90/30

Tate finally had his Zoom appointment with the Phoenix Children’s Hospital GI doctor late last week. Between finding a PCH doctor that was willing to treat Tate even though he’s now 18 and the nurses kind of losing track of helping us with the referral, it seems like it took a long time to get this thing scheduled. So long, in fact, that Tate’s abdominal pain is gone.

Still, the appointment with Dr. Fernando was not a waste. He had reviewed Tate’s medical history and current medications before the appointment even started, and it was a genuine relief not to have to explain the story from the beginning. You wouldn’t believe how many times we have showed up to PCH for an appointment to have a new provider ask, “What are we seeing you for today?” Uh…leukemia.

Probably the best part of the appointment was how Dr. Fernando treated Tate with so much respect. You have not all met our Tate, but trust me when I tell you he has strong opinions. He always has. And the way Dr. Fernando interacted with Tate and talked through his objections was remarkable.

Tate’s main objections were that he didn’t understand why everyone is making such a big deal about his weight, and he didn’t want to be put on an appetite stimulant. I don’t know how Dr. Fernando saw what Tate needed so clearly through that Zoom appointment, but he decided to share a graph with us that had Tate’s height and weight since May 2018 plotted on a generic height-weight chart. He showed Tate that his height is in the 90th percentile, but that his weight is in the 30th and on a downward trend. Tate finally saw in that chart what he can’t see in the mirror, and he agreed to take the appetite stimulant.

Then the doctor said something that made Tate roll his eyes because it was the same thing I have said probably too many times the last few months, and that was that if he gets sick it’s going to be very dangerous because his body has no reserves to keep him going. And it isn’t a matter of if he gets sick so much as a when he gets sick. People get sick.

Dr. Fernando has placed some additional orders for blood tests to be run the next time Tate is in the clinic for chemotherapy, and he wants a stool sample, which we have come to call the “poop test.” Tate and I talk about a lot of awkward personal stuff, and sometimes re-naming things takes away some of the stress. The doctor also gave us instructions to continue the double dose of acid blockers for two more weeks and then return it to the normal dose to see how it goes. If the pain returns he may order a scope to look for an ulcer and an ultrasound for more imagining.

Tate’s chemotherapy appointment was at the end of July, and I didn’t realize I hadn’t posted an update until I got a text from a friend this morning checking in because the Dwayne had been dark for a while. Tate’s ANC was high enough for the second month in a row that they decided to increase one of his at-home chemotherapy medications from 3.5 pills to 4. The original dose prescribed was 14 pills, but that wiped out his immune system so completely they scaled it way, way back. I’m curious to find out how his systems holds up under the increased dose. We really never know with him.

The steroids hit Tate particularly hard this cycle; they made him weak, and he said his joints were “extra crusty.” And truly, it looked like he had an old man’s body that week. He was limping even though he wasn’t injured, and his bones were popping and creaking all over the place.

Tate has been swimming some evenings in lieu of doing exercises in the family room. It has been easier on his body to move around in the water, and he’s getting a great workout. Plus Greg goes swimming with him, and Tate loves to hang out with his dad.

Big, big thanks to my sister for sending an obscene amount of snacks to her skinny nephew!