Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

August 20, 2009


We are headed to Memphis, presumably tomorrow afternoon. The official opinion from St. Jude was that Colin would benefit from chemo, preceding a possible second-look surgery. If the surgery isn’t necessary, we can go straight to radiation (proton therapy).

Managing all of the back-and-forth communication and discussion between doctors and so forth is actually impossible. Forget about difficult. Everybody is difficult to reach and busy and there are important details and facts that must be conveyed or discussed and there is no way for it to happen smoothly.

In these cases, one must finally submit to the universe and attempt to herd only the larger pieces of data. We discovered that Colin is not approved for non-monitored travel and must go by air ambulance, which is ungodly expensive but necessary. The insurance status of the approval is questionable, but we have little time to work with; Colin must start receiving chemotherapy pronto or risk devastating regrowth of the tumor.

St. Jude asked us to be down in Memphis on Sunday in time for the initiation of his work-up on Monday (new scans, etc.). The social worker here has pushed for us to fly on Friday just to make sure that everything happens during a regular work day.

We are excited to embark on the next leg of our family’s journey. If nothing else, Memphis represents stability: we will be in one place for four months. We will live in a two-bedroom apartment where we can attempt normalcy. Aidan can go to Montessori down there while Colin is in treatment.

Every day, we see more improvement. Colin spent probably 40 minutes or so on the tilt table at a steeper angle than it had been at yesterday. He managed to cry after pooping in the middle of the night, a milestone because he has been generally so quiet since surgery.

Colin’s bottom is nearly healed! The C. Diff is still raging away, but Dr. Levy’s recommendation of the questran powder (ingested) has made management an entirely different animal this go-around. We hope that the vancomycin does its trick, or else we will have to resort to the now-famous fecal transplant.

Speaking of that, we pranked the day nurse manager today by informing her that she would have to perform Colin’s fecal transplant since Colin’s nurse wouldn’t do it. She exclaimed that her role as nurse manager didn’t have anything to do with that sort of thing. Fortunately, she did laugh when she found out she had been punked!

The true part is the fact that his nurse said she would do anything to avoid involvement with the procedure. She cleverly suggested that she would appeal to the residents by selling them on the experimental nature of the idea and that fecal transplants constitute important and fascinating science. It probably would have worked, had it come to it.

We will see how the staff at St. Jude respond to the suggestion of fecal transplant. It will be too soon for us to start pranking the nurse manager, that’s for sure. The thing we will most miss at NYU is the staff and the relationships we have built with so many people here. There is no question that we have been well cared for in the most tender sense of the word.

We will also miss the tremendous view from Colin’s window, even if it is occluded by scaffolding and filthy windows. It is best at night, especially when storms move in and light up the sky. The other evening, we could feel thunder shake the building.

Unfortunately, Colin has had scant opportunity to see out the window, so its value is utterly lost on him. He has mostly taken advantage of the ample morning light. He can also see the tip of the Empire State Building but has no idea what it is, even though he has seen the movie Elf.

Colin is looking forward to a plane ride, though he has no sense of what that will entail and we are barely better informed. We assume the plane is small since they asked for Colin’s and Mom’s weights. This seems alarmingly meticulous.

The questions cascade. Couldn’t they use average weights for a woman and 2-year-old? Is this a delicate method of avoiding the difficulties that might arise from unexpectedly managing a morbidly obese parent? Do they match the weight of the support staff to ours? They didn’t ask about our bags! Will they have to be thrown off the plane in an emergency?

Well, finally we are off to Memphis. St. Jude has a bed ready for Colin and he is “in the system.” It was reassuring to hear this, as we have been fretting that their offer to treat Colin would expire following untoward delays on our part.

Amid the confusion and uprooting, Aidan has finally earned himself a Nintendo DS. He has been unbelievably patient and trusts us enough to be honest about his feelings. The disruption of normal family life has taken its toll; he wants to go home, but this is not possible. Our home really must be where our family is, wherever that happens to be.

We are relieved that there is a Montessori school convenient to the hospital, with the hopes that it will provide Aidan with familiarity in unfamiliar surroundings. For us, the familiarity will just be home-cooked meals with Aidan and family time at the hospital (for the time being).

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