to be contemplating as we made our way back to our Memphis homestead. In all, we spent only two nights at St. Jude following our trip from Le Bonheur.

Better Than Ever

It was a short transition but part of the safety net of coming back to the roost before venturing out again. Everybody fussed over Colin and his marvelous, miraculous condition. In addition to surviving the surgery more neurologically intact than anybody had anticipated, he looks healthy.

Among other things, Colin’s hair has started visibly growing back. The timing is apt, since he is on a short course of the powerful steroid decadron in order to manage brain inflammation due to surgery, so I imagine his eyelashes are growing in especially lustrously.

In addition to the longer hairs that survived chemotherapy (the hair falls out only when it is in a particular phase of growth, so during the four months, there were some hairs that happened never to be in that particular part of the cycle and thus remained intact), he has a peach fuzz of growth on his head. No manscaping necessary yet, but we’ll report if his Geico caveman hair returns.

Also, many people commented that Colin’s color is good, which is natural since his bone marrow is significantly recovered from the insult of chemotherapy. His bloodwork demonstrates that he is much healthier and stronger in this department. Even after losing some (not much) blood in surgery, he is far above the level where he would need a transfusion.

Like a Real Boy

I was shocked when our nurse reminded me that Colin’s port would be deaccessed prior to discharge. He has not gone without active venous access in so long that I forgot this would be possible. They will put in a new needle the next time they need to draw some kind of labs, possibly on Monday. When he starts radiation, they will presumably access him while sedated on Mondays and deaccess him on Fridays, leaving him needle-free over the weekends.

Colin fussed and complained over the fairly benign process of removing the dressing and needle and had no appreciation for this event, which was exciting ot me but marred by his discomfort. It is strange to see his little chest bereft of a dangling I.V. hub and clave but full of scars from various surgeries: three ports, the g-tube, fundoplication, and the peritoneal part of the shunt.

Colin has been through the ringer, but you wouldn’t know it to look at him (with his shirt on!). Besides the mood change from the decadron (grumpy, hungry, extra stubborn and more grumpy), he is his normal self. In occupational therapy, he decided he wanted to sit on the vinyl steps, so he walked over there. I helped him of course, but less than you would expect.

Back in the Saddle

Miss Jessica, the therapist, remarked that she can see no perceptible difference from before surgery in strength and coordination. Colin didn’t try crawling up the big blue mountain, but he ended up walking around the room trying to find just the right toy to play with. He uncharacteristically cut the session a few minutes short, demanding to return to his wheelchair. 

Colin navigates by gripping the armrests on both sides, inclining his body forward slighty, and pointing commands to his driver. With his wispy hair, he looks like an old man accustomed to wielding control. He is like a hoary CEO who was vigorous and powerful in his younger days, and whatever ailment has incapacitated him in senesence has not diminished his aura of command.

Feed Me, Morris!

Right now, our biggest problem is the decadron, which is giving him an insatiable desire for food. I’m not sure if I would call it an appetite as much as a demand to have comestibles moving into his pie hole at all times. Little tastes are more frustrating than anything, and we have had more than one physical battle over a spoon when he wants to shove more in than he can safely handle.

Although Colin’s swallow function survived the surgery, it is not as effective as it had been and we have to be especially careful about how much he gets and how quickly we offer it. These limits are utterly unacceptable, and he finally throws himself down in a funk when he doesn’t get his way.

Colin’s main “diet” is ketchup with bacon salt. Seriously, they sell it in any old grocery store here (the bacon salt, not the ketchup, and I had a choice among three kinds). However, he augments that with anything he can get his hands on. He sucks off the flavoring from chips and mainly sticks to savory items because of the changes to his taste buds from chemotherapy. We have made an uneasy truce about the quantity of food that goes into his mouth (vanishingly little), but he demands ridiculously large variety as well as anything that I attempt to eat, thus limiting my diet within his field of vision.

I am now measuring time by the number of decadron pills we have left in his oddly scheduled taper (the dosage, when it changes, does so halfway through the day). He will be off of the accursed drug after Thursday, which seems quick but is not soon enough.

During his first weekend of liberty, we stayed holed up at Target House in part because of the weather but also because we had no pressing engagements. I wasn’t anxious to expose his still-delicate immune system to greater Memphis, either.

Weekend Walkathon

Colin basically spent the whole weekend engaged in various rehab activities: OT, PT and speech therapy. We took four trips to the play room on Saturday and two on Sunday. His play was interspersed with eating (speech therapy) and a bit of TV on Saturday.

Although we get a lot out of our time in rehab during the week, days like this allow him the opportunity for very intense therapy. Over the course of Saturday, Colin went from walking with support (holding his body) to walking on his own and holding my hands for balance!

This is a huge step for Colin (literally) and I hover somewhere between disbelief and gloating. After his first cycle of chemo, I declared that I wanted to have him walking before radiation. By this, I meant walking with the assistance of a walker or something of the sort for balance, but bearing 100% of his weight himself. Well, he did it!

It amazes me that Colin will be more rehabilitated in his first time back for post-op physical therapy than he had been in his last pre-op session. Clearly, as Dr. Boop had intimated before surgery, Colin is not suffering from posterior fossa. If anything, it seems like he is more alert than ever, an observation that may be related to the new type of shunt valve.

Onward and Upward

Colin will be getting another MRI and start in on radiation planning so he can start radiation as soon as possible. That MRI may reveal some changes related to the new shunt valve, but maybe not. It will serve as a better indication of the extent of the surgery and residual tumor (if any).

While we had remained open to the highly unlikely possibility of going to Florida for protons, there is no doubt that we will stay here, if only because of the issue of time and the importance of continuing adjuvant therapy without delay. A trip to Jacksonville would result in additional weeks before starting radiation because the planning process for protons is more laborious.

Transitioning to the idea that we are that much closer to finishing treatment and going home is disorienting. Adding to this effect is the fact that I didn’t sleep for over 40 hours because our night nurse was unable to make it due to the weather. I only found this out after waiting hours for discharge and, knowing that they were pressed for rooms, opted to leave so another child could come in for treatment. We have too often heard of cases where chemo is delayed because lack of space in the hospital, and I was not about to generate that frustration and distress for another family.

The weekend got off to a non-drug-induced psychadelic start where I sounded completely incoherent and a few times nodded off while sitting up at the Lilliputian diner booth in the playroom until Colin would shove a piece of plastic food in my face. It was better to stay awake by organizing the play room and sorting through the buckets of food, dishes and appliances.

Unfortunately, with the temperature below freezing throughout Saturday (I know, I didn’t think that could happen in Memphis either!), transportation issues continued, so I wasn’t spelled until the evening. When I finally did slip into bed, I found myself gripped by an involuntary smile and strangely unable to fall asleep for a few minutes out of the pure pleasure of being reposed.

Waking to a New World

The ice on the plants and buildings had been beautiful in their frozen stillness on Friday and Saturday but transformed into a glittering symphony of dripping sunlight and plip-plops like heavy rain as it all melted. How quickly our environment responds to the slightest change in temperature, just a few degrees magnified by the radiant heat of the sun.

So, too, we are suddenly able to see the impending changes to our lifestyle here in Memphis that will ultimately lead to our return home. The surgery was so pivotal and had such potential to change so many aspects of Colin’s case that nobody was willing to discuss our next steps until it was over.

We have opened a new door in Colin’s treatment, and this week brings the beginning of a tremendous change for us all. Just as momentous, Aidan will return home after his too-long trip away from Memphis. I am grateful that he will return to a little brother who will not seem significantly different in his eyes.