Preteen’s leukemia mysteriously fails to show up on blood tests

Patient's Name: Grace H.
Parent's Name: Melinda H.
Home Town: Hemphill, TX
Current Age: 13
Date of Diagnosis: Nov. 20, 2018 (12 years old)
Diagnosis: Acute Lymphoblastic Leukemia

How did you first find out Grace had cancer?

It was quite a process. She had pain in her back for about four months before we got diagnosed. She played volleyball and at first we figured it was because of that. Her back would start to hurt at night, I’d give her some acetaminophen, she’d go to sleep, and the next morning she was fine. But one day, a few hours after I gave her some medicine, she woke me up and said, ‘Mom, it really really hurts.” She had a high fever. We took her to the doctor the next day and they tested her for the flu, but it was negative. This happened again and again, every three weeks, like clockwork. The pain was getting worse.

They were testing her blood for all kinds of things, including leukemia, but it wasn’t showing up in the bloodwork for some reason. They sent us to Texas Children’s Infectious Disease thinking she had some mysterious illness. Then we consulted with Dr. Joanna Yi, who eventually became her oncologist. She said she was 98% certain it wasn’t leukemia but an immune disease that was mimicking leukemia, but she wanted to run a bone marrow biopsy to be sure. A while later she came back and said, ‘I’m so sorry but Grace does have leukemia; I am going to be your doctor.’

How did you react to that news?

Well, initially you just feel kind of relieved to have a diagnosis, you know, to solve the mystery of the pain she was having. But, at the same time, we found out the leukemia was pretty advanced – 88% in her bones and 24% in her blood – so any feeling of relief was short-lived. It was a whirlwind. It’s been a whirlwind ever since. They admitted her to the hospital that day, and we have been here either as an inpatient or an outpatient every week since then.

pic That must be very hard since you don’t live here.

Yes, we live 3.5 hours away. Grace has a 16-year-old sister still at home and one more sister who is in college. It’s incredibly stressful to drive back and forth so often, especially when it’s an emergency situation, like she spikes a fever or something, and you don’t know how bad it is going to be. Emergency rooms that are closer to us will not touch her unless it’s literally life or death, because there are just too many risks with a cancer patient whose immune system is down.

How has Grace handled it?

She’s doing well, even though it’s been hard. She is 13 and, of course, 13-year-old girls are going through a lot, cancer or not. You know, your body is changing, and how you see yourself, and then you lose all your hair and people you don’t even know start staring at you – it’s a lot. One thing I’d really like people to know is that when you see a kid like Grace, and you are wondering if they have cancer or you just want to reach out and say something like ‘I’ll be praying for you’ or something like that, please don’t stare or make a deal out of it. I know you are doing it with the best of intentions, but she is a teenager, she just wants to be normal. It’s really important to try to allow kids with cancer to live their life as normally as possible.

What’s next as far as Grace’s treatment?

Well, we’ve had some little bumps in the road, but overall she has been responding to the treatment, so that’s good. She’s been really really ill most of the past year, but we are starting to come out of it. Her treatments will be less severe, and I’m ready to have her back to her chipper old self. It’s going to take her a while to get her strength back, but I think it will be so helpful to return to her friends and her normal life. It’s been quite a journey. You definitely cannot understand it unless you’re going through it. The people we’ve met here – the understanding they have of what Grace is going through – that has been the silver lining.

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