Induction II, Day 42, or 2 ½ months, or Ten Weeks, or 77 days

Doesn’t matter how you count it…we’ve been here a long time. Sometimes we don’t realize how long it’s been. Days keep going by…

Ethan’s ANC is 1390 today. He has many white blood cells now at is pneumonia site, fighting that infection away. It would take many weeks to months in a healthy individual that had pneumonia to clear this “impressive” pneumonia (the doctors choose to use “impressive”, over what I would say, severe).

Clinically, Ethan is doing well. He appears to be well, breathes easier, is using only 1.0 liters of oxygen now, down from 5.0 liters a couple weeks ago. His chest tube, which was draining the fluid from around his right lung, was removed on Saturday evening. The removal of that has allowed him to get out of bed and sit in a wheelchair for the past two days. Yesterday, he spent the majority of the day in the wheelchair, bopping about between the Activity Room and the Resource Room. He planned a birthday party for Emma that we had on Sunday. Emma spent the night Sunday and hung out all day Monday, her birthday, here with Ethan. They had a good time together, drawing, playing, watching movies. It’s great to just be together, creating as much normalcy as possible, given the circumstances.

A team of both Infectious Disease and Oncology doctors met yesterday to discuss Ethan’s condition and transplant plan. As of right now, a concrete plan is hard to create. 1) This week, a surgical consult will be obtained to determine the necessity of a lung biopsy and/or partial removal of his damaged lung (dead tissue). A biopsy will rule out any undetected unknown infection, and removing dead tissue would clean up that lung, reducing the chance for additional infection to form, as bacteria might tend to hover around the dead portion of the lung. 2) At the end of next week he will probably have another CT scan, and perhaps a bone marrow biopsy.

The real determination of when to go to transplant is if and when lung surgery will take place, how long it will take him to recover from that, and subsequently if he might need an interim round of chemotherapy (we’re already 37 days from his last chemo treatment). There is a risk of cancer cells coming back if he goes to long in between chemo treatments. Lung surgery will also require a chest tube, yet again, but hopefully for only a few days. And perhaps, Intensive Care Unit (ICU) for a night or two after surgery.

Goals for the week: 1) With the help of physical therapy (PT), get Ethan back on his feet and walking. He hasn’t walked in over 3 weeks. Yesterday he stood up for 10 seconds or so, and complained his legs hurt. So, it will be a gradual process, with the help of PT, and something to shoot for by the end of the week hopefully. 2) Back on NG tube feedings of his kid formula – Nutrin JR…. He’s still getting his IV nutrition – into his blood stream -, and has tolerated Pedialyte through his NG tube for the past couple of days, at a very low rate. 3) Eat???? Friday Ethan blew me away by eating a snack food called “Tings”…they’re essentially like Cheetos…, anyhow, I offered them, like I offer everything, and he started eating them, and had many!, like 10 or so…that’s huge!, as he hasn’t eaten in 5 weeks or so…We’ll continue to try and find the magic food, the magic minute to offer the magic food, and who knows, maybe we’ll get luck again!