As you have probably noticed from many of Shannon’s prior posts, one of the myriad of things that is excruciating for a parent of a child with cancer is the constant decision-making that you have to do. The reverberations of the choices that you make could echo into the future with horrible, benign or fortuitous consequences. You simply do not know.
On Thursday, Nico was scheduled for two IV doses of chemotherapy in the clinic and more chemotherapy via spinal tap in the rapid treatment unit. This is not unusual. Unfortunately, due to the nature of the treatment, Nico’s blood counts (white blood cells, red blood cells, platelets, hemoglobin, etc.) depress and recover week to week. For certain procedures (such as the port placement), if his absolute neutrophil count (basically, a calculation of the number of white blood cells he has to fight infection) is too low, then the procedure must be postponed. If his platelets are too low, then he needs to get a platelet infusion. If his hematocrit is too low, then blood infusion and on and on. Each week when we go to the clinic for Nico’s chemotherapy, his blood is drawn and the hospital does labs to see if Nico needs transfusions in addition to scheduled drugs and procedures or if some number is too low, whether treatment needs to be postponed to give him a chance to recover.
So, Nico’s blood was drawn and his labs came back with low numbers, particularly platelets and hematocrit. Our oncologist was not in clinic and a doctor we did not know told us Nico would need blood and platelets but that he would get them AFTER the spinal tap. Now, I am not a doctor. If my aptitudes in science extended beyond photon torpedoes and the Death Star I would have become something far more useful to mankind than a lawyer. However, it seemed to me that if Nico’s platelets were so low as to require a platelet transfusion, then it would make sense to give it BEFORE someone stuck a needle in his back. Again, I didn’t go to med school, so what do I know, but it sounded like the proverbial barn door being shut after the horse ran off. Shannon, who actually does know something about medicine, agreed with me and quickly spoke with a neurologist friend as to what made sense. She also floated the issue to our leukemia list serv. The neurologist and about 95% of the list serv responders stated that Nico’s number was low enough at their hospitals that he needed the platelet infusion and it must happen before the procedure.
I asked the several people in the rapid treatment unit (two nurses and an anesthesiologist) what the standard of care was for platelet transfusion and if post-procedure transfusion was OK. They did not know and could not state the standard of care. Shannon and I were adamant that someone actually state the standard of care and provide reasoning for how they were going about this made any sense. The clinic receptionist told Shannon, “The doctor makes that decision, not you. This is the way it is going to be done and it’s not your choice.” Uh, no. Actually, we the parents make the decisions, which include flipping you the bird and taking our kid someplace where patients (children) are not treated like Rhesus monkeys. All I have to say is that this guy was lucky that Shannon was not physically near him when he snorted that condescension to her on the phone or he would have needed a few transfusions of his own.
Then, I spoke to the nurse practitioner performing the spinal tap and she was able to articulate the standard of care and why it was so at this hospital. It made sense to me as a layperson, but Shannon’s friend the neurologist had been rather emphatic that the platelets should come first. And the list serv responders had said the same thing had been their experience. One of these things does not look like the other…
Do we insist that the infusion happen before the spinal tap or not? Do we take our kid and go home? Or do we trust that this doctor we don’t know is making the right call and let our son get a needle in the back and hope that he won’t get a bleed into his cerebral spinal fluid which will compress his spine and permanently paralyze him? Shannon and I have to make decisions like this all of the time. It is truly terrifying to know that you could be making a choice that could hurt your child. I do not know how we are going to get used to living like this.
I chose to proceed with the spinal tap, which went well (although he has an ugly bruise on his back, which he has never had from a spinal tap before – it makes us nervous). Unfortunately, when Nico was administered the platelets five hours later, he had an anaphylactic response (hives, rash, puffiness and vomiting). Because it was not entirely clear whether Nico was reacting to one of the chemotherapy drugs or the platelets, the medical staff elected to keep him under observation overnight and we stayed in the hospital Thursday night. We are happy to report that Nico has recovered, looks well, and was discharged from the hospital this afternoon (Friday). Our oncologist’s best guess is that Nico reacted to the platelets (he had a similar reaction to platelets in January and the chemo drug was administered several hours before the platelets this time). However, what is particularly concerning to Shannon and me is that the hospital elected to give Nico three substances that are known to cause allergic responses back-to-back-to-back (asparaginase, one of the chemotherapy agents, which is known to cause allergic responses the more often it is taken; blood; and platelets). When we asked why we have blood and platelets infused earlier in the week before coming in for chemo and a procedure, we were told that this was not preferable because giving everything on the same day is “the most expedient course”. As a result, no one knows for certain exactly what caused Nico’s anaphylaxis. If it is the platelets, this will not be a big deal. If it is the asapraginase, this could have very serious consequences for Nico’s course of treatment and his responses to treatment. Personally, I prefer to proceed like the tortoise and know beyond a shadow of a doubt what is going on than “expediently” rush ahead like the hare and not watch where I am stepping. But what do I know, I am just a parent who should turn off my brain and do what I’m told.
We are just glad to be home at this point, but we dread the next choice we will have to make.