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Archive for August, 2009

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!

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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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