On Thursday morning, the neurosurgery team decided to clamp Colin’s drain to see how the intracranial pressure fares. If all continues to go well, we can consider removing the drain and moving Colin upstairs to the regular pediatric unit for continued observation.
As for the question of returning home to the next surgery, Dr. Tobias said it is “unorthodox” but feasible. The PICU doctors also have to agree upon a home care plan that makes sense, but they agree that a trip home will be holistically beneficial for Colin.
We are both thrilled and nervous about the prospect of Colin returning home. We have no idea what his exact physical condition will be at the time. He certainly will no longer have any IVs in him (this is a basic condition of discharge), but he might have a feeding tube if they deem that the only way we can get adequate salt in his body is through the tube.
Colin is currently “wasting” salt; this had been happening through the loss of brain fluid but is also taking place through is urine. It is an expected side effect of neurosurgery, but the salt must be replaced and has been replaced through an IV line. The doctors had been weaning him off of this extra saline boost through oral salt pills (yuck!) dissolved in more palatable food, but this plan hit a big hitch due to some kind of tongue injury that renders highly salty concoctions painful. The exercise of feeding him the salt dissolved in chicken soup broth is painstaking and inexact at best. However, it may be possible to make dietary adjustments if his body’s disposal of salt slows down.
The signs are good for this, as his salt levels have increased with the shutting of the drain (the CSF accounted for a little less than a third of the salt leaving his body). They are currently testing his urine and will monitor that.
After about two weeks in bed, we have no idea how much mobility Colin will have returning home. We will work with the physical therapist to assess his strength and to figure out a home care plan. One of the issues is that Colin naturally protects all areas that are sensitive: the drain in his head and the IVs (now one IV on his left hand and the port in his chest). This somewhat restricts the motion and therefore makes it difficult to accurately assess his physical state while he remains tethered to the various machines.
The more immediate issue that Colin has been facing is constipation. After a healthy post-operative poop on Tuesday, all has been quiet on that front, despite some stool softening medications. One concern is that excessive straining can raise the pressure inside his head, which we’re generally trying to avoid. He received another enema around lunchtime on Thursday and then again several hours later after the first rendered only a single raisin (this is figurative, not literal).
Although this level of detail is probably unnecessary, it serves to illustrate the importance of this issue. There are numerous reasons post-operatively for the constipation, but Colin’s ability to nourish himself and take certain medicines by mouth are critical to his overall improvement. Not to mention the fact that he enjoys eating. The doctors are contemplating taking him off of food until there is some action. They even took an x-ray to assure that there was no other obstruction. When the doctor reported that the imaging found only gas and stools, I asked him what else he was expecting to find… a mouse?
Thursday, Colin was fairly irritable (this can also happen with the steroid he is still taking) with his stomach getting increasingly bloated and tight throughout the day. Aunt Polly and Uncle Steve came to visit just as the second enema was being administered and were the happy participants in the joy over Colin’s noteworthy (though still inadequate) success.
Continued good work on Colin’s part is presumably a condition of release. At least his parents hope so as we are disinclined to perform that service for him. It is difficult enough to observe (though IV insertions and the feeding tube are still much worse), much less perpetrate.
On Thursday, we also contacted the Children’s Hospital in Denver (actually Aurora), which is one of the few North American facilities to study ependymoma. We had an opportunity to talk with Dr. Foreman there, who affirmed that the strategy of performing multiple surgeries before the first chemotherapy is sound. He also helped contextualize the role of the various therapies.
Surgery and radiation are the bedrocks of ependymoma treatment. Chemotherapy is a tool that can help surgically (shrinking the tumors, reducing their blood supply, and making them easier and less dangerous to remove), but it does not play the prominent role that it does with many other cancer treatments.
To this end, having a neurosurgery team that we trust is essential. Drs. Mohan and Tobias know us well as parents and understand our approach to treating Colin. They will perform all of his surgeries in tandem with each other as resources and their understanding of our goals for Colin in mind. This is not an esoteric issue but a real one, as surgery can be plotted but has its own path that may open up opportunity or present unexpected challenges.
The initial surgery was straightforward in a way, since the goal was never total resection of the tumor. They were able to stay within the green zone of safety, since there was no particular benefit to pushing onward. It was never physically possible to access the entire tumor from that approach. The second surgery becomes a little more tricky, as the surgeons will figure out how far into the yellow zone to go.
However, we predict that it is likely that the third surgery will present the biggest decisionmaking challenges for us as parents. The perils of venturing close to the brain stem are considerable, but the survivability from ependymoma is strongly dependent on the ability to completely remove the tumor. The factors that will go into that decision are utterly uncertain and will depend upon the relative completeness of the first surgery, the effectiveness of the chemotherapy, and other things that we are unaware of. It is possible that Colin’s case might require more than three surgeries; Dr. Foreman informed us of a case of a 7-month-old who had four neurosurgeries to treat ependymoma.
To what extent are we willing to take the risk that Colin will never wake up in order to potentially cure his cancer? Even if we completely remove the tumor and irradiate, there is a possibility that the cancer will return, as it often does in the case of ependymoma.
Fortunately, we don’t have to answer these questions right now, but we are aware that we will have to consider them. In the meantime, Colin will go through a lot just to get us to that point. It is a great relief that everyone involved with his case is so supportive of the idea of bringing him home. They understand our desire to serve Colin’s best interests and not simply drive singlemindedly toward a certain medical goal. Ultimately, we think the medical goal will be better served by this approach, but this is not the primary reason for considering Colin’s happiness; it is his medical needs that create limitations on his lifestyle.
Over the coming days, we will be preparing for Colin’s return home. While we aren’t certain what his physical limitations are, we are extremely cognizant of the need to keep him isolated from any illness that might affect his ability to go into surgery. Down the road, we will have similar concerns regarding pre- and post-chemo infections (obviously, the risk is greatest when his immune system is depressed by the treatments).
We certainly will want visitors but will determine how best to manage that when we better understand the boundaries. Clearly, anybody who is ill should keep their distance and send him virtual hugs and kisses. Also, we are looking to find a temporary home for our cat. While Colin does not show active symptoms, he is allergic to cats and can become asthmatic (this was the case over the winter). Also, she is potentially a vector for tick-borne illness. While we do have a collar on her, I am not 100% confident of its efficacy, and the vibrant local tick population makes us nervous. Lyme disease is an obvious concern (everybody in our family except Colin has contracted it), but there are other illnesses that ticks have that are also an issue. Bella does not socialize well with other cats but is a mellow older lady who loves her family. If there is anybody who is interested in taking temporary charge of her, please let us know.
We cannot say enough how much everybody’s support has meant to us. Although much of our focus has been on discussing Colin’s condition, Aidan’s life has been dramatically affected and we want to make sure that he gets the love and attention that he needs. We are deeply touched by the generosity and kindness that people have shown to our family in meeting all of our various challenges, including caring for our equally cherished son who does not need serious medical care.