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Bilateral Retinoblastoma

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  • Bilateral Retinoblastoma

    Diagnosed as an infant, our now toddler is three and a half years into a five-year course of treatment. While he has lost one eye, he has also gained vision in his remaining eye. Sporting a great sense of humor, he turns his prosthetic to purposely freak people out if he is nervous or feeling overwhelmed - a great way to get people to leave you alone! With the large amounts of chemo and radiation he has had to endure, our little man is also now dealing with neuropathy. Currently tests are being done to narrow down the 'why,' but in the end it looks like the chemo drug carboplatin may be the reason. Nothing can be done about the past chemo treatments, now we just face adapting the environment to meet his needs. We see specialists in three states, so travel is a frequent issue for us. We are also well aware that we could face issues related to the large amount of radiation received, and even from the other chemo meds. But, we take each day as it comes, thankful for another day, another camping trip, another rainbow...

    We are MORE than open to talking with other parents facing Rb in their child. Our son was also adopted, so we understand how hard it can be to not know medical history, and have to start from scratch.