Archive for the ‘retinoblastoma general’ Category

I’m happy to announce the next RbNE Fall Family Get Together!

It’ll be on Sunday, October 11th from 11am-3pm in Wellesley, MA at the Boston Sports Club – Wellesley. Thanks to Marissa Ferber — a Camp Sunshine volunteer extraordinaire — who made this all possible! We love you, Marissa!!

If you are a family who has been affected by retinoblastoma, please email me at Liza@rbne.org to come and meet other families.

You must be on the list in order to gain access to the Sports Club that day.

There will be arts and crafts, laser tag (modified for the visually impaired!), and various sports offered during the day.

Please email me for more information at Liza@rbne.org

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Please check out this amazing tribute to one of our Rb children — Leah — by her mother.


For those who may come across this as a newly diagnosed family, there are pictures of Leah at all stages of treatment. I think most of us can say that these pictures represent a very accurate sense of what you might go through/are going through.


Thanks to Leah’s mom for allowing us to post this on our site!

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“But, why would you need a fundraiser? You have insurance, right?”

I can’t tell you how many times I heard people say that to me when Joli was diagnosed with cancer. I heard it so often that I actually became very embarrassed when people talked about the fundraiser or asked me to bring it up. The tone of the comment made me feel as if I was “taking” something from other people. And yet, without the nearly $18,000 that was raised for my family when Joli was diagnosed, I am quite sure we would not have come out of this experience as strong as we did.

When Joli was in jolihospitalthe hospital for her first round of chemotherapy — just 3 weeks after her right eye was removed — I received a call from my good friend, Deirdre. Honestly, Deirdre was the last person I expected to hear from because she had just delivered twin babies and had a 2 year old at home! My own 2-year old was strapped to a bed with IV tubes of poison (aka “chemotherapy”) and a red, hollow hole in her face (aka “her enucleation”). Joli had just finished throwing up due to the chemotherapy. And, I had just finished throwing up due to first trimester nausea with Baby #2.

Deirdre told me that she had a plan. She had a plan to raise a few hundred dollars for us to help us during this difficult time. She wanted to help contribute to gas money, parking, and meals at the hospital while Joli was sick. I recall telling her “No, Deirdre, that’s weird. I don’t want people giving us their money.” She replied, “Liza, we feel so helpless just watching you and your family go through this. Your friends need to feel useful. Your friends need to feel helpful. Please, let us do this. If not for you, please let us do this for us.” If you know Deirdre, or you have friends like Deirdre, you know they don’t give up! So, I agreed – still somewhat uncomfortable with the idea of asking for money from people – but knew that there was no stopping Deirdre!

Deirdre batted around ideas for selling t-shirts or raffle tickets for small prizes. She would coordinate all of this, and asked that my only task would be to give her a list of people — the “Christmas Card List” she called it.

After we were discharged from the hospital that round, I went home and emailed my Christmas Card List to Deirdre. And, again, with the strength of every single Superhero that I know, Deirdre got started. Did I mention she had a 2-year old and baby twins???

After that, I really just focused on taking care of Joli. After a week or so,  we began to get checks in the mail from friends. Those checks and notes of kindness were so touching and well appreciated. Then, I began to get checks and notes from strangers — friends of friends of friends. That was mind-blowing! During this time of “I can’t believe this is happening to us! This is so unfair!” mentality, I was reminded each day of the good that happens in our world.

In addition to checks and notes, I began to get copies of articles and emails that people wrote to draw attention to our fundraiser. My friends and their friends worked their media-magic and reached out to my old college and every single job I used to hold. Deirdre printed our raffle tickets, mailed them out, got people to sell raffle tickets, and solicited prizes. Did I say “prizes”? I actually meant, “ridiculously amazing electronics, original artwork, and services that I could only dream of having!” Perfectly timed for the Holiday season, I was actually pretty jealous of the prizes folks were winning!


Deirdre hoped to raise a few hundred dollars. Within a few months, Deirdre —  and her large army of friends and strangers — raised $18,000.

So, why was that money even important? Did it stop Joli from having to go through chemo? No. Did it bring her eye back? Nope. Did we take it and run?? Certainly not!

When a family is diagnosed with cancer, there are so many expenses that are incurred — yes, even when there is health insurance. Here is a quick run down of how we used that money:

  • Co-payments for every single doctor, every single medication — this was probably one of the single most expensive things during her year of treatment
  • Bi-monthly exams under anesthesia, MRI’s, and major medical procedures
  • Co-payments for her prosthetic eye
  • Glasses – 2 pairs – which cost more than I even care to post…. rip off, but a necessity!
  • Parking for 4 days at the hospital every month for a year (for just 1 car) and then parking when Jorge would come and visit
  • Gas for all the trips to the hospital, clinic, doctors appointments
  • Meals while in the hospital (only the patient gets to eat the hospital food — we had to either pack our food or buy from the cafeteria every meal)
  • Medical supplies — She had her port-a-cath accessed more than 100 times and her Neupogen injections 14x a month. That’s a whole lot of band aids, gauze, and alcohol pads.
  • Nutrition –– I admit, we used to be a fast food family. But, with her post-chemo nausea, Joli could only tolerate liquid, and we had to purchase Pediasure drinks for nearly 2 weeks after chemotherapy. Have you seen those things? They are ridiculously expensive…. but, we had to do it for her nutritional purposes.
  • Lost wages — I was fortunate to find a new job when Joli was diagnosed, but that came with a nearly $8,000 salary decrease. When I realized this, I brought my laptop to the hospital and began looking online for part-time jobs that I could do on the weekends. I would need to make up this salary difference somehow. The money from the fundraiser meant that I did not have to work on the weekends. Instead, I could focus on taking care of my daughter.
  • My husband also had to adjust his work schedule. Unfortunately, he did have to work weekends in order to get enough time off to help out with doctor’s appointments. So, we didn’t see him much because he had to work overtime.
  • Help with the mortgage payment – We had just purchased a house 2 months before diagnosis, and our mortgage was based on my old salary. I am confident we would have completely lost our house had we not been given funds to help us make up the difference here.

The funds were also used to help pay for medical examinations for the baby that I was carrying. Because our genetic testing was inconclusive, we had to have the baby go through the same series of exams that Joli did for nearly 18 months. Again, gas, work time off, meals, hospital parking, etc…..

I made a point to write a THANK YOU note to every single person from whom we received some sort of donation. I did my best. If I missed you, please accept my apologies. The people who helped us during this time saved our lives. I mean that fully. It is so stressful to go through this experience, and the financial piece was a stressor that was removed so that we could focus on the health of our child.

If you see a request for a fundraiser — even if it’s for a few dollars — please donate. That family needs it more than you know. And, if you can only give $2.00, realize that $2.00 is almost a gallon of gas. That gallon of gas could pay for the trip to the hospital. Your donation – even the smallest one – makes a difference to a family caring for a person with an illness.

If you are coming across this site to support a family with Rb, please try and arrange a fundraiser for them.

To learn more about the fundraiser for Richard Matthew, please click here.

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The 2nd Annual Retinoblastoma New England Get Together will be held (sunny, only!) on Sunday, August 2, 2009 at Lighthouse Park in New Haven, CT, from 11am-3pm. Please RSVP by commenting below. There is a $10 fee to park. It’s a pot-luck event, so please bring food for your family and “enough to share”. We will also be providing burgers and hot dogs (which is why we need an accurate count).

This is open only to families with children who have retinoblastoma. We hope to connect with adult survivors some day, soon!

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jolicampsunshineHi everyone!

A number of folks have asked what to pack for Camp Sunshine. While they do provide a great list on their own site, I thought it would be nice to hear from families who have attended. And, as it’s retinoblastoma week, some wanted to provide specific things about “What to Pack for Rb Week”. So, here goes — a list of sorts. If I have missed anything, please add it to the COMMENT section.

Before we get into the list, let me just say how wonderful it is to be in a place with families who share the same diagnosis of Retinoblastoma. There is a calm that you’ll notice about the place and about the people there. I always refer to it as my “Waiting to Exhale” moment – when I could just breathe a sigh of relief knowing that every parent there understood what my family had gone through. I knew that every single parent there understood the unique needs of my Rb child and would know exactly what to do with her if something happened. I knew no one would think twice about “special eyes” or how to help a child with visual challenges, etc. It’s honestly the ONE week in my entire year when I can COMPLETELY relax!

So, on to the packing list!

For sleeping, be sure to pack:

  • bed sheets for twin beds
  • pillows and cases
  • a night light (we found this helpful with a visually impaired child who needs a bit of light to go find the bathroom, which saves electricity over keeping the whole bathroom light on all night)

For eating…

Camp provides you with 3 great meals (breakfast, lunch, dinner), but if you have late night snackers or picky eaters, you may want to bring some favorites that can be easily cooked in a microwave. The refrigerators are VERY small (the kind you find  a college residence hall room). There is a grocery store about a 15 minute drive from Camp, so if you’re flying, you don’t have to pack a suitcase full of milk, juice, etc. But, it’s not convenient enough to go every single day.

  • juice boxes or small juice bottles
  • There is coffee at breakfast, but if you’re the kind of person who needs coffee before even thinking about making eye contact, you’ll want to somehow figure out a coffee situation (single brew makers, a coffee maker, etc)
  • The closest Dunkin’ Donuts is a good 10 minute drive — a shocker to anyone who is used to seeing a Dunkin’s on every corner!
  • Mac n Cheese microwave – my daughter is a picky eater, so this was basically dinner every single night of the week. Ditto with Oatmeal in the morning!
  • No soda is the dining halls — so if you need your Diet Coke fix, you’ll have to bring your own.
  • (all that being said about the food — I rather love the Camp Sunshine food! It’s all really simple stuff – pizza, grilled cheese, fantastic salad bar, etc!)


  • There are no televisions in the room (honestly, it’s a nice break!) so any movies, etc., will need to be from your own DVD player or computer.
  • There are usually a few games in the closets, but the actual Family Center is well stocked with games and books to borrow
  • NOTE: There is NO internet in the cabins/rooms. You’ll need to go to the Family Center, and that is only open during select hours. If you’ve ever looked forward to “living off the grid” — Camp is a great time to unplug from the rest of the technology world! Many of us really love the break!

Specific Clothing

  • Overall, it is very casual – shorts, t-shirts, sandals/sneakers. As adults, we’re in air conditioning a lot, so we typically brought in sweatshirts. The kids tend to be outdoors more than we were.
  • There is 1 more formal dinner for parents. It’s still casual, though. Most women showed up in nice skirts or simple dresses, the guys were in button down shirts and khakis or casual pants.
  • If you or your child are doing the talent show, Camp has lots of fun dress up props, but some kids brought their own dance costumes or magic tricks, etc. There IS a “masquerade” party, but there are more than enough dress up costumes to go around — save room in your suitcase and just use the dress up stuff at Camp!


  • Okay, if you’re a first time Camp family, don’t laugh — this one is true! If you hate those “pin badges”, be sure to bring a lanyard to put your pin badge on. It saves making holes in all of your shirts, and it’s easier to get on/off. Because the kids are usually wearing layers, it also makes it easier for them to keep their badges (which must be worn at all times!). You can buy a Camp Sunshine lanyard (which makes a great souvenier!) there, too.
  • Bug spray — ackk!! Lots of mosquitos at night and in the woods where we do the ropes course. Calamine lotion, etc.
  • Don’t forget stuff for your child’s prosthesis – if you need a suction cup to take out the eye (which, there is no reason to ever take it out at Camp, but if you need to, then be sure to bring it), eye drops for goop (if your kid gets goopy), etc.
  • There are laundry facilities there, but there isn’t always much time to do laundry. Though, if you are limited to what you can bring in a suitcase, then definitely use the laundry options!
  • Sunscreen
  • Your own supply of diapers and wipes for infants/toddlers
  • Swim goggles, if your child wears them. The pool isn’t deep, and the nice thing about going with other Rb parents is that no one is freaked out by a floating eye, in case it does come out!
  • hairdryer,  if you need one (thanks, Donna C.!)

Bathing/Bathroom stuff

  • Your own towels – especially an extra one for the floor. I always seem to forget this one when I go, and end up having to use a clean bath towel.  You’ll also want to bring a towel for the pool.
  • Anything you need for your bath/shower – shampoo, soap, etc.
  • I recall a giant bottle of hand sanitizer in every room, so you don’t need to pack any.

Returning families — did I miss anything??

New families — any questions??

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Ben Underwood and his mother, Aquanetta Gordon

Ben Underwood and his mother, Aquanetta Gordon

A few years ago, my child was diagnosed with cancer. Thankfully, she was treated with very aggressive therapy became cancer free. But, that doesn’t mean we don’t think every single day about cancer. Every headache — is it a tumor? Every stomach ache — is it a tumor? Every fever — is she sick again? For my friends with kids who are healthy, a headache is a headache, a stomachache is a stomachache and a fever is a fever. While we no longer run to the oncologist when this happens, I end up somewhat sleepless at night wondering if cancer cells escaped chemotherapy. I wonder if some wacky strain of radiation-resistent mutant cell managed to exist, find a new playground and spread.

People have even corrected me at times – “J doesn’t have cancer. She H-A-D cancer.” Technically, yes. But, my family and I continue to feel the repercussions of it. We never stop worrying.

Not too long ago, a wonderful news story broke about a phenomenal young man named Ben Underwood. At the time, he was about 13 years old. He was blind from eye caner and developed the unique skill of echolocation – the use of clicks and “sonar like” listening to figure out where he is. He never used a white cane. He never used a guide dog or any assistance. Scientists were fascinated by his ability. Cancer kids heard of Ben and articulated how COOL he was! Parents embraced his mother, Aquanetta, for her insistence that her son was not disabled in any way.

Recently, news broke again about Ben. Unfortunately, Ben has developed cancer in the rest of his body — about 10 years after he had initially been “cured” from cancer. According to the article, Ben is getting weaker by the day, and he will likely be on this Earth for weeks… months. Ben has told his mother that he is ready. He will go to sleep and wake up in Heaven.

The story breaks my heart, of course, for the many reasons that others are so touched by his life. But, as a cancer mother, it brings back a sense of reality that we will never stop worrying about every headache, stomachache and fever. That we know there may be a day when Tylenol or a good ice pack will not be enough.

Our prayers are with Ben and his family. We know that God has chosen a beautiful angel on this Earth and in Heaven.

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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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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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