11 month old diagnosed with retinoblastoma..

[u/CommentNo7703]

My youngest nephew is 11 months old and was recently diagnosed with retinoblastoma, which led to further testing. About a month ago we noticed a lazy eye and a lot of watery discharge. He was sent to a specialist immediately, and they found two tumors behind his eyes, one directly affecting the retina, which has already caused partial vision loss in that eye. The tumors are around 10 mm.

Because of his age, the doctors are recommending intra-arterial chemotherapy (IAC) — delivering chemo directly to the eye through a catheter placed in the femoral artery (groin) up to the ophthalmic artery. The goal is to save the eye, preserve vision, and prevent spread to the brain.

They want to act quickly since it was caught early, and treatment would likely be monthly. Our family is still in shock and trying to understand what this could look like long-term.

If anyone has experience with retinoblastoma, infant glaucoma, eye tumors, or intra-arterial chemo, I would really appreciate hearing your story..

[u/PoppyAndMerlin]

I’m sorry to hear this. I have a sort of venn diagram of experience - my 4.5 year old is currently battling brain cancer (ATRT) and my 8 month old has been diagnosed with LCA9 (a genetic condition affecting the retinas - she is completely blind).

I will say: my youngest is hands down the happiest, most social, amazing, joyful baby I’ve ever met. She is in Early Intervention and is meeting all the milestones other babies her age are. We are so in love. So, if it comes to that, it is very difficult for us sighted folks to imagine, but he will lead an incredible life.

As for the chemo part…it is hard. So, so hard. You’ll hear the advice to take it day by day…that is the only way. Hour by hour. Work with the hospital’s palliative care team to ensure pain management and comfort is a top priority at every step. Never stop advocating. Find the best specialist at the best hospital in your country and go to them.

Don’t be shy about seeking help for yourself. I am on Zoloft for the first time and I credit it with allowing me to wake up and face every day.

[u/Killfile]

All of my experience is fairly dated but I'll share with you an observation. If the cancer doesn't respond well to chemo they may decide that removing the eye is the best choice.

If that time comes you're going to be on a clock. The oncologists won't recommend it if they have better choices and by that time the risk of metastasis is much higher.

I have lost friends to parental unwillingness to proceed with amputation or other surgical intervention. The nephew isn't your kid but if the time comes mom and dad are going to be tied in knots over the decision. Don't let paralysis make it for them

[u/LittleDear1]

Hi, my son was diagnosed with retinoblastoma at 13 months last May. He did 6 rounds of systemic chemo and then laser and cryo therapy. What grade are the tumors? If grade D or E systemic chemo should maybe be considered to confirm no spread. Do you know where he is being treated? Some hospitals are much more specialized than others. Feel free to message me and I can answer more questions. The first month was definitely the hardest.

[u/SpecialistTrifle4816 → u/LittleDear1]

My daughter was diagnosed at 3 months old. Grade B and almost E. She has no vision in the E eye. 6 months of systemic chemo and eye exams under anesthesia with the laser and cryo. The systemic chemo is the protocol when the tumors are in both eyes. Our doctor is Jesse Berry at children's hospital Los Angeles. We are monitoring monthly but it sounds more likely they will remove the bad eye to ensure the cancer doesn't spread. The team at CHLA is very specialized in retinoblastoma. I'm also happy to answer questions.

[u/chkimben]

My daughter was diagnosed with RB at 18 months, we did 3 rounds of IAC & she’s been in the clear for almost 2 years now.

HERES THE CATCH. Where you go and who your docs are is the MOST important part of the journey. Doctors out there will say they are good in the RB world and it’s likely untrue. They just want your case. BC ITS SO RARE. Message me if you want to connect or if the parents do!

[u/MDLarissaPazMendes]

Hi — ophthalmologist here. I’m really sorry your family is going through this. Retinoblastoma at this age is serious, but the fact that it was detected and treatment is starting early is very important. Intra-arterial chemotherapy (IAC) is a well-established treatment today. It delivers chemotherapy directly to the eye, allowing good tumor control while trying to preserve the eye and, when possible, some vision. Many children respond well, especially when managed in specialized centers. Long-term outcomes depend on how the tumor responds and whether there are any high-risk features, but close follow-up is key and part of the process. You’re doing the right thing by acting quickly and being in specialized care. Wishing the best for your nephew and your family.

[u/MDLarissaPazMendes]

Hi, I’m an ophthalmologist with a focus on ocular oncology. I’m really sorry your family is going through this — I know how overwhelming it can feel at the beginning. Based on what you described, the recommendation for intra-arterial chemotherapy (IAC) is very consistent with current best practices, especially in young children with tumors of that size. This approach allows high concentrations of chemotherapy to reach the eye while minimizing systemic side effects. The main goals are exactly what your doctors explained: control the tumor, preserve the eye when possible, and protect the child’s life — which is always the priority. The good news is that, today, retinoblastoma has very high survival rates when treated early in specialized centers. In terms of long-term outlook: Many children do very well and grow up healthy Vision depends on tumor location and response to treatment Multiple treatment sessions are common and expected The most important factor is being treated by an experienced multidisciplinary team — that makes a huge difference in outcomes. You’re doing the right thing by acting quickly and seeking information. If you have questions along the way, feel free to ask — I’m happy to help. Stay strong.

[u/kgkt]

I'm so sorry this is so delayed so likely not helpful but my son was diagnosed and treated (successfully) for retinoblastoma. IAC is a great option - we would've done it for all of our chemo but a weird incident resulted in us needing to do full body chemo instead for the first round until we could find a new doc for IAC which we later did at Phoenix Children's. Unfortunately my son's tumor did not respond to chemo after 3 rounds so his eye was removed. It's now almost 5 years later (he's 7 now) and he functions perfectly fine with one seeing eye + one prosthetic eye.