Patient's Name: Grey G.
Parent's Name: Holly G.
Home Town: Beaumont, TX
Current Age: 5
Date of Diagnosis: Jan. 25, 2019 (4 years old)
Diagnosis: T-Cell Acute Lymphoblastic Leukemia
How did you find out about Grey’s diagnosis?
He had a swollen lymph node in his neck. We went to his primary care doctor and did bloodwork and it was fine. Later, we noticed his spleen was enlarged. We went to pediatrician again on a Friday and got a call at 7 p.m. I was already worried but I didn’t expect, ‘I’m pretty sure Grey has leukemia.’ Of course I was devastated. I don’t know that you’re ever prepared for them to say that. He said, ‘I’ve already called Texas Children’s. The ER is where you go in, and they’re waiting for you. You need to go now.”
We were supposed to meet my family at dinner and somehow word just started trickling out; people started showing up. My pediatrician called me back again to make sure that I had heard what he said. He said, ‘You need to go to the ER immediately’ but I just walked around the house aimlessly for about an hour. Finally, my friend came over and said, ‘So, uh, what are you doing?’ I think I was just in total shock, and, also, if you pack the bag and make the drive, it makes it that much more real.
What did you tell Grey?
I had no clue how to tell a 4 year old that he has cancer. He’s never been sick at all. We ended up telling him that we would just be staying here for a little while and that his blood was a little bit sick, and they’re going to give you medicine to make you better. He was okay with that. As this process has gone along, he’s gotten more familiar with terms and what to expect.
What was the early treatment like?
Induction was pretty rough for us, taking all the oral liquid medications by mouth, he did not like that. Texas Children’s has a pill swallowing class that we know and love and I tell everyone it should be the first thing you do. At the beginning, he was nauseous and tired, but since we’ve gotten a handle on the medication, he’s been better.
How have things been going?
A couple of days after his last inpatient treatment, he spiked a fever. They didn’t know why. In the ER they were like, ‘We could admit you or send you home,’ and I was like, ‘Don’t send me home. He has a 103⁰ fever. I won’t sleep; he won’t sleep.’ We’re in Beaumont, it’s not right down the road. We wanted to be here.
So far, he’s done really well! His numbers have been good and he’s been pretty normal throughout this whole thing. We’ll be in maintenance for about three years.
What does Grey think about the hospital?
Grey calls this place a hotel and he thinks it’s great to be here. That day we were in the ER with a fever, he told me, ‘This is the best day ever.’ And I just have to know that because he thinks it’s the best day ever, then it is the best day ever. He’s 5, he doesn’t have the emotional baggage we have. So you just go with it – act like it’s the best day ever – because that’s what he needs, not doom and gloom. No matter what’s going on, or why we’re here, or where this road is going to take us, or any of those type of things, we just keep going.