When he was 3 years old, Luke, one of five St. Baldrick’s Ambassadors in 2013, was diagnosed with embryonal rhabdomyosarcoma, a type of childhood cancer in the connective tissues. Luke, now 7, has been off treatment and cancer free for over 2 years.
Luke’s mom, Monica, shares the story of Luke’s most recent scans.
As part of Luke’s off-treatment protocol for pediatric cancer, he undergoes regular MRIs of his abdomen and pelvis. Weeks before the procedure, we talk with him about it and give him the option of “sleepy medicine” or no “sleepy medicine.” The procedure takes about 90 minutes from start to finish. Although our facility is equipped with technology to distract him from the noise of the MRI, he opts to take the medicine. This involves going under anesthesia for the procedure. As we talk about what this means, Luke says to us, “I wish I just never had cancer in the first place.” He doesn’t say anything after that. Just matter-of-factly puts it out there.
On scan day, we leave our house by 5:30am for the 75-mile ride to the hospital. I keep Luke in his pajamas and let him sleep as long as possible during the trip. The car ride is silent. Just me, my 7-year-old childhood cancer survivor, and the 18-wheelers making their early runs. I know this drive inside and out. The curves of the highway, the horse farms, outlet malls, and suburbs that dot the highway.
We arrive at the hospital and check in. They know Luke by name. They remember his lion, Mike, who has been with Luke since birth and has endured every treatment with him.
The staff is running on time today. They wheel him into the prep area. Once there, things happen quickly. The nurses and anesthesiologists ask questions, rapid fire, like popcorn.
“How do you feel today?”
“Any loose teeth?”
“Any cold symptoms?”
“How much does he weigh, mom?”
As the oxygen mask goes over his nose and mouth, they ask him questions about Star Wars. Obi-Wan is his favorite Jedi. He wants to be an Army engineer or an artist when he grows up. Although he says nothing, I see Luke’s eyes start to well with tears and he reaches for my hand. I cry a little, too. It never gets easier. We have done this routine before, and I have complete trust in our medical team. But watching your baby go under is hard. I look into his eyes as he starts to fade away. “I love you. I am proud of you. I’ll see you soon.”
We are fortunate. Luke wakes up very well, and there is an excellent post-anesthesia care unit at our hospital. By the time they call me back to recovery, he is awake, watching TV, and eating his second popsicle. We drive home and go about our lives. Scans are always on Friday, and then we go back down to the clinic on Monday for results and consultation with his oncologists.
The wait is actually getting easier. I still have fear and moments where the “what ifs” leave me breathless. This is also part of the new “normal.” But we are all getting better at recognizing those moments and not letting them overpower us. Luke is especially good at moving on. He quietly accepts what must be done; he does it and then looks ahead.
I recently had a conversation with my mentor, who is also a cancer survivor. She always asks about Luke and our family. I said, “I really think he is over it.” Meaning, as much as a 7-year-old mind can, he has accepted his cancer without letting it define him. She said, “That is exactly what he should be doing. You don’t want him to be anything other than over it.”
On Monday, we met with his pediatric oncology team and received the all clear: “No evidence of disease.” YES! NED gets to stay a member of our family! And, Luke has graduated to scans every six months! In childhood cancer world, that is an eternity and another survivor milestone.
It is difficult to put our feelings into words. Relief, gratitude, joy, hope. All of these are true, yet none of them fully encompass the journey we have traveled, or the road ahead.
A few days after we got the good news, I was in the basement doing laundry. I could hear the boys in the backyard playing. I snuck upstairs to watch them. They were on the swings, laughing, making up rules to a new game. That moment was made possible by science, research, hope, love, family, and prayer.
Luke is NED. The more clear scans he has, the better the chances that both of our boys will have days like this to turn into memories.
Childhood cancer research saves lives. Donations made on or before June 30 will directly impact pediatric oncology research grants this year. Now is the perfect time to give.
Photos by Diane Liang Photography