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Archive for August, 2008

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!

Peace,

Liza

 

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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Thanks to Julia, age 8/12, for inspiring all the grown ups to put together a fun day for the Rb friends from Camp Sunshine! We had a wonderful visit to Lake Compounce in CT – beautiful weather, fantastic friends, great rides, and fun for the smallest one (age 18 months) to the oldest ones (can we include the 30+ old adults?)!

Here are a few pictures of some of the Rb families and kids! We’re hoping to get together again sometime in October for apple picking or pumpkin picking! More details to follow!

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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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This is a beautiful coloring book designed for siblings of children with Rb. It’s also an awesome book written in very clear, and yet, age appropriate language. Special thanks to Grace Talusan (with help from Liza), Pam Bergsma (Joey Bergsma’s grandma), and Rob Harrell for contributing their talents for this important book.

"Joey's Special Eye" author, Grace Talusan and Joli

"Joey's Special Eye" author, Grace Talusan and Joli

I recently wrote to the Eye Care Foundation who has generously been funding the publishing of the coloring book. They are getting ready to order more! I’ve put in for an order to be shipped to me, too, so we can make them available in the New England area at our future get-togethers. I’m also hoping to bring them to Mass Eye and Ear when we go for our next appointment as well as bring more to Camp Sunshine next summer.

Leave a comment if you have a copy of the book and tell us what you think about it! (although, we already know how wonderful it is!! 🙂

As a special ‘shout out’ to Grace Talusan – she has been a wonderfully public writer about her experiences as the Aunt of an Rb kid. Grace has published stories in a book called “Silence Kills” as well as has been published in Tufts University Alumni Magazine with her moving story “Blinded.” For more information about Grace Talusan, or to read her stories about Rb, please visit her site. Thanks!

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(Please see disclaimer: this is not a medical diagnostic site. Rather, it is a collection of our experiences with retinoblastoma. You must always consult a doctor for more information about retinoblastoma).

What is Retinoblastoma? I certainly didn’t know what it was prior to August 17, 2005. I had no idea that there was a thing called “leukoria” or the cat’s-eye-reflex. I had no idea that a misaligned eye might be a sign of retinoblastoma. I had no idea that those red-eye reflexes in pictures were actually going to be something I loved seeing. Retinoblastoma was never taught in my college biology classes. I never saw a fundraiser for it. I never heard of anyone raising money to support their walk/run for Retinoblastoma. I had just never heard of it.

Until Thursday, August 17, 2005 at 8:45am.

Oh, life before Retinoblastoma. Well, technically, we never did have a life without retinoblastoma. Because, after all, retinoblastoma is likely something that was thre as early as the fetus stage.

When Joli was diagnosed, I remember thinking to myself, “Did I do something? Did I eat something I wasn’t supposed to? Did I exercise too much? Did I exercise too little? Did I stand too close to a microwave or something?”

Riddled with guilt, I was sure something was my fault. If it happened in the womb, it must be because I did something wrong.  Well, thanks to my retinoblastoma parent group, I finally accepted that I didn’t do anything wrong. That, sometimes, things just happen the way they happen. And, thankfully, I had that support group, because I think I still would be blaming myself into a debilitating state all these years later.

I still ache for the thought of what life would have been like if we didn’t have retinoblastoma. (I use the term “we” a lot because caring for a young child with cancer really is an impact and responsibility of everyone who loves them). Years later, I can now look back on it and feel thankful that we did go through this. We are a stronger family. We are a kinder family. We are a family who now speaks up for those who don’t always have the strength. We are a family who believes that there IS good in this world — and we found out about that when we received prayer cards, donations, and letters and emails of support from people we had never met.

Because of retinoblastoma, my daughter is growing up in a world where she sees past the physical beauty and reaches for the spiritual and emotional beauty of everyone around her. And, she has taught us to do the same.

So, what is retinoblastoma? Yes, you can go and check out the medical information about it (I highly recommend going to Daisy’s Eye Cancer Fund website for great, accurate information). But, what is often left out is the emotional impact of Rb.

What is retinoblastoma? Retinoblastoma is one of the greatest gifts our family could have ever received.

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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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