Five months ago, on the day I put on the "bunny suit" and helped Ty go under so he could receive his port-a-cath for chemo, a nurse met with us in one of those consultation rooms. The tiny ones they take you into to drop the bombshell in your lap.
It was all so surreal. She put us through chemo school. "This isn't how we usually do it," she said, "But we gave Ty his first chemo tonight." Then she started rattling off acronyms I'd never heard before and explaining the dangers if the lab numbers dipped too low. Things like WBC, ANC, platelets, and hematocrit and all their reference values as well as the danger of fevers and how to recognize the signs of an infection were all discussed.
She must have seen the look of overwhelm in our eyes because she paused and told us, "Don't worry, you won't remember all these numbers and names now, but they'll become your new language. You will know this inside and out before long."
She was right. I had no idea about any of it except hematocrit. Now I can tell you all sorts of things about blood and what the danger zones are for each of the lab results. I understand words like "absolute neutrophil count," "bun," "creatinine," "platelets," "neutropenic," and so on. I have learned how to administer IV medication, heparin flushes, and can use sterile technique to access his port. We have had to become organized and systematic in dosing his several medications and we are religious temperature takers.
I have no idea how my brain has managed to expand to include these details, but I am humbled by the capacity within us to meet the challenges we face. It is an interesting phenomenon.
Many times, we see a trial that someone else is living with and we think that there is no way we would be able do it. But you know what, you could - if you really had to do it, you could. That is what is so remarkable about the human spirit. Sure, we wouldn't pick a particular hard thing to go through (who would ask for a holocaust?), but we, as a people, are incredibly able to rise to meet the challenges that come our way. We have only to decide that we. will. do. it.
After 10 weeks of chemotherapy with methotrexate and vinblastine, Ty's tumor had not stopped growing. In fact, it had tripled in volume. We heard that there was an oncologist with experience in desmoid tumors at the Huntsman Cancer Center. The only problem - they treat adults, not children.
We met with a pediatric orthopaedic surgeon with desmoid experience who worked at both the children's hospital and Hunstman. He was able to arrange a consultation with the oncologist. When we met with her, we were under the impression that Ty's tumor had stabilized. She informed us that it hadn't, there were new areas growing in the tumor. She ordered a second biopsy to confirm that it was indeed a desmoid tumor. The results came back - it was a desmoid.
The oncologist at Huntsman said she could recommend a course of treatment for Tyler, but she could not oversee it. We would have to go to the children's hospital. Ty's new chemotherapy is a drug called Doxirubicin combined with DTIC. It is administered by continuous IV at the rate of about 2 tsp an hour for four days. It is also very intense. His nausea is almost constant. He takes three anti-nausea drugs to try and stay on top of it.
Two weeks after his first dose, I found a pile of hair on his pillow one morning. That day we had a head-shaving party. I'll post pictures.
Mr. Triumph had promised Ty he'd shave his own head too when Ty's fell out. I pretty much begged him not to do it. The guys at work were shaving their heads to show support for Ty so Mr. Triumph compromised - he got a buzz cut. Isn't he great?
The only visible hair Ty has left are a few eyelashes and some very thinned-out eyebrows. We think he would make a great celebrity look-a-like as a mini Capt. Jean-Luc Picard.