Sometimes you get the right nurse at the right time. The one who holds you while you sob, the one who makes you look in her eyes while she tells you to never say you are sorry for advocating for your child and the one who says how proud she is of us for being strong enough to say no.
Another thing to learn about blood transfusion. There is a virus in blood products that everything gets tested for. If you read this small article you see that cmv positive products should not be given to a. people with cmv negative status, c. with no functional immune system, or c. facing any sort of transfusion of stem cells – especially if harvested in an cmv negative state.
So today they came to me with a bag of washed platelets that did not have a CMV negative sticker on them. I said, well, why would you bother giving her CMV negative blood but not be concerned with the status of the platelets and no one could answer me. They got the hemotologist on call in here (you have a 10 minute window in which to deliver these products to the patient’s blood) who then could not explain why suddenly this sticker was no longer important and why you would give a neutropenic child this product with this risk of antibody contagion. He said it was because she was not up for an organ transplant or a stem cell transplant from someone else. I reminded him that she is third round chemo, post stem cell harvest and her stem cells were upstairs in a vault on the 3rd floor in a CMV negative state awaiting re-infusion in less than a month. I asked him how it made sense to give her CMV positive antibodies (by exposing her to cmv positive platelets) when her previously harvested stem cells are negative. How is this any different from any other transplant situation? The cmv status must match or the transplant can not occur. This would mean that all the freakin stem cells we harvested in January would not be able to be transplanted back into Ruby come the appropriate time. (Which by the way, if her bone marrow doesn’t start making white and red blood cells soon, we might need those sooner than later). He stopped and said “good point”. So I said, take the bag down, you are not giving Ruby those platelets. Which is hard. Because I’m a bloody musician. And sometimes I paint bad pictures. I’m not a doctor, nurse, blood specialist or otherwise and I feel so insanely outraged that I of all people had to come up with this logic. That I had to diagnose the potentially devastating effects of a choice made out of convenience, regardless of safety and my estimation of the Blood Services folks drops even further. Further than it was before when we fought for 2 months to have washed platelets in the first place, where they don’t accept Ruby’s “type” of escalating allergic reaction as a reaction until it became extremely concerning that the next reaction would mean the ICU. It’s astounding. What is equally astounding to me is trying to find a place inside me that can trust the people who study this for their professions. Oh ya, this too: http://www.cmm.ki.se/en/Research/Cardiovascular-and-Metabolic-Diseases/Cell-and-Molecular-Immunology/Cia/Our-research/CMV-infection-in-cancer/
And you wonder why I question modern medicine. It’s as if we teach these concepts and treatments separate from each other, how the interaction between nutrition, blood, chemo, cancer, mindbodyandsoul are disregarded.
I had to take a very fast angry walk down the hall after this. I just left poor Brian in the room, no clue if he was as mad as me, (to be honest, he has a better handle on “letting things go” than I do) I just needed to make sure that I didn’t strike anyone with my lightening. I kept thinking green green green heart chakra, come on, green green green….love, compassion, acceptance, love love love. But I’m still a little mad. Well…thunderstorm girl here will get over it. I get rather redly mad for a short time and then I can breathe again. This time however, I’m very very tired. Tired of having to go and educate myself in 5 minutes about blood, another infection risk, transfusions, and risks and then speak to it in a logical, clear manner.
I’ve held it together pretty well but today took the cake. Took the cake took the icing, took the filling..just took it all.
Damn that nice nurse. She made me cry and taught me something. Don’t say you’re sorry when you are keeping your child alive. Don’t. It’s not needed.