Pushing Through

Colin is back on track with chemo, eliciting a big sigh of relief for us. As dreadful as chemo can be, it is also our purpose for being here and it is the current modality for treating his cancer. The recent sidetrack chasing down his fungal infection has been disruptive at best and potentially lethal at worst.

With the electric yellow bag of methotrexate hanging on Colin’s IV pole comes the reassurance that his overall clinical condition is significantly improved. In fact, Colin enjoyed a break from the hospital and got a day pass on Sunday.

We took advantage of the beautiful weather and went to the Memphis Zoo, which is very nice and was not even crowded. Outings like this are much more complicated for us than they have been in the past, but it was great to get Colin out of the hospital and even away from Target House. In the past, we have only gone between the two and had not yet dared go out in public.

The boys enjoyed themselves, though Aidan was a bit anxious about his brother and has yet to adjust to the newness of Colin’s medical demands in “normal life.” At one point, he opined that Colin needed to go back to the hospital where they can take care of him.

Looking back only a short time ago and despite the recent bout of fungemia, Colin is doing much better. Physically, he moves all four limbs independently and sometimes maneuvers himself to get out of his wheelchair, with both legs hanging off one side. He sits well on his own, though never unsupervised — the last thing we need is more neurosurgery.

Mentally, the change is even more dramatic. Colin is alert and engaged, expressing preferences and exerting his will on others. He points and mouths the word “ow” when something hurts. Recently, he started participating in his own trach care. This started unexpectedly when he grabbed the Q-tip when I was cleaning the trach stoma (the actual hole in his throat) the other day. I thought he meant to push it away, but he was actually trying to clean the stoma himself.

Since then, we solicit Colin’s help as much as possible in caring for his trach and G-tube. He loves rubbing lotion on his hands and applying lip balm. During bath time, we have to wrap up the PICC line well so it doens’t get wet, since he loves splashing and rubbing himself with a washcloth and soaping up.

All of this behavior is much more “Colin-like” than we have seen lately, and it’s amazing to see him restored to his former self. It is also part of the paradox of his medical condition that we have seen. The endocarditis, which is the actual medical term for the fungal “vegetation” on his heart, is quite serious. Before the advent of micofungin, the treatment was much harsher and didn’t have as positive an outcome.

The vegetation itself is composed of the offending microorganism, platelets, and fibrin (the same material the sheath around the old catheter is made of). The hope is that this will eventually get smaller on its own when the fungal infection is addressed and, furthermore, that pieces don’t break off and themselves cause problems. Fortunately, in the right atrium, it is unlikely that a piece of vegetation could communicate to the brain and cause a stroke, since this blood supply is “filtered” by the lungs.

We now know that we were mistaken about the location of the vegetation and, for the sake of clarity, include an excerpt from the cardiologist’s report:

There is a catheter like shadow and density in the superior vena cava entering the right atrium. At the tip of this density is what may be a vegetation. There is additional vegetation noted on the diaphragmatic surface of the right atrium between the inferior vena cava and the tricuspid valve. The vegetation at its maximum diameter is approximately 1 cm long. It does have attachment that appears to be relatively broad to the atrial wall.

Aside from this, the heart is normal and unobstructed. We are lucky that the endocarditis was identified before Colin became symptomatic. One of the complexities of managing this is that the heart does not have an independent blood supply, so it does not have the ability to mount a targeted immune response.

Instead, the micofungin must treat the vegetation as it flows by, thus underscoring the importance of having the medication provided parenterally (in the veins). Also, the vegetation breaks down over time, exposing areas of fungal infection that have not yet been treated by the micofungin and, therefore, could reseed Colin’s blood supply. What’s most important is that the vegetation does break down; otherwise, it will have to be removed in open heart surgery.

The peripheral blood culture that had been bought at so dear a price on October 30th has now come back positive. Although disconcerting, this is consistent with the gradual breakdown of the vegetation. We have not yet gotten a clear response on when the next echocardiogram will be, though there will definitely have to be one performed before another permanent catheter is placed. The question is whether we do this before we get a negative blood culture.

Another concern is simply the spread of the infection itself to other organs. Fortunately, the eye, which is susceptible to fungemia, is clear. On Monday, the ophthalmologist told us that she did not see any white fluff (signs of infection sound so much more benign when described like something you would pick off of somebody’s dark sweater) or clouding in the retina that would indicate infection.

So far, the initial plans to have a CT scan of his organs have been nixed or at least put on hold. The concern is that a CT exposes the body to a lot of radiation (the equivalent of hundreds of x-rays) and that the benefits do not outweigh this risk. The systemic treatment of the fungemia hinges on the heart and, presumably, any infection located elsewhere will be treated simultaneously if it exists and is certainly less serious (except an infection of the shunt, which would reveal itself through a malfunction anyway).

So far, we have only spoken to a cardiologist immediately following the second echocardiogram and have not been able to ask follow-up questions. At the time, he seemed fairly blase about it, as if he sees this kind of thing all the time. Here at St. Jude, the attending physician from Infectious Disease who has been here for 2o-some-odd years told us that he has seen this maybe five times during his tenure, with only a few cases related to fungal infections.

A literature review on the Internet is proably not relevant and way too depressing. There are some statistics that show something like a 50% mortality rate for endocarditis from fungemia, but this doesn’t reflect any of the details of Colin’s case. For one thing, he does not have underlying cardiac problems that would make endocarditis more dangerous. For another, they did not have micofungin available at the time.

Because Colin will have a long course of anti-fungal medication, we received training in giving him an infusion through the IV at home. The infusion uses a device called Eclipse that looks like something you would find in a clump of giant kelp, a somewhat uneven ball with IV tubing attached.

This just about completes the possible education here; the only thing they haven’t taught us is how to dress and maintain a Hickman line. Although we generally lean toward another subcutaneous port, it is possible that Colin could get a Hickman line to replace the old port. We would like to avoid the hassle of changing the dressing ourselves and like the ability to remove the access needle and have Colin be free of that impediment, if only for a few days at a time. When he goes for radiation, this would be possible, presuming he is not still on micofungin (of course, it seems unlikely that he will get a central line placed if he still needs the therapy).

We truly appreciate being here at St. Jude while all of this is going on. For one thing, the doctors’ decisions are made entirely outside of the influence of insurance approvals. There was no question about whether the TEE would be paid for, only whether it was the best thing for him.

Another result of all this has been utter clarity in Dr. Gajjar’s involvement in Colin’s case. Of course, he is the attending physician leading the team, but he has had to make crucial decisions regarding his care (testing, placement of the PICC) that have gone against the directives of the various specialists but go into the totality of Colin’s medical care. There is a delicate balancing act at work here, and Dr. Gajjar cannot allow distractions to throw Colin off kilter.

Dr. DeWire, the fellow who is taking care of Colin, really is his apprentice, viewing Colin’s case with keen intellectual clarity. As we know, Colin has represented a challenge to the medical practitioners who have managed his care, no less so here than back home. As his parents, we learn to balance practiced patience with a need to know and understand more.

Knowledge, after all, is always limited and usually flawed. Early on, we intuited (and later saw proof) that a prognosis is not useful because, among other things, it does not reflect the specifics of a case. Statistics are a dangerous toy that often do more harm than good.

For this and other reasons, when presented with a challenge, you just have to push through. Sometimes, it is easier than others, but it is the thing that allows you to live rather than get trapped in a dark place. It is the only thing I know how to say to families that receive unwelcome news.

Recently, our good friend Carissa got unpromising results from her scans. Now, she is looking at more chemo and more hard work. Her family is understandably stunned, and we are thoroughly sympathetic. However, to simply distill it down to “bad news” or defeat and give them pitying looks is not constructive, since that attitude does not give much room for hope.

Encouragement among people who have themselves faced adversity does not tend to be a friendly punch in the shoulder and a trite affirmation. This is why I said to Carissa’s mom, “You have to push through.”

I can only hope that this phrase speaks to her as it does to me. It acknowledges the hardship but also the hope. There is another side, when you push through. I don’t know what it looks like, but it is there and you will find it. At least the pushing gives one some control.

Colin’s endocarditis is not the hardest thing we have faced, by far, yet it is extremely frustrating. I can’t tell whether it feels easier because of everything we have gone through or because it really is easier. The common response among the staff here is just to look at Colin, who is invariably playing happily or objecting vigorously to an unwelcome procedure, and, with a quick shake of the head, say, “He’s tough.”

To Colin, pushing through is natural and it is what he does best.