Pediatric cancer parents: Why we traveled from Denmark for proton therapy at MD Anderson

When our son Lue was about 18 months old, we noticed he was sweating a lot. He was a happy toddler with no other visible symptoms. But when we had him checked by a doctor in Denmark, a lab test showed his blood counts were off. An ultrasound revealed neuroblastoma in his stomach and spine.

Traveling to Houston for proton therapy

In 2015, Lue started chemotherapy followed by surgery in Denmark. At the time, there were no proton treatment facilities available for children in Denmark, and proton therapy is the optimal radiation therapy treatment for pediatric patients. Because protons can be precisely controlled, pediatric proton therapy is ideal for tumors located near growing healthy tissues in the spinal cord, brain, eyes, ears or mouth.

So when the doctors in Denmark offered us the opportunity for Lue to receive treatment at MD Anderson, we made the trip to Houston. While Lue received proton therapy, he continued his chemotherapy.

We were fortunate to stay in Houston with other Danish families who also had children undergoing cancer treatment. It was encouraging to share our journey with them, and we remain in touch with some of the families.

Lue received a lot of love and care from Leo Flores and Yvette Rosenthal, the pediatric nurses at MD Anderson Proton Therapy Center. They took care of Lue as he underwent anesthesia for proton therapy. Their support and encouragement helped us get through each day.

Family bonding through a childhood cancer diagnosis

When we traveled to Houston, we brought along Lue’s two older brothers. It was tough for us to be away from home at such a crucial time. But it strengthened us as a family. Having his brothers there helped Lue get through each day of treatment. We found comfort in spending time together every day and facing Lue’s diagnosis as a family.

There was a guestbook in the lobby that we read often. A former patient wrote a reminder to not walk like a sheep but to walk and fight like a tiger. We took this to heart and reminded ourselves that we wanted to hold on to hope and fight like the tiger. A former patient at the Proton Therapy Center gave us bracelets with the slogan: “Never ever give up.” We wore those bracelets as a daily reminder for years after Lue’s treatment.

After Lue finished proton therapy, we returned home to Denmark. He had follow-up visits from his doctors in Denmark every three months, then yearly until he was in remission.

Return to MD Anderson provides perspective

Because Lue was so young when he underwent treatment in Houston, we wanted to give him memories he could remember. So in February 2023, we returned to Houston to let him tour MD Anderson. It was amazing to see the gong at the Proton Therapy Center that Lue hit after he completed treatment. We also got to reconnect with some of his care team. It was an emotional experience for all of us. It was important to us for Lue and his brothers to make new memories of visiting the zoo and parks in Houston as we had done so many times in 2015.

On one of the walking trails in Hermann Park, we saw a quote that put our experience into perspective. It said: “If you think in terms of a year, plant a seed. If you think in terms of 10 years, plant trees. If you think in terms of 100 years, teach the people.” It reminded us that when we were in Houston in 2015, we did not know what the future would have in store for us in just one year. All we could do was address the here and now and “plant a seed.”

Returning years later with our son in complete remission, we could see how our time had changed.

Today Lue is a healthy 9-year-old boy. He goes to school and loves playing soccer, reading, and spending time with his brothers. He has no side effects from the neuroblastoma or its treatment. He is in complete remission and sees his doctors in Denmark every year.

We are thankful for our time at MD Anderson and know it has shaped our son's path to never giving up.

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