Holidays bring good news to family who really needed it
Patient's Name: Levi J.
Parent's Name: Jenny J.
Home Town: Magnolia, TX
Current Age: 3
Date of Diagnosis: May 2019 (2.5 years old)
Diagnosis: Rhabdomyosarcoma
How did you find out about Levi’s diagnosis?
He was just really fussy for a couple of weeks, and I took him to the the ER at Texas Children’s Hospital The Woodlands. That’s when we found out he likely had rhabdomyosarcoma. It’s a cancer of the soft tissue, muscle tissue, connective tissue and sometimes bone.
What happened after you found out?After they told me at the ER, I had to call and break the news to my husband. It was a nightmare because we didn’t think it would happen to our family again. Levi’s sister Ellie had retinoblastoma, cancer of the eye, also when she was very young. I had Ellie and Levi with me, our 10-year-old twin girls were in school. They transferred him by ambulance to Texas Children’s in the Texas Medical Center right away, within a couple hours. They told me they suspected rhabdomyosarcoma, but they would have to do a lot of tests to confirm. We were in the hospital that first time for about 10 days. They started him on chemo like within 9 days. He has to have chemo and radiation.
What has the treatment been like so far?
His treatment will last a total of 42 weeks and we’re currently in week 30. It’s been getting harder on his little body as we’ve gone along. He’s had infections that have brought us back to the hospital a lot lately. But, we are very happy to report that he is now in remission! We will celebrate the gift of remission this Christmas!
Congratulations! That must be a huge relief!Yeah. A really big part of this – what makes your child having cancer so hard – is that you just don’t know. You don’t know how they’re going to respond to treatment, what sort of side effects they’re going to have. You’re informed of lots of things, but you don’t know how it’s going to play out. So the biggest thing I’ve learned is you have to have faith and take everything one day at a time. Sometimes 10 minutes at a time if that’s what it takes. You don’t know what tomorrow is going to bring.
How are you guys handling it?My children are very close. Very close. And for them to have to be apart like they have, it’s been really hard. It’s been hard for his older sisters to watch because they remember what it was like with Ellie. He’s experienced changes, in his physical appearance and how he acts. He’s more withdrawn at times, sad and angry at times, because he doesn’t understand what’s going on. The only time we ever get in the car with him is to come here. And he asks me every time Mommy, where are we going, and he’s so disappointed when he finds out it’s not somewhere fun. That’s the heartbreaking thing about this, he just wants to be a normal healthy kid and he does not understand why he can’t be.
What helps you get through it?Our whole family, especially Levi, responds much better to this when we try to keep the family unit together. Family members bring the girls to us when we’re in the inpatient unit. We try to have at least one sibling with him at all times. We have a wonderful support system of family and friends. That plus our strong faith; that's all that carries us some days.
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