Affected person Story
Affected person Story Highlights
- At 3 weeks previous, Julian was identified with bleeding in his mind, possible brought on by a tumor.
- After an unusual and extremely dangerous surgical process, Julian’s mother and father discovered that he had mind most cancers, particularly an aggressive most cancers: excessive grade glioma.
- At 7 months of age, Julian had one other operation to take away the stays of the chemo-shrunken tumor.
When 3-week-old Julian Letchworth arrived at Johns Hopkins Kids’s Heart’s emergency division on a Saturday in August, his prognosis was past dire. Emergency mind surgical procedure would possibly save his life — quickly — if he survived the process.
“I bear in mind having a dialogue together with his mom, telling her that it was a foul state of affairs and we might do our greatest,” says neurosurgeon Eric Jackson, who operated on the tiny child that day.
Julian had been identified with bleeding in his mind, possible brought on by a tumor. The aim of the surgical procedure was to take away blood clots, management the bleeding and stabilize the younger affected person.
Mind surgical procedure on a 3-week-old child is rare and extremely dangerous, partly as a result of immature brains bleed greater than grownup ones, and such a small individual can’t afford to lose a lot blood, explains Jackson, who primarily operates on kids however hardly ever ones that younger.
Julian survived the four-hour surgical procedure, however a biopsy of tissue eliminated through the process confirmed the fears of Julian’s household and clinicians: The new child had mind most cancers, particularly an aggressive most cancers: excessive grade glioma.
Julian’s situation was uncommon. Johns Hopkins pediatric oncologist Eric Raabe says he might even see 40 to 50 sufferers every year with pediatric tumors, however perhaps only one with a most cancers that developed in utero.
He and fellow Johns Hopkins pediatric oncologist Sarah Watt solemnly broke the information to Julian’s mother and father, Emily and Jordan, who stay in Elkridge, Maryland. The docs defined that the tumor was aggressive and would re-grow after the surgical procedure. They urged palliative and hospice care to assist handle the signs brought on by the tumor and potential therapy.
A couple of days later, after reviewing the tumor’s look with pathologists, the oncology workforce proposed a chemotherapy routine.
Emily and Jordan’s feelings had been nearly past comprehension.
“We needed to make the choice to enter therapy realizing there was a chance he wasn’t going to make it,” says Emily. “I knew the aim of the chemo was to increase his life, not essentially to save lots of his life.”
For Julian to have any hope for survival, the routine must be simply the best mixture of chemotherapy medicines, and he wanted to reply effectively to them. His mother and father and care suppliers must be vigilant, as a result of even a tiny an infection might be lethal, as a result of the chemotherapy would torpedo his white blood cells. And even when the therapy succeeded in shrinking the tumor, Julian would want a future surgical procedure to take away remaining malignancies.
That was greater than three years in the past.
In the present day, Julian is a sturdy, impish toddler who greets new mates with an enthusiastic, “Hello,” punctuated by a smile that lights up his face. The most cancers is gone, and he’s a preschooler.
Whereas having fun with lunch lately together with his mom and his grandmother, Danette Riviello, on the cafe in Johns Hopkins Kids’s Heart, Julian was energetic and curious earlier than exploring the adjoining courtyard.
He’s receiving assist to beat some speech delays, however “he’s someone who has the capability to have an nearly full restoration,” says Raabe, affiliate professor of oncology and pathology on the Johns Hopkins College College of Drugs. He’s the uncommon youngster who enters and leaves hospice care.
“We needed to make the choice to enter therapy realizing there was a chance he wasn’t going to make it.”
Emily Letchworth
‘I Knew It Wasn’t Going to be Good’
Quickly after Julian was born on Aug. 8, 2020, at Howard County Normal Hospital (now Johns Hopkins Howard County Medical Heart), he displayed an unnerving behavior of failing to breathe till somebody gave him a shake. An ultrasound confirmed he had a mind bleed that was inflicting seizures, and the toddler was transferred by ambulance to the Kids’s Heart.
“I knew it wasn’t going to be good when a health care provider and a social employee got here in to inform us” the ultrasound findings, remembers Emily, a faculty psychologist in Baltimore County. “I simply began crying.”
By Aug. 19, Julian had been stabilized with anti-seizure medicines, and Emily and Jordan introduced their fragile new child dwelling. They acknowledged a few week later that he wanted to return to the Kids’s Heart.
“He was screaming and throwing up and kind of passing out,” remembers Emily.
They referred to as 911, and whereas Jordan rode with Julian within the ambulance, Emily referred to as her mother and father, who had been on their solution to the seaside, and requested them to return again. Jordan’s mom, Leslie Tucker, went to Baltimore too, from Virginia.
This was through the peak of COVID-19 lockdowns, and just one mum or dad at a time was allowed within the hospital on account of security causes. Emily and Jordan took turns being with their child, whereas the opposite sat in a parked automotive with Julian’s grandparents.
Julian began chemotherapy when he was 7 weeks previous, and continued it for a 12 months. Based mostly on regimens that had been recognized to work for youngsters with aggressive mind tumors who’re lower than a 12 months previous, Raabe and Watt devised a customized routine for Julian that alternated between cycles of cyclophosphamide/vincristine and carboplatin/temozolomide/vincristine. Switching between regimens would maintain the most cancers off steadiness, Raabe explains.
The medicines had been administered by a central line as soon as per 30 days. Every time, Julian stayed within the hospital for 5 days or so to observe for infections whereas his white blood cell depend dropped.
Throughout his first 13 months of life, Julian spent 97 nights within the hospital, says Emily. He was within the Kids’s Heart for his first Halloween and his first Christmas. The excellent news through the chemotherapy was that it was working.
Nurses and docs “actually liked him,” Emily says. And, although he had each purpose to not, Julian smiled so much.
“He tolerated chemo very well and tolerated the central line very well,” says Watt, a analysis and scientific fellow in pediatric oncology.
At 7 months of age, Jackson once more operated on Julian, this time to take away the stays of the chemo-shrunken tumor. When pathologists regarded below the microscope, they noticed a really totally different tumor that was principally useless, Raabe says, noting, “This was very encouraging and led us to proceed with the remedy to verify we saved the stress on any surviving tumor cells.”
When he was 13 months previous, Julian completed chemo, and in March 2022, “they bought a transparent scan and it began to sink in that we had turned a nook,” says Emily.
Nowadays, Julian will get checked each six months. He’ll ultimately have surgical procedure to interchange a lacking piece of his cranium. He nonetheless takes anti-seizure medicine due to the dangers posed by the tumor location and surgical procedure, however he hasn’t had a seizure in years and is being weaned off the medication, says Watt.
“If you happen to noticed him on the playground, you would possibly say he doesn’t have as many phrases as some his age, however he’s speaking and he’s going to catch up,” says Raabe.
“We don’t know what the longer term holds, however issues are trying good proper now,” Raabe provides. “And it’s due to our pathologists, due to Dr. Jackson, as a result of we gave him a custom-made chemo plan and since Julian’s mother and father reacted shortly and noticed that he wanted assist. It’s not simply luck. It’s all the selections that folks made alongside the way in which.”
