Spoiler alert – Wes has cancer and is getting chemo. Just wanted to throw that out there in case you didn’t want to read all the gory details here.
Wes started chemo on Friday, September 14th at 10pm. His chemo comes in two doses, one dose given Friday night and one dose given Saturday night. The first dose consists of 3 different medicines, the second dose consists of 2 different medicines. Starting on Monday, so about 36 hours from his 2nd dose of chemo, he starts taking a medicine that will help build his white blood cell count up faster. He takes that medicine for about 14 days.
This cycle repeats 6 times, with the chemo happening every 4 weeks. His next chemo is tentatively set for October 12th or so.
During each round of chemo we will be in the hospital for 2 – 3 days.
In between times at the hospital for chemo this is what our lives look like: labs drawn twice a week to check his blood counts and this is done by a home health nurse who comes to the house, his white blood cell count will drop very low from about the 7th – 14th day after his chemo treatment and during this time we will likely stay sequestered at home with no visitors because his chance of infection is highest during this time, Jake and I administer the medicine to help his white blood cell count through his central line daily for about 14 days, and everyone’s hands age about 10 years from the amount of handwashing/hand sanitizing we do on a daily basis now.
At some point in the next 7 months he will likely get an infection in his central line and have to go to the hospital, no matter how careful we are. And at some point in the next 7 months he will likely have his white blood cell count drop too low, develop a fever, or need a transfusion and we will end up back in the hospital for a few days. But you know me, gotta be an overachiever, so our goal is to have Wes be one of the few kids that none of this happens to.
Before his next round of chemo, he will go in for another MRI to check to see if the cancer has spread outside of the eye (his cancer is currently entirely intraocular which is good) and to check on that pineal gland (if they see cancer in the pineal gland it becomes trilateral retinoblastoma and that’s a whole other ballgame). He will also have a thorough retinal exam while he is sedated – this is to make sure the tumors are shrinking from the chemo. That is all scheduled to happen on October 11th right now.
Chemo alone will likely not eradicate the cancer. The goal of chemo is to shrink the tumors, then a second therapy such as laser therapy will be used locally on his eyes to hopefully eradicate the cancer. We will know more about what exact second therapy they want to use when we get the results of the second MRI and retinal exam on October 11th. The second therapy will likely begin to happen in October, but he will continue the chemo through the 6 cycles. The tumor in his left eye is Stage D because of the seeding, fluid build-up, and partial retinal detachment (our understanding is that is a borderline C/D), and the tumor in his right eye is Stage B.
Alright. Think that just about covers it. You totally got all of that on the first read right?
Now, where is my “I know I’m cute, but please don’t touch me” or “stay back 50 feet” sign for Wes’ carseat and carrier?