Colin may have a budding career as a Geico caveman, or perhaps a more mundane sideshow act as a wolf boy. We have noticed thick hairs sprouting on his forehead, giving him the beginnings of uni-forehead (forget uni-brow — we’ve moved way beyond that). Dark whorls grow like moss on his back.
The new hirsuteness is one side effect of the steroids, which are finally being stepped down. Although they have been important in controlling swelling related to the hydrocephalus and surgery, it is time to wean him from the medication. Because Colin has been on them for so long (over a month now), they are bringing in the endocrinologists to manage the decrease.
As a parent, it is reassuring to have pediatric specialists of various disciplines available for Colin’s treatment. It is also daunting to have so many new faces and names visiting him bedside. Each discipline has its own collection of practitioners, usually including a faculty member physician, a fellow, and one or more residents.
The pediatricians on the floor present additional complexity, as there are also senior medical students circulating around. It remains unclear if they have the ability to do anything besides run and get somebody else (sometimes useful in and of itself) or act concerned (beneficial if not overtly useful). While our participation in the pedagogical experience represents a valuable contribution to a future generation of doctors, there is a certain cost to it as well.
To make matters worse, we have evidently been switched from pediatric care under the oncologists to the neurosurgeons, for some reason involving a change in the covering pediatricians. Therefore, whatever doctors/proto-doctors we have been working with are no longer the ones that are responsible for Colin.
On Monday, we met with Dr. Magill, who comes from the in-patient rehab facility, Rusk. In addition to coordinating care there, he supports rehab during hospitalization. Colin is now being seen daily by a physical therapist, occupational therapist, speech therapist, and psychologist. Martha, one of the local music therapists, also works with him daily (Rusk has its own child life staff, including music therapy).
The famous swallowing study is now scheduled for Wednesday. Earlier, the thinking was to put it off as late as possible, but now that Colin’s swallowing recovery looks fairly slow, they’re leaning towards installing the G-tube before he goes to rehab so as to make the best use out of his 30 days of acute rehab that are covered under insurance.
The idea of marring his body with the tube, which will surely leave a permanent dimple, is difficult to digest (no pun intended!). However, it may be the best choice for him and he certainly doesn’t enjoy having a tube down his nose. From the standpoint of his comfort, if his need for tube feeding is at all attenuated, the G-tube makes sense.
All day, Colin has been salivating profusely. Although Luigi, the neurosurgery resident, pointed out that he has facial paralysis that lends itself to drooling, saliva has been escaping from both sides of his mouth nearly equally. Given the basic input-output equation related to his secretions, it is clear that either he has been outputting more saliva or is doing a worse job in swallowing it.
Thus, hopes for the necessary miraculous improvement in swallowing are small indeed. Colin is able to swallow to some degree, but he has to do so competently enough to not just take in a mouthful without aspirating any food but actually maintain a nutritionally sound diet. Therefore, if he could only eat very slowly, he would still need tube feeding.
On the other hand, we now realize that Colin has likely been experiencing nausea all day, which could also account for the increase in saliva. We suspect that this could be due to nystatin applied to his tongue from thrush (the steroids increase the risk of this). They decided to temporarily stop the feed and give him anti-emetics and see how he does.
Colin has been unsettled in the time since we identified the nausea (he regurgitated a bit of the feed). Compounding his own internal discomfort, another patient in the quad is quite miserable and moaning. When relatively calm, he sounds like Dorie from the movie Nemo when she is speaking in whale. However, his discomfort periodically reaches less comical and distinctly painful pitch at times.
Life in the quad always relaxes when there is at least one open bed and is simpler when the patients don’t have acute problems. Every bed generates its own native sounds, those that are organic and others related to entertainment and chatter. One patient has baby music, another Yiddish programs, and Colin’s area radiates Handy Manny and other animated shows. We were relieved when the teenaged boy who spent all night watching Spongebob and playing video games was finally discharged.
On Monday, Mom had the opportunity to sleep at Ronald McDonald House. Aidan had no excuse to stay up late, since Mom was anxious to maximize the use of that quiet sanctuary for sleep. The hospital is fine for working and writing but less ideal for rest.
Wednesday is the day the neuro-oncology group’s weekly tumor board meets. They will discuss Colin’s case and provide their recommendations for his treatment with the understanding that the information is not perfect. For example, Dr. Allen said that the pre-second-op scans that show enhancement in two places on the spine are not definitive for disseminated disease, since it is possible that the enhancement is a surgical artifact. He hadn’t seen the original pre-op scan that included the full spinal, so the board will be taking a close look at that.
Colin will get a spinal tap done (possibly) on Thursday, which is the day they usually do outpatient taps but can accommodate inpatient procedures if there is availability in the schedule. A positive cytology finding means that there are cells in the fluid and therefore there is disease in the spine, but a negative cytology finding means that they can’t quite be sure.
Confirmation of disseminated disease, presumably through the scans (since the spinal tap is only definitive if it detects cells), means that Colin will probably receive a more aggressive chemo protocol. Generally, ependymoma calls for a less aggressive protocol, but metastasis is fairly uncommon. This is all a matter of research for the oncologists.
Also, Dad heard of an intrathecal radioimmunotherapy program at Sloane Kettering that Colin may be a good candidate for. The new therapy uses antibodies to deliver targeted radiation to cancerous cells, useful in cases of disseminated disease because the patient doesn’t have to be exposed to widespread radiation. This isn’t generally used for ependymoma because of the rarity of dissemination and the efficacy/safety of focused radiation even in children under 3. The therapy can be used as a replacement for chemo if there are small enough amounts of residual disease, or it could follow up chemo.
The doctors at both institutions work well together and they have evidently referred other patients there, but we will certainly raise the question ourselves when the time comes. It has only been used on recurrent disease so far, but Colin’s case may be a good one, especially once we get a definitive idea of what is going on in the spine.
The idea that the disease has not disseminated into the spine is an attractive one, but not something that we can hold onto. For one thing, it is a thin straw at best. For another, hope that is founded on the idea that the thing we dread and fear simply isn’t there feels childish in a way. Also, several professionals who saw the original scan did identify “suspicious” areas, so there was no particular conflict among the tumor hunting pros.
The real hope for Colin’s future is that all of the people involved with his care will help carve the right path for his treatment and that he will be strong enough to endure it. Cancer treatment is a barbarism to its beneficiaries, and many current innovations are focused on ways of making the things that work do so less toxically and painfully.
They say that children are the most resilient patients, but repeated fights against recurrences leave their marks. It is not capitulation as much as it is battle fatigue. Of all things that we see, this is the hardest to imagine for Colin — and all of the children who manage serious illness — as he grows up.