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Archive for the ‘retinoblastoma parent’ 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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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!)

Entertainment

  • 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!

Miscellaneous

  • 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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A number of Retinoblastoma families have met up at Camp Sunshine over the years. I really encourage any Rb family to attend Camp – everyone talks about how important meeting other families have been to our own adult recovery and for the self-esteem of our children. It’s amazing that many of us only see each other 1x a year at Camp Sunshine (and, Rb week has only been for the past 2 summers!), yet we all feel like family.

Recently, an Rb dad was diagnosed with cancer. It’s tough knowing what his child had gone through, and our collective hearts ache to know that he has to go through treatment now, too.

n676255178_5193679_9895Here is a “pillowcase” project we created for this dad. It was sent all around the country to different Rb/Camp families — to me, this shows the true testament to the importance of knowing other Rb families, but also just knowing other families who have been through a similar experience.

 

Our prayers for a speedy recovery and for your strength, Rich! Your Rb friends are rooting for you!

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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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