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Camp Sunshine Dates

Hi everyone!
Camp Sunshine has announced the date for Retinoblastoma week. It will be from June 13-18th. Please, if you have not attended Camp Sunshine for Rb week, please try to go. It’s incredible. It’s a life changing experience for your Rb child and the entire family.

For more information, please visit http://www.campsunshine.org

On a different note, I’ll be speaking in Middleboro, MA on February 5th to help raise awareness about Camp Sunshine at a state wide high school leadership retreat! Go Camp Sunshine!

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RbNE October recap

Thanks to everyone who came out for the RbNE social! We had a fantastic time at the Boston Sports Club in Wellesley, thanks to the generosity of the BSC staff and to Marissa Ferber who coordinated the event! You truly gave our kids (and grown ups) a day to remember!

rbne_october2009

Why is it important for Rb kids and siblings to connect with one another? Here, we have a group of visually challenged kids (ranging from enucleation to limited vision) playing laser tag! For some of the older kids, they have been invited to birthday parties with laser tag but just didn’t feel comfortable going because they weren’t sure if they’d be able to participate due to the low lighting, safety concerns, etc. Well, in a group of kids “Just like you” or who have siblings just like you, it’s easy enough — and acceptable — to test things out! So, thanks to the great support of Rb kids and siblings, our survivors got to try out laser tag! After a trial run (which isn’t usually part of a “normal sighted party!”), the kids asked for the lights to be turned off and to play laser tag! Hurray!

Here’s a great recap of our fun at the Boston Sports Club @ Wellesley!

Rb Kids are Amazing!

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!

RbNE Fall Get Together

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

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!

RbNE Families

rbne kidsThanks to the Nassers who invited the RbNE families to their home when we got rained out of our outdoor picnic! Here are some lovely photos of our RbNE families! We are already planning the next get together, so please email me at Liza@rbne.org if you are a new family who would like to join us!

 

I can’t stress enough how important it is to meet other families with Rb. There is something so comforting about talking with someone who completely understands what you are feeling, your thoughts/emotions, and the journey you are taking. Please join us if you are new to the Rb community! We’d love to meet you and support you during this time!

Diagnosis Day, year 4

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!