Every time I go to the Outpatient Center I am amazed at the efficiency with which the nurses, techs and doctors (wait, are there doctors there?) perform their job. The kids run through at quite a speed. Maybe speed isn’t the exact word considering some, including us, spend up to 8 hours sitting with an IV dripping chemo into their vein. But, after the shock, remember the aforementioned deer/headlight connection, wears off, the flim-flam of the hematology-oncology unit wears thin. Of course it is the same sort of dirty corporate hospital where bottom lines and dress codes reign supreme. Do blue pants and black shoes really help the RN’s stand out from the other personnel any better than the bright red RN tag hanging under their name? Do specialists remember how to diagnose without using an x-ray, cat scan or blood work. I guess I am frustrated by how many people are involved in Isa’s care and how I don’t really like them.
The oncology protocol is SET. As an extremely questioning person, I have a hard time accepting that this is the ONLY path to cure. Yes, the numbers have proven that in 1962 4% who were diagnosed with (ALL) leukemia lived. Now those numbers are closer to 93 % survival rate. Obviously something the Children’s Oncology Group is doing works. BUT, it still bugs me. When I asked the doctor if there is any personalized treatment, he said, “No”. NO?
Two weeks ago, or maybe three, we discussed with the nurse that Isa needed some fluid. No go. Last week we discussed that Isa’s cough was worsening. The nurse listened and said… no problem here. Then Monday, Tuesday and Wednesday of this week, Isa was up at night coughing so hard she puked. Two of those nights Papa & I got up, turned on the shower and sat in the bathroom encouraging Isa to breathe deeply. She got fluid this week, as well as a trip to x-ray and prescription for an antibiotic, (that may or may not help because they don’t have any idea what might be causing her problem.) Remember in the last post I said her ANC was 2900, well, it popped up at 950 yesterday. I hate to admit that I was surprised but I was. It would seem to me that with some experience doing this type of that they’d be able to give me a heads up that..” hey, her numbers might start to go down again. Don’t get complacent with the hand washing”.
THIS IS WHY OTHER PARENTAL CONTACT IS IMPERATIVE, you have to keep in touch with what other parents are being told because your doctor may have forgotten to tell you.
This is not to say that the protocol is wrong or that the nurses are shoddy. That isn’t so. It is to say that with my personality, this feels more like get ’em in and get ’em out. Next… Next….Next… Obviously we are in a big facility with a large patient base. I do understand all of these things. My expectations need to be lowered. The main restaurant in the hospital is a McDonalds. Go figure.
Imagine, the doctor, not a nurse practitioner coming into the room to say, “with this type of infection we can’t actually test the secretions because…..of so & so therefore we need to get a chest x-ray.”or, the nurse could have said, “I am listening for <insert sound here> and this could mean <insert disease here>.” It would have been nice to actually look at the final chest x-ray that Isa did receive. Should I even believe that an actual picture exists? Do I need to take it on faith that the doctor actually looked at the thing? Come on people, treat me like I can think. Don’t just tell me when to show up so you can stick my daughter and hand me prescriptions.
Also, I specifically asked to see our doctor, and he actually showed up. I asked him about 6-MP. I had read that it should be given at night on an empty stomach sans milk products. He said none of that mattered. Just to pick a time that was easy to remember. NONE? then why is it all over the web, why are other doctors telling their patients to do exactly as I just outlined. WHAT?
The specialization of medicine has created this hyper focus on specific aspects. My husband reminds me that there is a reason why we call it the PRACTICE OF MEDICINE.
Besides the obvious fact that having a child with cancer sucks, the other stuff about it sucks too. The parking garage, the construction ( what hospital isn’t doing construction) the scrubs. This whole experience sucks and it is getting suckier. So some of you will have to forgive me as my brattier nature is starting to come out. Although I am grateful for the advances in the physical aspects of the medicine. I lament the loss of personality. I had my children at home because I could not FATHOM the idea of birthing in that environment whereas that is birth factory we are in the Cancer Factory. It is the children’s job to show up sick and it is the nurses job to show up to inject, withdraw and notate. And quite frankly it appears that the doctor’s only job is to administrate.
I am irritated. Maybe you would be too if your daughter had leukemia and she worked at the Cancer Factory.