Colin’s second week of radiation was grueling: vomiting, utter fatigue, dangerous aspiration and an unexpected stay in the hospital. The third week (days 9 – 13) was a completely different story. After going back inpatient at St. Jude, Colin slept for two days straight, waking on Friday morning at 4 am to let me know it was time for fun.
Colin’s little voice is guttural but not very loud. It takes all his effort to talk over the trach, and he still hasn’t recovered the strength of voice that he had before the last surgery. Presumably, the right vocal cord is still paralyzed or mostly so, but the left works well and helps him get the job done.
Mom. Colin, I’m sleeping.
Mom. Colin, it’s sleeping time.
Mom.
I managed to get up and turn on the TV, get a DVD running. Fortunately, he likes Pingu and didn’t seem to mind the infinite loop that got us through to his radiation time when I finally got up myself. The visit to the hospital wasn’t very restful, as I ended up getting up to suction him several times a night, waking to the sound of him virtually drowning in secretions.
The nurses had no way of telling what was happening because Colin wasn’t desatting (oxygen levels decreasing in the blood) enough to set off the alarm. With copious thin secretions, he was getting adequate air, but he was still too exhausted to cough himself free. Under normal circumstances, he both swallows secretions better and coughs out what he does aspirate, but pure fatigue got the better of him.
Good Morning!
However, things started looking up after his two-day nap. He returned from a very long post-sedation period asleep on the stretcher giving everybody concerns, but proceeded to wake up and not nap until the evening. On Saturday morning, comfortable that he really was on the mend, we came back to Target House to a bright and warm day.
Since then, Colin has improved steadily, even through another full week of radiation. The only specters that followed us out of the hospital were diarrhea and an outbreak of strange bumps on his left foot, leg, and hand. Both were presumably from the antibiotics, which we were able to discontinue early, since Dr. DeWire opined that he never actually contracted pneumonia (go tell the resident that!).
Unfortunately, both of those unpleasant symptoms outlasted the antibiotics, with the added bonus that diarrhea and a full leg cast will ultimately end in disaster. For Colin, that day came on the following Tuesday, with an eruption that was beyond the pale and forced us to schedule an immediate appointment to have a new cast put on.
Annoyances like this can have hidden benefits, in this case allowing us to speak with the attending physician in the orthopedics clinic at Le Bonheur; the follow-up appointment had been scheduled for Monday the 18th, almost a week after we actually went in to clinic.
Three Weeks, With Time Served
At first, both the resident and attending told me that Colin would actually need the cast longer than the initially advised three-week period. This is not the direction negotiations are supposed to go! Although Colin has been handling the inconvenience and discomfort of the cast swimmingly (really, much better than an adult in similar straits), we were still anxious to liberate that poor leg.
However, once I pointed out Colin’s underlying ataxia and our ability to keep him from weight bearing on the afflicted limb, we got his release date moved up, not back. The cast came off for good a week later, with a proscription against full weight bearing activities.
Though we have since moved on from the cast phase, there were two noteworthy benefits to the new cast that made the final week more tolerable and a good transition to total freedom. For one, Colin got to pick the color; he chose a bright red, which quickly got adorned with “Let’s Go Red Sox” once Dad got his hands on a black marker. For another, this cast was made with a sharper bend to the knee, giving Colin much more mobility. With the new cast, he was able to scoot and almost crawl, though the fiberglass gets poor traction.
I suppose he wasn’t allowed to do all this, but in the scheme of things, the relative risk to the leg is fairly small and the risk of immobility and poor lung function is extremely high. Colin regained his strength since his tank ran dry the previous week, so I could actually “walk” him by acting as a crutch, supporting his body weight to serve as the right leg while he stepped with the left (contravening the advice of Colin’s PT based on her concern for my back, I continue to do this with the cast off; since he has adjusted to this mode of walking, he complies readily and doesn’t try to bear down on the right).
World’s Best Backwards Driver
Even with the cast, Colin could also maneuver a Cozy Coupe, one of the ubiquitous and classic red plastic cars that adorn many day care centers and patios, ours included. The new bright red cast acquired a dingy spot on the bottom of the heel where he had abraded it in the course of his adventures.
Like a toddler who is first learning how to navigate a Cozy Coupe, Colin mostly pushed himself backwards with the good leg, though he could ootch forward bit by bit. Sometimes, I would push the whole car, but this is risky since the good leg could fold under if he weren’t actually cooperating.
For the most part, during his time in the Cozy Coupe, Colin is content to sit in his wheels enjoying the wind in his hair and watch the virtually steady stream of planes landing at the Memphis airport in the afternoon. We surmise that FedEx generates this protracted conga line of cargo jets and appreciate the aerial distraction.
Cast-free, Colin still creeps around slowly in the Cozy Coupe and limits his activity. Now, I wouldn’t dare push it for fear of reinjuring his leg. In the apartment, he crawls a bit but mostly scoots surprisingly quickly, and we sometimes turn around to find the little backpack with his feeds sitting on the floor, the line stretching around the corner as he has gone off on a mission.
Training Wheels
Meanwhile, Aidan has been making good use of the bikes here and rides the loop from the playground that lies between the two Target Houses and the front gate. The entire route has a paved sidewalk with some detours for variation. Following Aidan on a bike has its own hazards, given the fact that he uses training wheels and is prone to stopping or slowing in a manner that is not compatible with two-wheeled bike riding. I’m not sure what Dad does, but I’ve taken to riding largely on the grass so as to avoid collisions.
Aidan has grown so much, both literally and figuratively, since coming to Memphis. Many of his pants are too short and some have holes in the knees, a good argument for buying higher quality children’s garments and even better evidence that he is doing what a 6-year-old should be doing.
Also age appropriately, Aidan is becoming more resistant to activities that he doesn’t care for and it is a constant struggle to keep the whining, which seemed to abate for a while, in check. He remains touchingly sensitive to his brother’s condition as well as playful; there is nobody who can make Colin laugh more than Aidan, with his nonsensical banter and gyrations.
Aidan still refers to Colin as “baby” and loves to touch his chubby cheeks. It usually goes like this, with Aidan using a special sing-song voice he uses only with small children and animals: “Whatcha doin’, baby? Chubby cheeks. You’ve got chubby cheeks,” followed by cheery humming.
Back in the Saddle
Colin, for his part, has gotten his game back. We see continual improvement in his level of awareness and interactiveness. He is unrelentingly mischievous, with his antics generally accompanied by a big smile that says he knows he’s cute enough to get away with it.
Right after getting diagnosed with the blood clot, we had to go to the medicine room and spoke with the attending physician, one who treats brain tumors and who has seen Colin as a patient before. Dr. Broniscer is a tall, jovial Brazilian whose good cheer seems simultaneously incongruous and necessary for a doctor whose specialty is gliomas, a aggressive cancer with a high mortality rate.
After examining Colin, Dr. Broniscer looked up with a big grin and, in his melodic Brazilian accent brightly commented, “I didn’t know he had a personality.”
Perhaps this encapsulates the extent of Colin’s transformation over these last months, from a largely inert giant baby to troublesome toddler. On every plane, he is a different child from the one who rolled through the front door on a stretcher and much more like the one who was walking, talking and enjoying life before we learned of the lurking peril.
With a greater interest in interacting with people, Colin’s vocal skills are ramping up. Between the trach and the neurological deficits to his mouth, speaking itself is extremely difficult. Much of his conversations are limited to voiceless movements of his lips, accompanied by extremely Italian hand gestures.
Colin’s two big hits are still “Mom” and roaring, probably in the opposite order. However, his ability to attract my attention by calling my name has reinforced vocalization. “Dad” is impossible for him to say, though he tries. He can get out “mine” (how age appropriate!), “bye,” and attempts “please.” There are certainly other words that don’t come to mind, and he constantly adds to his expressive vocabulary, though sometimes we are at a loss to guess what he’s trying to say.
Before speech therapy the other day, he spontaneously pointed at the wall and said the word “wall” almost recognizably. I hoped this was a harbinger of progress during his therapy session, where we tried a Passy-Muir valve to allow him to more easily vocalize.
Rehab Progress
Colin’s tendency to surprise us makes it impossible to assume how things will go in the next 30 minutes, yet we were lucky that in this case he actually did, if not embrace, tolerate the valve for up to five minutes at a time. The next session, he kept it on for almost 20 minutes. With a little work, we hope to get Colin closer to speaking and also hasten the rehab of swallowing.
With the Passy-Muir valve in place, he breathes in through the trach but when he exhales, the valve closes, forcing the air up around the trach, through his trachea and ultimately through his mouth and nose. The higher pressure in the throat makes speaking easier, but it also facilitates swallowing and stimulates the nerves in the throat.
I have been periodically occluding the trach with my finger to create a similar effect, though the last thing I want to do is prevent him from inhaling by leaving my finger in place too long. Frankly, this probably looks like a perverse form of child abuse to somebody who isn’t in the know, so I usually explain myself to on-lookers, especially when I am doing it to help him have a stronger cough. This is tedious and suspiciously defensive, so I’d much rather use the valve.
The palsy on the right half of Colin’s face has improved markedly, and he is now communicates much more with the formerly mute half of his face. Anybody who knew Colin before diagnosis is familiar with his funny little faces and uncanny expressiveness.
The old Colin is definitely back, so many months after going underground following his various surgeries. For us, there is a tentative catharsis in seeing him like this, our reluctance to fully rejoice born of hubris (what will the next crisis be?). We will go home with a much more Colin-like Colin.
Entering the Final Phase
Colin has three weeks of radiation, then an end-of-treatment scan that will serve as a baseline for his follow-ups. The protocol includes six months of oral chemotherapy, which we have yet to fully discuss in detail with the team. The six months consist of three two-month cycles. The first month has a combination chemotherapy regimen of cyclophosphamide (first three weeks) and topotecan (first ten days). The second month in Colin’s case uses erlotinib every day, but they also use etoposide for children who don’t have either medulloblastoma or ependymoma.
Especially with Colin returning to his old self, it is much harder to conceive of putting him through more treatment that is likely to affect his quality of life. The original chemotherapy that we did had a very clear role in his treatment (devascularize the tumor to improve resectability, if not shrink it), but this phase is more opaque to me.
For ependymoma, radiation is the best curative treatment that we currently know of, so the end of radiation means the last phase of treatment that we expect to see any results on. There will be one more MRI performed to establish the zone of treatment for the residual tumor, which needs to be clarified (this was still being debated a month after surgery).
The residual tumor is not expected to respond instantaneously, so we will have to wait for months to see if the treatment is headed in the right direction and that morsel of tumor is going to give up the ghost. With ependymoma, it seems that there is no moment of clarity when one concludes that the cancer is gone for good.
Instead, one has to wait and see, as do we all.
Good to have you back!
rwh