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My cousin, Erin, who lives in a Chicago suburb, was diagnosed with a rare form of eye cancer, Bilateral Retinoblastoma, as a 9 month old baby in 1988. In order to save her life, she had to have her right eye removed. She is now an adult and has 3 very young children. Her youngest, Milo, was diagnosed at 3 months old with the same form of eye cancer and has had a very difficult year.
The treatment has drastically changed from when Erin was diagnosed in the early 80s to now for the better, but unfortunately, the doctors best at treating this rare cancer are in Philadelphia, which requires frequent travel to and from Chicago to Philadelphia.
Milo’s Story with Bilateral Retinoblastoma
October – March 2018
From October-March 2018, Milo’s doctors had him undergoing chemotherapy treatments every four weeks. Milo also had EUA’s (examination under anesthesia) to monitor the tumors located in both eyes. During the EUAs Milo receives cyrotherapy and laser treatments to stabilize tumor growth. When not in Philadelphia, he receives weekly blood draws to monitor is blood counts. Furthermore Milo sees a Pediatric Ophthalmologist on a monthly basis to provide patching treatment to strengthen his vision.
An EUA in May 2018 uncovered 6 recurrences of the tumors. Unfortunately treatment requires a risky procedure known as Intral Arterial Chemotherapy (IAC). A catheter is inserted through his groin, and travels to an artery to administer the chemotherapy directly to the eye. We are hopeful the IAC proves to be successful, however, it is costly, and has prolonged Erin’s inability to go back to work as she must provide constant care for Milo and her family. Traveling to Pennsylvania on a monthly basis, along with the mounting medical bills have put an added strain on their family as well.
August 22, 2018
Today’s EUA uncovered one reoccurrence in both of Milos eyes. It seems there is no end in sight. The plan is to up the dosage of his IAC chemo and add on a literal direct injection of medicine into his eye once a month. This devastating and unwelcome news means our travels to Philadelphia will remain constant. I will also be unable to return to work. The possibilities for low blood counts and possible blood transfusions is on the table. His little body has been through so much.
Sadly, the chemo has not been successful at removing the cancer just yet. However, the hope is still there and going strong through the power or prayers.
How Can You Help?
Their family has been through so much, so much more than any family should ever have to go through. Cancer not only drains you emotionally, it drains you financially. Any and all financial donations would be so grateful and helpful in assuring sweet little Milo continues to receive the best care possible to help him beat this. This is a Go Fund Me link for Milo. If financial donations are not an option, sharing Milo’s story would be greatly appreciated.
Facts about Bilateral Retinoblastoma:
- Know the GLOW. An opaque white area in the pupil (known as leukocoria), caused by the tumor reflecting light. You can see it in this YouTube video
- Among children, it is the most common malignant tumor that starts in eye. Still, it is very rare, with only about 250 to 300 cases diagnosed each year in the United States
- It usually occurs before age five, and most of these cases occur in children under two. The disease accounts for 3% of cancers in children.
- 25%-40% = heridetary diagnosis
- 60%-75% = sporadic diagnosis
Knowing the GLOW is one of the first indicators of Bilateral Retinoblastoma Cancer. When taking photos of your child, if you see a glare that almost looks like cataracts, be proactive and take your child to the doctor to be checked out.
Here is Erin after her eye surgery when she was a baby. Thankful for the surgeries that helped saved Erin’s life. Please help in saving little Milo’s.