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HOW TO MONITOR YOUR CHILD’S PERFORMANCE IN SCHOOL

By Kathryn Wissler, M.S.,

           

If you are the parent of a child who was diagnosed with cancer and received central nervous system treatment (CNS) including cranial radiation, intrathecal methotrexate, or bone marrow transplant, we recommend that you devote time and energy in educating your child’s teacher about your child’s diagnosis, treatment and educational issues surrounding this treatment.  Research has shown that CNS treatment can compromise cognitive and/or sensory functions resulting in learning difficulties.  Many times these “late effects” do not become apparent for 2-5 years after treatment has ended.

Chances are you will be aware of problems your child is having in school within the first 3 years of treatment, if problems occur at all.  Many times children are able to compensate for learning difficulties in the early grades, but as the demands of school increase, subtle learning difficulties become more evident.  Schools are alerted to the need for regular monitoring of educational progress when first diagnosed, but may not continue monitoring after treatment has ended.  Expectations at different schools and in different grades change and could impact your child’s success.

Below is a checklist of things for parents to do to monitor their child’s performance and advocate for necessary services.  Please keep this with you and refer to it throughout your child’s school career.

WHEN TO CONFERENCE WITH SCHOOL PERSONNEL:

  • Prior to beginning any new school
  • Changing from elementary to middle school
  • Changing from middle school to high school
  • Prior to graduation
  • Prior to beginning college

WHAT TO SAY AT CONFERENCES WITH SCHOOL PERSONNEL:

  • Review your child’s medical history
  • Discuss the risk of learning problems
  • Review current services and accommodations given to your child, i.e., special transportation, testing modifications, reduced homework, modified PE., preferential seating, etc.
  • Discuss possible changes in services and accommodations and changes in expectations due to new location (especially when going from grade school to middle        school)
  • Bring along information about “late effects”
  • Identify a case manager at the school who will monitor your child’s accommodations, services and progress

WHEN TO ASK FOR TESTING:

  • Baseline testing is recommended for all CNS treated school aged children within 1 year of treatment
  • When you note any change in your child’s report cards (i.e., A’s to B’s, B’s to C’s, etc.)
  • When there are changes on standardized testing through NCLB (i.e. going from 3’s to 2’s or 2’s to 1’s)
  • When your child exhibits frustration or struggles with schoolwork
  • When concerns are raised by your doctor or nurse during Late Effects Clinic consultation

If your child is classified by the CSE, there are regularly scheduled meetings and testing done for your child.  If your child is not classified, but receives special services under Section 504 or informally through the classroom teacher, there may not always be a regular schedule of testing or review of special needs.  In these cases you must be proactive and request a school conference to discuss your child’s program.

We’re getting down to our last few weeks interning here at CURE! The final participants in this year’s Penny Drive finished at the beginning of April, and we exceeded our goal and ended the Penny Drive with a total of $5,700!! We are so happy with this turnout, and so thankful for everyone that contributed. In April, we also got to be a part of many events. We were at the Knighthawks game, A.P. Enterprises Annual Easter Egg Hunt, and of course CURE’s 5k and Fun Walk! We are so sad to finish our time here with CURE this month. Thank you so much to Holly, Bridget, and Adella for advising us and helping us learn so much from this experience! We feel so lucky to have been a part of an organization that has such a positive impact on families in the Rochester area.

The Program Coordinator position at CURE is still open!
We are hoping for a CURE Parent to join our team in this position:
– Plan and execute free programming for CURE families including (but not limited to) Survivors’ Day Picnic, Holiday Party and Parents’ Night Out events
– Plan and execute Brick Laying Ceremony, Remembrance Service and support for bereaved families
– Coordinate Volunteers in the office (including interns) and plan Volunteer Appreciation Dinner
– Create and implement Volunteer Training Program
– Some administrative tasks
– Coordinate Holiday Assistance Program (gifts for our families)
– Work in partnership with the Parent Advocates to ensure our families’ needs are met (including bell ringing ceremonies!)
– Maintain database of CURE families

Must be able to come and work in the office. This position has a flexible schedule, but Fridays from 9 – 4:30 are a must!
The holidays are hectic and will require more time spent in the office. This will be November 1st through December 23rd.
Interested? Send Holly your resume and cover letter: holly.dutcher@curekidscancer.com

RaeAnna is currently a junior at Hilton High School. On September 25, 2014 during a routine x-ray to rule out pneumonia; a golf ball size mass was found between her left lung and heart. On October 3, 2014 the official diagnosis from the biopsy came back… The mass was a Neuro-Endocrine tumor called Paraganglioma. On October 31, 2014 (after a quite an extensive thoracotomy) she successfully had the full tumor removed. Not only was the tumor removed but we finally had an explanation of the ongoing migraines she had been suffering from for almost a year and a half prior.

“Rae”, as we call her, is now 4 1/2 years cancer free! Also, as of a month ago, she is no longer taking any medications from prior or during her cancer diagnosis! Rae’s strength and courage through it all kept her family and friends optimistic and upbeat. She is currently looking into colleges and plans on becoming a pediatric oncologist herself in the future. Rae recently joined the CURE Volunteer Committee and just volunteered at her first Cure Event; The Cradle For A Cure Knighthawks game! She is overjoyed to be able to give back and support all the child cancer warriors and families out there today. RaeAnna, as we all do, wants more than anything to find a cure to end ALL Childhood cancers. She wants to remind everyone that here at CURE No Child Fights Alone!

 

Congratulations to Paige who rang the Bell on April 8th!

Congratulations to Elora, who rang the End of Chemo bell on April 18th!

National Volunteer Appreciation Week

This week is #NationalVolunteerAppreciationWeek and boy, do we appreciate all of you! Thank you for sharing your time, your talents and your love <3 YOU make what we do possible. Thank you. Thank you. Thank you.

Posted by CURE Childhood Cancer Association on Wednesday, April 3, 2019
Manicures for Mom
When:
May 13th, 2019
from 6:00 – 8:00 p.m.
Where:
200 Westfall Road
Rochester, NY  14620
Let’s celebrate Mom and all she does!
Join CURE Childhood Cancer Association for this very special Parents Night Out.
Life happens, take time to enjoy the company of others and have some fun!
*Space is limited on programs.  First come first serve. If you are interested please RSVP at 585-473-0180 or staff@curekidscancer.com*

May 22nd from 6:30 – 8:00 pm
Meeting held at the CURE office
May’s Book: Girl, Stop Apologizing  by Rachel Hollis

A story-theatre presentation of a very special developing new musical for the whole family!  Seen through the eyes of a sweet, innocent puppy-dog, this very special musical of unconditional love, pure joy and life’s discoveries – some fun, some not so fun…transcend barriers and become totally identifiable to everyone.  You’ll laugh, you’ll cry, tap your toes and sing on your way out the door.  the LIKAH! enchantment will remain with you for a very, very long time!

Performances are May 17 – 19th

Space is limited.  First come first served.  Please contact staff @curekidscancer.com for more information.

Food Bags for CURE Families:

We know it can hard to make ends meet over the summer with the kids home from school. We at CURE want to help! Please contact the office if you would like to stop by and pick up a food bag. We have staples like peanut butter and jelly and mac and cheese that we hope you’ll find helpful!
Please call the office (585-473-0180) or e-mail staff@curekidscancer.com to set up a pick up time!

WOW!!!! We are so blown away by the support from the Fairport Central School District this year. A WHOPPING $35,000 was raised through the efforts of dedicated students, staff and community members. Proceeds were donated both to us and our great partners over at Golisano Children’s Hospital. What a remarkable group! Thank you for letting families know they are not alone in their battles. YOU ARE AMAZING!! 


A huge thank you to our friends at Larry Masci Electric. Larry & Tara have instituted a program where their employees can have an amount deducted from their paycheck designated for charity. At the end of the year, they donate the money from their employees to a worthy cause. CURE was the worthy (and very humbled and appreciative!!) cause this year. It gets better. Larry and Tara then MATCH the donation of their employees, DOUBLING the impact! What great leaders they are!! Thank you for choosing CURE and making a difference to our families.

We also appreciated the invite to your employee celebration for the check presentation! Tara put together a delicious spread of food!

Thank you to Friends of Jason for hosting their Annual Chicken BBQ, and collecting toys for our CURE kids!  They raised $5,700 for CURE, and look at all the great toys and games they collected!

A huge thank you to our friend Stacey who stopped by the CURE office a couple of weeks ago to drop off an assortment of games, books, essential oils, gift cards and more! Stacey set up a collection as part of a project, and we cannot thank her and all the amazing people that donated to her collection enough! We are so grateful for your support.

It was a cold day, but BOY was it fun!
Thank you to our friends at A.P. Enterprises Property Services for hosting their 3rd annual Easter Egg Hunt!
Check out our Facebook Live video of the kiddos getting their eggs here.


Did you know that registration is now open for our 4th Annual Patrick Carr Memorial Golf Tournament on Monday, July 29th?  Don’t miss out on a day full of golf, food, games and prizes.  The tournament has sold out the past two years, so be sure to secure your spot now.

Click here to register!

sponsorship opportunities are still available.  Email our Community Coordinator Bridget Sadler at bridget.sadler@curekidscancer.com for more details.

Save the Date for another great day:
Our Charity Events’ Motorcycle Poker Run
$15 per motorcycle or car (plus $5 per passenger)
Take a scenic route while supporting CURE! Collect a playing card at each stop. The top three card hands WIN CASH!
Music, food and fun at the end of the ride at the Rush Creekside Inn!

It’s O-FISH-AL!
Our Annual Recipe for a CURE Sunday Brunch will be held Sunday, September 29th at the Arbor at the Port!
Partnerships available immediately; ticket information coming soon!

Our friend Amy is keeping her LuLaRoe party open until Friday! She braved the snow to join us at our Beach Party at the 5k this past Saturday and is kind enough to extend the show!

Check out her website, do some shopping and LuLaRoe will match the donation!!

https://shop.lularoebless.com/AmyTermotto

Our friends at Awareness Coffee are helping to spread awareness about Pediatric Cancer with their coffee made from a specialty bean out of Peru, and roasted to perfection with subtle floral and chocolate notes.

A portion of proceeds will be donated to CURE, Golisano Children’s Hospital and Camp Good Days – your choice at checkout!

Buy the coffee here!


Help support St. Baldrick’s Foundation by eating at Buffalo Wild Wings on West Ridge Road in Greece!  Mention “Team C” to your server March 17th – May 4th for 10% of your total to be donated.

And don’t forget about the annual St. Baldrick’s Fundraiser in Rochester on Sunday, May 5th.  you can find details of the event here:

https:/www.stbaldricks.org/events/mypage/951/2019

We are excited to announce that we have partnered with Rite Aid and are now an official KidCents charity! KidCents is a program created by The Rite Aid Foundation that allows Rite Aid customers to round up their purchases to the nearest dollar and donate their change to help support kid-focused charities.

Here’s how you can enroll in the KidCents program and round-up to our charity:

Step 1: Enroll in wellness+ with Plenti (Skip to Step 2 if you are already a wellness+ with Plenti member)

  • Click the box on the right to ‘Enroll in wellness+ with Plenti
  • Complete registration process for wellness+ with Plenti
  • Click through to finish signing up in Plenti
  • When finished with both processes, you will be directed to RiteAid.com

Step 2: Enroll in the KidCents Round-Up Program

  • You should see your account logged in on the left. If not, sign in with the account information.
  • Click ‘Start rounding up today!’ dial on the left

Step 3: Designate Your Charity

  • Click ‘Select a Charity’ on the left
  • Type [INSERT CHARITY NAME HERE] and click ‘Select This Charity’

By rounding up, you are helping us to reach our goals by simply shopping at Rite Aid. Feel free to invite your friends and family to participate in the program. Imagine the change that your change can make!

Interested in helping make our 11th Annual Recipe for a CURE Brunch come alive?  Join us Thursday, May 2nd at 6:30pm for our Brunch Committee Meeting.  Please RSVP to bridget.sadler@curekidscancer.com if interested.

We need help with our Julie Roberts Children’s Memorial Garden! Sign up for a week to adopt the garden this summer and lovingly care for it in memory of the sweet children we’ve lost.
Sign up here: https://www.signupgenius.com/go/70a0e44acaa2da6fd0-garden

Join Our Team!

We are currently looking for interns for Summer and Fall ’19!!

If you are interested, please email staff@curekidscancer.com

Has CURE helped you? We would love to hear stories about how CURE has helped you and your family. These stories will be shared with grantors, donors, on our website and social media. We want the community to know their contributions are making a difference! Submissions can be sent to staff@curekidscancer.com.

What programming would you like to see at CURE? We are working on developing more Parents’ Night Out events (where would you like us to set one up??) as well as joint programming with other local organizations. What would you like to see us work on? Please send suggestions to staff@curekidscancer.com



Wish List Items Needed:

We are so grateful to the community for all of the wonderful donations we receive throughout the year. We could not service all the families we do without this generous support.  If you or a community group you belong to is looking for something to do for a charity, please consider donating items from CURE’s wish list so that we can continue to provide for our families.

Items Needed:

  • A cure for childhood cancer, blood diseases and brain tumors!
  • Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
  • Weighted blankets
  • Essential oils
  • Mini diffusers
  • Dry shampoo
  • Paper towels and toilet paper
  • Facial Cleansing Wipes
  • Cases of water
  • Items for teens or young adults
  • Toys for kids under 3 years old
  • Playing cards and card games
  • Word searches, adult coloring books and crosswords

We ask that all items be new and recently purchased.  Thank you!

3 WAYS TO USE SPRING TO HELP YOU THROUGH YOUR GRIEF

By Chelsea Hanson

When we’re grieving, sometimes all we want is a fresh start. You can’t undo your loss, so the next best thing is to move forward. Spring is a time of “Rebirth.” It’s the perfect time of year to get a fresh start on anything. This spring, take advantage of the changing season to help you through your grieving process.

1. Make Time for Spring Cleaning

There’s something about the beautiful weather and warmer temperatures that makes us want to clean in the springtime. Clean anything; a room, your car, a closet, your entire house, your mind. This is a great opportunity to organize or update your memories. Have a shoebox of photographs you’ve been meaning to display? Take time to put together a new memorial with the pictures. If you’re feeling really ambitious, brighten up your house with new paint colors. Research shows that certain paint colors have an effect on our mood. Freshen up your living room with a sunny yellow accent wall or cover your bedroom walls with a cheery green color.

2. Plant Something

Spring is the perfect time to put your green thumb to the test. If you have room in your yard, plant a memorial garden in honor of your loved one. If planting an entire garden isn’t feasible, start small with a single plant. The growth and beauty of the plants or flowers will give you inspiration each day to live life. Spending time outside will help you to clear your mind and be at peace with your thoughts.

3. Start Something New

There’s always more going on during the spring and summer months. Find out what’s happening in the community or think of a new hobby to try on your own. Pick your activity and make time for it at least once a week. Your new activity will give you something to look forward to and will help take your mind off of your loss, even if it’s only for an hour a week.

The spring months can actually be hard on a grieving person. It’s hard to watch everyone else moving forward with the changing season if you’re not ready. But keep in mind, just because you’re starting something new or changing things up doesn’t mean you have to leave anything behind. Your loved one would want you to enjoy the relief from the cold and take advantage of the wonderful things that spring has to offer. 

Bereavement Group:

 

The first Wednesday of each month

Hosted by Kiersten Kunick, Parent Advocate, Liz & Paul Conrow and Deb Zalar, bereaved parents

200 Westfall Road, Rochester 14620

From 7:00pm-8:30pm

No reservations required


ROC City Sicklers:

ROC City Sicklers Logo

The third Tuesday of each month

UR Medicine

Conference room ACF A/B

6:00pm-7:30pm

Free Parking

Food provided by Wegmans


Are you looking for someone to help tutor your child? Boost provides supplementary tutoring for children with cancer and other chronic diseases, which may prevent normal educational development. This group of teachers will not supplement the tutoring being provided by the school, but will act as a “boost” to a child by helping him/her better understand material being presented at the child’s grade level. Our tutors use their teaching expertise to fill the gap left when traditional schooling is not possible. The group is currently in need of volunteer tutors. For more information please contact Linda Bolan at 585-317-7269 or paperl@ottcmail.com

Educational Consultant Services from CURE

Do you have questions and concerns about your child’s schooling after diagnosis of cancer, brain tumor or blood disorder? CURE can help. Kathryn Wissler, M. Ed is available for educational consultation with Pediatric Hematology Oncology Patients seen at Golisano Children’s Hospital at Strong.  If you would like to speak with Kathy Wissler either in person or via phone, please contact Kiersten Kunick , CURE Parent Advocate, at 585-697-4470, or call the CURE office at 585-473-0180 and she will make a referral. This service is provided free for CURE families.

Facebook Live:

Kiersten Kunick, Parent Advocate, goes live on Facebook.

She can answer any questions during this time, share upcoming news, provide support and connect parents with other parents.

Have a topic you’d like to hear about? Feel free to reach out to Kiersten at kiersten.kunick@curekidscancder.com 

Brian Bisgrove Home of Courage:

The Brian Bisgrove Home of Courage, located an hour away from Rochester, is a retreat and respite home for families with children who have life-altering conditions.  Children and their families are invited into the beautiful, handsomely-appointed log cabin for a 3 or 4 day stay and rest and repose, all completely free of charge.  At the Home, medically fragile children can experience a different kind of healing, one of the mind and the spirit.  It’s a place to let go of anxiety and stress and focus on the family.

The website, with more detailed information on the Home and the application is:  www.homeofcourage.com.