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Congratulations to Lori Kofron Graham who just started up Retinoblastoma Midwest (www.rbmw.org). It’s so wonderful to see both awareness and support out there for families who are living with retinoblastoma!

Many of us just returned from Camp Sunshine, and I’ll be sure to update folks with some great pictures. I hope that others can join this very important experience (usually the 2nd week in June) because it helps to change the lives of families with Rb.

Welcome RbMW to the Family!!

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Please scroll down for the Camp Sunshine post on “What to Pack!”

joli-no-eyeA comment by a new parent in the post below reminded me of just how wonderful it is to be at Camp Sunshine. When Joli and I speak at Camp fundraisers, we often share the importance of “feeling normal.”

The parent commented that her child will not have her prosthetic eye at Camp, and honestly, I didn’t even flinch. Why? Because as Rb parents, we’ve seen it all. Most of us are more than familiar with the red “hole” in our children’s faces — I say that affectionately! During Rb week, the kids with enucleated eyes outnumber the kids with 2 seeing eyes.  How often during the year can you say that?? And, that’s what I treasure the most about our time at Camp. For an entire week, Joli’s special eye is completely normal. She gets into a group of kids and, in addition to talking about the latest Hannah Montana news, which Jonas brother they love, and the decorations they have on their Crocs, they also talk about which “special eye” they have.

For the kids, it’s totally normal for them to see another kid with a “red eye”. Just about every child there wears glasses. Many of them have had chemo and have the port-a-cath scars to prove it. They all know not to run around with sharp objects, and they get very protective of any kid who gets hit in the face with a stray volleyball. The kids — and parents — rally together because they share a same vocabulary. A same experience.

Parents have shared stories of post-Camp revelations. They’ve come back and shared that their son or daughter no longer fears taking out their special eye. They say that their child is more confident at school and knows that their special eye isn’t weird. Parents also undergo a transformation. Many parents come to Camp shortly after diagnosis and aren’t sure what the future holds for their children. Then, they see kids like Tacey (a child who is blind) run around, sing, dance and play tag! They see kids like Landon and Joli who were diagnosed much later in life (ages 2). They meet kids like Julia who is a thriving and brilliant 9 year old who had multiple surgeries as an infant. They meet kids like Leah who has such incredible movement in her prosthesis that you’d never know she had a ‘fake eye.’ You meet fraternal toddler twins — one brother had Rb, the other did not. And, the examples go on and on! Parents see that their kids will be JUST FINE. No, I take that back — they’re BETTER THAN FINE! They are truly heroic!

When we speak at Camp fundraisers, I often ask the audience to imagine a time in their lives when they didn’t fit in; then imagine a time when they felt so loved and embraced for exactly who they were. Camp Sunshine – and the friends we make there – is that place. It’s the place in your heart, in your memory, and in your world where you feel completely normal — and completely special — all at the same time.

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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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Just a quick note of thanks to folks who are shaving their heads in honor of St. Baldricks! When Joli was diagnosed with cancer, we signed her up as an “inspiring child”.

Feel free to surf over to http://www.stbaldricks.org. While my brother and husband didn’t officially shave their heads through this program, they definitely shaved their heads as a show of solidarity to Joli when she lost her hair to chemotherapy!

I’ve recently heard from a few folks from around the country who have chosen Joli to be their inspiration – thank you!!!


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Happen to be watching “House” tonight on FOX, and the “patient” is a retinoblastoma researcher! Hurray! Way to get some exposure! (although, one of the doctors makes a comment that he “saw a 4-year old retinoblastoma patient on his oncology rotation” — which, we all know that, more likely, a child is around 2 years old!

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Hi all! The dates for Camp Sunshine’s Retinoblastoma week have been announced. It will take place on June 14-19th. For more information, go to www.campsunshine.org. Don’t miss out on this opportunity to meet other Rb families and kids!

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So sad to report that Ben Underwood has finally earned his wings and entered into Heaven. We pray for his family, his friends, and all those who he inspired during his short life here with us.

Ben was diagnosed with bilateral retinoblastoma when he was young. He gained fame when news that he had been using echolocation caught interest of the general public as well as scientists and doctors. Ben navigated his world without the use of  a white cane (which is controversial to some). Many parents admired his mother, Aquanetta’s, approach to parenting — which was to never allow Ben to be treated as if he were disabled. She pushed him, and he thrived. Ben’s recent diagnosis and passing reminds us all that cancer is cancer; illness is illness; and that while we experience periods of “wellness”, the fear sometimes never leaves us.


The link to his website also has a donation button to donate directly to his family.

Ben, thank you for inspiring so many people with your courage, your faith, and your belief that all things are possible. We will never forget you.

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