A Case of Purple Chin

We all had mixed emotions about today’s appointment. The Nurse Practitioner that examined Tate was very nice and no doubt very competent, but she primarily works at the main campus in Phoenix and only fills in at the east valley clinic when they are short staffed. It’s hard to see someone new because Tate has had so many things go wrong that explaining it all seems impossible.

Today we brought Tate to the clinic with a purple patch of skin resembling a bruise on his chin. It’s about the size of a thumbprint. Tate has no idea how it got there; he hasn’t fallen recently, and he doesn’t remember bumping into anything. It’s very strange! The Nurse Practitioner didn’t have an explanation either; she told us to watch it and call if it gets worse. That’s a pretty fair assessment – Tate has had weird things happening to his skin throughout his treatment. While the adults in the room were shrugging their shoulders about what it could be, Tate said with confidence, “I have a case of Purple Chin.” And with that the issue was closed.

Tate’s bloodwork was not as strong as we anticipated. His platelets are at the low end of normal, but nothing critical so he was cleared for a lumbar puncture with intrathecal Methotrexate Thursday morning.

Tate’s ANC dropped to 765 from 1537 four weeks ago. And this is when it was truly difficult to have someone new at the appointment. One of the things that was supposed to happen at this appointment was to assess the dose of daily and weekly chemo we give him at home. The Nurse Practitioner’s eyes widened when she pulled Tate’s file up on her laptop and saw how his numbers have been all over the place. There has been no steady, and not knowing Tate she really wasn’t in a position to adjust his medications. We agreed to keep his Methotrexate and Mercaptopurine doses the same and come back in two weeks to re-assess.

I will say that one of the things I really appreciated is that when she looked into Tate’s file she immediately knew he was a complicated patient. She did not assume she knew what changes should be made to his treatment. For that she has my full respect.

A GREAT thing about today’s appointment is that we didn’t have to explain Tate’s nephropathy pain or light and sound sensitivity. He walked into the clinic instead of using a wheelchair and was comfortable enough that didn’t need his sunglasses or headphones. That is a huge victory! We didn’t even have to mention it.

Tate’s nurse Michelle walked into the room and immediately began scolding him. Evidently she wore a cat shirt specifically because she knew he had an appointment today, and there he was wearing no cats at all.

If you’re thinking Tate looks taller, you’re right. It amazes me that with all the trials Tate’s body has been put through the last 14 months, somehow it decided it also needed to grow taller. He’s standing at 6 feet 2 1/2 inches.

Our day ended on a frustrating note. After all the discussion about not changing Tate’s doses, the Prednisone prescription we picked up today has different dosing instructions than he has had in the past. The dose is higher by quite a lot. We don’t have to start giving Tate the Prednisone until after his lumbar puncture Thursday morning so there is time to figure it out, but we don’t know whether the pharmacy made a mistake or the clinic did. Either way, I’m so glad we caught it. Well, I caught it, and Greg will pursue the cause of the problem and and get confirmation on the correct dose. #teamwork

Tate had a visit from his cousin and her friend today, and we could hear the three of them laughing the entire time. It must have been great fun because Tate fell asleep right after they left and isn’t awake yet. Hopefully they will be able to come back after his treatment Thursday when he will need more cheering up.

I hope you are all doing great! I’ll try to get more pictures for the next post. This one is rather wordy.

S.