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Mother takes matters into her own hands


Patient's Name: Avery I.
Parent's Name: Athziri O.
Home Town: Austin, TX
Current Age: 11 mos.
Date of Diagnosis: Mar. 24, 2019 (5 mos. old)
Diagnosis: Acute Myeloid Leukemia

How did you find out Avery had cancer?

She was just a few months old when I noticed these little polka dots on her tummy. We thought she had a cold, she would cough every night and sometimes throw up. I took her to the ER and they told me it was just a virus, it will go away on its own. A week later and it didn’t seem to go away, so I made an appointment with the pediatrician. We thought it might be an allergic reaction to her formula. It was switched up 3 times. The polka dots were still there.

Then I took Avery to Laredo to visit some family, and I decided to take her to see a doctor, who said she was neutropenic, anemic, needed blood and needed to be hospitalized. We came straight back to Austin, went to the ER, and that whole night they drew blood, examined all types of diagnoses, and they told me it was either AML or transient myeloproliferative disorder (TMD). It took around 4-5 days to rule out TMD, and I was like, ‘OK, good.’ But then I realized, ‘Oh, that means it’s AML. Avery has cancer.’

What did it feel like to realize that?

They told us in a really calm way. They took us to this little conference room, me and my husband and my mom, and they were explaining what it was and everything. They said she has 9-13% AML. It broke all of our hearts. I was like, ‘OK, I’m going to be strong, I can do this.’ Then my grandma was in the room and I tried to explain it to her, but I started crying and melting down. Why would this be happening to her?! It doesn’t run in the family. She’s just a few months old. It was so very shocking and unexpected.

They told us she would start chemo on the 28th of March. They told us all about the chemo, the symptoms and risks and after effects, and I just stayed silent. I couldn’t believe it. I thought how can her body handle this? She’s only 5 months old! I couldn’t process it. It took me a very long time to calm down, relax and listen to what they were saying.

What were the first couple months of treatment like?

We went through her first round of chemo and she did very well, the only thing she did get was a hot red rash all over her tummy, arms, back, legs. She didn’t want to be touched at all. Once we were done with first round, we went home for a week, and then we went back for her second round for another month. I thought she was doing really well.

Then they told me Avery’s AML can only be cured with a bone marrow transplant. They said there was an 80% chance of it coming back in the future and even stronger. So we were like, ‘OK, what do we have to do, what’s next?’ They said you can go to Houston, Dallas or San Antonio to get the BMT. I don’t have family in any of those places, so that didn’t tip the scales. We did our own research on all the hospitals, and Houston seemed to be the very best choice, so we came here.

pic So you had to transfer to Texas Children’s to get a bone marrow transplant?

Yeah. We were here for an appointment with Dr. Krance, Avery’s BMT doctor, on a Friday, and he said, ‘You’ll get admitted on Sunday.’ We were like, ‘What?!’ I wasn’t prepared. We raced home Saturday morning, grabbed some stuff and came back to Houston.

My husband was Avery’s donor, thankfully he was a good match. June 8 was her transplant, and Avery and I can’t leave the hospital for at least 100 days after the BMT.

Wow, that’s a lot to process, a lot of change.

I’m 21 years old, the same age as some of the patients here. I’m still very close to my parents, I’m used to relying on them so much. But they can’t be here with me for 100 days to help out. Neither can my husband. It’s like the first time I’ve had to really grow up, more so even than when I got married and became a mom. I have to be the one going through this, making decisions, being strong – not them.

What helps get you through it?

My husband comes on the weekends, and we face time many times a day. I tell myself, ‘You’re not lonely, you have the nurses.’ In Austin, we had the same nurse for three days, but here they change out every day. So it’s like, ‘OK, I’ve got new people to meet every day.’ It makes time fly faster. Another day, another nurse, before I know it we’ll be done.

If this works, no more chemo. This is our last step of our journey, hopefully. If she keeps up her good work, we can go home. She looks remarkably healthy. She’s strong. My grandma tells me her hair will grow back even prettier.


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