I’m In!

The news of the impending loss of Colin’s port was sobering, but we put it behind us as we launched into the holiday weekend.

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Even at St. Jude, things slow down over three-day weekends, and during this period we only had one appointment, a lab check on Sunday to see how his magnesium was doing.

On Saturday, we headed to the famous Peabody Hotel for an ALSAC event that was part of the Country Cares fundraising efforts. Country music stations across the country hold radiothons for St. Jude, and the DJs come to Memphis to learn more about the institution (there is an article on the Country Cares site that describes some of the activities). Seeing actual patients and hearing their stories gives these people passion on air, so we were among three other families who spoke on that particular panel to an audience of 700.

Colin was the youngest of the children and, strangely enough, not the only one with ependymoma. We sat next to a boy who was diagnosed in 2008 and has fared well since then, though he still has to wear an eye patch, as two corrective surgeries have so far been unsuccessful.

We sat at the far end of the stage, with ALSAC’s CEO, Rick Shadyac Jr, interviewing the various families. During the course of the panel, Colin went from being fairly happy to pooping to squirming, getting it all over my pants and shirt, and then falling asleep. You can see part of this drama (including me reaching for a baby wipe to manage the situation in the back of Colin’s pants) on the ALSAC-produced video.

We are no strangers to poor timing in the diaper department, but the setting made this especially excruciating. Part of me figured that anybody who noticed would think compassionately about our situation, but another part figured that audience members would pity Colin for having such diffident parents. The fact is that we had no idea how long the panel would take, so as the situation got incrementally worse, it became more apparent that we should have taken action earlier.

Ultimately, Colin and his story took precedence over his otherwise unremarkable diaper activity. If you watch the video, you will see Rider, a morning personality from Denver, Colorado’s KYGO, stand up and pledge to think of Colin on Friday morning in anticipation of the big surgery.

What is not captured in that clip is his appeal to the audience that they all join him. Rider started up the rally cry to the ersatz 700-man (here, “man” definitely meaning human rather than specifically male) huddle, “I’m in!” The second time, he yelled it louder in a well exercised radio personality voice. “I’m in!”

It was unexpectedly macho yet moving, and not in the sense of we’re going to tackle this cancer and punt our way to victory but more we’re going to effing pray for you. Maybe that’s a subtle difference, but there was a palpable catharsis in the air. After all, sitting through panels of kids with cancer must be inspiring but also fatiguing. Obviously, these people are working hard to help our kids by raising money, yet they still yearn for something more concrete (or, more to the point, curative) to do.

Colin’s surgery is a definite pivotal moment in his course of treatment that represents a potent emotional chord just waiting to be plucked. I imagine that energy working its way onto the air on Friday, and it is only a shame that ALSAC didn’t figure out how to include it on the video. It was probably a combination of time and the mood, since, without an adequate segue, Rider’s incitement of the audience would seem jarringly evangelical and/or cultish in comparison to the rest of the footage.

All in a Day’s Poop

As for Colin himself, he napped through the whole thing, waking only when I finally had the opportunity to change his diaper. He did enjoy the Mr. Potato Head gift he received (the relationship with the kids in these events is more bluntly transactional) and, before the event, had a chance to watch the ducks. We didn’t stay for the daily procession back to Duckingham Palace, but he didn’t know the difference and was delighted by one duck that was splashing in the water drinking and eating.

On Sunday, we went to the hospital to check his blood chemistries. We have been gradually decreasing the magnesium in his I.V. fluids and decided to discontinue it entirely because it seems likely that his kidneys are fine now (indeed, on Tuesday his magnesium was still normal, so we are officially “all clear” with electrolytes now). This cut out six hours of infusions and gives us greater flexibility in scheduling his medications, which is helpful since we no longer have nursing overnight.

Port of Salvation (Wait, the Other Way Around)

Also, Dr. DeWire let us know that Colin’s port is also shouting, “I’m in!” and will be staying put. It was a tremendous relief to hear this and was an extra bonus to the long weekend. It is great news on so many levels, not the least of which is the disruption of having anesthesia to have another surgical procedure and the placement of the PICC. It  means he would miss a day of therapies and end up banged up and at greater risk of infection, ironically, before the big surgery.

Evidently, there was a complicated negotiation over the holiday weekend, involving numerous emails with Infectious Disease (ID) and a visit by Dr. Gajjar and Dr. DeWire to Le Bonheur on Monday to round with Dr. Boop and discuss Colin’s situation. The risk/reward of doing a port removal late in the game, in light of clean cultures on the 12th and 14th, equated to the decision to leave the port in place. From the ID perspective, it would have been an appropriate aggressive strategy earlier on, but at this point the extra surgery doesn’t provide a worthwhile benefit.

I also had been concerned about administering his antibiotics through the PICC, which tends to be extremely positional and will stop infusing if the line is kinked at all, something that happens all the time, in our experience. Especially with a child of his size, where there is simply very little real estate, one little bend of the arm and there is suddenly no flow in the line. The problem is that a pump will alarm and let you know that there is no flow going into the patient, but the Eclipse ball simply stops running.

My only complaint about the balls is their silence. They don’t let you know when they’re not flowing or when they’re done. Oh, and the fact that they are a ball. This makes them way too tempting for little hands that are immediately inspired to throw the ball. It’s virtually an autonomic response in a little boy like Colin.

It’s funny until you realize how strong Colin is and that he might really rip the port needle out of his chest or at the very least disturb the dressing that keeps it clean. When he is infused while he is awake, I have to camoflage the ball inside a bag or tuck it behind something or it is at risk of flying.

Better and Better

Colin gets to enjoy more time out of the hospital, feeling good and being active. We went to the zoo on Sunday and played outside on Monday, since the weather here was perfect for it. He has been having a grand old time and has become a virtual chatterbox over the past several days.

Sometimes, he audibly speaks “new” words, such as “more.” He has been trying to mouth all kinds of things but still struggles at coordinating his mouth. The right half of his face and mouth, while markedly improved, are still sluggish and don’t fully enervate.

However, the simple ability to utter sound is a pleasure for Colin, and, much like a baby, he is happy to say, “mama” over and over again just because he can. His sensory world is coming alive again, so we see other baby-like behavior. While eating, he is just as happy to feel the food or run his hand across the edge of the high chair tray as he is to try to feed himself.

This all can get somewhat messy, especially when there is a spoon and some flinging involved, but, as we are fond of saying, it’s a good problem to have. We have developed a lot of really great problems, like getting diapers changed (impossible!) and worrying about Colin getting out of a chair or squirming off the couch.

Now that he gets his point across better than ever, Colin often insists on sitting on the couch to watch TV. He absolutely loves sitting on the couch and wiggles his way into a comfy position when we put him there. I am loathe to have him become a couch potato, but it’s pretty cute to see him snuggled in, especially when he has a blanket and pulls it up over his lap.

At least, when not on the couch, Colin is in virtually constant motion. If he’s in the wheelchair, he often taps his foot. Otherwise, he is comfortable moving around on the floor, even making his way off the mat at times. It’s not fun to watch him make his way out of the safe zone, but fortuantely he doesn’t do it too much and hasn’t threatened to make his way out the apartment door!

Best of all, Colin has been extremely happy. This far out from chemo, though dangerous from an oncology perspective, he has been thriving and feeling really good. His digestive issues are long past, and even the temporary disruption caused by antibiotics (oh, the dreaded cefapime!) seems to have passed.

For better or worse in the overall scheme of things, the extra time that the line infection has bought Colin has boosted his spirits. We have spent months promising that he will be able to eat and move his body independently again, and now he is seeing it come true. We could not say how things would pan out if he suffered more neurological injuries without this joyous reprieve, but I am convinced that it represents an immeasurable boost to his spirits and more fuel for his tough-but-tested determination.

The Big Day

Going into his third surgery, Colin is faced with a high probability of new neurological injuries. Dr. Boop said that the chance of him suffering posterior fossa syndrome (or whatever it is that he has experienced that many people are reluctant to describe as posterior fossa) is relatively low, since the volume of tumor that needs to be removed is small and there is very little in the actual posterior fossa.

However, the cranial nerves are very likely to be affected. As Dr. Gajjar says, “He will take a hit.” Swallowing, vocal cords, facial paralysis, and eye movement may disappear for the time being. We can only hope that the recovery he has enjoyed over the last two weeks will have an effect on his ability to bounce back a second time.

The larger looming threat is the possibility of a brain stem stroke, and we have to trust Dr. Boop’s judgement in working in this region of the brain. It must be such a difficult prospect for him as a physician to balance the risks and benefits as plucks away in this “inoperable” region of the brain.

On the one hand, he knows that, in order to give Colin the best chance to beat the cancer, he has to get out everything that he can see. On the other hand, a significant enough injury will obviate any benefit from removing the tumor, since they will not irradiate if the brain stem is badly damaged by a stroke.

Of all the areas of medicine that we have learned, this is the most inscrutible. Even attempting this resection takes chutzpah, yet it also requires constant reassessment of the situation and the experience necessary to know when to stop. Can one more fragment of tumor come out? It seems that just looking at the tender, taut feeders from the basilar artery can make one snap.

The near gross total resection by Dr. Wisoff helps tremendously, since the topography of Colin’s brain will change little as Dr. Boop works. We hope that the chemo has done its job of devascularizing the remaining tumor and making it easy to remove. Dr. Boop mentioned that, conversely, the devascularization can make the tumor more firm and, therefore, less easy to take out.

However, this is a situation where we have not been able to make “perfect” decisions. I am amazed at the fact that we are still standing on the side of treatment where a gross total resection and, thus, the greatest chance of a cure, is possible. This surgery represents the most significant individual milestone in Colin’s treatment, since it marks the last opportunity to send the tumor packing before we irradiate.

When I think of these facts and others along those lines, I have to set those thoughts aside and immerse myself in Colin’s joy and appreciate his life today. The best part of caring for a child with cancer is that children by nature experience the immediacy of life.

As adults, we so often get frustrated by the single-minded need for a certain toy or food or the desire to get out of the line at the grocery store. We reward patience and forward thinking, all skills that children need as they mature. However, the childish ability to live in the moment is a gift that they give us.

We tend to think of death as the moment when we stop breathing, but it is really when we stop living. I see dead people all around me, but it is more usually the parents than the children. While we do the work of managing the technical aspects of cancer care, our children carry us on their shoulders.

Where I see the compression of time until Friday, the looming array of unknown complications, Colin laughs or plays or makes jokes at somebody’s expense. He frowns and shakes his head if somebody steals his nose but happily thieves from others. One moment flows into the next without demanding anything of the past or the future.