Archive for the ‘retinoblastoma child’ Category

Just wanted to re-post another Welcome message for the people who are finding the Retinoblastoma New England site due to the awareness that the Today Show and other media have raised for Rb.

Feel free to surf around this site and learn more about retinoblastoma, our own personal story with this eye cancer, and for some words of encouragement.

Unlike the child who was diagnosed in Florida, my daughter Joli was diagnosed at an eye exam at age 2. By then, her tumor was at stage 5B, which meant it was at the base of her optic nerve. We can’t imagine what another few days or weeks would have done….

The leukoria, or white reflective glow, is definitely the first sign that most people see. Though, by the time there is a noticeable leukoria, it’s usually because the tumor is so large.

As the first grandchild, and our first child, Joli was photographed at every turn! And, now that we know about retinoblastoma and leukoria, I’ve combed through every single photo we had ever taken over the first 2 years of her life. What’s difficult is that the conditions almost have to be “just right” in order to see the leukoria. In some photos, there isn’t leukoria — and in the next photo, there it is, large and in charge.

So, welcome to the Retinoblastoma New England site! Please drop me a comment if you have any questions or need some support!




The following is a poster in Spanish that was produced by the Daisy Eye Cancer Fund (based in UK) with Joli as the poster child. Please visit their site, or print this photo to be placed in your office, lobby, etc. We’ve seen the power of knowledge, as highlighted recently in the press, and know that awareness is how we will save sight and lives!

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Diagnosis Day is always hard for me. My daughter, now 5, was diagnosed with retinoblastoma on August 17, 2005 at 8:45am. Tonight, August 16th, we are on the Eve of The Anniversary Of Diagnosis Day.

But, what I’ve found the past two years, especially now that we have officially spent more “years” as a cancer family than not, is that the Eve of Diagnosis Day — otherwise known as “the day before our lives changed” — is a whole lot harder for me. It’s a day that reminds me of a life that might have been and not of what is now.

Now, certainly, we know our blessings. Like many children in the United States who are diagnosed, my daughter is healthy and alive. And, aside from a prosthetic eye, she has lived the past few years as a child who many never assume to have had cancer. Her hair has fully grown back, she is taller than any of her friends, she is smart, funny, sensitive, and incredibly articulate. Back when she was diagnosed, we weren’t sure what her future would hold. And, if you’re reading this as a new parent, I’m quite sure you’re thinking the same thing. If you’re reading this as a seasoned Rb parent, I’m sure you, too, count the blessings you have as well.

Many of my married friends joke about not being able to remember what life was like before marriage and kids. Much like I can’t remember what life was like before I had children, it’s getting harder and harder for me to remember what life was like before retinoblastoma. I can’t remember back when I didn’t really care what sharp object my child had in her hand. I can’t remember back to when “mandatory safety glasses” weren’t a part of our lives. I can’t remember my daughter’s chest without a scar or a port. And, I can’t remember what my daughter’s face looked like without her prosthetic.

But, I also am thankful that, because of our cancer journey, I now have a daughter who embraces life. I have a daughter who is more kind than her peers, especially when there is a new person in the room. Because of our experiences, my daughter isn’t afraid to talk to someone who looks different or who uses a different ability via a wheelchair, walking stick, white stick, or who speaks in a manner that is unfamiliar to us. My daughter is learning, at an early age, that different is special… that different is good.

She is that kid in school who I always wished I had the confidence to be — she is the one who is friends with everyone because she’s the most kind to everyone. She takes care of others, but she has also learned to advocate for herself. I guess that’s from times when I had to leave her alone in the hospital when she was just 2 years old. She had to learn how to speak clearly, quickly, and to express what she felt and what she needed from strangers, at age 2. When we are out and I see 2-year olds, I am am reminded just how much “growing up” my daughter needed to do.

Diagnosis day — in the past, that was the hardest anniversary for me because it signified such a change in our lives. But, now that we have officially crossed that threshold where my daughter has spent more of her life as a cancer survivor than as a non-cancer survivor, I’m feeling a different emotion about pre-Diagnosis Day. It’s a day that’s ambiguous, unclear, to me .. I’m not able to remember life prior to Retinoblastoma….

and, honestly, I don’t think I want to.

If you’ve found this site because of a recent Rb diagnosis,may you find peace on your diagnosis day. If you’re a seasoned Rb family, may you find peace on your anniversary or during this difficult time.

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Welcome to the Retinoblastoma New England site. This is simply a personal resource for parents, families and survivors of retinoblastoma – a rare eye cancer that is most often diagnosed in infants and children.

Here, you will find personal stories of families who have dealt with retinoblastoma. This is not to be used as a medical nor diagnostic site, rather it is a place where families and individuals can read about our personal stories with retinoblastoma in hopes of not feeling so alone.

Retinoblastoma is a rare pediatric eye cancer, and therefore, our network of families is based largely in an online community. There are a number of fantastic Retinoblastoma support groups in the United States, the most well known is Retinoblastoma Arizona (RBAZ) coordinated by Colleen Crowley. This group is fantastic, and therefore, we wanted to be able to provide a similar regional resource in the New England area.

This site, and this group, is entire volunteer run by parents of children with retinoblastoma.

Feel free to leave a comment or email liza@rbne.org for more information or support.

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