Normal, Redefined

On Tuesday, only one day late, Colin is back on track with chemo. He enjoyed an unexpected afternoon day pass on Monday and a further delay of several hours on Tuesday morning for fundraising purposes.

Despite the recalcitrant fungal infection, Colin has (so far) been kicking a** and taking names in this round of chemo. Methotrexate last week was a breeze, and he complained very little about headaches, much less than in previous rounds. Cisplatin, the mention of which makes the adults around here queasy, has so far been relatively gentle.

Colin resented having to abandon an evening play session after the cisplatin got the better of him. We had given him Ativan, which in the balance seems to be more disruptive than useful nowadays. He gets squirmy, spastic and a little loopy… and still manages to vomit (though he doesn’t seem to care too much about it).

There has been some talk of bringing Colin home by the end of the week when he has recovered from this battery of chemo (he receives cyclophosphamide on Wednesday). Dr. DeWire opined that this would be a great boost to Colin’s spirits. She was delighted with his level of activity, alertness, and general happiness following three days of outings.

One of the things we are currently watching for (outside of the everpresent fungus alert) is neutropenia and neutropenic fevers. Although methotrexate is not known to be especially myelosuppressive (impairing bone marrow activity), Colin’s ANC was at 800 on Tuesday before chemo. This makes it relatively likely that he will be neutropenic within days, since he is already so close to his nadir.

In past cycles, it had taken much longer for Colin’s counts to drop. As we have seen before, his ANC is completely unrelated to his overall sense of wellbeing. Fortunately, his hemoglobin and platelet levels are dandy, so he will not be needing blood products imminently.

As for the vegetation in Colin’s heart, we heard more rumor than definitive answers from Monday’s echocardiogram. Apparently, the cardiologist was not delighted with the quality of the images but concluded that the vegetations were stable.

Colin will be the subject of this week’s pediatric infectious disease conference involving doctors/fellows from Le Bonheur and St. Jude. We are happy that the team wants to solicit as many thoughts as possible on Colin’s case. The attending told us that they may need to consult a fungal endocarditis expert in order to develop a plan for long-term treatment.

Colin is also participating in a research study on pediatric fungal infections. This is an expected part of care here at St. Jude, though I mean expected in the sense that one expects studies on every imaginable subject to come up. The treatment is not contingent on participation in studies. That said, we have happily participated in all of them, and we are glad that Colin can contribute to the better understanding of ependymoma/fungal infections/H1N1 vaccine efficacy/etc. We may already have signed consent for a study on chemotherapy-tinged farts, but they haven’t sent around the collection vessels yet.

In short, things for us are normal and feeling quite copasetic. There is nothing more reassuring than constant comments (isn’t that an herbal tea?) about his improvement since admission.

This normal, this new normal, is jarringly different from our former existence, and it is easy enough for us to lose sight of. Medicine is an integral part of our lives, and we swim in seas of the jargon. Our updates are increasingly colored with that clinical brush, underscoring the difficult balance between keeping people informed on Colin’s condition and descending into incomprehensible and tedious medical facts.

At Saturday’s play date on Mud Island, we met a mom of a boy near Aidan’s age who lives near the park. She was sympathetic but simultaneously horrified by our circumstance. It is unthinkable, terrifying and a good dollop of icky. Sad to say, but we have grown accustomed to all of it, but we got a needed reminder of how sharply our normal has veered off course.

At this point, it is almost inconceivable for us to circulate among the GenPop, outside of the comfort of those fluent in medical concepts and procedures. Reintegrating into society, when the time comes, is going to be an effort in itself.

That said, the updates on Colin and our family seem even more important, since they broadcast our situation and perspective, perhaps ameliorating some of the awkwardness that people might otherwise feel when first confronted with the discomfiting oddness of our circumstances.

It is impossible to pull others into our world, but at least we can attempt to make it less foreign and expose some of our own process of integrating these spurts and streams of newness into our lives. In the midst of this rumination, we were asked by ALSAC (the fundraising organization that supports St. Jude) to speak to a visiting group this morning about our story.

Although we have been participating in the as-yet-undefined video project on Colin’s story, this was our first stint speaking directly to visitors. Given the timing of our appointment, we asked for a delay in Colin’s chemo; though we did see a child participate in the Target 10th Anniversary celebration on campus with a brilliant yellow bag of methotrexate running, the hospital restricts patients on chemo from leaving their units.

Colin was perky and charming and very happy to leave the confines of his room for whatever purpose. He did not realize that socializing was giving him a further respite from chemo (and a little extra pre-hydration, which is always good though it does dramatically increase diaper output!).

Fundraising is an important mission here at St. Jude and to some extent we feel a moral obligation to participate however we can. However, it is not as simplistic as that, as we do feel genuinely compelled on many levels to support this institution and the mission to improve the plight of families faced with pediatric brain tumors/cancer.

All of this took place against the backdrop of layoffs last week of 70 ALSAC employees (reported in the Memphis Daily News), due to lower donations. This news is chilling in the context of the dependence of this institution on donations to feed the ever-churning maws of research and treatment that we have become acutely reliant on and gratified for.

Even when we do return to normal, the tendrils of St. Jude will remain, binding us to Memphis and the no-longer strange world we have become bound to. One piece of welcome news from back home is the birth of yet another little boy into the family! There is some stubbornness in the Y chromosome that has warded away little girls, and there is some risk that the latest child will be showered with pink and flowery goodies regardless of gender.

There is, indeed, nothing more normal and sweet than a new baby. We are happy to hear that Jon and Ashley Erickson are now cuddling Oscar Duke who, if bald, is that way naturally and not due to the action of chemotherapeutic agents.