On Wednesday, February 24, Colin had his first radiation treatment. We had originally expected therapy to begin a week sooner, but the complexity of [...]]]> “Give me your tired, your poor,
Your huddled [brain tissue] yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tossed to me,
I lift my [high-energy photon] lamp beside the golden door!”

On Wednesday, February 24, Colin had his first radiation treatment. We had originally expected therapy to begin a week sooner, but the complexity of Colin’s plan delayed the beginning of treatment. Dr. Merchant described the shape of the field as “The Statue of Liberty,” explaining the adaptation of the above excerpt from Emma Lazarus’s famous poem, “The New Colossus.”

The intersecting paths of multitudinous toxic beams of electrons, our own Lady Liberty’s imprisoned lightning, shadow the original tumor bed. Dr. Merchant pointed at no less than a half-dozen spots around Colin’s head where the IMRT machine will deliver its payload for 30 treatments.

We will perform another MRI near the end of therapy to the tumor bed in order to determine where to apply the final three doses that are aimed at zapping the residual tumor. The disputes over what is and is not residual tumor in the latest scans will be moot, since radiation is expected to “clean up” the scans and clarify what is tumor, according to Dr. Merchant.

Colin also had a Monday MRI and MRV (venous) to determine the disposition of the blood clot. This took place immediately after his morning radiation, making for a longer sedation but causing no disruption to therapy. The verdict: the beginnings of “recannulization” around the clot, meaning that blood flow is improving, though the size remains the same.

(Not So) Still Life

We are reassured that therapy is on course though of course would rather hear that the clot is smaller. At least now our concerns about an imminent clot-related problem are, if not eliminated, at least alleviated. Looking at the various risks of Colin’s medical situation is like an art class in perspective.

The fungal endocarditis, while still in the picture, has receded into the distance. The newer thrombosis has gotten smaller, looming less significant behind the foreground of radiation and whatever other issues arise.

Speaking of other issues, Colin has had two new events that popped up over the past week. First, he had a mishap when Dad went to pick him up on Saturday around dinnertime. Colin had scooted up to the edge of the couch where I was sitting and was fussing about food (no surprises there). Dad pulled him back before picking him up, but Colin’s right leg ended up under the couch still and got caught on the edge of the couch.

Colin was in a lot of pain and we gave him morphine but iced it and put him to bed. Our initial concern was bleeding (from the anti-coagulant Lovenox; his platelets were great at 330,000). When he awoke in pain that wasn’t managed well even with extra morphine, we took him to St. Jude for evaluation. There, they determined that it looked like soft tissue damage but just to continue providing pain relief.

Catching a Break

Colin didn’t sleep well through the night and was still in pain that broke through more morphine than we have ever given him. An x-ray at St. Jude of both legs and ankles turned up a torus fracture at the top of his tibia. Fortunately, children’s bones are more pliable than adult ones, and are less likely to break all the way through.

We don’t know whether he was more susceptible to a break because of osteopenia, a weakning of the bones from chemotherapy, or if this would have happened anyway. It’s a surprisingly “normal” childhood mishap that generated some confusion when I took him to Le Bonheur to get a cast put on.

When the triage nurse first asked his diagnosis, I said, “anaplastic infratentorial ependymoma,” and she looked at me cross-eyed. “Give me a body part,” she joked. “Brain tumor.” Okay, too detailed.

When the orthopedic surgery resident asked, “What are you here for?” I responded, “A broken leg.” He meant, why were we at St. Jude. “Brain tumor.” Strike two. “Diagnosis?” Look, you should have been there the first time somebody asked me that here.

Our experience at Le Bonheur’s emergency room was definitely the smoothest so far because we have become a known quantity. Various members of the staff recognized us and were quite nice. They do appreciate parents who are helpful and know how to care for their children

The hospital takes some pains to separate St. Jude patients from the rest of the population for fear of giving them hospital-contracted infections. With advance notice through the doctor on call at St. Jude, we are able to avoid any significant wait before going inside and we were promised a quick turn-around time to get us home lickety-split.

Between the pain and morphine, Colin was hazy but awake as we went through a second x-ray (right leg only) for the orthopedists to look at and then the inevitable cast. I have never seen a cast being constructed, so it was independently interesting and Colin fortunately tolerated the procedure well. With no disruption to the overall integrity of the bone, there was no need for surgery or resetting (yippee!), only the inconvenience of immobilization of the right leg for three weeks.

In the balance of things, it’s not the worst thing, but given his physical improvements and new mobility (scoot-scoot!), it is disappointing that we have a new limitation to work with. After the cast went on, the resident used a cast saw to cut slits up both sides of the cast, allowing flexibility for expansion if there is any swelling.

I was initially concerned about the cast saw, which sounds scary enough to me and I think I would flinch at the idea of a blade coming so close to my skin. However, we didn’t mention anything of the sort to Colin and the doctor simply told him it was a really noisy vacuum, which is true enough. (Really noisy vacuum + sharp blade pointed at your flesh.)

As luck would have it, Colin loves vacuums, so this worked out well and he actually enjoyed the cast saw part of the process. This was terrific until I realized that it was spitting off particulate matter and had to be careful to cover the trach (by chance, I was already pretty much covering it with a tissue).

This is an obvious yet easily overlooked fact about trachs: one has to avoid small particulate matter. There was a craft-related incident involving glitter that really has left me with a bad taste (figuratively, though nearly literally) regarding loose glitter, probably forever. I’m not the only one, as the Friday craft lady calls it “the g-word.” One day when we were inpatient, one of the other children was doing a Play-Doh-and-glitter craft that was fun but got glitter over everything, including the participants.

Although I was careful about getting none in Colin’s trach, I didn’t appreciate how long glitter sticks around until I ended up trying to wipe it from his skin, careful not to make a shiny fleck dance into the trach, for days after. Not long after, at an off-campus Christmas party to which the St. Jude kids were invited, we had to fend off a little well meaning but hazardous holiday cheer. A woman in a just-short-of-inappropriately-sexy fairy costume was ready to grant a wish to Colin, “magic fairy dust” in a dispenser poised in one hand, ready to sprinkle some on her palm and blow a delightful glittery cloud in our direction.

“No glitter!” I exclaimed in a panic, waving my hands like a maniac Scrooge. It’s funny in retrospect, since she didn’t manage to deliver her payload, but I can only imagine giving Colin mesothelioma from poor monitoring of trachward activities.

Good as New (Sort of)

In the scheme of things, the broken leg is not so bad and fortuately comes with few mid-term complications besides mobility limitation and more back problems for us. Once the cast was on, Colin’s pain virtually disappeared and he promptly began joking with the resident, roaring at him, stuffed tiger in hand. Within a half-hour, he was asleep catching up on needed rest.

Errors in management happen all the time with varying effects. Colin’s g-tube has come out twice (once replaced by me) and, more horrifyingly, the g-j-tube came out once. The long strand of the jejeunal tubing looks weirdly organic slipping out of his belly, a rigid tapeworm with a black line running down the length, unlike the relatively innocuous and compact g-tube mickey button. More recently, we discovered that the g-j-tube can simply fall apart, and I’ve become somewhat expert at reassembling it in situ as feeds or stomach juices (or whatever!) dribble out.

A few weeks ago, I turned on Colin’s feeding pump without checking the rate. The rate had been turned up before the pump had been turned off last, and his feeds were going in at four times the normal rate. Before too long, he had violent vomiting and diarrhea caused completely by my carelessness; the jejeunum has no capacity to “store” food, unlike the stomach, so the excess causes an abrupt reaction since the feeds to move elsewhere. Fortunately, the problem was pretty much fixed by turning off the pump and giving him a good suction, though we took a quick trip to the medicine room for a once-over.

The Bad Kind of Normal

Accidents happen, and it seems that everybody who hears the story has a similar tale of accidentally damaging a child, usually a healthy one at that. It is easy to forget, while dealing with cancer, that non-treatment-related problems can occur. I remember in the distant past hearing of St. Jude patients who have had to go to Le Bonheur for broken bones (this, in fact, is the canonical example presented to families of an instance in which an emergency will call for a trip there rather than St. Jude). However, it seemed so outlandish and careless as to be completely irrelevant to our circumstance.

Colin has not been happy about the cast and asks for us to remove it, as it inconveniences him. We have to explain that it keeps his leg from hurting and have tried to make it clear that this problem is unrelated to the thing in his head that has caused him so much trouble.

In recent days, the cast is the least of Colin’s problems. The consecutive days of anesthesia and radiation, compounded by the rigor of the leg break ordeal, have taken their toll on his system. Since starting radiation, he has required oxygen at night, something we have not seen since chemotherapy (excepting the immediate post-operative period in January).

Into the Woods

We realized that this impaired respiratory status meant something, if only that he was creeping closer to the edge of a bigger problem. We have also been anticipating the possibility of radiation-induced nausea, a problem that he seemed to be escaping. However, after a few isolated incidents of vomiting, Colin started up on Tuesday night with a bout that would not seem to stop.

I tried to settle him into bed to rest and suctioned him, as he was obviously struggling with aspirated stomach contents that variously bubbled and shot out the trach. This is always a dangerous sign and usually his cough is extremely strong at these junctures, as we have seen throughout chemotherapy.

However, the level of oxygen in Colin’s blood dropped alarmingly low and it was not staying in normal levels, even on a higher rate of oxygen from the concentrator at home. It was time to return to the medicine room for a likely admission.

A chest x-ray revealed fluid in the lower right lobe of Colin’s lungs, indicating aspiration. No surprises there, and it was a quick ticket for admission as well as a full work-up.

Fortunately, Colin is still on schedule for radiation, as long as the anesthetists feel comfortable sedating him. Respiratory issues are the most likely road block to sedation, and we probably headed off a true pneumonia at the pass.

Although the resident described this as pneumonia, it seems like there is no way that the spot on the x-ray is an infection, since the aspiration was only hours before. Colin is now getting an aggressive regimen of antibiotics to stave off any infection, and he hasn’t had a fever at all. All of the blood and other cultures have been negative.

Tuckered Out

Colin’s problem right now is more fatigue than vomiting, although we are seeing nausea reminiscent of chemotherapy and our old dreaded friend cisplatin. I am surprised at the persistence and vigor of the nausea, though I also understand that the brain tends to adjust to the insult of radiation and the nausea improves after the first week or so. Even so, there are no sure bets, especially when Colin is involved.

Fatigue seems to be preventing Colin from coughing well. As much as suctioning is a great tool for clearing out the trachea of aspirations, it does not replace coughing which, if nothing else, can bring fluid closer to the area where they can be suctioned. Deep suctioning irritates the trachea and generates even more secretions, exacerbating the problem. Although sometimes necessary, it much be performed judiciously.

Colin has been exhausted and has been sleeping like he just got off a flight from Asia. He has awoken enough to be a little playful and somewhat demanding but hasn’t even been able to make it through a movie. The cast on his leg, although it draws a lot of attention from his friends on the floor, is the furthest thing from his mind.

We will remain in the hospital until this issue resolves, which will presumably be within a few days. Colin’s lungs seem in better shape, but the fatigue needs to improve so he can protect his airway. Another child could just sleep it off on the couch, but in Colin’s case, it poses a serious health risk, as evidenced by his most recent adventure.

Deja Vu All Over Again

Returning to the second floor at St. Jude has been familiar and strange all at once and yet again reminiscent of our arrival here. At the time, he was suffering from respiratory issues and had chest PTs around the clock. I was yearning for the sound of a respiratory therapist creeping into the room in the middle of the night to pound on Colin’s back.

I fondly recall the peace and quiet of the room here, where these disruptions were a pleasant symptom of people here taking care of our banged up little boy. At the time, I was overwhelmed with a sense of relief that we were on a path to moving on in Colin’s treatment (finally!) and in the foreign hands of an institution that promises to take care of everything.

Nothing is so simple as that, yet it is true enough. Perhaps I am suffering from a combination of early onset nostalgia and some homesickness.

Visiting Lady Liberty

Work recently took me, if not home, then close enough to count. I spent several days in New York, mostly in the confines of the worn but serviceable New York Hilton. It has won me over by familiarity, though there is little else to recommend it aside from the location.

The weather was seasonably dreary and not conducive to outdoor exploration, not that I had time for that anyway. Even so, I was easily reminded of the workaday-amid-tourism appeal of Midtown Manhattan. New Yorkers painstakingly ignore and circumnavigate gawking, disoriented visitors while the latter labor through the chore of selecting which of the multifarious City delights they will enjoy.

On one of the rainy mornings, I gazed down at the sidewalk, watching the semaphore of umbrellas dancing below. No matter how high up, you can hear car horns and the frustration of early morning traffic. At night, I listened to a street vendor banging and rolling his cart down the street, the sounds echoing up the canyon of skyscrapers.

The best part of New York is that it is an egalitarian mosh pit of humanity. During my short stay at the Hilton, there was a Jewish fundraiser that drew Senator Schumer, whom I literally nearly ran into. At first, I thought he was another dark suited executive from the conference I was attending but quickly recognized that he was familiar to me but not vice versa. It seemed like a typical New York moment, a casual brush with sort-of fame (I’m not sure if politicians count).

A day-and-a-half later, the same space was occupied by a startling mass of foreign students, apparently from all over the globe. I have no clue what unifying force brought them to the Hilton, but they filled their allotted half of the floor in sharp contrast to the staid group discussing retirement in the other half. Again, a New York moment that I tried to relish as I stood on the escalator struggling with the different cultural bathing standards of some of the Big Apple’s visitors.

Escape from New York

I flew back on Tuesday night before Colin started radiation, luckily escaping a predicted snowstorm that threatened to throw off my travel schedule. My flight was delayed but I figured on a late arrival. Upon checking in, the self-check computer told me that I would miss my connection and there were no more flights to Memphis to follow.

In a panic, I dashed to a human being behind the United counter. Normally I’m not uptight about these things, but I really have to get back to Memphis because my kid is starting radiation tomorrow!

I am guessing this is the first time the ticket agent had heard this plaint, but he acted nonplussed as he clicked away at his keyboard searching for an alternative. Don’t worry, he assured me. There was an earlier flight that had been delayed, and I was second on the standby list.

Clutching my boarding pass, I paused before running to security and the gate. Do you want to see a picture? Another agent had meandered over and the two of them admired pictures of Colin (and Aidan) on my phone. More clicking at the keyboard, then a new boarding pass.

Here, you have a seat. You don’t have to worry about anything.

I can’t say that this is an exclusively New York phenomenon, and it certaintly could have happened anywhere. Even so, it is something that people who don’t understand the City find surprising. Strangely, it is exactly the sort of thing I expect, yet one can never predict when it will strike. For whatever reason, I am especially touched by the fact that it was Colin’s picture that compelled the agent to move me off the standby list (I would have gotten on the plane if he hadn’t done that, yet he was reacting to my anxiety about getting on the flight).

Perhaps that is also a characteristic New York response: I’ll do something reasonable for you as I would for anybody who walked up to this desk; now that I have reason to believe your story, I’ll go the extra mile. New Yorkers are naturally dubious of strangers because they are just that, an unknown entity. However, it takes very little to crack the shell and expose the humanity.

As much as I laud my New York experience, I will add that they do not suffer fools lightly there, either. Moments later, a very testy TSA employee admonished me for mistakenly grabbing a bin from a cart that he was still maneuvering into place. My enjoyment of his gruffness was completely irrational and more symptomatic of my enjoyment of home base than anything.

If there is any one lesson we have learned in our adventures in pediatric cancer it is that people want to help, no matter where they are. More often than not, they don’t know what to do or say, but the intention is there. Recently, there was a woman with two children who saw me in the grocery store with Colin (this is Colin’s only trip to a grocery store in forever!). The mother told her children, “Smile at the little boy” in an admonishing tone, meaning, “Don’t stare at the kid with cancer.”

I felt an overwhelming sense of compassion for her as she struggled with discomfort and ignorance of what to do or say. There is no “correct” response, as that varies depending on the audience. Thinking on it, I am at a loss as to how to react in that situation, but she just wanted to be nice and she wanted her kids to behave appropriately, not really knowing what either of those things should really look like.

How boneheaded would I have been in the same circumstance? (Answer: very)Even now, I have to feel out how to communicate with other families in a way that suits their situation and approach. To some degree, it’s like making a Polish joke, where you get permission to cross lines if you’re from Poland.

It is the country nobody wants to enter, but there is no choice in the matter. Even if Lady Liberty and her imprisoned lightning free Colin of ependymoma, we will never be able to give up our citizenship. We fly a new flag and sing a new anthem. Our only reluctance was to start, not for lack of passion to continue.

Friday, Colin had his two week post-op MRI to determine the disposition of residual tumor. As we all had suspected, there is a [...]]]> Colin is always full of surprises and has continued to not disappoint us. It would be funny if it weren’t so worrisome, with Friday bringing the need for another burst of medical education.

Friday, Colin had his two week post-op MRI to determine the disposition of residual tumor. As we all had suspected, there is a bit of disease remaining, but we are glad for Dr. Boop’s restraint in not digging around for more, since it likely would have harmed Colin. We are officially calling it a near total resection, and the significant reduction of tumor greatly increases Colin’s chances of a cure.

To have Colin doing so well and being happy and very active this soon after surgery is astounding. Dr. Merchant will meet with us on Monday morning to discuss his plans for radiation, and the simulations will then take a good part of the day.

For My Next Trick

To our great surprise, however, there was another meaningful finding in the scan. Colin has a “cerebral sinus venous thrombosis,” a blood clot in his brain. This is the result of surgery and, evidently, started from a small clot that showed up on the initial post-op MRI (we were never informed of this). The good news is that the clot does not block the flow of blood. However, he is at great risk of stroke, either at the site of the clot from continued growth or further downstream as the clot breaks apart.

To keep the clot from getting larger and prevent broken off pieces from causing problems, Colin started the anticoagulant lovenox on Friday night. This is a low molecular weight heparin. This is used because it is basically more predictable than heparin itself, an anticoagulant which is, incidentally, used frequently to keep his port from clotting.

The initial injections (given subcutaneously twice a day for a course of three to six months) are at the lowest therapeutic dose. We are starting at a very conservative level we can’t do the lab work to test to see if this is too much until Monday; at that point, we’ll see if this is right or he needs more. The danger is of a bleed. The alternative therapy offered (and suggested by Dr. Boop) is heparin administered by I.V. in the hospital, which for various reasons wasn’t what the chief of hematology at St. Jude recommended.

There is a more aggressive intervention that they would not recommend unless we saw worsening of the clot. We are still in the midst of learning about this new situation and, as far as we can tell, the recommendations we have gotten are the standard of care for this and certainly will suffice until we can have more consultations during the week.

We suspect that the clot may have gotten worse a few days ago because of acute but temporary changes that we saw with him. We ended up taking Colin to the emergency room at Le Bonheur to have him assessed for a possible shunt malfunction. The collection of fluid at the back of his head got bigger and he experienced terrible pain that broke through morphine. They performed a CT scan but did not identify the clot, so we are very fortunate that he had the MRI scheduled at St. Jude, where the radiologist immediately notified our clinic of the problem. We are extremely thankful that we did not discover this because of a more dramatic event down the road.

A New Lurking WMD

The thrombosis hangs over Colin’s head (literally, just about) even more than the endocarditis, which is considered safely managed if not fully resolved. Ironically, the anticoagulant should help get rid of the remaining vegetation in Colin’s heart!

Now, we have to constantly look out for the possibility of worsening of the thrombosis or stroke. Although we are on high alert and feel like we need to act quickly if we suspect either, Dr. DeWire says there is little to do emergently.

The lovenox is a standard treatment for a stroke in children, so he is already receiving therapy for a stroke. Adding another anticoagulant might raise the risk of a bleed unacceptably high. The next step would be using a microcatheter to clear the vein, though we don’t know much about what that involves or how quickly they would act.

Fortunately, the VP shunt helps keep the pressure down in Colin’s head, and the pseudomeningocele on the back of his head is a secondary pressure valve. Both of these reduce the chances of damage from high pressure if things should go south and are helping him right now.

Ignorance = Bliss (Really!)

In typical fashion, Colin doesn’t know any better and has been doing tremendously well in all other respects. During PT on Friday, he walked all over and went up and down the stairs twice. He desperately wants to use the treadmill which, though impossible, serves as good motivation for him to walk to that room. Bear in mind that he is doing this all with little to no support.

On Friday morning before the MRI, Colin walked to the play kitchen in the MRI waiting area and stood at the stove making coffee. It was so cute and normal! He wasn’t completely confident in his legs and is slow to adjust the positioning of his feet when he is standing, so I had to help out in that department.

Colin is physically active, playful and interactive. He is accustomed to pushing elevator buttons and delivering greetings as we truck around the hospital and Target House. This amounts to an assortment of waves, high-fives, fist bumps, and blown kisses, the latter of which are doled out reluctantly so as to increase their value. He will not simply blow kisses to anybody on command and often demures.

Hubris

It seemed too easy, really, to think that we would just slip into the rhythm of radiation and chug along smoothly until the end of treatment. Oh, pissant mortal, you should not have dared think such a thing. I have been tempted all along to ask what the rare complications are that Colin could have so I can recognize them when they occur because it is these very things that do seem to crop up.

In the absence of a better medical education, vigilance is key, though it mattered not a whit in this situation. However, our experience does reinforce our need to follow our intuition as parents and caregivers and pursue lines of questioning, especially when we are getting unsatisfactory answers. That said, how can one push when the response to, What is the differential diagnosis? is a persistent I don’t know?

Where is the seam of trust between the patient and the medical professional? When am I allowed to let go of the responsibility of seeking better answers and have faith that what I am being told is correct and reflects the judgement that I would want? I suspect that the answer is variable and sometimes that there is no such thing, that medical professionals are not in a position to answer the real question.

These thoughts are troubling and empowering. I dread having to pry for better answers or cajole/strongarm somebody into complying with my idea of right. I certainly am fallible, but maybe my personal investment makes me more prone to identify and correct my own errors.

When it comes to Colin (or any other patient, for that matter), ego is less important than his wellbeing, yet for some individuals that may not be equally true. This thought would be more chilling if we weren’t reminded that medicine is practiced by real humans with the same flaws as other people.

The more I am immersed in this world, the less concrete my ideas of how to cope are, especially when one wanders into the territory of the subtle or obscure. I am often required to compensate for one characteristic or another of somebody who works with Colin, yet it is more difficult to discern at what point this becomes unacceptable.

In our case, we are fortunate that Colin’s primary team is rock solid. The intensity of his medical interventions, even with the new injections, is toned down significantly. We trust that Colin will get used to getting shots and that we will get used to administering them. With any luck, this is all we will have to do for the thrombosis. Worrying, it turns out, has no therapeutic value.

Yet again, Colin has unearthed a dangerous rare complication with the best scenario (current adequate blood flow, modern therapy). We can only hope that his good bad luck holds up!

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Colin will get an MRI on Friday morning to assess how effectively surgery removed the remaining tumor and come up with a treatment plan.

The [...]]]> With the family reunited and Colin enjoying his time out of the hospital, we are getting ready to move on to the next phase of treatment.

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Colin will get an MRI on Friday morning to assess how effectively surgery removed the remaining tumor and come up with a treatment plan.

The radiation oncologist, Dr. Merchant, will have to calculate the appropriate field, adjusting for sensitive structures (cochlea, to protect his hearing on the good left side) or increasing the dosage to residual tumor. They have to manufacture a face mask to hold Colin’s head still so as to reduce variability in the field treated during treatment. Simulations (CT scan and MRI) will take place on Monday and radiation is scheduled to begin the following week.

Compared to chemotherapy, radiation typically has relatively mild short-term side effects. However, radiation is a powerful and potentially perilous therapy. My mother, who grew up in Japan during World War II, finds the very concept of using radiation as a curative medicine horrifying and counter-intuitive. After all, radiation can cause cancer and, indeed, there is a known incidence of secondary cancers in cancer patients treated with radiation (the same is true for chemotherapy).

The radiation methods used to treat Colin and other children with localized brain tumors are relatively new and offer new hope to families. Dr. DeWire reminded us that, only 10 years ago, a child like Colin would have been sent home to die. Under three, whole-head radiation is devastating, and I am thankful that we never faced that decision. Even so, it feels dangerous to get too comfortable with the idea of shooting photons into that fuzzy little head.

Timing is Everything

The cure for Colin’s cancer is defined as surgery followed by radiation, so there is no alternative option for him. We are grateful that we have these technologies available, yet also aware of how serious this really is. Just weeks before Colin starts his radiation treatments, The New York Times ran a series on the dangers of radiation, in particular the type of radiation used in his case, intensity modulated radiation therapy (IMRT).

• “Radiation Offers New Cures, Ways to Harm” — The New York Times, January 23, 2010
• “As Technology Surges, Radiation Safeguards Lag” — The New York Times, January 26, 2010

Obviously, we have a great deal of faith in St. Jude as an institution to take care of the children and institute fastidious safety protocols that exceed what is required by regulations. This kind of sobering information also makes us think about people who are facing similar decisions but without the safety net of a similar institution.

How can one as a parent or individual feel confidence in the treating institution? How much more overwhelming is the process when one is battling with insurance and questions of payment or coverage? I could easily see how these concerns could overshadow due diligence that the current system has placed on the shoulders of the patient.

A New New Normal

On a less philosophical note, it was just great to have everybody in one place. Aidan was beyond affectionate with his brother upon his return, curious about the new scars, and obviously happy to see his brother in good condition. Colin’s health has worn on Aidan’s psyche, and it is a tremendous boost to him to see Colin happy, healthy, and little changed from his pre-op condition.

Furthermore, we are able to tell Aidan that Colin is not scheduled to return to the hospital to stay overnight. This was a great relief to Aidan, though his anxieties have not rendered him phobic of the hospital.

Since his return, Aidan has been riding to school with our friends, the Simkins. While their son Brennan is in the hospital, their other sons, Christopher and Nat, are attending Aidan’s school. This has eased the transition for the boys and made the prospect of going to school even more appealing for Aidan.

Furthermore, Aidan happily chirped about looking forward to going to the hospital to visit Brennan and returning to the juke box area on the second floor. I’m not sure if this is how things will pan out during Brennan’s tenure in the hospital, but it is nice to hear him speak of something he likes there.

We will soon be settling into our own new routine, especially as Colin gets radiation. He has relatively few medical appointments now and primarily gets rehab. Every day, his walking gets stronger. His right leg is better at supporting his body, and he more confidently brings the left forward.

Ironically, Colin has not yet had a physical therapy session, but we are able to build it into his daily activities by pushing his wheelchair down the hall to get him to walk the distance. Given how he is currently moving and his increasing endurance, I am hopeful that he will be on a walker soon.

Wherever You Go, There You Are

When I am stooped behind Colin, holding his hands like a human walker or holding him under the elbow or armpit when he has a treasured prize like a lollipop in his hand, I dare to allow myself to envision him walking on his own. This is not a good example of living in the moment and it is a kind of indulgence, but it is one that illuminates a guide light. I don’t mean a light at the end of the tunnel, which is a depressing analogy, but a reminder of the very thing that it is in the process of happening.

Colin is walking. For him, today is just today, and it he is not working toward something; he is doing. This is not substantively different from what will happen when he no longer needs assistance and when he can stand and play at the train table for hours on end.

I may see the difference between Colin relearning how to walk and the “end result” of that, but there isn’t a difference. He goes to the edge of his capabilities because that is where it is natural for him to go, and the fact that the edge moves and he gets more competent is not remarkable to him. It is just the place that he happens to be.

Adults find it difficult if not impossible to replicate such an in-the-moment perspective. At best, I have to allow the image of that freely ambulating version of Colin to interject itself into my understanding of him today. Maybe I can feel comfortable using his determination and present-mindedness when I know it is channeled through parental forward thinking.

As parents, there is much that we have to absorb on the part of our children that challenges our ability to stay in the moment. There are multitudinous medical and practical life decisions, for example. This is true for any family, not just one facing catastrophic illness.

We get to torment ourselves with deep thoughts about the implications, risks and benefits of radiation while Colin knows that he will fall asleep every day in a treatment room and wake up to enjoy the rest of his day and that we do this to make the boo-boo in his head better. This is all he knows and needs to know about radiation at this point.

The older children here are much more involved and aware of the treatment, but for the parents of young children, the thought is either to preserve their innocence or lament its loss, depending on one’s perspective. There is so much we don’t know about how this experience shapes them, but there are parts that are easy for them.

It is a treasure to watch these all the children at St. Jude play and enjoy life, and it is the reason we do this. I would like my son to be cured of cancer, but I can’t guarantee that. Given the opportunity, he assures me that he can have a good quality of life. Despite the clear successes here at St. Jude, this is the story that lurks under the improving survival statistics, giving children a good day today. Tomorrow cannot be locked up in a box and presented like a gilded trophy. It may seem like a grim reality, but it is the same reality that we all face and it is one that focuses on allowing joy to bloom rather than feeding suffering.

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 [...]]]>

Colin Mugging for the Camera at Le Bonheur (Post-Ops)

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.

When we [...]]]> Life doesn’t offer real do-overs, but there are times when an experience follows the parallel track of something that has come before. Returning to St. Jude after less than a week at Le Bonheur, I had the feeling that I was given the opportunity to completely repeat the past but improved in every way.

Rewind

When we arrived in Memphis in August, Colin was a dormant puddle of a boy lost in the middle of posterior fossa syndrome, cranial nerve deficits, and a difficult hospitalization that subjected his vulnerable body to numerous infections. He rolled through the front door of St. Jude on a stretcher, brought by a Le Bonheur ambulance from an air ambulance flight because we had no other way of getting him here. We entered the unknown but welcoming environment of St. Jude, grateful for the opportunity to be here but complete strangers to our new home.

On January 27, only five days after the definitive and perilous surgery to cure him of cancer, Colin again pulled up to the front gate at St. Jude strapped into the back of a Le Bonheur ambulance. Recalling the past difficulty in getting through the gate back in August and at the time impotent to help, I asked one of the paramedics, “Do you have his medical record number?”

Indeed, they had been given a cover sheet with full information. She smiled at me. “You’ve done this before.”

What a Difference Five Months Makes

I had overheard our assigned room number before we left Le Bonheur. There was some chatter about whether they were expecting us, so I resolved to reduced any delays on the other end. From the ambulance, I called the 2 South-East nurse’s station (I could tell it was East rather than West by the room number), which is programmed into my cell phone. Cheryl, one of the nursing assistants, answered the phone.

“Hi, Cheryl. This is Colin’s mom. Do you know who has him today?”

I could hear Cheryl call the question out at the nurse’s station: “Who has Colin?”

“It’s Gena,” she answered.

“Great. Let her know we’re on our way.”

The most unfamiliar aspect of our trip was the fact that we came in through the isolation clinic, which is used for patients with infectious diseases in order to protect the vulnerable patient population here. For all of Colin’s popularity with the Infectious Disease doctors, outside of the C. Diff he arrived with, he never contracted anything contagious during his treatment.

When we backed into the entrance, Colin was sitting bolt upright because he refused to lie down in the stretcher, and had spent the whole ride enjoying the view out the back. I expected him to cringe or whine at the familiar sight of the St. Jude campus (and thus the threat of further hospitalization), but he squealed with delight when the doors finally opened.

As we made our way through the first floor, people looked at us as they always do when paramedics come through with stretchers. At this hospital, which serves the bulk of its population on an outpatient basis, somebody sick enough to require this kind of transport tends to attract attention.

However, in the scheme of things, Colin is quite fit and has far exceeded even the most optimistic predictions. Although we have not tested his walking skills, he has on several occasions gotten on all fours, and at every turn, he has proven how strong he is. Just ask anybody who has had to restrain him for a flush of his shunt!

Neurologically, we expected some setbacks in the improvements we had seen, most particularly with swallowing and the right vocal cord. Colin’s right eye does not completely pull to the side, and the facial droop is more pronounced than it had been before surgery. Although these nerves were not explicitly manipulated, the area was exposed, and it’s not surprising that there were some effects, hopefully fairly transient.

The Big Question

As for the swallowing and vocal cords, it is difficult to say exactly what the status of those functions is. Before surgery, the swallow reflex was good but Colin was having problems manipulating food in his mouth. Now, his mouth and tongue are still moving, and we originally suspected that he wasn’t swallowing. He has made some audible vocalizations, weaker than before surgery, and had not started speaking again as before.

However, Colin managed to pass the bedside swallow evaluation based on the process of elimination. We gave Colin his current favorite food, ketchup, and watched his trach intently. Nothing red came out his trach, so after a while, we had to assume that it went down the only other available tract, his esophagus.

The speech therapist was unable to verify that she saw him swallow, something that is difficult at best in a small child with a trach. Given the fact that he has been coughing up copious secretions, we think that he is aspirating at least to some extent.

However, it is possible that this region is working better than we might assume at first blush because of the after effects of multiple sedations with intubation. Although Colin has a trach, they did put an endotrachial tube in his throat for both the big surgery and the shunt revision, and this can cause irritation that increases secretions from the lungs.

The speech therapist who evaluated Colin at Le Bonheur was baffled by Colin’s case. She has never seen a child go through a surgery as radical as his and retain the amount of functionality that Colin has. In particular, Colin’s cough reflex is incredibly strong, and he forcefully clears his airway, particularly when awake. This is a good sign, yet not independently definitive.

Loving on Bacon

The night before surgery was Colin’s last hurrah with food, so we ordered up many of his favorites, although Le  Bonheur would not give him bacon as part of its policy to protect children under the age of three from choking hazards. His last meal was momentous since it marked the assumed end of his adventures eating for some time.

However, with the blessing of the speech therapist at Le Bonheur, Colin has resumed his “eating,” with us monitoring carefully to make sure that he doesn’t endanger himself. We know that his swallowing is certainly less competent than it had been prior to surgery, but the fact that there is any apparent functionality is astounding.

Colin sometimes gets overenthusiastic with the food and shoves pieces in his mouth. He ends up whining for our help to fish out stray pieces and at least realizes that he can’t eat like normal when these things happen.

When we returned to St. Jude, which has a more relaxed approach to bacon, he happily sucked/gnawed on it while we nervously looked on, at the ready to retrieve errant pieces. The relative resilience of bacon, the very reason that Le Bonheur does not provide it to young children, is (next to the strong savory flavor) the very property that makes it the ideal food for Colin to “love on.”

One of the Southern expressions we have become enamored of here is to “love on,” which embraces any overt affection. It is especially appropriate to describe Colin’s attachment to food and our penchant for ordering items that he can’t really eat and can hardly taste but can still love on. He will hold a slice of pizza to his lips and close his eyes, as if to absorb its essence without partaking of it corporeally.

Many children with swallowing deficits end up having such strong oral aversions that they lose the impetus to eat. Not so for our Colin, and the willingness of his medical team to allow him full access to food even though he can’t really consume it serves his continued desire to eat by mouth.

Familiarity Breeds the Opposite of Contempt

Although we found a great staff at Le Bonheur, here they know and love Colin and understand our role in rehabilitating him. The whole bacon situation might be alarming in the hands of the ignorant, but our team understands and encourages this unorthodox behavior.

Going from one institution to another always brings a degree of uncertainty. We are unknown quantities to each other, and the most difficult aspect of the transition was not so much losing the comfort of familiarity as it was losing the functionality.

To a large degree, I have failed to appreciate how our months here have demonstrated that we are active and educated in Colin’s medical case. Here, the staff is more likely to listen when we contribute our opinion because they know that we understand the medical issues and can communicate ideas and questions.

Even though both Dr. Gajjar and Dr. DeWire are out of town until next week, I am more comfortable being at St. Jude because I know that we can get things done here. Part of this is our familiarity with the system and part of it is because we are not some random family from off the street.

It’s great to be back here where everybody who stops in and sees him marvels at how wonderful Colin looks. While we enjoyed showing him off before surgery, now it is even more miraculous. Not everybody who knows him here realizes how important and aggressive the surgery was, so that part of his narrative is even more astounding.

The path here has not been without anxiety, but perhaps that makes the return to St. Jude even more sweet. After Colin’s shunt revision, he did much better, but then we were concerned that he seemed lethargic and that his sleeping heart rate remained unnaturally low.

On Monday night, Colin would wake up and open his eyes and his heart rate would pop up, but he would immediately fall back asleep, heart rate plummeting. The same happened even after a flush of the new shunt valve, which was working like a charm.

Ultimately, we found nothing wrong and concluded that his heart rate was low either as a residual effect of the hydrocephalus from the shunt malfunction or because of the surgery’s manipulation of Colin’s puny brain stem. Now, we know not to panic, but only after another disquieting night.

Tonight, it is easier to rest, knowing that Colin is stable enough to return “home” to St. Jude. Once we get a good handle on his current baseline, we expect to go back to Target House and start planning his radiation treatment. Although we have left open the possibility of going to Florida for proton therapy, the chance of that coming together is slim to none.

Despite Colin’s improvements, his primary team is not comfortable sending him to another group of doctors to manage, and it would be hard to get him in the queue for treatment in Jacksonville.

More to Be Thankful For

We are also happy that we finally felt comfortable enough to finalize Aidan’s return to Memphis. Although he misses home dearly and has enjoyed his visit, he also misses us. Being separated from him has been difficult, yet it would have been worse to have him here as we managed one thing and another.

The concerns about the shunt malfunction were alarming but served as an excellent education for us on that subject. In this case, the valve was clogged with blood and debis from the surgery, so flushing wasn’t going to do the trick. However, we know more about how they work generally and what diagnostics can be performed. It’s the kind of thing you hear about but don’t fully understand until you go through it.

One other thing that happened a lot while we were at Le Bonheur is that people asked us where we were from and, after we answered, they would often say, “You’re far from home.” We do get the question when we are here at St. Jude, but not nearly as frequently, and there are a lot of people from much further away here.

If somebody asked me to pick a place to spend six-plus months of my life, I would never have voluntarily selected Memphis. Our experience here has been primarily focused on Colin’s treatment, and we have met many wonderful people through St. Jude.

Through the course of Colin’s surgery, we really feel that our circle has grown wider as we have been touched by so many wonderful people who have been supporting us here in Memphis. We came here as strangers not just to St. Jude but to this city, yet there is now a group from Aidan’s Montessori school that has arranged to bring us dinners every evening.

On a practical sense, this is wonderful and amply appreciated, but it also exposes us to the kindness and generosity of people here. It’s like the difference between taking a chartered trip to a foreign country or living in another family’s house as an exchange student.

We are thankful for all of these new friends who have come into our lives and those who have stumbled in through other ways. Of course, we are as always thankful for the support of our family and friends everywhere. We are very lucky that we have been able to make the choice to send Aidan home where he has not had to personally experience the rigors of surgery. As well as things turned out in the end, it was no walk in the park and not the best thing for a sensitive six-year-old.

Sometimes, it is difficult to recognize milestones and relax because there are so many things that can happen along the way. Returning to St. Jude, making the parallel journey to the unique place that is St. Jude but no longer strangers in a strange land, we are nothing but grateful and relieved.

By the time I [...]]]> On Sunday afternoon, I left Le Bonheur to pick up a few things at the grocery store, walking out of the sterile air into the openness of a springlike day. The sun was bright and the air a pleasantly neutral temperature, but the sky betrayed another mood in the dark gray distance.

By the time I was on my way back, clouds limned with charcoal lurked over Kroger’s like a two-toned version of the ominous smoke monster from Lost. On the other side of the road, the sky was still light, clouds outlined in the blinding brightness of the sun.

Point: Sky Above Kroger

Counterpoint: Sky Across the Street from Kroger

Not Good, Yet Not so Bad

In some ways, there is no such thing as good or bad news; there is just news, and how we deal with it. Otherwise, one gets swept up in the details of relative goodness and badness and so forth. My bad news may be much better or worse than somebody else’s, and so with the good news as well.

Yet it is difficult to ignore the metaphor of the weather and the realization of how quickly one has to deal with an unexpected change. In our case, it boils down to what is a minor complication of brain surgery in a patient like Colin, a shunt malfunction.

That he has gone these months without a shunt malfunction in the face of other close calls and near disasters is a miracle, and this particular incident is far from unexpected. The process of opening up his head introduced air in his ventricles that, in turn, got into the valve of his shunt. The neurosurgical fellow flushed it on Sunday morning to jump start it, but we had been on hydrocephalus watch all day with the expectation that he would have a CT scan and possible surgery on Monday morning to replace the valve.

This is all fixable and is at the opposite end of the scale of difficulty as the Friday resection, so there is nothing fundamentally alarming about the prospect of having the shunt fixed. However, it is worrisome nonetheless to watch one’s child for signs of increased intracranial pressure and to turn back the clock to the prediagnosis days when we now know he was hydrocephalic.

Another Trip in the Hydrocephalus Way-Back Machine

It is an eerie exercise in retrospective poor parenting. Remember the time when I took him to the party and he acted dazed and wasn’t very responsive, had a hard time walking? The look on his face now reminds me of that.

Even in our hyperalertness of a possible change in mental status, a neurological red button, we did not quickly see any problems with Colin in the time since the surgery. Part of it was probably the fact that, in comparison to some of the other residents of ICU, he looked downright peachy and ready for a trek in the Himalayas.

Mind on Other Matters

On Saturday, following a very non-linear path, Colin left the ICU and settled back into his room in the neuroscience floor at Le Bonheur. The day was set to start with an MRI, but the order had failed to migrate into the computer system, so the gears had not been set into motion for it despite the fact that that it was a well discussed protocol and we had discontinued feeds (after only three hours!) at midnight.

The lapse went undetected for hours, masked in part by problems with the internal phone system that made it impossible for the ICU to call through to MRI. We had been waiting for hours for anesthesia to come by in preparation for the procedure, and finally an agitated anesthesiologist arrived and asked for a run-down on Colin, which I gave him (his nurse was attending to her other patient, so I launched into the typical summary).

He explained that the order for the MRI wasn’t in the computer, so I should go to the front desk and have them call down and make sure the MRI nurse is coming. I happily complied, always eager for opportunities to facilitate the medical process and get things moving.

This is when I found out about the phone problem and offered to run down to MRI myself to let them know. Colin was sleeping peacefully but was bound to be cranky and hungry when he woke up. Furthermore, we were slated to move back to our room on 5-South once he had recovered from MRI sedation.

Eventually, everything got worked out and he got his MRI. As we were preparing to bring him into the MRI for sedation, one of the nurses suggested that Mom carry Colin into the room and the anesthetist said, “That’s not Mom. That’s his nurse.”

After all the frustration, the moment of levity at the mistaken identity was amusing for the rest of us and (at first) inexplicably embarrassing for the anesthetist, who apologized to me no less than three times throughout the course of the day. What most mortified him, he later explained, was asking me as a parent to do something when he thought he was directing a staff member.

I was happy to do something to speed along the process. As much as this procedure would hold important information about Colin’s treatment, we were more interested in the impending move upstairs out of the ICU and a prime opportunity to go out and eat lunch (like normal people).

Between one thing and another, it took hours for us to leave the ICU. It was a relief to slide into the quiet of our own room in a relatively empty unit, since many of the patients had been discharged earlier in the day.

For whatever reason, it was only here that we were able to really look at Colin and notice that he had significant pooling of fluid around his incision site. Of course, the day after a major neurosurgery and an MRI with sedation, it is not unreasonable that he would be groggy. However, we felt that he was more zoned out than he had been earlier in the day.

We asked for somebody to take a look at him, which the resident did. After determining that the shunt was working fine, he mentioned that the air in the ventricles can cause problems and that he could return to flush the shunt if necessary.

Jumpstarts

After I returned from my shopping trip, the nurse came and assessed Colin, who was now staring out in the distance and not very responsive. In the morning, after the fellow had flushed the shunt, he became quite perky. He did a good PT session, sat up on his own for a while, and Skyped.

By the afternoon, Colin had sagged again, and a repeat flush had similar results. At this point, we expected that we were just staving off surgery. As before, the fluid collection in the back of his head served as a pressure relief valve. A CT scan on Sunday evening confirmed that his ventricles were no different than before, but we could still tell the difference in his behavior.

Revisionary

The surgeons here replace the valve on Colin’s shunt on Monday morning. This somewhat attenuates our stay at Le Bonheur, but given his unexpectedly good recovery from the big surgery, it’s the least of our concerns.

This whole process underscores the difficulty in really understanding what is going on at any moment. Diagnosing problems with Colin is easier than it had been since he is much more active and communicative, and being off of chemo helps tremendously. Even so, many things can cause irratibility and lethergy, which seem to be the main things that show up when things aren’t right in Colin’s head.

Complicating matters, Colin’s heart rate on Sunday night dropped down significantly (hanging in the 80s or 70s through the night, occasionally dropping even more). This can be a sign of hydrocephalus, and it was something we saw after his second surgery. However, they were never sure if it was really just a side effect of the manipulation of the brain stem.

As for the tumor, Saturday’s MRI shows areas of increased signal (not enhancement) that the fellow was reluctant to call one thing or another. They cleared the area that is showing up and saw only scar tissue, so it is possible that is all that remains. However, we wait for various opinions from St. Jude, which should have the scans today, before we make any announcements about the relative completeness of the resection.

As always, we spend much of our time hanging in the various gray areas of diagnosis and understanding of Colin’s state. Fixing the shunt will presumably scratch one item off the list and allow us to peel back another layer of Colin’s everchanging medical puzzle.

At the time [...]]]> When juries wrap up quickly with a verdict, it can be a good sign or a bad sign, but it usually means that they have found the suspect not guilty. In this case, the jury adjourned hours earlier than expected to report that our little suspect is not guilty of having visible tumor.

At the time I heard the news that they were closing, I was at St. Jude making my way to the noontime seminar on ependymoma. It was a shock to hear that Dr. Boop was primarily concerned with hearing whether he was done so quickly for good or bad reasons. The rest was just icing. As we have learned from our experience, the flow of information trickles in, and it was several hours until Dr. Boop met us in the recover area and explained what he found in surgery (he had to do an urgent shunt revision after Colin’s surgery).

The sixth and seventh nerves were untouched, so we hope that Colin’s progress in these areas will not take any steps back. There was a hunk of tumor under the bundle of nerves nine and 10 that had been scarred from previous surgery (no surprise) and had to be manipulated in order to be cleared.

Dr. Boop’s fellow described Colin’s brain stem as “puny,” referring more to the Southern term for sickly rather than being small. However, when I pressed her on what a puny brain stem looks like, she said that Colin’s looked a bit small. I imagine it a bit like a piece of ginger that has been in the fridge too long, though I’m sure that’s nothing at all what it really looks like.

The basilar artery was protected by the arachnoid lining, so they were able to delaminate carefully without disturbing the artery. They stopped because there was nothing else left that they could see, and they couldn’t see anything on the other side of the brain stem that looked suspicious.

When I asked whether he felt that the tumor had changed from chemotherapy, and Dr. Boop said it was much easier. He agrees that chemotherapy seems to be a good strategy for improving the resectability of ependymoma. This was not something that specifically came up in the seminar at St. Jude, but we are selfishly gratified that this at least helped Colin get another big step closer to a cure and justified our decision to do chemotherapy.

A follow-up MRI will tell us how to classify the surgery and whether it is really a gross total resection (GTR), the gold standard in the treatment of ependymoma. Although the prognosis for this kind of cancer is somewhat dependent on pathological features and expected aggressiveness, the most important factor is successful complete removal of resectable tumor tissue.

The hope and expectation is that any remaining cells, of which there are certain to be some, will be taken care of with radiation. We are cautiously optimistic about celebrating a victory regarding the GTR, but we are absolutely thrilled with Colin’s immediate post-op recovery.

A Good Problem

Colin hasn’t been very happy since he woke up, but he’s been irritable, feisty and active. Although I’d prefer he not suffer, it’s good to see him move so well and try to flip over onto his knees. We can hear his voice when he cries, which is certainly a hopeful sign. However, we are giving him morphine to keep him comfortable so he is neither crying nor fitful.

The trip to the ICU was delayed by emergencies, so we waited in the recovery area for a few hours before getting “settled” in the ICU. It was a fairly unsettling settling process. We were separated from Colin and weren’t allowed to see him for several hours due to an unspecified procedure that forced them to usher out all of the parents.

We certainly respect the privacy of other families, but if it happens while we are actually in the ICU, we will be hard pressed to leave him alone (they may have to call “Doctor Strong,” the code for security). After all, we have gone through the experience of being in an ICU while another child coded, and the last thing I want is for Colin in his state of greater awareness to go through that without one of us at his side.

There is a red-eyed family here with a little baby that has an I.V. in its head. In the waiting room, they told somebody that they had to make “a decision.” We are all here for different reasons. As grave as Colin’s surgery was, we yet again come face-to-face with somebody else’s situation that appears so much more tragic.

Colin is doing so well and his prognosis (presumably) has improved dramatically with this successful surgery. Any apparent complaints that we may have are tempered with our knowledge that these are creature comforts and that another child may tumble into a more desperate crisis in our midst.

Creature Comforts

While we had been led to believe that Colin might get his own room (there are some rooms behind glass doors), he is in the open area in the chaos of this old school ICU. We are relieved that he is doing well enough to leave tomorrow. Initially, we had thought we would stay there a minimum of three nights and possibly much longer.

At NYU, it was easy to identify the bed spaces in the four-bedded pods. However, at Le Bonheur, the patients seem almost randomly scattered in a room that is cluttered with medical equipment and supplies, records, computers, and cloth screens on rollers. The staff is certainly competent and it is no criticism of the care we have received, but the environment is hectic though (thankfully) we don’t seem to have any screamers in there at the moment.

Even so, the cacaphony of hissing and beeping is enough to keep somebody awake without the ridiculous “no sleeping” rule. We get a hardbacked chair that we are not allowed to fall asleep in, though they are welcome to rouse me awake and see how I respond, should it happen.

We anticipate staying at Le Bonheur through the weekend and hope to return to St. Jude on Monday or Tuesday. It is possible that we could be home at the Target House in a week or so, according to Dr. DeWire, who seemed quite pleased to see Colin looking so good. These facts us alone are a pleasant surprise, much less the prospect that we could proceed to radiation with no reservations about the disposition of Colin’s tumor.

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 [...]]]> 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.

This illustration of the brain gives some reference for the location of Colin's tumor

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.