Through My Eyes: Cancer Parents Facing the Unimaginable… Twice
Written by Rachel Wood (Marketing Director) & Julie Soung (Cancer Mom)
“Through My Eyes” is a series in which those affected by childhood cancer share a behind-the-scenes look into the ripple effect cancer has in their lives. Our goal is to raise $50,000 for rare pediatric cancer research in the month of September. Become aware, give monthly or donate. [Presented by Atrium Health Levine Children’s]
- Perspective: Cancer Mom
- Name: Julie Soung
- Son: Luca, 3 years old
- Cancer: Stage IV Wilms Tumor
- Diagnosed: 12.31.2019 at 2.5 years old
- Treated at: Atrium Health Levine Children’s
The unimaginable… again:
“When we got the news that Luca had cancer, it was like a punch to our guts. We instantly thought the worst and questioned why there was a potential chance we could lose another child? What did we do wrong to have this happen? Luca was an innocent little boy — how come he had to get cancer? Why not either one of us? But we knew we had already been through the worst thing imaginable when we lost Stella and if we could come out stronger after that, then surely we could also get through this. We knew we had to be strong for Luca.
I don’t think I could even put into words how amazing Luca handles everything cancer has thrown at him. Of course he gets scared before appointments, accessing or deaccessing, lab draws, or scans but it is so surprising to us how quickly he just bounces back from everything as if it didn’t even happen. He truly is the bravest boy we know. We have said it before and we’ll say it again – Luca is the definition of resiliency. After he had his major abdominal surgery where he not only had his large cancerous tumor removed, but also his left kidney, he was discharged after 7 days and up and moving again. That in itself shows how resilient he is. I guarantee if it was George or I, we would probably be laying in bed recovering for at least a month.”
Julie and George Soung experienced an unimaginable heartbreak in their life, losing their daughter Stella at just 32 hours old with no known cause. Stella would have been 4 this year. Then another unimaginable occurred, Luca was diagnosed with stage IV Wilms Tumor just 8 months ago on New Year’s Eve at 2.5 years old. The disease originated from his left kidney with metastatic lesions on his lungs and liver. Luca turned 3 in May and is just finishing up treatment. The Soung’s remain hopeful.
“Luca loves being outside and running around. He will point out all the different things outside and collect rocks and leaves. We love how he looks at the world so innocently and just enjoys nature (something that we feel like is lost on many children these days). We ask Luca all the time what he wants to be when he grows up… an astronaut!”
Wilms tumor is a solid cancerous tumor of the kidney that arises from immature kidney cells.
The moments you will never forget:
I will never forget the moment Dr. Pope told us Luca’s original chemo treatment plan was not working and his stomach and tumor seemed to be growing larger. I will forever remember that feeling, that pit in my stomach and heaviness in my chest.
It was a rainy day, we went into the conference room right next to room #1 on the 11th floor of Levine Children’s. I still find it so crazy that I can remember each room we have stayed in and the exact things we went through during those stays. And the exact emotions. I still remember how Luca was napping and in between talking to Dr. Pope about next steps, I would walk over and slowly open the door to make sure he wasn’t waking up and that he wouldn’t see me in tears.
I remember thinking how afraid I was about this rare situation, how the original course of action wasn’t working and questioning whether or not we would be able to attack it in the right way so the tumor would shrink enough to resect. I even still remember holding on to George and looking into his and Dr. Pope’s eyes and saying, “This can’t be. I can’t risk losing Luca too because it will be the end of me. What do we do now?”
I will never forget looking at Luca when he was skin and bones because he couldn’t gain weight, it was so hard for both George and I to see. He was already a small toddler and he kept getting smaller. He wasn’t walking much anymore and seeing him go from a wild, constantly moving at 100mph toddler to almost bed-ridden for about a month was super tough on us. I remember us having to make that decision to get a nasogastric tube placed and how heavy it weighed on us.
But with all the bad, comes the memorable… the good memories too. There are so many wonderful moments that stick out in my mind during the past 8 months and a lot of them include us celebrating all the victories along this journey…
- Learning his surgeon was able to resect 98% of his tumor.
- Getting good news after Luca’s CT scans that his lesions were getting smaller or had virtually disappeared and there were no new cancerous growths.
- Luca completing radiation treatment.
- Luca no longer needing the NG tube (he actually pulled it out himself and just started eating more again immediately on his own).
- Luca gaining weight, and Luca completing all his inpatient chemo treatments.
One moment that really stopped us in our tracks and still brings tears to my eyes is the moment he started to walk again. After laying down or being held 24/7 for a month, and pain from his surgical sites, he finally started to build the confidence again to walk and move. I remember Luca finally taking more than 5 steps and walking around the room and my heart just grew 100 times and both George and I were screaming, “You did it! You’re walking again!” It was almost like the same feeling when he first took his first steps when he was 9.5 months old.”
Throughout his treatment, Luca completed 31 weeks of chemo as well as 15 days of radiation to his whole abdomen, whole lung and liver. He has endured surgery to remove 98% of the tumor on his liver and also had his left kidney removed. The 2% that remained was lodged against the wall of his inferior vena cava, his surgeon did not feel comfortable proceeding with that. Their hopes were that it would shrink enough to surgically remove later or disappear completely after radiation treatment.
Cancer during a pandemic:
“Childhood cancer is hard. Really, incredibly hard. It’s emotionally taxing and physically hard on you and your child.
And then there is being in treatment during a pandemic!
Things have changed so many times with COVID. It can be pretty frustrating at times, but I know because the virus is new, everyone is still learning how to handle things. When COVID first happened, it was immediately changed that only one parent could go to the clinic and infusion appointments with Luca. Our temperatures were checked when entering the building, entering the clinic, and entering the patient rooms. Long days! We did have some inpatient chemo treatments when both George and I were allowed to go to the hospital for those as well as for the CT scan. Which we were very thankful for.
The biggest obstacle for us during the past 8 months is trying to find creative, but safe new ways to spend time together as a family when we are not busy with clinic appointments or hospital stays. And also finding ways to celebrate Luca’s victories and coming up with fun days or activities for Luca. Because of COVID, things that we normally would do to have fun just are not possible (i.e. going to the park playground, going to the library for story time and books, or even just going out for ice cream). We were already being very cautious before because Luca was/is immunocompromised but now it is like we do not even have the opportunity for any safe outings. It is also hard not being able to spend time with many of our family and friends because we want to stay safe and socially distant. We definitely have to keep our circle tight and we always ask the right questions before exposing Luca to anyone. It also has been tough on George and I individually because we no longer have the chance to get our own mental breaks. For example, we can’t plan spontaneous date nights to get a breather for an evening after a stressful week because we don’t feel safe eating in restaurants even though now some are open.
But there also has been some underlying blessings. You learn to cherish every moment with your family. You learn to take each day one at a time. You learn to embrace the messy and not to sweat the small stuff. Our family has grown so much stronger because of the adversities we have faced and we know we can tackle anything as long as we are together and have our tribe backing us up. We know that Luca looks to us for guidance and for comfort so we will continue to do the best we can to support him and get him on the other side of this.”
Luca had his last chemo treatment on August 28th. His final CT scan is scheduled for September 14. If Dr. Pope sees what she needs to see on the CT scan and there are no areas of concern, we will be celebrating! If there is anything suspicious left on the liver, Dr. Pope will order an MRI to get a closer look to determine if anything cancerous remains or if it is scar tissue.”
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*Photos courtesy of Julie, Luca’s mom.
*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES