Counting the Years

After the absentee winter thawed into spring, Colin returned to Memphis for his four-month check-up. This visit marked two years from the end of radiation and a juncture I hadn’t dared contemplate when we were still at St. Jude. We are also nearing his fifth birthday, simultaneously the third anniversary of his diagnosis. These milestones have snuck up on us, with the pleasantly mundane realities of daily life overshadowing the gravitas that cancer tends to impose.

I am circumspect enough to wonder if I should give these moments special weight; after all, each day deserves to be cherished in its own right. Nevertheless, we stand in awe of Colin’s incredible adventure, and anniversaries lend themselves to this excusable indulgence.

Colin has improved so dramatically that we now see the light at the end of the tunnel in various realms. His St. Jude physical therapist, who has always hedged her response to our questions of when (if ever) Colin would start walking on his own, giddily expressed her confidence that he will reach his goal. More importantly, he is confident in it himself, and he is the one driving the bus. I recently asked him what he’s going to do when he gets big, and he responded, “Walk by myself.”

With these words, Colin relieved us of the burden of carrying hope forward, dragging it along so that he could follow our lead. We no longer need to serve as the motivational engine; furthermore, if that goal resides in his own bones, he will reach the mark more quickly to boot.

In his speech evaluation, Colin tested within the normal range for his age in expressive speech and other important measures. For years, we excused his delays as an understandable side effect of months of being completely non-verbal, followed by an even longer period of strangled articulation. With half of his face and mouth recovering from paralysis, his muscles and nerves are still making up for lost time.

We have clung to the wispily thin straws composed of the words, “He’ll catch up.” But Colin is catching up. His speech is still garbled, but we hope that critical tweaks to his hearing are going to give him the needed boost to further bridge the gap. The more important point is that he is attempting to express himself within the normal expectations for a child his age, even if people have trouble making it out.

A Quick Tune-Up

Although the common term for a visit to St. Jude is a “check-up,” it is really more of a tune-up for Colin. We adjusted his orthotics and ordered new ones. After sensing some issues with his hearing, we added an audiology appointment and discovered new deterioration in key frequencies of his hearing that had formerly been completely normal, so his hearing aid has been adjusted accordingly.

In our endocrinology appointment, we discovered that Colin’s growth velocity has slowed significantly. While he’s been growing, it’s not fast enough and he seems to be reaching a plateau, so it’s likely that he’s deficient in growth hormone. Dr. Gajjar surmised that his thyroid was likely affected, so we’ve run some labs at home to make sure he is adjusted properly and gets his synthroid dosage tweaked before we do comprehensive growth hormone testing in four months. Dr. Gajjar’s hunch was correct that the thyroid, probably damaged by radiation, isn’t working properly and needs some help, though the good news is that the pituitary gland is doing its part to tell the thyroid to get its act together.

While none of this is welcome news, neither is it devastating. All of this is addressable, and after a respite from daily medication, it was surprisingly easy to teach Colin how to swallow a pill and we (not including Colin) are prepared for the eventuality of daily shots. While there is no special urgency to the growth hormone issue, the endocrinologist explained that age five is around the time they want to start it if there is a deficiency. Radiation is the likely culprit of these new changes, though it doesn’t really have any bearing on how we respond. Radiation being the only known effective treatment for ependymoma, it’s not like we ever had an option of withholding it.

The Bottom Line

As far as we can tell, the price of some hearing and endocrine issues has bought us what we wanted, since Colin’s MRI looked great. The historic area of concern on one side of the brain stem, which Dr. Gajjar proclaimed looked more dead and shriveled during the last visit, has become even thinner and better defined.

Victories in ependymoma are won stepwise, not all at once. We rejoice in the so-far-so-good result and remain cognizant that the future is not certain. Despite his complicated medical history, Colin is a robust and happy boy whose health and physical well being are on the upswing.

Hole in the Neck

There is a new series of PSAs about the perils of cigarette smoking (is the problem really that smokers don’t know it’s bad for them?), including one spot that features several people who have had tracheostomies. A year past Colin’s decannulation (removal of the trach), this ad stirs a complicated set of emotions. There is no doubt that Colin needed the trach, but I harbor no fond nostalgia of that time. If anything, it spurs a deep-seated memory of constant worry and fatigue that itself inspires me to marvel, “Can you believe what life was like?”

When you don’t dare look forward, looking back comes as more of a shock. Just like the process of childrearing, the sleepless nights and long hours of holding a sick child seem to hang in stasis when they are taking place, yet we quickly become detached from that reality once the baseline shifts. So it is for me to contemplate the rigors of chemo, the constant battle with diaper rash, or our day-to-day existence at St. Jude that is now part of a different era in my life.

Hand-in-hand with the positive revelations of Colin’s improvement over these years is the memory of how scary and different those times were when Colin couldn’t talk or hardly move. Unlike the people who often tell me they don’t know how we do it, I do know, but that knowledge is hard won. The answer, the trick, is that it’s not actually the version of your life that you knew before diagnosis.

When something happens to your child, everything turns on the dime and you take on the mantle of a stranger. This one fact transforms your life and you have to get used to the idea that this kind of change can happen again and again. Just as I have transitioned back to something that looks and feels more normal, I know that I can adjust to another shift, whatever that may be.

I, too, was a person who couldn’t contemplate the idea of one of my children getting desperately ill, but that person remained in horrified ignorance while another version of myself emerged. It’s like waking up into a dream flying in midair when you realize that you can do something simply because you are and the how isn’t immediately relevant.

With the trach, I now have the luxury of remembering how much it really sucked – at the time, it was my reality, and I couldn’t afford to pull myself into a downward spiral. Nevertheless, I feel guilty because there are worse things to manage, and many parents will never have the option of not taking care of a trach as long as their children are alive.

For our sake, a year after we were finally able to pack up the suction machine, “go bag” (emergency medical supplies) that shadowed Colin for more than 18 months, we are given leave to finally and definitively turn our backs on all that equipment. (Every single time I get on a plane with Colin, I’m thankful to be done with that damned trach.) Dr. Thompson made us hold on to everything for a year just in case Colin (gasp!) needed to be retrached.

Eight months after Dr. Baum closed the old stoma, Colin’s respiratory health is much improved. He is actually getting normal minor illnesses without looking like he has to go to the hospital. His visit to Yale last fall with RSV was hopefully his last inpatient stay of that ilk. Dr. Thompson had counseled that Colin’s secretion management would improve as he got bigger, and I also suspect that he improved neurologically a bit.

Share the Wealth

In toto, we couldn’t be happier or more amazed at how well Colin has been doing. This last visit underscored our feeling that Colin is not just our child but a child of St. Jude. Colin and I ran into Eunice, one of the nurses who took care of him inpatient. She works overnight on the weekends, so we normally wouldn’t cross paths during a trip. Eunice was delighted to see him looking normal and happy and wistfully added, “I never thought I’d see him again.”

Eunice didn’t morosely mean that he wouldn’t make it but simply that his orbit would not cross hers. I was so thankful she was able to see the happy results of her work and love. We also ran into Dr. Joshi, the cardiologist who diagnosed Colin’s dangerous heart infection. At the time, Colin was using his walker, chasing Aidan down the hallway with wild abandon. “There goes your fungal endocarditis,” I proudly told him. He, too, often isn’t able to follow up on kids after they go home and told me he was happy to have a nice lift to go into the weekend with.                                                                    

Our need to spread the love isn’t limited to just clinicians. In the cafeteria, I ran into a dear friend, the mom of a patient who is now back at the hospital for his third round of treatment, each one for a completely new and different diagnosis.

Chase is recovering from a bone marrow transplant for a pre-leukemic condition he acquired after the year-long treatment for osteosarcoma. They discovered bone cancer in his skull a year after he finished up surgery and radiation for craniopharyngioma, a brain tumor that is technically benign but more dangerous than some malignancies (this is actually an example of why the term “cancer” is less useful in the brain than it is in other locations).

Melissa and I enjoyed a serendipitous reunion in the cafeteria where she was able to share some of the rigors of Chase’s course. Bone marrow transplants are no picnic, particularly for a body already stressed by previous treatments. The last few months have been bumpy ones, with Chase ricocheting in and out of the ICU, and Melissa’s eyes swelled with tears as she told me that it gives her hope to see how far Colin has come after being knocked down so hard. Chase has had both bad and good days since that serendipitous encounter; I can only hope that thoughts of Colin brightened the darker ones and that Chase’s own miracle story has buoyed another family.

Too many children with cancer can’t outpace their diseases, but there is always hope. For some, it is the days, months, and years that they wouldn’t otherwise have. For others, it is that the next wave of families hearing that unbelievable news will have a better chance. For families like ours, there is the hope of cure, even in the face of dire odds.

I know of stories that are amazing even if they have a tragic end. Colin’s would be one of those, though of course we want to see his trajectory continue its upward trend. As it does, it would be selfish not to share his unlikely adventure because everybody needs even a kernel of warmth and light to ward off the spirits in the depth of night.