Facing Childhood Cancer and a Rare Disorder as a Family
- A father of two little girls recently turned down a job offer with more than a $200,000 salary in order to spend more time with his family. His 5-year-old girl, Sophia, is currently battling brain cancer, and his 3-month-old baby is currently facing hyperinsulinism.
- Hyperinsulinism is a rare and complex disorder that can cause moderate or severe hypoglycemia (low blood sugar) in infants and children. It may be a temporary condition or permanent, according to UCLA Health.
- Symptoms of brain tumors are often caused by increased pressure in the skull. Symptoms may include headache, nausea, vomiting, blurred vision, balance problems, personality or behavior changes, seizures, drowsiness or even comas. It is important to note, however, that these symptoms are not exclusive to brain tumors.
- Treatment advances in recent decades have lead to 84 percent of children with cancer now surviving five years or more, according to the American Cancer Society. But there is still much room for improvement. The National Pediatric Cancer Foundation says more than 95 percent of childhood cancer survivors have significant health-related issues because of the current treatment options, and only 4 percent of the billions of dollars spent each year on cancer research and treatments are directed towards treating childhood cancer in the United States.
Matt Shaw, 39, was left his role as a financial analyst and turned down an over $200,000 job offer without hesitation. The reason being was wanting to be around for his wife, Tracy, 33, his 5-year-old child, Sophia, battling brain cancer and his 3-month-old baby, Delilah, battling a rare disorder called hyperinsulinism.
Read MoreDoctors have told the family that it is “only a matter of time,” but her parents are determined to keep fighting for their little girl. They’ve started a GoFundMe page to raise money for a variety of treatments that will hopefully be able to attack the cancer head on.
“We want to try and keep life as normal as possible for Sophia so we don’t let on too much about what is happening and we have to be brave ourselves,” Shaw said. “The doctors say that there is nothing they can do for Sophia this time, but we refuse to accept that the cancer will win this battle.”
On top of it all, the family is also taking caring of their youngest child, Delilah, as she takes on a rare disease that has lead her to have higher than normal insulin levels in her blood. She has to be fed every three hours, according to The Mirror, or she could become fatally weak.
“I asked the doctor what are the chances of this happening, you know the cancer coming back but in a different part of Sophia’s body and then Delilah being diagnosed with this condition,” Shaw said. “He shook his head and said ‘it’s billions to one’, he said ‘I can’t put a number on it,’ one of these things happening is rare enough in itself.”
But despite the incredible odds of these simultaneous battles occurring in his children, Shaw will not give up hope.
“The thought of living in this world without either of my little girls is just not an option,” he said. “We will do everything in our power to see both of them grow up and start families of their own.”
What Is Hyperinsulinism?
Hyperinsulinism is a rare and complex disorder that can cause moderate or severe hypoglycemia (low blood sugar) in infants and children. The disorder may be a temporary condition or permanent, according to UCLA Health.
In people with hyperinsulinism, the insulin-producing beta cells of the pancreas are dysfunctioning because, normally, these cells exclusively release insulin when a person ingests carbohydrates or proteins. But hyperinsulinism means that these cells are producing too much insulin which, in turn, leads to hypoglycemia since insulin works to lower blood sugar levels.
Hyperinsulinism can be caused by multiple factors:
- Babies can develop hyperinsulinism if the mother has gestational diabetes or experiences significant stress in utero.
- It can be genetic.
- Hyperinsulinism can be a part of other conditions like Beckwith-Weidemann or Kabuki syndrome.
What Are Brain Tumors?
According to the American Society of Clinical Oncology (ASCO), brain tumors account for 85 to 90 percent of all primary central nervous system (CNS) tumors. The central nervous system consists of the brain and spinal cord and acts as the main "processing center" for the nervous system. Normal function of the brain and spinal cord can become difficult if there's a tumor present that puts pressure on or spreads into nearby normal tissue.
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There are many different types of brain and spinal cord tumors. Some are more likely to spread into nearby parts of the brain or spinal cord than others. Slow-growing tumors may be considered benign (non-cancerous), but even these tumors can cause serious problems.
General Symptoms of Brain Tumors
Symptoms of brain tumors, as a whole, are often caused by increased pressure in the skull. This pressure can be caused by tumor growth, swelling in the brain or blockage of cerebrospinal fluid (CSF), according to the American Cancer Society.
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General symptoms may include the following:
- Headache
- Nausea
- Vomiting
- Blurred vision
- Balance problems
- Personality or behavior changes
- Seizures
- Drowsiness or even coma
It is important to note, however, that these symptoms are not exclusive to brain tumors. Still, you should always consult with your doctor if any health problems arise.
Understanding Childhood Cancer
Treatment advances in recent decades have lead to 84 percent of children with cancer now surviving five years or more, according to the American Cancer Society. This is up from 58 percent from the mid-1970s.
But according to the National Pediatric Cancer Foundation, more than 95 percent of childhood cancer survivors have significant health-related issues because of the current treatment options, and only 4 percent of the billions of dollars spent each year on cancer research and treatments are directed towards treating childhood cancer in the United States. Since 1980, fewer than 10 drugs have been developed for use in children with cancer while hundreds of drugs have been created exclusively for adults.
Dr. Elizabeth Raetz, director of pediatric hematology and oncology at NYU Langone's Perlmutter Cancer Center, reminded us in a previous interview that there is still reason for hope.
"There are also targeted treatments and different immunotherapies that have been studied in adults and have now moved into clinical trials for children and there has been a great deal of excitement in the community about that," Dr. Raetz told SurvivorNet.
Still, navigating a child's cancer diagnosis can be tricky.
Jayne Wexler's son battled acute lymphoblastic leukemia and now deals with heart disease as a side effect of chemotherapy. In a previous interview with SurvivorNet, Wexler explained that in addition to regular parent worries having a child with cancer means living with a whole new world of anxieties.
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"My husband and I will always have fear," she said. "I don't think we can ever let go of that. Just when he was OK, then he relapsed, and then he had the bone marrow transplant … so there's always some sort of worry."
Wexler admits she tries to live for each and every day, but its understandable that this does not always come easy.
"And I do try you hear people say this we do have to live each day and be thankful for what we have," Wexler said. "And it's hard to remember that when you're caught up … it's very hard to just sort of enjoy the moment, because we just don't know what's going to happen in the future."
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