MIDDLE
We are in the middle. The diagnosis and first steps to treat Colin seem far behind us, but the future remains foggy. From this perspective, we still have a strong connection to both sides of this process though, with any luck, we will never reach the terminus.
We marvel with great wonder at how we arrived at St. Jude and into this protocol. It would be facile to suggest that we should have come here straight away, and Colin’s fate would be no more certain. Under a different surgeon’s touch, Colin’s neurological injuries might have been much worse, especially with the benefit of superior pre-operative imaging.
It is possible that Colin will holistically benefit from the marginal remnant of tumor that presumably preserved permanent functioning of his cranial nerves (minus VIII, hearing) and made him eligible for the current trial. While the chemotherapy has seemed like a necessary evil, it may be that Colin falls into the type of ependymoma for which the risk of metastasis is high enough that chemotherapy (or another therapy that treats the entire central nervous system) is obligatory.
Even this we do not know, although we sense that Dr. Gajjar suspects this is the case for Colin. He pointed out to us that the standard treatment for ependymoma, gross total resection followed by localized radiation, still allows a certain percentage of patients to suffer relapses and recurrences. St. Jude is researching which patients are most vulnerable to this according to tumor characteristics, and they apparently have some research that they will be completing relatively soon on the subject.
St. Jude is in the midst of a reformation of its treatment for ependymoma where chemotherapy likely will play a greater role. One of the overriding issues is neurological damage, especially from brain stem strokes. It pains Dr. Gajjar to see Colin suffering neurological injuries, even if they will ultimately prove to be transient. Even worse are circumstances where the surgery causes injuries that prevent proper subsequent adjuvant therapy, which we have commented on before.
We surmise that it is difficult to get established and successful neurosurgeons to pull back their target margins with the knowlege that gross total resections are most likely to evince a cure. Calculating the “right” place to stop seems tricky at best, since both the surgical and oncological perspectives are correct.
Without a good resection, cure is difficult to achieve. Serial resections take their toll on a patient, and it only makes sense that the best long-term outcome results from the minimum number of surgeries with the ultimate goal the radiological disappearance of the tumor, whether the last measure is through surgery or adjuvant therapy.
BEGINNING
Considering the complexity of these musings, it is no great wonder that the initial decision of how to act when presented with the reality of a child’s brain tumor is inconceivably daunting. Even worse, the diagnosis typically happens fairly late in the game and the first surgery is a matter of pressing urgency. That baby’s about to blow!
How is it possible to improve the process of deciding how to act? Although much emphasis is placed on treatment regimens and new technology when considering prognosis, the fact is that parents do play a role in a child’s prognosis and can improve or worsen the situation based on their decisions and the level of care they provide during treatment.
Thus, helping parents make better informed decisions at the outset could help improve the overall statistics for prognosis on pediatric brain tumors (and other ailments — this is equally true for other afflictions, though brain tumors more consistently add the element of urgency). There are many challenges to this process, but it is clear that information needs to come from reliable non-medical sources. Parent support groups are helpful but often too scattered for a novice to really find useful. How does one learn not just about the general possible treatments for brain tumors but about what facilities and practitioners actually manage that type of cancer frequently? What are the relative success rates of the different cancer centers?
END
On Friday, two different patients were discharged. Both are older with a long history with their respective diseases. Although we aren’t familiar with the specifics of their cases, we are very familiar with the family members who haunt the hallways.
One young man is moving into an apartment. A few weeks ago, his mother began avoiding the gaze and greetings of other family members. She has two prosthetic limbs as the result of the same cancer that her son has. Although there is no proven genetic component for osteosarcoma, there appears to be a strong link (not just because of their case), and it is easy to imagine that she dwells on thoughts that her son may succumb to the same cancer that she escaped from in her youth.
We have never seen him, as he is paralyzed and remains in his room all the time. His (presumed; we’ve never confirmed this because she behaves like everybody knows her, as they’ve been there so long) wife said on Thursday that they would be getting discharged.
“Oh, great!” Words, once uttered, immediately regretted. The feeling is more like the response to news that a teenager is pregnant.
The awkwardness worsened when she explained that he experiences pain with every movement. She is nervous about going outpatient, though it was unclear exactly why; she and his mother already provide all of his care in the hospital.
The last we knew, which was some time ago, he was still getting chemo although his situation was dire. Based on his mother’s mood, we surmised that things had taken a turn for the worse a few weeks ago, and now we can only guess that he is going home to die.
There is so little we know about this situation, yet the tragedy is obvious. Our suspicions about his condition were further confirmed when an ambulance came to transport him to his new digs.
At St. Jude, they are not quick to tell people, “There is nothing more we can do for you.” We have no idea who initiated the suggestion to move him out of the hospital and why. From our perspective, there is nothing to analyze but the base grief of it.
The other young man who was discharged will be going to the Grizzlies House for the weekend and then will go home to spend time with family and friends before returning here “for good,” his father said. He said all of this very factually and not with particular emotion until he realized that he was tacitly describing his son’s inevitable descent. He halted, skipping over the words, and finished the thought.
The father is a large man, tall and hefty, weighted down by a not-quite-invisible burden. He circulates through the halls to get out of the room and is quite friendly. Although obviously troubled by his son’s condition, he has always been quick to smile and say hello and generously donated “washing powders” to Colin’s cause.
His wife rarely left the room but seemed to share his affability, though perhaps behind a thicker veil of troubles. She looks a bit like a matronly middle class Anna Nicole Smith, minus the TrimSpa and plethora of other pharmaceuticals. She is worn down, not by personal excesses and stupefied selfishness, but by devotion to a child who is nearing the end of a long road.
Their son’s room had a sign stating, “No BP on right arm.” This is one kind of expression of affection we see in parents experienced with managing medical care for their children.
Junior, his father said, is looking forward to getting out of the hospital (more so than his parents). At the suggestion that his son knows his own mind, especially given his age (18), Dad shook his head wearily in proud capitulation. “Oh, he’s determined all right.”
Yet, in the moment that followed, an unspoken thought hung in the air and swirled away in the breeze: “But determination is not enough.”
This is a sobering thought for those of us in the middle. Colin’s determination is a strength, but it may not be his salvation. Fortunately, we don’t have to worry about this for the moment. We simply can enjoy his spirit and relish in watching Colin paw indelicately at his brother as Aidan cringes in delight (until the hair grabbing, of course). It is the closest to “normal” we have experienced as a family in many months.