Sword of Damocles

Colin is always full of surprises and has continued to not disappoint us. It would be funny if it weren’t so worrisome, with Friday bringing the need for another burst of medical education.

Friday, Colin had his two week post-op MRI to determine the disposition of residual tumor. As we all had suspected, there is a bit of disease remaining, but we are glad for Dr. Boop’s restraint in not digging around for more, since it likely would have harmed Colin. We are officially calling it a near total resection, and the significant reduction of tumor greatly increases Colin’s chances of a cure.

To have Colin doing so well and being happy and very active this soon after surgery is astounding. Dr. Merchant will meet with us on Monday morning to discuss his plans for radiation, and the simulations will then take a good part of the day.

For My Next Trick

To our great surprise, however, there was another meaningful finding in the scan. Colin has a “cerebral sinus venous thrombosis,” a blood clot in his brain. This is the result of surgery and, evidently, started from a small clot that showed up on the initial post-op MRI (we were never informed of this). The good news is that the clot does not block the flow of blood. However, he is at great risk of stroke, either at the site of the clot from continued growth or further downstream as the clot breaks apart.

To keep the clot from getting larger and prevent broken off pieces from causing problems, Colin started the anticoagulant lovenox on Friday night. This is a low molecular weight heparin. This is used because it is basically more predictable than heparin itself, an anticoagulant which is, incidentally, used frequently to keep his port from clotting.

The initial injections (given subcutaneously twice a day for a course of three to six months) are at the lowest therapeutic dose. We are starting at a very conservative level we can’t do the lab work to test to see if this is too much until Monday; at that point, we’ll see if this is right or he needs more. The danger is of a bleed. The alternative therapy offered (and suggested by Dr. Boop) is heparin administered by I.V. in the hospital, which for various reasons wasn’t what the chief of hematology at St. Jude recommended.

There is a more aggressive intervention that they would not recommend unless we saw worsening of the clot. We are still in the midst of learning about this new situation and, as far as we can tell, the recommendations we have gotten are the standard of care for this and certainly will suffice until we can have more consultations during the week.

We suspect that the clot may have gotten worse a few days ago because of acute but temporary changes that we saw with him. We ended up taking Colin to the emergency room at Le Bonheur to have him assessed for a possible shunt malfunction. The collection of fluid at the back of his head got bigger and he experienced terrible pain that broke through morphine. They performed a CT scan but did not identify the clot, so we are very fortunate that he had the MRI scheduled at St. Jude, where the radiologist immediately notified our clinic of the problem. We are extremely thankful that we did not discover this because of a more dramatic event down the road.

A New Lurking WMD

The thrombosis hangs over Colin’s head (literally, just about) even more than the endocarditis, which is considered safely managed if not fully resolved. Ironically, the anticoagulant should help get rid of the remaining vegetation in Colin’s heart!

Now, we have to constantly look out for the possibility of worsening of the thrombosis or stroke. Although we are on high alert and feel like we need to act quickly if we suspect either, Dr. DeWire says there is little to do emergently.

The lovenox is a standard treatment for a stroke in children, so he is already receiving therapy for a stroke. Adding another anticoagulant might raise the risk of a bleed unacceptably high. The next step would be using a microcatheter to clear the vein, though we don’t know much about what that involves or how quickly they would act.

Fortunately, the VP shunt helps keep the pressure down in Colin’s head, and the pseudomeningocele on the back of his head is a secondary pressure valve. Both of these reduce the chances of damage from high pressure if things should go south and are helping him right now.

Ignorance = Bliss (Really!)

In typical fashion, Colin doesn’t know any better and has been doing tremendously well in all other respects. During PT on Friday, he walked all over and went up and down the stairs twice. He desperately wants to use the treadmill which, though impossible, serves as good motivation for him to walk to that room. Bear in mind that he is doing this all with little to no support.

On Friday morning before the MRI, Colin walked to the play kitchen in the MRI waiting area and stood at the stove making coffee. It was so cute and normal! He wasn’t completely confident in his legs and is slow to adjust the positioning of his feet when he is standing, so I had to help out in that department.

Colin is physically active, playful and interactive. He is accustomed to pushing elevator buttons and delivering greetings as we truck around the hospital and Target House. This amounts to an assortment of waves, high-fives, fist bumps, and blown kisses, the latter of which are doled out reluctantly so as to increase their value. He will not simply blow kisses to anybody on command and often demures.

Hubris

It seemed too easy, really, to think that we would just slip into the rhythm of radiation and chug along smoothly until the end of treatment. Oh, pissant mortal, you should not have dared think such a thing. I have been tempted all along to ask what the rare complications are that Colin could have so I can recognize them when they occur because it is these very things that do seem to crop up.

In the absence of a better medical education, vigilance is key, though it mattered not a whit in this situation. However, our experience does reinforce our need to follow our intuition as parents and caregivers and pursue lines of questioning, especially when we are getting unsatisfactory answers. That said, how can one push when the response to, What is the differential diagnosis? is a persistent I don’t know?

Where is the seam of trust between the patient and the medical professional? When am I allowed to let go of the responsibility of seeking better answers and have faith that what I am being told is correct and reflects the judgement that I would want? I suspect that the answer is variable and sometimes that there is no such thing, that medical professionals are not in a position to answer the real question.

These thoughts are troubling and empowering. I dread having to pry for better answers or cajole/strongarm somebody into complying with my idea of right. I certainly am fallible, but maybe my personal investment makes me more prone to identify and correct my own errors.

When it comes to Colin (or any other patient, for that matter), ego is less important than his wellbeing, yet for some individuals that may not be equally true. This thought would be more chilling if we weren’t reminded that medicine is practiced by real humans with the same flaws as other people.

The more I am immersed in this world, the less concrete my ideas of how to cope are, especially when one wanders into the territory of the subtle or obscure. I am often required to compensate for one characteristic or another of somebody who works with Colin, yet it is more difficult to discern at what point this becomes unacceptable.

In our case, we are fortunate that Colin’s primary team is rock solid. The intensity of his medical interventions, even with the new injections, is toned down significantly. We trust that Colin will get used to getting shots and that we will get used to administering them. With any luck, this is all we will have to do for the thrombosis. Worrying, it turns out, has no therapeutic value.

Yet again, Colin has unearthed a dangerous rare complication with the best scenario (current adequate blood flow, modern therapy). We can only hope that his good bad luck holds up!