First, I offer apologies for the unintentionally long silence. (From a technical standpoint, if anybody visited the site in the last few weeks and got a malware alert, Google was correct and I have fixed the website, so it is currently safe.) The very short synopsis is that Colin is doing great and his last trip to St. Jude in August went well. However, so much time has passed that we are literally back in Memphis and Colin is in his MRI, so this seems like the ultimate deadline to update for eight months of excitement and change. In Colin’s world, that is a lot of time.
A few days after the last post, Colin celebrated his fifth birthday and three years since his original diagnosis. One word: awe. At diagnosis, I knew this birthday was not guaranteed and that kindergarten itself would be a milestone. To make matters even sweeter, we got to celebrate without an asterisk – not hoping that we could simply see the day but truly enjoying yet another point on the continuum of his life.
The Chronology of a Season (or Two)
Since the spring, Colin finished pre-school and graduated from both his special ed and Head Start classes knowing that he was making the big leap to kindergarten. He had started in school when he still had a trach and left nearly walking on his own. The Head Start experience was rocky at the start, since we had pulled him over the winter because of the risk of exposure to infectious diseases, but it ended on a strong note.
Special education and Head Start provided a yin and yang to Colin’s school day and demonstrated his ability to be integrated into a mainstream classroom. In Connecticut, he had the option of splitting his kindergarten day, and we all wavered on our thinking on this because he does still need extra attention to get academically on par with his peers.
We started the summer with two procedures, one for each of the boys. Even after a closure last August (2011), Colin’s trach fistula still had an open tract. It wasn’t a big deal and Colin loves Yale, so Dr. Baum fixed it up and the scar looks really quite good. As expected, it was hard getting him to leave the PACU since he likes the place so much.
The following week, I took Aidan to Boston to have his lower esophageal sphincter dilated. Earlier in the year, he was diagnosed with achalasia, a very rare swallowing disorder that occurs even more rarely in children (this disease is much more unusual than Colin’s brain tumor, though not life threatening). The definitive treatment is surgery, but at this stage of his disease and given his age, his doctor at Boston Children’s suggested that we give dilation a shot at least twice, though he is hopeful that the one time will do the trick for the time being. Achalasia will be a lifelong concern for Aidan and the chance of him requiring surgery at some point is very high, but we would be happy if he could make it through childhood without going that route.
There is no particular relationship between his disease and Colin’s, but many people have suggested that we start buying lottery tickets. We do have very good bad luck, but I have no idea how to translate that into good good luck. At any rate, it feels like we already cashed in.
Over the summer, we made our third trip to Camp Sunshine in Maine. Both the kids had a great time and Colin palled around with his buddy Jacob, the two of them sharing a wagon for jaunts around the campus. Since they both had one-on-one counselors, they were able to explore on their own and spent a lot of time in the pool.
I don’t think I ever see Aidan as comfortable as he is at Camp Sunshine. Unlike his little brother, he is not a social butterfly and it usually takes some time for him to develop connections with people. We are easing him into the sibling-oriented programs at camp where he can find a voice for those feelings or even just understand that they are there.
The biggest news for the summer is that we moved our family back to Ithaca, NY. Aidan was born there and we had lived there until he was a toddler. My mother is still in the area and, as a mentally ill octogenarian, needs more attention than we can provide from afar. Moving back made the best sense because we have always loved Ithaca and we knew it would be a great community to raise the kids in, particularly a child with disabilities.
The summer ended with a bang as we moved on a Monday and then flew to Memphis for scans on the Sunday, with Colin starting school only a few days after returning. It all worked out well and the boys have flourished in the new school, Northeast Elementary. Part of the rationale for the timing of our move, which in other ways was not ideal, was to do it at the juncture between pre-K and kindergarten so we would only have to deal with changing schools once. It doesn’t hurt that Ithaca has full-day kindergarten, compared with Danbury, where it is only provided (randomly) for some children.
Transitioning normal kids can be tough enough, but Colin drags with him the complexity of an army of therapists and professionals, not to mention Mrs. Hansen, the personification of the archetypal kindergarten teacher. His wonderful aide, Emily, could be called his personal assistant (the only person who has a handle on his entire schedule) and serves as the glue that joins together the pieces of his day and makes school more than a patchwork of therapy sessions. We knew that Colin would enter the school system as an intimidating unknown; on paper, he still looks like a mess and he does demand a lot of attention to help him reach his full potential. In person, he is a whole other ball of wax.
We also knew that Colin would pay back that effort with dividends, as he always has. During the first half of the school year, he has continued to make leaps and bounds. He challenges all of us to fully understand what is going on yet always seems to forge ahead with a shrug and a funny face. “Take a picture of me!” he demands when he has a particularly fetching chocolate beard. Among his peers, he continues to make friends and is magically popular.
Through the fifth grade buddy program, where the fifth graders mentor for an individual kindergartener once every two weeks, Colin has inspired the attention of many of the girls; a group of them apparently relishes giving him hugs during the short period that their recesses intersect. Aidan admits, with a sigh, that everybody at school knows who Colin is.
Just Another Kid. Kinda.
Early in the year, I asked Colin if he thought he was different from the other kids and he said yes. I subsequently asked if he thought he was the same and he said yes. More recently, when I explored the same line of questioning and asked him to explain why, he told me that it was his hair and eyes.
There is no doubt that Colin is aware that his physical differences (not his hair and eyes) are unique in his classroom and unusual among his peers in general, yet it seems that he doesn’t believe they make him different at the core. He sees himself as any other kid and has an almost supernatural confidence of his own identity. While this was always an element of his personality, we can only imagine it has been bolstered by his experiences. It also seems like something that will buoy him as he grows up and may face less diffident reactions from his peers regarding whatever residual effects from treatment remain.
Today, in the airport, I watched him walk (independently) with his uneven gait, right foot askew and the entire right side sagging. In a small child, it is easy for strangers to see and respond empathetically to the evidence of perseverance and unspoken trials that someone so young should not have to endure. I mentally aged that body by decades, and looking at this adult man with a weird walk lurching around the airport, I surmise that many people might have a less-than-kind response to his disabilities.
I’m far from predicting that Colin’s gait will be the same as it currently is, just larger, but he certainly will have some permanent affect of treatment. Knowing this, I sense he will need to wield his social skills adeptly to navigate the world without feeling minimized in it. Especially knowing his character, I am less worried than aware – and again conscious that this situation has made me contemplate issues that I used to have the luxury to ponder as a hobbyist.
I say this not to bemoan humanity’s lack of compassion or fear of the unknown. The latter, certainly, has a rational element of self-preservation to it. I just know that a man who lurches around the airport with an easy smile and an air of self-confidence will forge a different path for himself than one with poor personal hygiene who avoids eye contact.
At five-and-a-half, Colin is now the age Aidan was when Colin was originally diagnosed with ependymoma. On this point, I marvel at how different the boys are in their nature and how different our expectations are for them. I always knew that the boys would be different from each other, and this kept us from pushing harder on issues like Colin’s delayed speech acquisition.
The Spread
In addition to comparing Colin to the same-age Aidan, it is impossible to not wonder what he would have been like if his life had followed a more normal trajectory. I don’t have a picture of what that looks like, nor do I long for that phantom child. I was taken aback when a nurse case manager told me that I was mourning the loss of my child and that this was perfectly normal. However, I found that allowing this process and giving it a name has better enabled me to embrace whatever Colin is to become without burdening him with my own expectations.
More than anything, I wonder what it would be like to parent two physically able children or to have a life that is less dictated by the varied busywork that surrounds our boy. It is less a theoretical reminiscence than a curious thought experiment that strikes me when I see families with similar aged children going about their day or even children younger than Colin who are able to do “incredible” things like nimbly prance around a playground. For a moment, I have to reorient myself that this random two-year-old is not an astounding wunderkind but is actually a typical child engaged in perfectly normal activities.
And One to Grow On
During Colin’s various tests and appointments in August, he went through the dreaded growth hormone test that involves a series of infusions that can cause extreme discomfort. The worst part of it for us is that it required two working IVs, and we rarely walk out of assessment and triage with one. Indeed, the first failed immediately, but the endocrine nurse was able to place a solidly performing peripheral IV and bravely forged ahead with the testing despite flying on one engine.
The upshot of the test, as expected, was that Colin is short (less than the 3rd percentile for his age, compared with the 90th before he was diagnosed) and he’s not producing enough growth hormone. Addressing this involves a daily subcutaneous shot, which seems 50% better than the lovenox shots we used to administer, which were twice a day. Furthermore, we get to rotate sites (arm, thigh, buttocks; I skip the belly because he’s got so much going on there as it is) and this drug doesn’t cause bruising, nor does it feel like it burns on injection.
Colin wasn’t too excited about the needles but found that they don’t hurt too much, particularly in the meatiest part of his body, his ample derriere. He eased himself into the new regimen by finding a pointed stick at school and calling it “my shot” at home. For a while, he would “inject” himself at the preferred site with his shot before I would do the real deal. Now, the routine involves me counting backwards (three-two-one-zero) and ends with him making dramatic faces completely for show, particularly when he has an audience. He will also exclaim, “Ow! Ow!” while doing it though afterwards admits it didn’t hurt or didn’t hurt much. With all of his hamming, he would have made a great silent movie actor.
The upshot (no pun intended) is that he has grown, as measured by the distance between his penis and the rim of the toilet bowl (more on that to follow). This is not the most conventional means to gauge stature, but it works and it’s about par for the course for us.
Even more importantly, Colin’s endurance and focus at school have increased, and this has appeared to have accelerated his development in pretty much every realm. These days are really so easy because he has failed to plateau at anything, and it remains impossible to envision what his future looks like. This blindness frees us from expectations and gives us one of the great gifts of this adventure.
I Have to Go to the Potty!
One of the big milestones of the summer was the huge step of potty training. We had been working on this from before his diagnosis and I started up again as Colin was finishing up chemotherapy. With so many years of stasis, we questioned whether he was physically capable of elimination awareness and control, though he seemed to be continent overnight.
It was all a great puzzle that could only be solved by Colin himself, who finally embraced the concept once we linked potty success with video games. More accurately, we withheld video games when he had an accident, and only a few of these incidents greatly improved his accuracy in reporting. One of the shameful realities of parenting is that we seem to be most successful when our lever is withholding something he probably shouldn’t be overly exposed to in the first place.
Colin now rewards us with loud exclamations of, “I. Have. To. Go. To. The. POTTY!” with each word enunciated clearly and the last uttered with particular exuberance. For whatever reason, I can hear him say it on the other side of the house, though part of it may just be that my brain recognizes the cadence. We have made some progress in getting him more independent in toileting (sweatpants help a lot) and the little extra height does make a difference in accuracy.
On a practical note, it’s great to have Colin out of diapers and, as with all such things, I look back on diapers like a visit to a familiar but foreign land whereas, at the time, it seemed like we would never be rid of the things. Of course, this is a meaningful step for us in the trek towards normalcy. It is difficult to articulate how each of these incremental improvements has brought us closer to the idea that Colin really is a regular kid.
Another such step was the removal of the beloved feeding tube. I use the word “beloved” without sarcasm, since this was my favorite appliance. It caused little discomfort or complications and it gave us incredible flexibility in terms of feeding him and administering meds. However, after Colin showed us that he could swallow a pill and managed to stay hydrated through the summer with no liquid boluses, it seemed like the logical next step.
My smugness about the utility of the feeding tube was quickly eradicated when Colin got a stomach bug last winter and I was unable to keep him hydrated since he threw up everything I poured in his gut. Aha, Miss Smartypants. The Dude’s stomach does not always abide.
In a very mundane procedure, I removed the tube for a final time (I used to change them on a regular basis) with a wound care nurse providing special materials and instructions for keeping the site clean. Unfortunately, our best ministrations and high tech materials have not caused Colin’s body to swallow up the former hole, so we’re planning on having surgery done to sew up the unneeded orifice and keep it from leaking all the time. The only advantage to the current system is that it is now impossible for Colin to sneak anything made out of chocolate, since it soon makes itself known via the old feeding tube tract. Funny and gross.
Sympatico of Tragedy
On a final note, we were deeply affected by the shootings in Sandy Hook. We have many friends in the area and know a number of people who were connected in one way or another with families who lost children. One girl in particular had been at Aidan’s Montessori school before entering public school.
It is all so very sad and makes people feel helpless, much like pediatric cancer. There are a lot of parallels, though the shooting took a cluster of kids very abruptly; cancer’s course is usually much more slow and deliberate. Either way, we are unfortunately familiar with the process of grieving that individuals and families go through.
In some ways, the tragedy in Newtown has forced more people to see the lives of children as very fragile, something we learned with Colin’s diagnosis and treatment. I say this not to be high-handed about it, as if we somehow invented this perspective, but merely to iterate that the cancer community “gets it” and that we understand, very deeply, the gut-wrenching sensations that come with the loss of a child – or a near miss.
We know a lot about the urge to “do something” that drives people to put 20 little stockings on the porch or, more constructively, conduct acts of kindness in honor of the victims. We know something about the extreme discomfort can rise up around families who have lost their children and of the family’s desire, paradoxical to this common response, to have the lost child discussed and remembered. We know of survivor guilt and pointlessness of asking why one is spared while another is taken.
At the same time that we feel the tragedy of the shootings, we also feel the weight of the loss of more children within the ependymoma community. It is easy to get buried within all of this, yet it is important to not let that happen. I accept that these are among the long list of things that we do not control; on the contrary, the list of things we do control is vanishingly small.
However grim reality is, people can choose to find comfort in the positive, the humorous, the heartwarming, the ridiculous. Joy and laughter do not mock grief. In the absence of one, the other cannot be shown in its true light. By this, happiness dulls the sharpness of suffering and sadness makes the good things in life that much more sweet. Yes, these are trite observations in the realm of philosophizing, yet they are strangely useful to describe the positives that people draw out of crappy situations.
Onward and upward or, at the very least, onward. We rarely get to choose the speed and direction, so might as well enjoy the ride.