Initially, the reluctance to release Colin from the hospital was related to timing and the fact that we had still not worked out the kinks with managing his secretions. On Friday, though we were prepared to bring him back, the doctors were not comfortable releasing him with the weekend looming.
As it turns out, this was a good move. On Friday morning, between OT and PT, he had a big stinky diaper. Dad went to retrieve a fresh diaper and changing gear; on the way back, he exclaimed, “You can smell it down the hall!” This is a famous C. Diff comment and Colin failed the sniff test miserably.
All the same, the test came back negative on Saturday, much to the amazement of anybody who has smelled his diapers lately! We are pleasantly surprised as well as dubious about the veracity of the results. They may rerun the test if it continues, so stay tuned for the next installment of the Tales of Diaper Woe. All of this happened just in time for the earlier incipient breakdown to resolve, but it has inspired its own difficulties for the famous tush.
On Saturday, we increased the Robinul, but evidently went too far; that night, Colin developed a mucous plug and we had to completely eliminate the drug for a few hours. He is back on the lower dose but still producing phlegm.
Little sleep on Saturday night made Colin very lethargic… not to mention the chemo, of course. His blood tests showed that his absolute neutrophil count was very good (3,400) on Friday morning but plummeted by Sunday to 100. This is officially neutropenic territory and we are on high alert for problems, particularly in his lungs because he is aspirating secretions.
Also, Colin will need another blood transfusion, though his hemoglobin is borderline (at 8.3, it is above the arbitrary mark of 8.0) so the timing is the question.
They are speculating that Colin’s history of infection has made him more sensitive to the myelosuppressive effect of the chemo. He certainly is doing what he was always doing in New York, just being his old complicated self. He is no less challenging here in Memphis, although the issues are different.
The doctors are now quite relieved that they didn’t let us go home because he would have been readmitted anyway with his increased struggles with secretions. Now, they are watching him closely for the possibility of pneumonia.
We are washing our hands assiduously and eyeing any ill seeming people very warily. Flu shots are now mandatory for everybody in the family, and we are anxious to get the H1N1 shot when it becomes available.
Colin had his last chemo for the month on Saturday (Vincristine). He seems to be experiencing some related pain, as it can cause jaw pain in particular.
We look forward to almost two chemo-free weeks, though this does not mean staying out of the hospital, obviously! The doctors are encouraging us to contract for some nursing help, especially at night, when we leave. This is one of the few things that St. Jude does not cover, but it could be wise depending on Colin’s state, to at least assure that everyone gets enough sleep.
Colin is getting a daily infusion of G-CSF that will help his bone marrow recover. We are hoping that this will kick in shortly and his counts will go up.
Life for us in Memphis is quite different and very much more isolated. With Colin’s immune system taking a nose dive, this is not entirely bad. However, on Saturday, Dad made meatballs and spaghetti and we played Frank Sinatra on the juke box on the 2nd floor (when Aidan wasn’t picking Raffi songs). We were missing New York sorely!
There is another odd phenomenon here related to St. Jude tourism. Tour buses regularly circulate through the campus. People spill out and take pictures of the statue out front, walk through the gold-domed pavilion, and visit the gift shop.
Oh, and one other thing. They smile kindly and pityingly at pediatric cancer patients. As beneficiaries of the St. Jude system, there is a tacit obligation to participate in this sort of voyeurism willingly. It seems appropriate to be demure and grateful, to smile yet not be too cheery about it. The demeanor says, Yes, the situation is difficult, but the kindness of the institution softens the blow and gives us hope. Please donate money to St. Jude and loosen your wallet in the gift shop.
This is really not a difficult thing to do yet can be awkward in the conversion of an important outing for Colin into a fundraising campaign. One can’t help but think that one look at Colin, disheveled and lopsided, breathing noisily through his trach and with mysterious tubes and wires looping around his wheelchair (significantly less of these lately, but the chair and trach alone are impressive enough to the uninitiated, much less the Frankenstein scars), underscores the value of the hospital.
All of this is not to imply that we somehow discourage charity to St. Jude. To the contrary, we understand very well the importance of the work here, both to the individual patients and to the cause of childhood cancer generally. And more specifically, it feels strangely productive to play this unspoken role in the tourism here.
The point really is that being a patient here is more complicated than simply being at any other hospital. Here, one (happily) becomes part of an institution that borders on cultish. In the absence of rationality and science, it would frankly be a little scary. If Danny Thomas had said that aliens would rid the world of childhood cancer, by God, St. Jude would sponsor a SETI project to glean that priceless information. Fortunately, Danny Thomas had no such conceit — not publicly, at any rate!