Indestructible

Before launching into the latest long-overdue update, I want to post information about the 2011 St. Jude Give Thanks. Walk that is taking place across the country this weekend. We are going to New York City on Saturday, November 19, to support the hospital in a walk across the Brooklyn Bridge. If anybody can join us or participate in one of 80 cities across the country, we encourage you to do so. Also, please consider a donation to St. Jude (our fundraising page). Not only do we know from personal experience what an amazing place it is, but independent research demonstrates that St. Jude is a quality charity. The hospital received a top rating on Charity Navigator because it has proven that dollars donated equate to dollars spent helping the kids. Now back to our regularly scheduled programming…

 

After getting news of another stable scan at the end of June, we returned home to start off a busy summer. First, we spent a week at Camp Sunshine in Maine, which provides a week of family camping fun for families with children who have cancer and other serious conditions. There are two brain tumor weeks, with the earlier one focusing more on high-grade tumors.

 

Of course, we had a great time there and the kids had a blast, each doing activities with his own age cohort. Colin got his own helper, Sam, who was there with her brother Brian and mom, so it was a family affair as we all got to know each other. Coincidentally, Brian was one of Aidan’s counselors.

 

For the parents, it’s also an opportunity to connect with other families, especially those that are dealing with more serious side-effects or treatment courses. Naturally, the camp tends to attract people who are looking for more interaction within the brain tumor community. Families with children who suffer few complications or medical setbacks are more likely to return to normal life and may not feel as pressing a need for support. We were awed by the other families and their stories, which were tragic, inspiring, humbling and uplifting.

 

Camp Sunshine is one place where Colin’s deficits were nostalgic for other families (“do you remember when you had a walker like that?”) rather than freakish. Ependymoma is the third most common brain tumor diagnosis in children, and we met quite a few other ependymoma kids.

 

In particular, we met one family who is part of our online community, whose son’s course is uncannily similar to Colin’s. Jacob and Colin are so similar that some people started calling Jacob “Colin” during our week there! The boys are close in age and age at diagnosis, with similar deficits. Jacob’s trach came out in June (Colin’s in April) and both had incomplete resections with chemo before a final surgery.

 

Probably the weirdest thing is the fact that Jacob and Colin share facial gestures and mannerisms, which we can only speculate is because they suffered nerve damage in the same areas. If there ever was a physical reminder that we are not alone, it presented itself in a red plastic wagon with two happy little boys who have been through the wringer. I still don’t know if a grin looks bigger on one of these kids because it means more to the observer or because it is lit more brightly from within.

 

I could go on and on about camp, the wonderful families we met, and a week full of fabulous experiences. We are incredibly grateful for the opportunity to go to Camp Sunshine. On top of everything else, we bookended the week with stops in Boston to see some college friends of mine where Aidan delightfully, I meant to say horrifyingly, decided it was a good idea to climb up to a second floor deck and then jump back to the ground.

 

We returned home to summer school for Colin and a smorgasbord of summer camps for Aidan. He did outdoor camp complete with a waterfall and lots of puttering in mosquito-filled woods. Then there was soccer camp with the British Challenger soccer people (I wrote about it last summer in “No, No, No, How are You Doing?”) and art camp at the YMCA’s art center. He had done a week of Legos/crayfish hunting during the same week that Colin and I went to Memphis for scans, and I was cursing myself for picking so many different things and having as many forms to fill out.

 

A Nip and Tuck

Between the end of summer school and the beginning of the regular school year, we scheduled two surgeries for Colin. The first was a minor neurosurgery to remove now-useless plates from his head (they’re called plates but they’re not very big or plate-like and they disappointingly don’t set off metal detectors at the airport). I thought there were three, but there were five and one stuck out a lot and had bone growing up around it. It was a fairly quick procedure and extremely mechanical in nature, basically involving power tools and a lot of antiseptic.

 

Watching Colin looking miserable in recovery, I regretted putting him through the pain of the procedure, since it was not strictly necessary. However, Dr. Mohan assured us that the one plate had to have made it difficult for Colin to find a comfortable position to rest his head in. The Frankenstein scar certainly got Colin a boon of new shocked looks and comments when we went out in public.

 

It’s always a surprise what people will say (“What happened to him?”) with poorly contained horror in their voices. We decided to say that Colin is a zombie, and the boy now cheerfully plays along by exclaiming, “Brains!” Encouraged by conditioning, he pretty much says it whenever anybody says the word “zombie,” though it’s an in-joke that can get awkward to explain.

                                                           

The scar started out like a gnarly raised rope plastered with what seemed like a thousand steri-strips that took weeks to come off. It has healed to a pink curve with only a small centipede visible below the hairline on Colin’s neck. Based on past experience, this scar is large but will be well concealed once his hair grows back. The night before his first surgery, I remember looking at the back of his neck and thinking this was the last I would see his flesh pristine.

 

That kind of sentimentality seems so useless and maudlin now, but I was legitimately in the process of mourning the child that Colin had been and accepting whatever his fate would be. At the time, I clung to the vain hope that we could limit our interventions and that he would return to normal largely unscathed.

 

Of course, the truth was laughably far from that, and the child we have in front of us today is an absolute marvel. I can’t compare against a cancer-free version of Colin, but I know we have ended up in a very good place that we couldn’t possibly have envisioned while we were on the other side of this mountain.

 

A more minor but much more meaningful procedure was the closure of the fistula left over from Colin’s tracheostomy. I have discovered that a hole that we put in a person that is being used for something is called a stoma. When it’s just there and not being useful, it’s a fistula, which by definition is an unnatural passage between two parts of the body. A fistula is an abnormality and a stoma is a tool; I had gotten used to the word stoma and was alarmed the first time somebody referred to that old tract as a fistula, since I associated it with some kind of dangerous aberration.

 

However, this subtlety in terminology is completely apt, and we were intent on repairing an abnormality, albeit one that we caused for the purpose of saving Colin’s life. This abnormality, however useful in previous months, was the last major impediment to Colin’s recovery and this surgery was the lynchpin to achieving normalcy.

 

To say I was excited about the procedure and the implications for Colin would be a vast understatement. Ironically, the operation itself was trivial, a quick scoping and then zipping up the hole. Of course, I describe it very casually, but I know that Dr. Thompson, our ENT in Memphis, created an extremely robust tract for the tracheostomy, cutting back layers of material to prevent the trach stoma from closing quickly on its own (when you want need the trach in place in order to breathe, this can be fatally dangerous). Dr. Baum, the ENT at Yale whose job it was to undo that work, said it was a little tricky and he didn’t have a lot of material to work with.

 

That said, and despite warnings about the inevitable scar, Dr. Baum really did a great job. Our experience at Yale was so pleasant (and literally painless) that Colin wanted to know if we could come back the next day. That’s how much this kid loves hospitals and has learned to trust the countless people who labored to save his life. When I ask him how he feels to see pictures of himself with the trach, he tells me, “good” because it reminds him how the doctors worked so hard to help him.

 

Like so many of these children, Colin is an old soldier of medicine. The nurse who was taking care of him during recovery from the trach stoma surgery told me that, after getting the report about him from the operating room nurse, she went to look at his actual person and immediately wondered if she had the wrong case. He was lying on his side, his back to her, and the first thing she saw was the huge Frankenstein scar on the back of his head from the procedure the week before instead of the new one on his neck!

 

The same nurse told me that Dr. Baum likened Colin to a war veteran who gets treated at the Veteran’s Administration: “Indestructible.” All true, and strangely reassuring. The kid is tough and sweet all at once, and something about the alchemy of his character and his experiences has gotten him through this a whole person. The property of indestructibility speaks more to resilience of the spirit rather than the body.

 

Colin is scarred, not damaged, and his steady trajectory of improvement makes hopefulness easy. So many children that we have met on this adventure have relapsed, progressed or died, and this solemn reminder of the reality of the disease plays counterbalance to the wonderful progress we see at home. When people ask about his prognosis, my response remains the same: “It’s irrelevant.”

 

Stormy Weather

Hurricane Irene blew out the power and blew in the first harbingers of fall, with the leaves starting to change colors after the winds and rain had passed. Like many on the eastern seaboard, we were left in the dark and had planned for a protracted outage, but we were intent on making one particular appointment, which was a modified barium swallow study to assess Colin’s swallowing after Dr. Baum’s hallmark surgery.

 

Although we were still enjoying rustic living at home, the hospital was fully functional and performing its regularly scheduled testing. I didn’t see the first bite go down but the doctor invited me to give Colin another mouthful and watch the results on the monitor. After the dashed hopes and marginal victories of so many previous studies, I was astonished with what I saw, which was a lump of food shooting down his esophagus!

 

Not only did Colin ace solid foods, but he flew through every texture. I had expected him to fail somewhere short of thin liquids with the hopes of perhaps improving a notch in liquid consistency. The next thing I knew, I was hugging this poor stranger, who had never met me before and likely will never see me again.

 

Although I am famously fond of the feeding tube, I am even more delighted that Colin is growing independent of it. Of all the faculties that Colin lost, this was the most difficult to endure. This kid loved food, and he missed the pleasure of it when it was taken away. Every time I watch him eat, and especially when he drinks, I am thankful for his recovery. It is one thing to cling to hope and another to let it go because it is no longer necessary.

 

Getting a Head Start

Walking comes next, and he is making terrific headway. After passing the swallow study, it became possible for him to join the Head Start early intervention program, which is a means-tested program that also supports disabled children. Colin is one of 18 children in his class, which has a teacher and an aide, a circumstance that has forced him to become more independent.

 

Even better, he has started helping at meals, setting the table or distributing food to each child’s place. In this way, he has become an active citizen of his Head Start community. With little opportunity for adults to intervene on his behalf, he interacts with the other kids and has learned new adaptations to his disabilities. He still attends his fabulous special ed class for half the day, but Head Start rounds out his experience and prepares him to enter a mainstream class next year for kindergarten.

 

Best of all, Colin is doing a great job with walking and has even shown us that he can walk for 20 or 30 feet on his own, stopping and starting along the way and even negotiating low-lying obstacles (yes, my heart skips a beat when this happens). He remains extremely timid about walking, but he is already capable of achieving the goal we had set, which was walking independently to Santa Claus. With Christmas setting in at stores before Thanksgiving has come and gone, it won’t be long before we will test his mettle in vivo.

 

The more normal things are for Colin, the better the situation for Aidan. Over the summer, when we were discussing the quandry of retaliating against his brother’s persistent attacks, Aidan suggested, “I can hit back when he’s undisabled.” As much as we secretly relish Colin’s vigor, poor Aidan has had to accommodate his brother’s special circumstances. The saving grace is the fact that Aidan, who is well aware that children die from cancer, sees Colin’s condition as temporary and improving. Also, he’s found a sanctioned means of hitting back through play fighting with foam swords.

                                                           

Another Storm, Another Season

One day, we were driving through a sunlit canopy of trees that glowed like a brilliant impressionist stained glass tunnel. The next, I found myself navigating a treacherous but stunningly beautiful slalom course, small trees and branches arched into the road and kissing the ground, weighed down by inches of fast falling wet snow. By nighttime, the woods resounded with the cracks and groans of trees giving way under the strain of the uncustomary weight of the heavy snowfall held on the outspread hands of autumn leaves.

 

Inside the house, we could hear dollops of snow dropping on the roof like soft bombs. I shuddered at each explosion of sound, dreading the possibility that an overextended limb from the maple closest to the house would finally give up its strength. The onslaught continued into the next day with an ersatz snowball fight from the sky that threatened to pelt anybody who walked within range of the waiting limbs.

                                                                                                       

The trees in closest proximity to the house held out surprisingly well, but the neighborhood as a whole was not so lucky. Unfortunately, this impressive natural marvel also got in the way of our travel plans for Colin’s trip to St. Jude. He had been slated to have an MRI performed on Halloween (boo!), and I had a bag packed with a ninja costume for the occasion.

 

Instead, felled trees and tangles of downed power lines prevented us from leaving for the trip and added a three-week delay to our departure. This is our longest period away from Memphis, nearly five months, and will remain that way until next year; Colin is currently on a three-month scan schedule and then graduates to a four-month schedule before he starts visiting the hospital only twice a year.

 

It still feels like we will be returning home, even though with every visit we see more unfamiliar faces in the halls and a whole new set of patients under active treatment. We are at a place that I could not have imagined two years ago; back then, we were in the middle of chemo, grappling with a dangerous heart infection, and still facing the prospect of residual tumor that was standing in our way of our hopes for a cure. Another year separates us from that time, and I look forward to the prospect of standing on the St. Jude campus and contemplating the previous three improbable years.

 

Even so, I am still hesitant to fast forward in my mind and create a concrete vision of that future, not because I don’t have hope but because I can’t afford to form an expectation. I don’t know of a single word that describes the feeling that I have that replaces expectation. “Cautious optimism” is the closest match; it is more like “realistic optimism,” but that doesn’t even seem right.

 

It’s more like taking the awareness of undesired consequences and compressing all of them into a token and putting the token in your pocket. That token sits there and you know it’s there. Occasionally, you worry it with your fingers, but not so much that you obsess about it. You can take it out, add information to it, but always put it back where it belongs.

 

The token isn’t a bad thing. It serves as a constant reminder, both of the need to remain aware and the ability to simply say, “I’ll deal with whatever comes when it is time but no sooner.” The token might seem a little heavier or more awkward at times, but facts are facts. Needless worry increases suffering, but it doesn’t change the outcome.

 

With Thanksgiving approaching, we are again awash in gratitude. We are of course thankful for the two beautiful boys that brighten our lives but also the many gifts that cancer has brought to our door: friendship, fellowship, meaningful purpose, and a brilliant pole star to help navigate life.