Caring for a Child With Cancer
- A 20-month-old boy named Kooper was diagnosed with retinoblastoma, a rare type of eye cancer, after photographs his parents took of him kept revealing a “strange” reflection. Now, his mom is urging other parents to be their children’s advocate and push for answers when something seems off.
- The term eye cancer can refer to any cancer that begins in the eye. The most common type of eye cancer is ocular melanoma, however, the type Gallagher’s son has, called retinoblastoma. Retinoblastoma is the most common type of eye cancer found in children, but it is rare; approximately 200-300 children will be diagnosed with it in the U.S. each year.
- A child’s cancer diagnosis affects the entire family so when assuming the role of a caregiver, it’s important to remember to be your child’s biggest advocate so they receive the best care possible. This includes making sure any concerning symptoms are fully and expeditiously addressed.
- Caregivers must also be on guard for “caregiver burnout” where stress, anger, fatigue, and illness emerge from putting another person’s needs ahead of their own. Remember, talking to a therapist or your support group is an important tool to help you cope during this difficult period.
- Through interviews with expert oncologists, social workers, patients advocates, and more, SurvivorNet has come up with a checklist of helpful steps cancer caregivers can take throughout the journey.
Gallagher, who received her son’s diagnosis last month, is hoping that by sharing her story she will encourage others to check on their children’s symptoms and seek medical advice as soon as possible.
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“We want to share this with everyone for both understanding of our ongoing personal situation & also importantly awareness for others. Two weeks ago everything was fine, we noticed a strange glint in Kooper’s eye. We googled it and it said to take a photo of them with the flash on. We did this and it enhanced Kooper’s white pupil.”
“We took him straight to the doctors, referred to the hospital and then referred to the children’s eye cancer department in Birmingham Children’s Hospital. A fast turnaround that we are grateful for in our NHS system,” Gallagher explained.
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While her son’s eye was being checked at the hospital, doctors discovered a large tumor and that Kooper was blind in the eye with the unusual reflection, despite Gallagher and her husband ever noticing signs that he had no vision in that eye.
Gallagher continued, “He has a long road ahead of different treatments chemotherapy, cryotherapy and others that will last up to 2 years, but the main thing is our boy will still be with us and is likely to make a full recovery & hopefully keep his eye.
“We’re sharing this after discussing with the consultant this morning all the different ways this has been recognized in children and how important it is to have any worries with your little one’s eyes checked promptly! Be vigilant, check their eyes, take photos of them with the flash on, and if something doesn’t feel right in your gut, get it checked.”
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Gallagher remains incredibly grateful that her son’s cancer was caught at a “treatable” stage.
She concluded, “We will always be thankful for us acting so quickly on the matter, but it could have easily gone a different way, so please please lookout for your babies and check their eyes.
“Also a massive thank you to all our family & friends that have been nothing but supportive throughout the rollercoaster that has been the last two weeks & will continue to do so, we appreciate you all more than you’ll ever know.”
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In a followup Instagram post, Gallagher shared a photo of her son Kooper’s hand in hers, writing that his first round of chemotherapy was completed on Dec. 19, 2024 and they were headed home for the holidays.
She continued, “On the way home for Christmas, feel so lucky to be able to have him home & well to spend the season with our family & friends unlike some of the children we met at the hospital this week.
“Count your blessings.. it’s definitely not what’s under the tree but who’s around it.”
Recounting how Kooper’s unusual eye glare was noticed, Gallagher’s husband told Kennedy News, as per The Sun, “My partner said she saw something funny in his eye but she didn’t really say what and I’m not a big panicker so I thought it’d be fine.A couple of nights later, I had the boys at home and I noticed it myself. When the lights are off his pupil goes white.
“You couldn’t see it properly, you could see it if you looked a certain way and there was a reflection in his eye, you could see a little bit of white in his pupil. I Googled it and there were a couple of things that it could’ve been and one of them was eye cancer, retinoblastoma, and I panicked a little bit then.”
According to the report, Kooper is in the midst of “intra arterial chemotherapy” and will continue chemotherapy injections and laser therapy for at least two years
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Understanding Kooper’s Rare Type of Eye Cancer
The term eye cancer can refer to any cancer that begins in the eye. The most common type of eye cancer is ocular melanoma, however, the type Kooper has is retinoblastoma, which happens to be the most common type of eye cancer in children.
This type of cancer usually develops in infants and very young children, and it rarely is found in children older than age 6. Overall, retinoblastoma is rare, but it makes up for about 2 percent of all childhood cancers, according to the American Cancer Center. Additionally, approximately 200 to 300 children are diagnosed with the disease annually in the United States.
About 75 percent of children with retinoblastoma have a tumor present in only one eye (which is called unilateral retinoblastoma), but another 25 percent will have both eyes affected (something called bilateral retinoblastoma).
Thankfully, more than nine out of 10 children across the nation with retinoblastoma are able to be cured.
This type of cancer can also be inherited. However, most children diagnosed with retinoblastoma do not have a family history of the disease regardless of whether theirs is heritable or non-heritable.
Meanwhile, children with heritable retinoblastoma have a 50 percent chance of eventually passing on the RB1 gene change that causes the tumor to their offspring. Children diagnosed with non-heritable retinoblastoma do not pass on an increased risk of developing the disease.
Symptoms of Retinoblastoma
Retinoblastoma is most often diagnosed after a parent or doctor notices something unusual about a child’s eye. Since parents know their kids best, it’s crucial for parents to be vigilant of their children’s bodies and speak up about any changes or unusual behavior they notice.
Two of the more common signs and symptoms include:
- White pupillary reflex (leukocoria) the pupil appears white or pink instead of red when you shine a light in the eye
- Lazy eye (strabismus) the eyes don’t appear to look in the same direction
Other less common signs and symptoms can be:
- Vision problems
- Eye pain
- Redness of the white part of the eye
- Bleeding in the front part of the eye
- Bulging of the eye
- A pupil that doesn’t get smaller when exposed to bright light
- A different color in each iris (the colored part of the eye)
And if the cancer spreads outside the eye, symptoms can vary depending on where it’s located.
Symptoms for these scenarios can include:
- Loss of appetite and weight loss
- Headache
- Vomiting
- Lumps under the skin in the neck
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It’s important to note, however, that the majority of these signs and symptoms are most often caused by something other than retinoblastoma. Regardless, you should always mention any of these signs or symptoms to your child’s doctor should they arise, as the outlook for retinoblastoma patients is not as good if the cancer has had time to metastasize (spread) outside of the eye.
Treating Retinoblastoma
The main ways to treat retinoblastoma are:
- Surgery (Enucleation) for Retinoblastoma
- Radiation Therapy for Retinoblastoma
- Laser Therapy (Photocoagulation or Thermotherapy) for Retinoblastoma
- Cryotherapy for Retinoblastoma
- Chemotherapy for Retinoblastoma
Systemic chemotherapy is when chemo drugs are injected through an IV or given by mouth to enter the bloodstream.
This form of chemo is offered in cycles, with periods of rest in between each treatment cycle, which lasts for a few weeks. In total, systemic chemo is done over the course of several months.
Some of the drugs used to treat retinoblastoma are Carboplatin, Cisplatin, Vincristine, Etoposide, Cyclophosphamide, Topotecan, Doxorubicin.
“Most often, 2 or 3 drugs are given at the same time. A standard combination is carboplatin, vincristine, and etoposide, although for very small tumors, only carboplatin and vincristine may be enough,” as per the American Cancer Society. “Other drugs might be used if these are not effective.
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Meanwhile, cryotherapy is done with a small metal probe “that is cooled to very low temperatures, killing the retinoblastoma cells by freezing them.”
According to the ACS, “It is only effective for small tumors toward the front of the eye. It is not used routinely for children with several tumors.”
This form of treatment is done while the child is under general anesthesia. “The probe is placed on the outer surface of the eyeball next to the tumor, which is then frozen and thawed several times,” the ACS explains further. “Cryotherapy is usually given 2 or 3 times, with about a month between treatments.”
Being An Advocate For Your Child
Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. When it comes to a child, the parent must become the advocate.
And even if you’re called “pushy” or people dismiss the concerns you have for your child, it’s important to remember that you never know when speaking up about a seemingly unproblematic issue can lead to a very important diagnosis, cancer or otherwise.
Be Pushy, Be Your Own Advocate: Don’t Settle
Seeking multiple opinions is one way to make sure you or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.
Contributing: SurvivorNet Staff
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