Total Body Radiation
Yesterday Harvey got the last of his preconditioning treatments: 200 cGY of total body radiation. This is a small dose, compared to 2,000 cGY (or thereabouts) of radiation given in full myeloablative transplants.
“cGY” is abbreviation for centi-Gray. These units of radiation are named after Dr. Gray, a pioneer in the field. A “centi-Gray” is one hundredths of a “Gray”. For comparison, a chest X-ray is between 4% – 5% of a cGY. So, even with this mini-allo approach, Harvey got radiation dose the equivalent of 4,000-5,000 chest X-rays. Just in case you missed the point up to now, transplant preconditioning is not something you would do just for laughs. This is pretty hairy stuff!
The immediate after effects of the radiation therapy is fatigue. Harvey was more tired than I have ever seen him in the past 38 years of his life. We let him sleep it off, there is not much else to do about it. We are told that a couple of days later we can possibly look forward to mucositis (sore mouth) and the painful inflammation can happen all the way from one end of the GI tract to another, making it hard to eat and do other stuff. Not to worry, the dietitian was quick to reassure us, they will be more than happy to feed him through a tube, just another bag hung up on the infusion pole that already looks like a Christmas tree with too much stuff hanging on it. If eating gets really poor, there is nothing wrong with getting supplementation via the iv tube, to keep nutritionl needs in balance. In Harvey’s case, home made yogurt seems to work and we are happy to keep him well supplied on that front.
Encounter At High Noon
Today was the big day, the day Harvey was scheduled to say hello to two very nice baby cords (one from the Puget Sound Cord bank, and one from the Carolinas. A matched pair, a boy and a girl). It is a toss up which cord will win in the end as the one that engrafts and becomes his new immune system. Will it be a girl or will it a boy? Will Harvey suddenly develop a taste for down south cooking, or will he long for more rainy days than we normally see in sunny Sedona? Just kidding.
The next part is going to be tough for me to write, and may be tough for you to read – consider yourself warned. But we did promise that we will tell it like it is, the good, the bad and the ugly. I am sorry to say the actual process of the transplant was not a tranquil and spiritually uplifting experience. It was, to put it mildly, a stressful and somewhat scary experience. I am still reeling from it.
Right on schedule, the two cords showed up in Harvey’s room, accompanied by a nurse and a nurse-in-training. No expert doctors, no attending fellows, no nurse practitioners. Not that we were looking for VIP treatment or a chorus of heavy weight experts to watch over the process they have done dozens of times, but I have to admit I was taken aback by the somewhat less than expert guidance available for the process. We were offered spiritual hand holding in terms of a priest, rabbi, shaman or what ever, but we would have far preferred the reassurance of clinical expertise. They were familiar with the process, but we were doing it for the first (and hopefully the last) time!
We had some questions about the cords themselves. I made sure that the ID numbers of the cords matched with the information I had obtained from my prior correspondence with U of Minnesota. After all, shit happens and I wanted to make sure there were no “OOPS!” moments on this very important day. They ID numbers matched and these were indeed the chosen cords. So far, so good.
But the crucial “Total nucleated cell dose” (an indication of the number of stem cells available) cited on the two cord blood unit bags were significantly smaller than the numbers we had been given earlier. Now, jumping forward to a post I have yet to write, the total nucleated cell (TNC) dose in the cord blood is one of the most important things when it comes to successful transplant and patient survival. The double cord program at the U of Minnesota was developed precisely because they realized early on that the cell dose available in one single cord is most often not big enough to transplant adult patients, there are not enough stem cells there, two cords transfused together got over that hurdle. Knowing that, you can imagine I was chagrined to see the much smaller numbers on the cord bags. I am talking of roughly 40% reduction in the combined dose of the two cords, compared to the information I had on my handy dandy spreadsheet.
After the rent-a-doc and dirty lab coat incident of last Sunday, I was determined to be more assertive. The nurse did not know the answers to my questions about the cell dose, lady I just work here and that is not part of my job description. Fair enough, I can live with that. But what was harder to swallow was the single minded insistence that he was there solely to get his job done, and that took precedence over any questions we had. Yes, the nurse practitioner is around some where, and yes, the attending doctors were on the floor doing their rounds, and they will stop by and by. But now we have to get on with the cord blood infusion, with or without patient’s sense of comfort.
Eventually, after the two cords had already been infused into Harvey, the nurse practitioner dropped by and she too did not know the answer to our question about the drop in cell dose, she does not get involved in all that cell dose stuff. OK, we got in touch with the lady who is in charge of the cord matching, the one who initially gave us the detailed information. Did she have an answer for us? You guessed it, she just takes care of the paperwork, she too did not know how much of the precious TNC is lost during the process of thawing out the frozen cord blood. Going up the chain of command, we tried to reach our specialist, who would certainly have known the answer. But too bad, he was on his way to Italy and not reachable for the next week or so. Surprise! We were not aware that was going to be the case.
Finally, we did reach a doctor (Thank you, VB! You are a lovely lady) who was willing to call around, talk to the lab folks in cell processing and get us some answers. Yes, in the process of working up the frozen cords, as much as 30-60% of the TNC is lost. Wow. I have worked in labs most of my life, even though they were chemistry labs and not medical / biological labs. That kind of loss in precious end product would have raised some eyebrows in my lab, we would have been looking for ways to improve the processes to reduce losses. I don’t know enough about the processes involved in this situation to hazard a guess whether this is pretty much standard operating procedure in all cell processing labs, whether there is room for improvement.
The Second Shoe Drops
Just when we were winding down from the unexpected excitement of the day thus far and dealing with the disappointment of smaller TNC dose than we expected, the attending physician and fellow dropped by. Guess what, there was much more significant bad news. With a grave face, the attending physician informed us that the cell proessing labs had called in and had flagged one of the cord blood units that had already made its way into Harvey’s system. It seems there was a nick in one of the bags. Or there was a nick in the cryo bag that was supposed to keep the cords safely frozen. But don’t worry, we don’t think the nick actually penetrated all the way, we don’t think there is any real risk of contamination. But just to be on the safe side, we will have Harvey on mega dose of Vancomycin (a powerful broad spectrum antibiotic) twice a day for the next seven days. Bummer!!! Especially if it means Harvey would have to deal with antibiotic induced diarrhea for the next seven days!
So, when did they know about this little problem with the nicked bag that may or may not have contaminated one of the cord units? Who knew about it, who did they inform, when did they inform whoever they informed, and how was it we patient / and his family were not informed about it until after the fact? The details are a little murky right now. But this much is crystal clear. Cell processing labs did what they are supposed to do, called in and flagged their concern well before Harvey’s transfusion started. If they thought it was important enough to flag, and the attending physician now feels it is important enough to order double daily dose of Vancomycin for seven days to protect against potential bacterial contamination, I am blown away that they did not bring this to the attention of the patient before the cord units were infused. Informed patient consent is a joke in the absence of timely information, don’t you agree?
Somewhere, some how, some one made the wrong call and the process failed. Would we have gone ahead with the transfusion if we had been told? I honestly don’t know the answer to that question. Given the fact that he had already been “preconditioned”, there was little choice but go forward. I suppose I would have asked a few more questions on the exact status of the plastic bag, tried to get a better assessment of the risks before we decided whether one of the back-up cords have been a better choice given the circumstances?
As it is, we were not given the choice. We were informed about this potential unanticipated risk only after the fact, after the two cords were already circulating within Harvey’s deeply immune compromised body. Wish us luck, guys. Perhaps this will be no more than a bad dream, a hiccup that will go away with no more consequences than a day long splitting headache and acid stomach for yours truly. The next couple of weeks would have been anxious ones in any case as we wait for engraftment to happen, now the anxiety level has been kicked up a couple more notches. Harvey was cool as a cucumber. Could be he was calm under pressure, or could be the pre-medications had kicked in and nothing was going to get his dander up. To tell you the truth, I too would have liked a nice little oxycodone pill myself, with Benadryl chaser.
Shit Happens In The Real World
And squeaky wheels get heard. Since the uproar of this afternoon, we have been visited by the Nurse Manager as well as the Senior Director of Blood and Marrow Transplant Services. Both ladies listened carefully and were gracious, candid and sincere in telling us that there will be a review of the events of the day and they will get back to us with the results of their review process. Shit happens, in spite of best efforts. All of us who have been around the block a few times know that. But what sets apart the good institutions from the also rans is how they handle themselves when shit happens. We are sorry that Harvey was at the pointy end of this particular snafu, we would much rather have had an uneventful and boring DAY ZERO. It was not to be. Now, what matters is that we patients and the institution learn from the incident, so that patients coming down the turnpike in future have a better shot of having uneventful and boring cord blood infusion days.
Stay tuned folks. I have done my bit by reporting the facts as they happened, so that you guys can learn from our experience. I will be sure to tell you how all this plays out from an institutional perspective. Judging from what I know thus far of University of Minnesota Fairview Hospital, I am betting on their improved efforts, candid acknowledgement and transparency.
And oh yes, we were told today that the Vice President in charge of rent-a-docs will be informed about the guy in the dirty lab coat on Sunday.
So went our DAY ZERO.