Triplets with Cancer: Surviving and Thriving Through the Unexpected
Monday January 31, 2022
A retinoblastoma diagnosis is shocking for parents, and the journey through complex specialist care can be highly stressful. RB1 genetics mean this cancer often affects more than one child in a family. Leslie Low shares her experience of caring for her triplets – all diagnosed with cancer in both eyes, and the things that helped her family cope; physically, psychologically, and practically.
Not What We Were Expecting…
During the summer of 2013, I was expecting my second child. I went for a routine 20 week ultrasound and the technician informed me that I was having triplets and they were all boys – to say we were shocked is an understatement!
As we started to prepare for triplets, we were made aware of the many complications that could happen, and did our best to keep a positive attitude and prepare for whatever situation might come. I was on bedrest for several weeks, but was very fortunate to deliver Thomas, Mason, and Luke at 34 weeks.
The last photo in this collage was taken the day Leslie delivered the triplets.
The boys were very healthy, spending about 3 weeks in the NICU learning to feed and grow. Then we were able to bring them home, where we began the laborious job of caring for three newborns and a toddler.
Proud father, Richard, in the NICU with the tiny newborn triplets.
2 months old.
3 months old.
When the triplets were about 3 months, we finally felt like we had a system in place and were managing.
My husband was in residency to become a family doctor, and had a concern about the pupil of Mason’s eye – it did not appear to be completely circular (this is not a condition usually related to retinoblastoma, but it led us to do a more thorough eye examination). As part of his examination, he took a flash photo of Mason in a darker room. The image came back with one eye reflecting a red glow, and the other a white glow.
Richard’s photo of Mason that led to the triplets’ retinoblastoma diagnosis.
During his medical school training, he had learned briefly about retinoblastoma, and recognized that glowing white retina reflection from the camera flash needed to be examined more thoroughly, so we scheduled a doctor’s appointment.
The following day, we were referred to an ophthalmologist who diagnosed Mason with retinoblastoma. At the time, we didn’t know whether the triplets were fraternal or identical, so the other two also had an examination. Tumors were found in Thomas and Luke’s eyes as well (we later discovered they are identical triplets who all carry the RB1 mutation).
Treatment and Recovery
Within a few days of discovering the tumors, we were referred to receive treatment at Sick Kids Hospital in Toronto. We became frequent flyers, traveling about 4 hours by plane to receive treatments.
At diagnosis, each of the triplets had one eye that was more severely affected by tumors, and one that was more stable with central vision. Thomas had a grade A and D eye. Mason had one eye with no tumors and a grade C eye. Luke had a grade B and C eye.
We chose to remove Thomas’s Right (grade D) eye after the first examination, rather than put his body through aggressive treatments for an eye with no central vision.
Mason’s left (grade C) eye received a few months of treatment, but did not respond as well as hoped and would have needed aggressive treatment. So we chose to remove it after a few months.
Leslie with 3 month old Thomas, in the recovery room after his eye was removed.
Leslie with 5 month old Mason, in the recovery room after his eye was removed.
Luke’s left (grade C) eye also did not respond to treatment as well as hoped, and was removed 2 days before his first birthday.
12 month old Luke, recovering in hospital after his eye was removed.
Their remaining eyes required several EUA’s with lots of laser and cryotherapy, but have been tumor free since they were about 18 months old. They all have perfect central vision, and we are so thankful for the modern treatments that preserved their sight and saved their lives.
They recently turned 8 years old, and are very healthy and energetic boys!
8 year old Mason, Thomas, and Luke. Even though they are identical, there are subtle differences in their height, smiles and the fit of their prosthetic eyes that make each of them unique.
My Top Coping Tips
I would like to highlight a few helpful tips we learned along the way. I hope they can help give hope or ideas to other families who may be dealing with a new diagnosis of retinoblastoma.
Self-Care Tips
The initial shock of finding out I had children with cancer was very overwhelming for me, as it is for most parents. I remember feeling so overwhelmed that it felt difficult to breathe and think clearly. A few things that helped me were:
Short Term Perspective
During the beginning stages, I coped best by focusing on one day and sometimes only one decision at a time. I tried to not get carried away worrying about the future. While I tried to learn as much as I could about retinoblastoma in order to make informed decisions, I also learned that I needed to rely on my doctors to guide me to resources to find the best information.
Since you’re reading this blog post, you have found one of the best resources out there! WE C Hope’s website is filled with great, credible information!
Accepting help
I learned to tell people specific ways they could help, and tried to delegate much of my workload to friends and family. Simple things like asking people to wash the bottles, fold laundry, bring a meal, or pack me vegetables to take on EUA days helped so much. I quickly recognized that while dealing with so much stress, I needed to give myself grace and allow others to help me carry the burden.
Mom in demand…
Preparing bottles at the hospital…
Taking Care of Myself
As caretakers, we are often given advice to take care of ourselves if we want to take care of our children. This is especially true during a cancer diagnosis. For me, this included drinking lots of water, prioritizing sleep, trying to eat healthy foods, going on walks, and having some social outlets.
Being Grateful
Deliberately looking for the positive things happening in my life really helped me. I would usually text them to family members who were supporting me and helping me keep a positive mindset. Being intentional about focusing on good the things in my life really helped me cope.
Tips for Balancing Time with All Family Members
My oldest son, Benson, went through a lot of adjustments during this time. He went from being an only child who got all my attention, to the older brother of triplets who all had cancer! To be honest, it wasn’t easy for him, and the mom guilt I felt was hard on me as well. I was so thankful for family and friends who recognized this and tried to give him a little more attention.
Quality Time
We did find a few things that helped make this adjustment a little easier. When I was home, I signed up for a community class, and had someone watch the triplets while I spent time with Benson at this class. It helped me have one scheduled event that wasn’t too much stress if we missed, but did help me commit to time with him.
I would also try to be intentional about giving him a little one on one time each day. Something as simple as doing puzzles with him for a little bit. My husband and I also tried to make bedtime a chance for more one on one time while reading a book and taking time to listen to him tell us about his day.
One of the Team
We also tried to involve Benson and let him be our special helper. He thought it was fun to throw away diapers, take bottles to the sink, and participate in some of the triplets’ schedule (see photo below).
Staying Connected during Hospital Trips
When we were traveling, we were very thankful for technology that allowed us to call Benson back home. Some trips he did really great with a facetime before he went to bed; some trips it made him homesick. So I had to adapt and communicate with the person watching him back home, to gauge what was working best for him.
Supporting Big Emotions
Finally, while this was hard on Benson, he was also young and very strong and adaptable like his brothers. It was a really hard year on all of us, but we made it through.
Your other kids will likely show attention seeking behaviors. Try to relax and remember these are unusual times, and while you don’t want to spoil the child, it’s important to let them express and show their big feelings as well!
This photo shows how we would often lay the triplets in U shaped pillows to bottle feed, with a blanket under their chin to hold up their bottles. At the time of this photo, one of the triplets was at a doctor’s appointment. Benson noticed the empty pillow and decided he better fill the space. He looks double the size of his two brothers, and rather than drinking from a bottle, he is drinking from a sippy cup.
Please note: Never leave a baby unattended with their bottle propped, as this poses serious health risks, including choking.
Travelling and EUA Tips
Travel
Traveling for treatments can add a lot of stress and challenges. Try to look for processes that can help reduce stress and simplify your situation.
I bought a few diaper bags that helped me stay more organized and were easy to carry.
Baby carriers were also very helpful in airports.
Booking seats in the back of the airplane also helped – I was closer to the bathroom for the frequent diaper changes, the plane was noisier and helped keep the babies calm, and we usually found other passengers in the back to be friendlier.
The triplets learned to nap in so many different places. I tried to stay consistent about their sleep schedule, and provide environments that would help them get a decent nap, even while traveling – that was key to making the day go as smoothly as possible. This included taking car seats and strollers to gate check, and trying our best to snuggle the boys to sleep as we flew.
At Toronto airport with my father and the triplets. To navigate through an airport, 2 of us pushed the baggage carts, and one person pushed 2 strollers at once… we did not move very quickly, as you can imagine!
EUA Day Schedule
It takes a few surgeries to know what works best for you and your child, but look for ways to make EUA days as easy as possible for both baby and you. This might include:
- Cluster bottle feeding at night so they can last longer after the cut off time for food.
- Finding activities and distractions that can help your child while they wait and are hungry.
- Bringing a good stroller or other comfort items to help them nap (naps were the best way we found to help our kids pass the time).
Using hospital resources like child life to help make EUA days less stressful and more enjoyable.
- Cluster bottle feeding at night so they can last longer after the cut off time for food.
- Finding activities and distractions that can help your child while they wait and are hungry.
- Bringing a good stroller or other comfort items to help them nap (naps were the best way we found to help our kids pass the time).
Using hospital resources like child life to help make EUA days less stressful and more enjoyable.
EUA Day, 7 months old.
Making friends
We were lucky to meet many awesome nurses and other hospital staff who made EUA days more enjoyable. We also tried to look around the waiting room to see if we could spot any other retinoblastoma families. Having other families to chat with made the days go by faster, and helped me not feel quite so alone.
I really appreciated making connections, and making my circle of support larger. I also joined social media groups to meet other parents. Being able to connect with other families who know what we were going through was really beneficial for me.
As the boys have become more stable, I have been able to continue those friendships through participating in some retinoblastoma research initiatives in Canada, and have found this so rewarding.
With retinoblastoma specialist, Dr. Brenda Gallie in Toronto.
Eat and Sleep – Basic Self-Care for EUA Days
Back to taking care of yourself – Be sure to schedule in time for you to eat and pack snacks. This may include waking up a little earlier to eat before leaving for surgery, or sneaking out of the pre-op room for a moment to take a quick bite of food or drink of water.
During the first few EUAs, I figured that since my kids were needing to fast, I better fast too. I quickly learned that I needed to be my best self for them, and that included having food and water in me.
I would also try to maximize the amount of sleep I could get the night before, which included asking for extra help feeding the babies in the night so I could sleep. I quickly learned that I did not manage well physically or emotionally on surgery days if I was running on little sleep.
Luke is about to go to the OR for another EUA.
Bring Something to Do During Surgery
The triplets typically had surgeries on the same day. I was constantly busy, running from pre-op to recovery, trying to be in three places at once. Looking back, I realize how good it was for me to be so busy! I didn’t have so much time to watch the clock and worry!
One time, I only had one child needing surgery. I could not believe how stressful it was to sit in the waiting room, staring at the status screen, hoping to hear from the doctors or to be called to the recovery room! Bringing something to do to keep your mind busy while you wait is a great way to reduce the stress of a very demanding day.
Prosthetic Eye tips
Be Mindful of Your Attitude
Learning about a prosthetic eye and all that maintenance entails can be overwhelming. And because it’s unique, it can even seem gross or scary at first. Children are very aware of how we as parents react, and our apprehension can rub off on them.
I remember feeling so much hope the first time Thomas got a custom eye. Being able to see him with an eye that matched his seeing eye gave me so much hope that things were going to be OK, and we could make the best of the difficult situation. It gave me hope that we could keep fighting the cancer, and that things would work out.
Have a Routine
I know my boys are very lucky to have each other as it doesn’t seem all that unique to have a fake eye at our house. In fact, it seems very normal! But I have learned that normalizing the maintenance of the eye really helps. Just as we need to brush our children’s teeth at night, we also need to wipe our eyes and administer drops. And just like a busy toddler’s experience of brushing teeth, they may fight the eye maintenance.
Rather than make it a big traumatic experience, we would usually contain them by holding them between our legs, and quickly administer the drops or eye wipe. At our house, since there were three boys with prosthetic eyes, every process needed to be efficient, but I believe this benefited us in the long run as they realized it was just part of life!
This is a before and after of Luke with his temporary conformer, and then his custom prosthesis.
A Final Word…
I hope these bits of advice are helpful to you as you are dealing with retinoblastoma. I know during the beginning stages it feels like you will never make it through. I just want to encourage you look for ways to find hope, and trust in your ability to overcome whatever obstacles you and your family will face. Children are so incredibly resilient, and your child will amaze you with their strength.
While this was the hardest experience of my life, I am thankful for the ways it has helped me grow into a more capable and compassionate person. I hope we all can grow from these experiences, and make the future better for our retinoblastoma community!
About the Author
Leslie Low became connected to the retinoblastoma community when her identical triplet boys were diagnosed with bilateral retinoblastoma in 2014. Each of her triplets has one prosthetic eye. They have central vision in their remaining eyes and have adapted very well.
Leslie and her husband, Richard, have 6 boys and live in Canada. Leslie currently stays home to manage their busy household, but she has a Bachelor of Science in business, and enjoys volunteering. She is an active member of the Canadian Retinoblastoma Research Advisory Board (CRRAB), and also loves connecting with other retinoblastoma families. In her spare time, Leslie enjoys playing soccer, pickleball, travelling, and spending time with her large extended family.
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