Ninety-nine percent of the time, cancer is a malady tied to age. The cells in our bodies sometimes lose their battles against the toxins we’re exposed to, the sedentary lifestyles we lead, the viruses we contract as we go about our adult lives, and our genetic predispositions—and proliferate uncontrollably. The approximately one percent of remaining cancers occur in children. It’s a particularly cruel reality when infants, toddlers, and teenagers draw the proverbial short straw despite their comparatively pristine anatomies. And yet, the world of pediatric cancer often feels more hopeful than the adult equivalent. That’s in part because kids are so heartwarmingly irrepressible. But it’s also because young bodies tolerate aggressive chemotherapy far better than older ones; survival rates among kids are higher; and the unfathomable unfairness of the situation has compelled experts to come up with novel treatments as fast as they can. In fact, hospitals right here in the Denver metro area have become important players in this race to save young lives. We checked in with local researchers, practitioners, and patients to gain a better understanding of how pediatric cancer differs from the adult iteration. With their help, we break down—from diagnosis to treatment to survivorship—12 reasons why we can be optimistic.
Reason No. 1: Kids Get Different Types Of Cancer Than Adults
The oncology world uses a lot of unfamiliar terms, most of which look like alphabet soup to the layperson. The jargon is the same no matter how old the patient is, but the types of cancer are not. It’s easy to recall two of the more common pediatric cancers if you just remember the two B’s: cancers of the blood and brain. Pediatric tumors also develop in the bones, the kidneys, the liver, the nervous system, the connective tissue between organs, and the lymphatic system. “Our patient population here very much represents that,” says Dr. Lia Gore, head of the pediatric hematology, oncology, and bone marrow transplant program at Children’s Hospital Colorado. Younger folks can certainly get so-called adult cancers—the most prevalent malignancies in grown-ups are found in the prostate, breasts, lungs and bronchi, and colon and rectum—but it’s relatively rare. And that’s a good thing.
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The relative upside to some of the big, bad B’s and their evil cohorts is that many of the treatments for these pediatric-specific cancers have produced spectacularly successful results. (Although many adult cancers have high five-year survival rates, pediatric cancer survival rates are considerably better.) Colorado youth with cancers of the brain and nervous system have a 73 percent survival rate of five years or longer. And 88 percent of kids with both Hodgkin’s disease and non-Hodgkin’s lymphoma in the Centennial State live for at least five years after diagnosis. (National numbers, which also use the five-year survival rate standard, are comparable.) Maybe most critically, acute lymphoblastic leukemia (ALL), a blood disease that represents the most common type of leukemia in children, responds well to both chemotherapy and newer immunotherapy drugs. Oncologists have made such impressive gains combating ALL, in fact, that about 90 percent of patients are still in remission after 10 years.
“My practice is about treating complex, rare things every day,” says Dr. Jennifer Bruny, the director of surgical oncology at Children’s Hospital Colorado. “Our breadth of experience comes from the fact that we see things that are often just a little bit different from the last one we saw.”
Reason No. 2: Children Tolerate Chemotherapy Better
Remember that Pepto-Bismol jingle that outlined the symptoms of GI distress? (“Nausea, heartburn, indigestion, upset stomach, diarrhea!”) The song reads like a list of side effects from chemo, drugs that can kill rapidly dividing cells. Kids have an advantage over adults in this arena; although they’re not immune to the uncomfortable reactions, they can typically handle more chemo before they fall ill. According to Dr. Brad Ball, a pediatric hematologist and oncologist at Rocky Mountain Hospital for Children, youth receive more of the treatment per pound of body weight than grown-ups. Pint-size humans also get the drugs more frequently, sometimes as often as once a day. “Tell medical [adult] oncologists to give weekly chemo, and they’ll laugh in your face,” says Dr. Anna Franklin, an oncologist at Children’s Hospital Colorado. Kids rebound from the lifesaving toxins more quickly than adults because they don’t tend to have additional health issues—like lung or kidney problems—and their developing bodies adapt well to novel stimuli.
Shashanah Woodward usually employs stick sunscreen to protect her three sons’ faces. But one day in August 2017, the Parker resident ran out while at the neighborhood pool and had to use the squeeze-bottle kind. As she slathered it on, she discovered a lump on her five-and-a-half-year-old’s cheek. Brenden’s young age—and the accidental but early detection of the tumor—proved to be a blessing as he underwent 40 weeks of chemo and 20 days of radiation at Rocky Mountain Hospital for Children to attack a rhabdomyosarcoma, a connective tissue tumor. Brenden has tolerated the chemo so well that he’s been able to go to kindergarten on a regular basis and even take taekwondo classes. And his prognosis looks good; about 70 percent of kids with this type of tumor will have no signs of tumor recurrence five years after diagnosis.
The Little Things
They may be mature beyond their years, but kids fighting cancer are still kids—a fact not lost on local hospitals.
Riding In Style: Kids don’t always use wheelchairs to scoot down the halls at Children’s Hospital Colorado; instead, they often get pulled around in red Radio Flyer wagons retrofitted with special poles for their IVs. This tradition dates to the 1950s, when chemotherapy pioneer Dr. Sidney Farber began hauling his wee patients around in mini go-carts at a Boston children’s hospital.
Blast off: If Rocky Mountain Hospital for Children patients develop lesions around their tumor sites (a potentially painful problem), the prescription is breathing pure oxygen in a super-pressurized room, which helps the body regrow blood vessels. The cool part: RMHC’s two hyperbaric chambers look a lot like spaceships.
Sweet Sleep: When Children’s patients have to go under anesthesia for treatment, they get to pick a Lip Smacker flavor—maybe Bubble Gum Ball or Orange Cream Delight?—to line the insides of their masks.
Operating Theater: Should a patient require surgery at RMHC, she can choose a movie to play on the 12-foot screen in the operating room before she falls asleep—and in her room afterward.
Under The Microscope
For more than seven decades, childhood acute lymphoblastic leukemia (ALL) has been the test subject for many pioneering treatments. Here, some of the highlights.
1947: The father of modern chemotherapy, pediatric pathologist Sidney Farber, gives a pediatric ALL patient a drug called aminopterin, producing one of the earliest observed remissions of cancer.
1967: A new combination of several chemotherapy drugs and radiation that targets the central nervous system prompts about half of the ALL patients in a clinical trial to go into remission.
1998: A study at St. Jude Children’s Research Hospital in Tennessee discovers that personalized doses of chemotherapy, based on the patients’ abilities to flush out the drug, improve outcomes for ALL patients.
2014: A clinical trial sees remission in 90 percent of ALL cases after employing a new immunotherapy drug that uses modified cells from patients’ own immune systems to attack the cancer.
Reason No. 3: More Pediatric Cancer Drugs Are On The Way
There have been a lot of big days in the history of humans battling cancer: March 29, 1896, when radiation was first used to treat the disease; August 5, 1937, the day the National Cancer Institute was established; and December 28, 1947, when doctors observed one of the earliest remissions in a cancer patient. But one of the most important dates came a year ago this month, when Congress passed the Race for Children Act (RCA), a law requiring companies developing cancer drugs for adults to consider how those medicines could be helpful to kids as well. Previously, companies would receive Federal Drug Administration approval for adult use of a medication and then take years to run clinical trials exploring whether juveniles could benefit too. “Those delays, when you’re the parent of a child who might benefit from a promising therapy, are really difficult,” Children’s Hospital Colorado’s Dr. Lia Gore says.
Although they’ve already seen improvements with the RCA, Gore and her colleagues didn’t wait for the law to catch up with the needs of their patients. By the time the act passed, docs at Children’s were getting much-needed drugs to kids with cancer in about a year or two. In the early 2000s, Children’s researchers—alongside those at hospitals across the nation—led a push to go directly to the manufacturers of already-cleared drugs (some of them for conditions other than cancer) and explain the uses for pediatric oncology patients. Because the meds had already been deemed safe by the FDA, their approvals could be expedited.
But there’s another seemingly mundane factor that helps Gore get lifesaving meds to kids quickly: The hospital’s clinicians work on the same floor as its researchers, so conversations between Dr. A in the cancer unit and Dr. B in the lab happen when they run into each other in the hall. Those high-level discussions, Gore says, can lead to the speedier development of promising drugs.
That’s important because fewer than five medicines were cleared for specific use in pediatric cancer patients between 1979 and 2016. In recent years, though, Children’s has served as an integral site for clinical trials of multiple pediatric cancer drugs approved without the heavy restrictions of the past. This is good news for patients. And it’s because of doctors like Gore who like to think outside the system.
Reason No. 4: More Kids With Cancer Are Enrolled In Clinical Trials Than Adults
It’s not even close: More than half of pediatric cancer patients under the age of 15 (and 90 percent under five) receive care through a clinical trial, compared to less than five percent of adults with malignancies. There are many reasons why so few grown-ups are involved, from the dearth of accessible adult trials to fears of participating in research. But the massive enrollment of children comes down to just one factor: numbers. Pediatric cancer—and its many iterations—is so rare that hospitals need to sign their patients up for multisite clinical trials and work collaboratively to come up with effective treatments. Otherwise, oncologists would still be furrowing their brows over leukemia instead of being well on their way to a complete cure.
Reason No. 5: Colorado Oncologists Are Turning To Man’s Best Friend For An Assist In Saving Limbs
We know Coloradans love their dogs, but our four-legged friends may be giving back more than affection. The field of comparative oncology—the study of cancer in people and pets to benefit both species—often turns to pooches because they share more than 80 percent of our genes. “When you think about cancer as a disease that occurs because genes mutate, the more similar the genome, the more likely the same type of treatment will work,” says Dr. Nicole Ehrhart, professor of surgical oncology at Colorado State University’s Flint Animal Cancer Center.
CSU has been an international leader in this field for 30 years. Through the decades, canine research—in which clinical trials are similar to those for human cancer patients—at the institution has helped lead to FDA approval of medicines to treat cancers ranging from leukemia to bone malignancies. Ehrhart’s current work, however, is focused on trying to improve reconstruction techniques after surgeons remove bones and muscle tumors from legs and arms. “When you mechanically replace a portion of a leg bone, that bone doesn’t grow [anymore],” Ehrhart says. “Adolescents end up needing to undergo 15 to 30 surgeries in a lifetime because their devices experience wear, mechanical failure, and infection.”
Currently, Ehrhart is leading a research study that’s looking at whether stem cells culled from fat, bone marrow, or muscle tissue can regenerate bones and muscles for dogs with any cancer that affects those parts of the body. If her work is successful, she hopes it’ll lay the groundwork for research in humans—potentially saving the pediatric cancer field years of time it can devote, instead, to keeping kids alive.
Dr. Jennifer Bruny knew removing Emily McLaughlin’s neuroblastoma from her abdomen would be a challenging endeavor. The pediatric surgeon warned the three-year-old’s mother, Tara Geraghty, that she might actually see Bruny grabbing some food in the Children’s Hospital Colorado cafeteria during the eight-hour surgery. After the operation, Bruny delivered pictures of the tumor. Tara was disgusted, but Emily was fascinated. So, Tara enlarged the images and printed photos for Emily’s very own tumor-stomping party. The toddler and her nurses jumped all over the pictures, metaphorically obliterating the growth. Emily, now 12, remembers the shindig more than the painful parts of her treatment. That was Tara’s goal—and why she’s now writing a book about her strategy. A portion of the profits from Making Cancer Fun will go to Blue Star Connection, a Winter Park nonprofit that provides musical instruments to kids and young adults with serious illnesses. Years ago, Emily was the youngest recipient.
These Colorado nonprofits give children relaxing reprieves from being the kid with cancer.
Prostate cancer survivor Tom Evans and his wife, Dorothy, operate a ranch 60 miles west of Colorado Springs that introduces cancer patients ages 10 to 17 to agricultural life. The kids spend seven days driving cattle, riding horses, and feeding livestock in addition to engaging in more traditional camp activities. The ranch doesn’t have the capacity to give chemo through a port (essentially a permanent IV), so campers have to be somewhat down the road to recovery, but the 320-acre property is staffed with nurses during all camp sessions, and a physician is on call in case of medical emergencies.
Shining Stars Foundation
The signature program of this Tabernash-based nonprofit is its Aspen Winter Games (March 8 to 15, 2019), when 70 kids with life-threatening illnesses get to hone their skiing and snowboarding skills on Buttermilk Mountain. Everything is done on an adaptive level, with one-on-one instruction, and extra volunteers and a full-time medical team make sure all the youth, ages eight to 18, get safely from the slopes to dinner and the disco dance party.
This four-year-old Broomfield organization holds events every two months—not for kids with potentially fatal diseases, but for their brothers and sisters. Madelene Kleinhans, now 16, launched the group during her brother’s bout with leukemia to help siblings realize they’re not alone in their situation and to give them something to look forward to, whether that’s picking pumpkins in Lafayette or ice-skating in Louisville.
New Outfit: Rocky Mountain Hospital for Children finally has its own unit for bone marrow transplants. Previously, the Denver-based hospital had to send patients to Children’s Hospital Colorado for these complex procedures. Construction of the seven-bed unit wrapped up in early June, and Dr. Jennifer Clark hopes to begin doing transplants there by the end of the summer.
Reason No. 6: All Pediatric Brain Tumors Are now Curable—Except One that Local Docs Are Working On
It’s called a diffuse intrinsic pontine glioma (DIPG), a moniker that matches the complexity of this cancer’s anatomy. These ingenious cancerous cells grow among normal cells “like salt mixed in with sand,” says Children’s Hospital Colorado’s Dr. Adam Green, and make themselves at home in the brain stem, which controls breathing and swallowing. That means surgery isn’t an option. DIPGs have proved invulnerable to medication too. And while radiation can shrink the cells, they never go away. Life expectancy from diagnosis is less than a year.
That statistic doesn’t sit well with Green, who, at the funeral of his first DIPG patient seven years ago, vowed to improve the survival rate for other afflicted kids. That hasn’t happened yet, but the soft-spoken doctor and his colleagues are working on it: They believe they’ve isolated the mutated gene that drives the growth of DIPG. Now Green and Co. are trying to understand how that gene causes changes in cells and which medications—either brand-new or already-approved pharmaceuticals—might be able to target those problematic shifts.
In the meantime, they haven’t abandoned traditional treatments, believing chemo could have an impact on DIPG if they could just find the right cocktail of drugs—the number of possible combinations of chemo medications is staggering—to decimate all of those stubborn cancer cells. But Green isn’t giving up. “Giving a three-year-old a year or two of ‘extra’ time,” he says, “that’s not really acceptable to us.”
Reason No. 7: We’ve Got Doctors Who Are Trained To Care For A Tough-To-Treat Population
Before Andrew Diaz-Saldierna was diagnosed with “gray zone” lymphoma (so named because it doesn’t quite match either of the two most common lymphomas), he spent spring nights scooping up balls on the baseball field at Denver’s Abraham Lincoln High School. When cancer interrupted his life, the then 16-year-old had to trade the diamond for his bed, where he was often bedridden with intense nausea and exhaustion from chemo. While the unpleasant side effects of chemo are well documented, severe reactions like this are atypical—unless the patient is an adolescent or young adult (AYA).
Much like gray zone lymphoma itself, Diaz-Saldierna and his fellow AYAs—anyone between 15 and 39 who’s diagnosed with cancer—don’t fit into either the toddler-filled pediatric wing or the geriatric-leaning adult cancer unit. And it’s not just about finding a place that feels comfortable. AYAs’ tumors tend to be biologically different too. Molecular variances could explain why these patients sometimes respond poorly to treatments that work well in other populations or why their survival rates haven’t improved as much as those for young kids or older adults.
The good news: Children’s Hospital Colorado and Rocky Mountain Hospital for Children are well equipped to support these patients. Both hospitals sit adjacent to and have relationships with adult medical centers, making it relatively painless to move patients back and forth as needed. And each medical center employs a physician who’s board-certified in pediatric oncology and internal medicine, meaning that person has experience in both the adult and juvenile realms.
Children’s Dr. Anna Franklin, in particular, is brainstorming coping mechanisms specifically for the AYA population, including virtual reality as a distraction method during spinal taps (and even as a replacement for anesthesia and sedation) and an oncology education class just for teens and young adults. “It creates that environment where they can realize they’re not the only ones going through this,” Franklin says. “Because in their peer group, they’re not normal anymore.”
93% percentage of Rocky Mountain Hospital for Children patients with two types of bone malignancies who are alive 10 years after diagnosis.
Doctors there credit a technique called intra-arterial chemotherapy, which they’ve been using for decades now, for that success. The treatment requires radiologists to isolate the main blood vessels feeding a tumor and infuse high doses of chemo through those arteries, which doctors believe delivers a more direct punch to the cancer. The procedure is repeated every three weeks until at least 90 percent of the blood flow to the tumor is cut off, and then surgeons remove the growth. RMHC is one of only a handful of centers in the country that use this method.
Reason No. 8: A New Wave Of Immunotherapy Drugs Are Being Developed for Pediatric Cancers
In the cancer world, leading researchers are akin to superheroes, swooping in when all seems lost and figuring out how to destroy villainous cells. So when Dr. Terry Fry left the National Cancer Institute in February to be the co-director of the human immunology and immunotherapy initiative on the University of Colorado Anschutz Medical Campus and an endowed chair in pediatric cancer therapeutics at Children’s Hospital Colorado, it was as if Gotham City lost Batman to Aurora.
In 2015, Fry was among the first doctors to modify immune cells from patients in a way that would allow them to attack pediatric acute lymphoblastic leukemia (ALL). Typically, the immune system recognizes damaged cells as a serious threat and tries to get rid of them. But it’s difficult for the immune system to recognize pediatric cancer cells because they often don’t look all that different from normal cells. Fortunately, ALL cells can be distinguished by specific proteins that hang off the surface. So, Fry and other colleagues modified T lymphocytes, a type of white blood cell crucial to immune function, into super soldiers designed to locate and kill ALL cells that express these proteins. To say the treatment worked is an understatement: 70 to 90 percent of patients across multiple early clinical trials went into complete remission.
But super soldier T cells, known to cancer docs as CAR-T cells, aren’t necessarily the be-all and end-all solution. Cancer cells can evolve rapidly—in a matter of months—and they have the potential to shake off those conspicuous proteins to avoid detection.
That’s where Fry’s new research comes in. Because there’s more than one type of protein on each cancer cell, Fry is developing treatments that target multiple proteins simultaneously; he hopes to launch a clinical trial in Colorado by 2019. The physician is also looking into drugs that could increase the expression of the proteins (think of the medications as flashlights that make the molecules easier for CAR-T cells to see) and researching which proteins are less likely to disappear from cancerous cells. “We think this is the time to not sit back and rest on the laurels of the advances of the last four or five years,” Fry says. In other words, Batman is here to save the day.
$475,000: Cost of Kymriah, a CAR-T cell drug for acute lymphoblastic leukemia. The eye-popping price tag stems, in part, from the fact that each batch is custom-made for an individual patient, although Fry and many insurance companies hope that, eventually, CAR-T cell meds can become one-size-fits-all—or, at least, one-size-fits-several.
The month of May loomed large in the minds of Castle Rock residents Carrina and Nelson Waneka. That 31-day timeframe marked 11 months since their daughter had been diagnosed with a highly fatal form of brain cancer called DIPG. For most kids, that’s all the time they get. Life expectancy post-diagnosis is less than a year. Based on recent tests—an April MRI showed the cancer had progressed—four-year-old Piper is succumbing to the disease as well, albeit less quickly than the statistics portend. But you’d never know it. Spunky and full of energy, the inquisitive little girl is partial to the color pink, loves baking cookies, and can’t get enough of warrior princesses. “Piper has definitely been a fighter,” says Dr. Jean Mulcahy Levy, Piper’s primary oncologist at Children’s Hospital Colorado. “She continues to play, no matter what her underlying limitations are.” The toddler’s perky attitude has helped her parents continue to hope, despite the prognosis. “She has every expectation that she will have another birthday and another Christmas,” Carrina says. “As educated and rational as you think you are, when you’re in our boat, you believe in miracles.”
Reason No. 9: Pediatric Cancer Treatment Is About More Than Just Medication
As an adult, you generally expect to visit the doctor’s office and be treated by your personal physician, and maybe a medical assistant or a nurse. The reality is different if you’re a pediatric cancer patient. In addition to various MDs, a child with a malignancy will typically see a psychologist, a social worker, a child-life specialist (someone who helps patients work through things like needle phobias), an arts therapist, an educational specialist, and a family navigator, who connects patients with financial and community resources.
This extensive wellness team is built on the premise that cancer doesn’t just take over your body—it takes over your life. That’s the case even if you’re not the actual patient; everyone from parents to siblings may need help coping with the attendant anxiety. That’s why Children’s Hospital Colorado introduces social workers and child-life specialists to families soon after they’ve received a diagnosis and well before they begin to face challenges as a result of treatment. That early interaction is a rarity at adult and even other pediatric hospitals. “For me, the most difficult kind of psychosocial intervention is saying, ‘I understand you’re having a problem, let me introduce myself,’ in the middle of treatment,” says Bob Casey, a clinical psychologist and the founder of Children’s seven-year-old wellness program. “I’m a stranger to them.” Introduced earlier in the process, though, Casey and his team, which has recently expanded from 12 to 20 members, have a chance to build relationships with the patients and their families. And sometimes, he says, that little bit of support is all they need to keep fighting.
$289.8 Million: Amount spent by the Maryland-based National Cancer Institute, one of the largest funders of cancer research in the world, in fiscal year 2016 on studies that were specifically focused on pediatric cancer. That number represents just 5.6 percent of the organization’s budget. The National Cancer Institute does, however, support more general studies on cancer, which have led to advancements in treatments for children; its parent agency, the National Institutes of Health, gives additional money to the cause of pediatric cancer too.
Reason No. 10: There Is No “I” In Team For These Docs
Once pediatric oncologists had a cancer killer called chemotherapy in hand in the 1940s, they began thinking about ways to improve the treatment—and quickly recognized the need to pool their knowledge. “They realized pediatric cancer is rare enough that if each institution is doing its own thing and not sharing nationally, then we’re not going to answer questions very quickly,” says Children’s Hospital Colorado’s Dr. Jennifer Bruny. That epiphany led to the creation of several groups in the 1950s (whose descendants merged to form the Children’s Oncology Group in 2000) that set standards for cancer care and created data-sharing partnerships between physicians and institutions across the country and around the world. “If I have a weird question, it’s an easy thing to ask of the pediatric oncology community at large,” says Rocky Mountain Hospital for Children’s Dr. Brad Ball, “whether it’s at Children’s down the street or at St. Jude Children’s Research Hospital in Boston.” Most pediatric cancer physicians point to those open lines of communication as one of the main reasons for the astounding jump in five-year survival rates for pediatric cancer patients—from 10 percent to more than 80 percent in the past 60 years.
Reason No. 11: Discussing a Patient’s Potential InFertility Is No Longer Off-Limits
It’s a bit of a cancer catch-22: Chemo is designed to wipe out fast-growing cells in the body, not just the malignant ones that have begun dividing out of control. Female eggs and male sperm (plus the stem cells that eventually produce sperm in prepubescent boys) fall into the former category, which can present problems for cancer patients who haven’t reached childbearing age or had kids yet.
Up until about 10 years ago, however, the issue was rarely discussed. Egg freezing was considered experimental until 2012. Plus, talking about the fertility of a person too young to know where babies come from was considered inappropriate, and chatting with an 18-year-old, parents in tow, was only marginally less awkward. “Thirty years ago, cancer was ‘the C word,’ and everybody whispered it,” Children’s Hospital Colorado’s Dr. Anna Franklin says. “Sex was a similar thing, and because of that, oncologists weren’t trained to talk about fertility.”
When advocacy groups began raising awareness about the dilemma in the early 2000s, medical societies responded, creating guidelines that educated providers. Franklin, for instance, now starts the conversation by treating infertility as just another potential side effect of chemotherapy and always asks if her patient has ever considered being a parent. “Most of them are like, ‘Oh, God no, I’ve never even thought about it,’ ” she says.
Although the discussion can be uncomfortable, research has shown patients and their families are more satisfied with their care if the topic of fertility is broached. “Parents are getting a lot of bad news [during that time period],” says Dr. Serena Dovey, a reproductive endocrinologist at University of Colorado Advanced Reproductive Medicine who consults on cancer cases for Children’s. “But what we’re focusing on is the future of their child, when they’re cured from cancer.”
When Addison Kleinhans first found out he had acute lymphoblastic leukemia, the five-year-old Broomfield resident didn’t understand what was happening. He simply knew he wasn’t allowed to go to the playground anymore. His doctors, however, knew this: His compromised immune system meant even a mild cold could be life-threatening. Less time on the swings wasn’t the only downside; Addison also had to endure painful injections and the chill of the chemotherapy drugs surging through his body.
But he and his mother, Sarah, capitalized on his diagnosis. They used social media to collect letters to Santa Claus for Macy’s, which donates a dollar to the Make-A-Wish Foundation for every message. By his final year of cancer treatment, Addison had gathered more than 20,000 letters.
Today, the 14-year-old has also given more than 100 speeches in an effort to raise awareness about pediatric cancer. And this past June, Addison celebrated the ultimate success: five years of being cancer-free.
Pluses & Minuses
There are myriad ways to preserve fertility before treatment begins, but nearly all of them have drawbacks.
Scenario 1: A 10-year-old girl with a Wilms’ tumor hasn’t yet begun to menstruate.
Potential Solution: Some hospitals have started using experimental techniques to freeze parts of or whole ovaries from patients who haven’t reached puberty yet. The ovaries would then be reinserted back into the patient after cancer treatment.
Obstacle: These methods aren’t widespread in America or completely reliable anywhere.
Scenario 2: A 15-year-old girl with bone cancer has gotten her period and says she would like to be a mom someday.
Potential Solution: Her eggs can be harvested and frozen.
Obstacles: Doctors need to stimulate the ovaries for 10 to 14 days before extracting eggs, but many patients can’t wait that long to begin chemo. The process is also pricey—as high as $20,000—and rarely covered by insurance.
Scenario 3: A six-year-old boy is battling non-Hodgkin’s lymphoma, and the drugs he’s taking put him at high risk for infertility.
Potential Solution: Doctors can do a testicular biopsy and remove stem cells that will then be transplanted back into the patient to produce sperm once he reaches puberty.
Obstacle: This technique is promising but has associated risks and is still considered mostly experimental.
Reason No. 12: The Late Side Effects Of Cancer Treatment Are Being Addressed
Once a month, an unusual group of people flocks to Aurora’s Anschutz Outpatient Pavilion. Their battle wounds mark them as a unique crew: survivors of childhood cancer. All age 21 or older and at least five years out from diagnosis, these patients have appointments at a clinic called TACTIC (Thriving After Cancer Treatment Is Complete).
Childhood cancer survivors may have to deal with a host of issues, from hormone deficits to heart problems to cognitive issues—all potential consequences of drugs that, at one point, made them healthier. Because so many people diagnosed with cancer as kids are now living well into adulthood, oncologists are starting to see more of these side effects crop up. TACTIC providers identify and treat these issues.
TACTIC patients see a pediatric oncologist, a nurse educator, an internist, and a medical psychologist, but they can also be referred to specialists. “Once they leave Children’s, they often fall through the cracks,” says Dr. Brian Greffe, a pediatric oncologist who helped start TACTIC 10 years ago. “We’re empowering them to take care of themselves as adults.”