Hi, I am Tina, a retinoblastoma survivor of 42 years. When I was six months old, my mother noticed that my eyes would glow like a cat’s when she would lay me down at night. She mentioned this at my 6-month check-up, where they found that I had numerous tumors in both eyes. My right eye had four tumors, but one was so large it was already obstructing the optic nerve and could not be saved, so they enucleated it. I underwent radiation treatment for a month to save my left eye. In 1980 there weren’t many treatment options for this type of cancer. They didn’t learn all the harmful risks of radiation until later on. Luckily some of those deadly side effects never caught up to me (like 2nd cancers, typically Sarcomas and melanoma). This type of radiation is now used as a last resort.
I spent my entire life trying to fit in. Since my eye was removed at 6 months old, the muscles behind the eye never had a chance to develop, so my prosthetic doesn’t move very well! I was called cross-eyed and made fun of most of my life… and typically, being honest, it was always older boys during my school years. It made me uncomfortable, and I grew up feeling like the ugliest girl around. I just wanted to fit in and look like everyone else. The radiation also caused the formation of my skull to not fully develop (so you get a peanut-shaped head). Luckily from some amazing girlfriends, I learned to navigate those awful social situations; they were the best in sticking up for me. I also learned to turn my head when talking to people so it didn’t look like I was cross-eyed or had a lazy eye.
When I was 16, Kaiser was interested in my cancer journey as they believed bilateral retinoblastoma could be genetic cancer. This was new in the early ’90s. I don’t think they had linked many or any cancers to be genetic, so they wanted to do a big genetic chromosome test they were willing to pay for to see what they could find out. During this test, we learned I carried the RB1 gene, a shortened protein strand on the 13th chromosome. This was when they told me I had a 50/50 chance of passing this cancerous gene on to my children. They also explained that my chances of getting other cancers were higher than others. It was explained to me when I was 16 that my T-fighter cells were less due to having this gene. I remembered it like having security guards in each one of your cells. Everyone gets two guards per cell. If one guard goes down, you have a 2nd to fight off cancer. If that 2nd guard goes down, then cancer could enter. With the RB1 gene, I only have one guard on duty in all my cells. I spent most of my young adult life waiting to get another cancer.
At 37 years old, when I was trying to conceive a baby and going through fertility testing, I found a lump in my left breast. I finally got another type of cancer like I had always been expecting. I didn’t learn until years later that my breast cancer had nothing to do with me having the RB1 gene. I will say, though, that my breast cancer journey was a beautiful one; it taught me SO much about myself. It prepared me for what would come with having a child with cancer in the future.
The most challenging part of my journey, though, as they had told me after the aggressive chemo regimen and cocktail I would be on, that I wouldn’t be able to have a baby afterwards- especially with my age. I had a long road ahead of me. So after my double mastectomy, we put off chemo for a month so they could harvest my eggs, and hopefully, someday, I could have a baby through a surrogate. A year later, out of the 21 eggs we gathered, only eight thawed. Four of those eight fertilized, and none made it to blastocyst. No baby for us; let’s just say I was devastated (and broke).
Fast forward another year. I NEVER gave up. I was determined I would be a mom and that I would have my beautiful baby. That little babe was what I envisioned all through my breast cancer journey. It was what kept me going and kept me positive. I was determined to try another egg harvest. I was able to produce so many eggs the first time I only needed one, right?! Yes, I am a mathematics girl, so I know there were tons of stages this egg required to pass, but we were going for it! The doctor wanted to pull the plug seven days into my IVF treatment. I never thought there was a chance the medicine wouldn’t work and my body wouldn’t do what it was supposed to. Seven days of shots two times a day. I just wanted to see what would happen if we kept going. I couldn’t give up.
After 15 days of IVF treatments, instead of 10, they harvested nine mature eggs. Four fertilized, and 2 made it to blastocyst. It was indeed a miracle! Learning we had two embryos was one of the best days of my life! Now I could relax a bit, and maybe some extra medicine flowed through my body because we found out I was pregnant naturally two months later!! Even though I love math I’ve also learned to throw stats out the window and just believe in miracles- because they happen EVERY DAY! During this journey, I also discovered the mind is a very powerful tool. Use it wisely and speak good healthy thoughts to yourself EVERY DAY! Dreams really do come true.
My daughter Gemma was born three days after my 41st birthday. She was born four weeks early and weighed in at a beautiful 7 lbs 13 oz. This beautiful miracle that worked so hard to get here. I couldn’t imagine she would carry my gene and maybe get cancer like her mom. A few days after Christmas, we learned she had the RB1 gene and was to start chemo at only two months of age. I guess in my head, I had heard treatment for retinoblastoma had improved in the last 40 years, and I just thought she could go in, have it removed (cryotherapy), and we’d be done. I didn’t realize we were in for a marathon… which we later learned was to be an ultra marathon.
Gemma’s Story
On December 27th Gemma saw an ophthalmologist that could spot one tumor in her left eye. This led us to be seen at Casey Eye Institute in Portland, OR. After her first MRI and then an exam under anesthesia on January 3rd, it was discovered Gemma had 3 tumors in each eye. Gemma’s cancer journey had fully begun! Since she was so small, she needed a PICC line placed to administer the chemotherapy. Unfortunately, her skin was hyper-sensitive, so the weekly bandage changes caused her entire arm to become afflicted with a widespread open wound. After six weeks, they finally decided to remove the line and place it on her other arm since we weren’t halfway through her chemo. That 2nd PICC line only lasted a month as her other arm got super irritated, so we hoped to get an exception for a port to be placed. She was a few pounds lighter than the exception, but we made all the rounds and, luckily, got the ok to have at least a Dr attempt to place one. On April 12th, we were successful!! Now we could finish up her systemic chemo with a port.
With all the issues with the port placement and Gemma’s counts being low, her chemo was delayed two weeks. It was at this next EUA that it was found that new tumors had popped in during this delay. We learned then that this sweet little girl had some very aggressive tumors, and they had a mind of their own. Gemma finished systemic chemo in June; however, due to other complications and tumors that were now morphing and splitting, she would start anti-arterial chemo in September. We had a very sick little girl, but she stayed my happy smiley baby girl through it all. These were still times of Covid, so only one adult could be with her. Gemma continues to go under anesthesia every four weeks as she is still not cancer-free yet, but we are close. My daughter is 19 months old and has been under anesthesia 29 times. She is a true baby warrior that just keeps powering forward. It is her strength that keeps me going.
My daughter’s journey caused me to look more into my retinoblastoma journey and my healing. During my breast cancer journey, I was very open and vocal about it. I could process so much of it, but I realized my childhood trauma/cancer hadn’t been dealt with. I thought I had, but I hadn’t done much. I was lucky to meet a wonderful ocularist in Portland, Oregon, Christina King, who made prosthetics fun. It’s only been a few months, but I have healed so much in learning to be ok with looking different and not feeling ashamed. If anything were to happen to Gemma’s eyes, I want her to have a strong example of how it will be ok; She will still thrive, be loved and look beautiful. I love wearing “fun” prosthetics and spreading awareness for others.
We’re still in the midst of our ultra-marathon, but as a former avid runner, I have learned that it’s all mental. I have come back stronger through challenges and my daughter will too. My journey has been challenging, but I have emerged as a survivor. My story and my daughter’s story serve as a reminder that, even in times of adversity, the human spirit can overcome anything.
