Archive for the ‘retinoblastoma child’ Category

From the day my child was diagnosed with Rb, we were very honest with her about what was happening. She was 2-years old, kind of on that cusp of still being a “baby” and being a “child who can understand”.

I’ve met parents who have decided not to tell their children what was happening. Their children have never heard the word “cancer” in their homes. We took the opposite approach. My child was active in her port-a-cath flushes, she knew the names of all the procedures and medications. She knew she had cancer.

Throughout the years, I have been very active speaking about retinoblastoma — lecturing in college biology and health care classes, speaking at fundraisers for Camp Sunshine, and working with families through this RbNE site. My daughter always accompanied me to these engagements. She usually sat next to me and colored. Or, she would hide behind my legs. Or, she would just run up and down the aisles while I spoke.

But, this one time was different. As I prepared my speech at Operation Swan Dive, my daughter turned to me and said, “Mom, I would like to do the speech this time.” My daughter had just turned 6-years old a few days prior. I said, “Sure!” and she grabbed the hotel pad of paper and a pen. My child began to write….

When she was finished, she asked if she could practice her speech. She practiced it ONE time, and then we left for the venue.

This was her very first speech. She wrote it all by herself. She delivered it by herself. She proved that Rb kids are amazing — but we already knew that, right!

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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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It’s that time of year again — diagnosis anniversary for Jo. It’s hard to believe that this post here  was written a year ago already.

picture taken by Ashley R. from Camp Sunshine

picture taken by Ashley R. from Camp Sunshine

Together, Jo and I go around to classes, fundraisers, and events to speak about retinoblastoma. Well, actually I speak and Jo hides behind my legs. However, this year, at Operation Swan Dive, Jo decided to speak. About 2 hours before the event, she asked for a pen-and-paper to write down her words. Honestly, I thought she was just writing jibberish. But, 20 minutes later, Jo asked if she could read it to me. … side note, Jo just turned 6 a few weeks ago….

Her speech began like this “Hello. My name is Jo. I am six years old. When I was 2, I got cancer.”  She actually “had” cancer months before she turned 2, but it was 8/17/2005 when she was actually diagnosed with Stage 5B cancer in her eye (destroyed her retina and reached the optic nerve and tear ducts). 1 enucleation, 6 months of chemo, 114 port accesses, 100+ Neupogen injections, 8 exams under anesthesia, 2 spinal taps,  MRIs…. CT scans… prosthetic fittings … and we have found ourselves at 4 years down the road.

We’ve been living as a cancer family for 4 years now, yet it’s hard to forget the exact moments of Diagnosis Day. I found myself, at 8:30am, feeling very short of breath and realized that it was 8:30am when we went to the pediatric opthalmologist to inquire about Jo’s lazy eye. At 10:00am, she was dilated and examined. At 10:15am, we were told she had cancer and that she should abstain from eating or drinking. By 11:30am, we were at Mass Eye and Ear waiting for a break in Dr. Mukai’s schedule. At 12:30pm, Jo had an ultrasound that confirmed 5 large tumors and massive seeding. By 1pm, we had called our family members to come be with us at our home – Jo was to be operated on the next morning.

There is so much to celebrate in these past 4 years – we’ve seen Jo grow into a beautiful and confident little girl. She had made lifelong friendships with other Rb kids, and she has made a difference in the lives of people she had met. Last night, at Operation Swan Dive, Jorge and I were approached by people who said, “We met Jo last year, and she changed our lives. After we met her, we never took anything for granted. We always saw the brighter side of life. ” One woman said to me, “Liza, in your speech last year, you said that having your health is the most underappreciated part of life. That, if we have our health, we have the world.” The woman went on to say that her husband had lost his job, and they really struggled this past year. But, every time they wanted to complain or feel sorry for themselves, they thought of Jo. They thought of the challenges she endured, the faith of her family, and the appreciation for life that we have. And, they looked to the brighter side of things.


To see Jo give her own speech in front of over a hundred people was breathtaking. I don’t think I could have imagined this day — and I certainly couldn’t have imagined it from a 6-year old. Yet, at the same time, I’m not surprised at all. Our kids are cancer survivors. I know that other cancer parents would agree that our survivors are stronger, tougher and more resilient than most children. And, yet, they are also more sensitive, more caring, and more generous than children who have not had to face life/death issues.


So, to all the kids celebrating their diagnosis days, “Hero” days, special days, cancer free days, or whatever you call it in your family — We Love You. We celebrate you. We look up to you. For, YOU are our role models. You are the difference in our lives. And yes, Different does make you Special.


Happy Diagnosis Anniversary, Jo!

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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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(Note: The other blog I run is To Loosen the Mind, a blog about cancer, anti-racism, and parenting. I thought I’d reprint this essay I wrote back in Summer 2008 to this RbNE blog since it does speak to our experiences at Camp. Enjoy! -Liza)

There are so many times when I’ve wanted to give up the fight against racism. There are many of my friends and a few of my favorite bloggers who have. There are days when I sit at work thinking, “Is this worth it? Can we really heal? Can we really learn? Move forward?” There are days when I want to scream, “I quit.”

Thankfully, I know that there is at least one week during my race-filled year when I do recharge and when I am humbled. This past week, I spent our 2nd visit to Camp Sunshine, a retreat camp for families with children with life threatening illnesses. My daughter was diagnosed with cancer just a few weeks after her 2nd birthday. It rocked our world. It changed our lives. She was diagnosed with retinoblastoma – a rare eye cancer that resulted in the removal of her right eye, 6 months of chemotherapy, and dozens upon dozens of doctor’s appointments, hospitalizations, and tests.

I tend to link disability activism with racism activism because I believe that, at it’s core, our goal is to raise children who treat others like human beings in this world.

Coming to camp has been a fantastic experience because “camp” is the place where we all feel normal for a week. Retinoblastoma children get to be in the majority. They get to experience privilege. They get to experience power. Confidence. Support. Every family that attends that week has been affected by retinoblastoma. Some children have both their eyes, having sucessfully treated their cancer with laser, radiation, or chemotherapy. Some children have lost one of their eyes. Some children have lost both of their eyes and navigate our sighted world completely blind. Each family has a slightly different story, but at the heart of our experiences is cancer in our children. Families from all over the country fly in to be together, to heal, to relax, and to be in the majority for a week. One of the many things that I find interesting about coming to camp is that race, ethnicity, geography, socioeconomic status, and gender all seem to fade away. It’s a place where people find that they are bonded by their experiences with cancer, rather than the identity labels we are faced with outside of this little heaven. For most of my year, I talk about race, diversity, sexism, etc., and for this one week, none of that even enters into my mind. We are all united by cancer. Our conversations are guided around the “cancer lens” through which we all see the world. And, for many of us, that cancer lens has given us a strong faith in the human spirit.

For 51 weeks out of the year, my daughter lives in the numeric minority. She is different than any other child she plays with at school and at home. She doesn’t interact with any other children with a prosthetic eye; and, outside of the hospital, we never meet any other children her age with cancer. Camp is where she feels normal, where she is in the numeric majority. Camp is where she doesn’t have to worry about dumb things people say when they notice she only has one eye. She doesn’t have to worry about what people will say if there is goop on her eye or if her prosthesis happens to pop out while she is rubbing it. Camp is where kids talk freely about chemotherapy, about their “special eyes”, and about their radiation. And, camp is where, if they choose, they don’t ever have to talk about it at all.

Camp is also where my daughter learns how to interact with children who are differently abled. She has made fast friends with two girls , Tacey and Mayci, who both lost their sight at around age 7 from reoccurances with retinoblastoma. Through their stubborness and their insistence that they not be perjoratively treated as “blind kids”, Tacey and Mayci defy stereotypes. They defy preconceived notions about blind children. They set a new standard, a new “normal”, and a new understanding of how high our children can soar if we give them wings rather than weights. Tacey barrel races horses in her homestate of Texas. Mayci plays softball on a sighted team (and, when given the option of having a “beeping sound” signal an approaching softball, she made the officials turn off the beeping because it was annoying her!). Parents and kids watch in awe as these two little blind girls actually lead each other around hand-in-hand through the camp grounds (which, yes, gives new meaning to “the blind leading the blind.”).

At first, my daughter was afraid of Tacey and Mayci with their white canes and the blank, unresponsive look in their eyes (they both wear prosthetic eyes). But, Joli really wanted to make friends with these two girls. When the girls would walked by, Joli would wave at them and, in her smallest voice, say “hi.” This happened a number of times, but I just watched to see how she would respond, react, and adapt to her method of “waving hello” to a couple of blind girls. Eventually, Joli grew discouraged and their unreciprocated “hello” and said to me, “Mommy, I don’t think I like Tacey and Mayci – they never say hello to me. I don’t want to be friends with them.” We had to explain to her that “they can’t see you waving to them, Joli. You have to actually say ‘Hello, Tacey and Mayci! This is Joli and I am in front of you waving.'”

Simple, right? Right.

We practiced saying, “Hello, Tacey and Mayci! This is Joli saying HI to you!” Joli tried that method the next time she saw Tacey and Mayci. They, of course, said “Hello, Joli!” and were so excited to make a new friend. Tacey and Mayci began to feel Joli’s hands, her face, her coarse curly hair, and her glases. They also felt Joli’s smile that was stretched from ear-to-ear in pure happiness! Since that day, the girls have been inseparable and even keep in touch during the school year. It was that easy….

This year, our second daughter was now old enough to experience camp with her sister. Of course, the first kids we saw when we pulled up to camp were Tacey and Mayci. Joli hopped out of the car, announced she was there and invited the girls to touch her — feeling the change in her height, the shape of her new Hannah Montana glasses, and her tight braids that stretched from the front of her head to the back. Once the girls reacquainted themselves, Joli brought her 2-year old sister, Jada, over to meet the girls. When Jada first saw Tacey and Mayci, she kind of freaked out. They were touching her face, touching her hair, and “seeing” Jada with their hands. I watched Jada’s body tense up and tears well in her eyes. Joli felt it, too. Joli, the now experienced 4-year-old-big sister, held Jada’s hand and, in her most delicate way, explained what Tacey and Mayci were doing. Jada stopped crying. Jada stood still. Jada touched back.

Camp is special for me for so many reasons. This time around, though, it helped renew my faith in our children – for whom many of us parents/teachers/counselors/friends want to raise in an anti-racist world. As I re-read my post, I mentally substituted words related to blindness and disabilities with words that are related to race and anti-racism. It’s amazing to me the connection between what we experience as a family with a differently abled child and as a family with race and ethnicity at our core. Through both lenses, we constantly learn and reinforce valuable lessons about treating people as humans. We learned valuable lessons about making mistakes and finding ways to move beyond them. We teach and learn that sometimes we can control how we interact with others (saying “HELLO” to a blind person) and how sometimes we have no control over a situation (a healthy toddler being diagnosed with cancer). We learn that kids sometimes do know better than we do. We learn that kids make the same pre-judgements that we do, and that kids can also quickly learn how to challenge those pre-judgements. We witness that our children are more adaptable than we are. And, they are often more resilient than we are, too.

My daughters and their friends many not necessarily think about living in an anti-racist way. They just want to make a new friend. They just want to be treated kindly. They want to have the same opportunities as others have, and they truly want to share their happiness. Learning from my children gives me hope. On those days when I get so discouraged having encoutered a racist person, a racist practice, and an unjust system, I think back to those first moments when my kids met Tacey and Mayci – how hard it was to feel left out and how easy it was to make a friend. They don’t see one another despite their disabilities, they see one another in light of their disabilities. They have seen beauty in being different.

And they know that different is what makes them whole.

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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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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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