CURE main logo pic

A note from our Executive Director

Happy Holidays, Friends.

Is anyone else exhausted yet? I know it’s just the beginning of December, but I am going to be honest – I am exhausted! Are you also looking at your calendar noting all the parties, gatherings, volunteering and obligations you’ve committed to for the month and starting to panic about how you can possibly get it all done? You are not alone.

The holiday season feels like it takes forever to get here, but is gone in a flash. Some of my most favorite memories revolve around the holidays. Having a three year old has brought a new found magic to Christmas for my husband and I. I worry that I am so overwhelmed and rushing around to knock tasks off a list that I am missing the magic and meaning of the holidays. So I am asking all of you, including myself, to slow down and soak up the season. Here is a great Holiday Checklist I found that I am going to try to complete and I encourage you to complete as well (and report back to me about how you did!!):
– Write a letter to Santa (if you celebrate Christmas) preferably at a local Macy’s store so $1 will be donated to the Make-A-Wish Foundation
– Drive around and look at Christmas lights while drinking hot chocolate
– Watch “Elf” and make paper snowflakes
– Do random acts of kindness
– Bake cookies and share with those around you
– Watch “Home Alone” while eating cheese pizza
– Donate toys and clothes to a local charity
– Have a PJ and holiday music dance party
– Let those around you know just how much you love them and appreciate them
– Make a snow angel!

So what do you say? Care to join me? Enjoy the simpler things this season and have fun while doing it. I can’t wait to hear from you!

On behalf of the CURE Staff and Board of Directors, I’m wishing you all a happy, healthy holiday season overflowing with love, laughter and wonderful memories.
Slow down and enjoy it.

From my family to yours, happy holidays.

Spotlight On….

Ian

Ian (5 years old) was diagnosed with embryonal rhabdomyosarcoma in June 2018 when a tumor was discovered in his pelvis. He spent over 2 months in the hospital from many serious complications. He was unable to walk and had to use a wheelchair and eventually a walker. The day finally came when he was going to be discharged… he was excited to go home, but at the same time he was going to miss everyone and all the fun things he got to do at the hospital. Once at home though, he quickly remembered that there’s no place better than home! He still regularly goes to the hospital for chemo (this time it’s outpatient!), and he continues to regain his strength and is learning to walk again. He completed radiation treatment in November and will continue his chemotherapy treatments into 2019.

He picked up quite a bit of medical knowledge since spending so much time at the hospital. Even early on, we were surprised when his IV infusion pump started beeping and he asked us, “Is it beeping because the infusion is complete or because there’s air in the line?” He knows the names of all of his medications, the different types of diagnostic tests, and the names of various medical conditions and medical supplies. Although he hasn’t been able to attend Kindergarten yet, he has practically started medical school!

The staff at 7 North and the Hem/Onc clinic have been wonderful. They are so compassionate and go out of their way to make Ian smile. The CURE staff has been such a blessing as well, providing both financial and emotional support throughout this journey. They were there when Ian was newly diagnosed, and their continued support has been very helpful. They have also opened the doors for us to the childhood cancer community so that we can talk with other families going through similar situations.

At home, Ian enjoys reading, building puzzles and Legos, coloring, baking, and watching Paw Patrol and Octonauts. Some of his favorite foods are tacos, macaroni and cheese, salmon, and mushrooms. His favorite animals are sea creatures like whale sharks and narwhals. He appreciates all there is to see in the world. On a typical car ride, he enthusiastically points out different vehicles, planes flying overhead, interesting buildings and construction sites.  He loves all the seasons and enjoys gardening in the spring, going on picnics in the summer (actual picnic blankets required), playing in the leaves and painting pumpkins in the fall and shoveling snow with his Paw Patrol shovel in the winter.

Although Ian has this diagnosis, it doesn’t stop him from enjoying all that life has to offer.

Our Most Sincere Condolences

November has been particularly difficult here at CURE.  We lost two beautiful souls to childhood cancer.  I would like to have everyone take a silent moment and think of those who we know that have lost their battle, especially these angels.  Our sincere sympathies go to the families of:

Alex
Grace

It’s the holiday season…

Auction Time!
Do you have a Baltimore Ravens fan in your life? You can win the Holidays this year by bidding on this incredible package! Included is a 3XL long sleeve Ravens shirt, size Medium Dri-fit Ravens t-shirt and (the best part) an autographed football by Quarterback Joe Flacco #5!! Bidding will be through Facebook. The post will go up on December 2nd. To bid, comment on the photo with your bid amount. Bidding starts at $100. Bidding ends Friday, December 14th at 5 PM.
There will be more auctions like this in the near future. Keeps your eyes open for some great Buffalo Sabres stuff soon!
Thank you to our friend Tony for this amazing donation!

We are accepting donations of new toys for all ages for the Holidays! Please drop off donations to the CURE office by December 7th.
Some ideas include:
Legos
Incredibles Toys
Baby Doll Strollers
Headphones/earbuds
Learning toys for toddlers
Slime making kits
Sponge Bob toys
Make-up kits
Disney Princess dolls and accessories
Star Wars toys
Pokemon toys
Fancy Nancy
PJs (if interested, contact us for sizing)
Pink and Yellow Girls’ clothes size 2T
Blue and Red boys’ clothes size 2T
Gifts for teenagers
African American dolls

Give the gift of coffee –
and give back to CURE!

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!

Winter is coming.Buy 2 washes, get 1 free.
Buy here.

Free CURE Programming and Events

Our friends at the Bailey Road Fire Department in Henrietta have kindly donated dinner and a tour at their firehouse! CURE Kids: contact us if you are interested in having dinner with REAL firefighters and touring their house! One lucky CURE kid and his or her family will get this once in a lifetime opportunity. Thank you, Brian Sidney-Smith for donating it to us!
Contact Bridget if you’re interested in this awesome dinner!

Keep an eye out for our NEW Book Club coming January 2019!

If you have any questions, you can contact
Adella.ivison@curekidscancer.com

Thank You for Your Support!

Look at this crowd!!

Another huge thank you to our friend Andrew Loughlin who coordinated this amazing group of runners at the ROCtoberfest 5k in October. The group raised over $700 for our children and their families. Thank you for thinking of CURE! Will we see you at our 10th Annual 5k and Fun Walk on April 27th?!

How sweet is our friend Mila? Mila (and her amazing parents and grandmother) decided that the best way to honor her 2nd birthday would be to have donations directed to CURE in her honor. We are so thankful for your thoughtfulness and kindness, Friends. And check out those smiley faces Mila drew. Sweetheart, you are putting smiles on so many faces. Thank you!

We are speechless. Our friend Bill from the Wayne County Children’s Cancer Fund (WCCCF) stopped by our office in November before Thanksgiving with an INCREDIBLE donation. The group was formed in 2002/2003 and has provided assistance to nearly 100 families in Wayne County who were battling childhood cancer. The support provided by the group ranged from holiday assistance to child care expense assistance and everything in between. Bill, your tireless dedication to families facing these awful diseases has made a tremendous difference. We are humbled you thought of CURE for your donation and we appreciate you and everything you’ve done more than you know. Thank you.

We have been blown away by the support from local Lions Clubs recently. We were invited to speak at a local Lions Club conference at the beginning of November at Batavia Downs. We were surprised by a HUGE load of items from our wish list. We also had the opportunity to have dinner with the Spencerport Lions Club this month as well. The support and advocacy from the groups, but especially Dawn Countermine and Laurie Streb, is truly appreciated. Thank you for advocating for and supporting our families.

We are BEARY appreciative of the 45 Build-A-Bears donated to our organization by CURE Bears for Hope and Love. We just know our kids are going to love receiving these little lovies. Thanks so much for thinking of our kiddos!

Think a bake sale is no big deal and doesn’t have potential to raise money?
W R O N G

Our friends at NRG Rochester held their annual Bake Sale Auction the week of Thanksgiving at their weekly meeting. Members bake their hearts out and donate their baked items to the auction. Members then bid on these delicious desserts. This year’s auction raised over $600 (with the most expensive baked item being a pink funfetti cake baked by Dale’s daughter Emily (who is holding the check in the green dress)). The group kindly matched (and then some) the donation, raising $1,400!! Thank you for your kindness!

We cannot say thank you enough to our friends at Wegmans (and manager, Brian) for their generous donation of food for our families! This donation was made in memory of RJ “Tough Guy” Kaufman and we cannot think of a better way to honor such an incredible little fighter. 

Upcoming Fundraisers

CURE is again partnering with our friends at The Messenger Post Media for our Holiday Heroes campaign. To have an ad or message included in the insert that will be included in the edition closest to the Christmas holiday, ad and copy must be received by December 5th.
Purchase your ad here.

The Penny Drive Fundraiser starts in September and runs until June. CURE brings gallon milk jugs into Rochester schools and students fill them with spare change. The drive usually lasts 1 week and CURE picks up the jugs and calculates the total amount raised. We cannot thank Upstate enough for their generosity. Annually, the penny drive raises around $4,000!

Are you interested in hosting a Penny Drive at your school?

E-mail staff@curekidscancer.com

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)

  • Visit KidCents.com and click ‘Sign In’ on the left
  • 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

  • Visit KidCents.com
  • 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!

We Want To Hear From You!

Join Our Team!

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

If you are interested, please email Adella.Ivison@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 Adella.Ivison@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
  • Small pocket/purse-sized calendars
  • Paper towels and toilet paper
  • Items for teens or young adults
  • Toys for kids under 3 years old

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


Bereaved Families Corner

DON’T JUST SURVIVE THE HOLIDAYS — SUCCEED

By Deirdre Belton

Like clockwork, right about now the specter of the holidays begins to loom large, and if, in your sorrow, you are someone who is filled with apprehension at the thought, take heart. You are not alone, and gloom is not the only thing being served up on the menu this year. On the contrary, not only can you survive the holidays, you can actually find ways to make the most of them.

You would have to live like a mole in this country to avoid the holiday hoopla that begins during the summer months and continues on until the bills arrive in January. In August the catalogs arrive advertising the pre-Christmas sales. Newspapers and magazines are well into their fall and winter collection campaigns. We in the Northeast have already pre-bought our heating oil, and we still have time at the beach to think about how we are going to cope with those seemingly never-ending weeks through Thanksgiving and Hanukkah, Christmas and on into the New Year.

Well, I’m here to tell you that this is do-able. If Madison Avenue can plan ahead, so can you. It takes careful thought, some imagination and no small amount of fortitude, but it is not impossible. Holidays do not come as a surprise; they roll around the same time every year. As you read this there is still time to make these next weeks work in your favor. The things you might want to be thinking about as you plan are: time, money, tradition, needs vs. wants and obligation vs. desires.

Time: How much of this precious commodity is at your disposal? Do you work outside the home? What are your responsibilities inside the home? Are you the primary wage earner as well as caregiver? Assess how much time you can devote to holiday preparations and make that stick. If you send out holiday greeting cards, perhaps you can decide that you will write out two or three each evening starting now and have them ready to mail on the day of your choosing. If you are going to shop for gifts that must be mailed, you might want to consider catalog companies that will do the gift wrapping and mailing for you. If there are special foods that you make for the holidays, think about cooking ahead and freezing dishes while you still have the energy to do it.

Money: In our grief, we sometimes go overboard at this time of the year, thinking that spending inordinate amounts of cash on others will assuage our sorrow and add to the happiness of others. That might sound like a plan, but happiness cannot be bought, and those bills will show up right on schedule long after the wrapping paper has been discarded. Think about drawing up a list of those who bring a smile to your lips and a light to your eyes. Do you realize what a wonderful gift might be? Sit down and handwrite a personal letter to each one on your list and tell them just why they are so important to you and what it has meant to have them in your life–especially at this time of year. You can do this even for the little one, whose parents will save it for them to read when they can appreciate it. Such a letter can always be accompanied by a small remembrance, particularly for the children. Consider giving a donation to your favorite charity in honor of your friends and loved ones. They won’t have a box to open, but they will know that someone’s life is a little bit better that it was done in their name.

Tradition: Think about your religious or cultural traditions. Do they bring you structure, meaning, comfort and stability? If you can say yes to any or all of those questions, it’s probably a good idea to stick with what you know. All else may be in chaos around you, but if the same decorations go up, the same food is served off those special, once-a -year plates, and certain religious ceremonies are observed, you just might find an oasis in the emotional sea that has been wracked by storm and tempest. But perhaps you have always done all the cooking and inviting. As one friend of mine put it when her adult daughter asked what she would be making for the holiday dinner this year (her second since the death of her husband) she never hesitated. “Reservations,” she replied.

New circumstances can call for new strategies. Go to a restaurant, travel to a new place, let folks know that you would be delighted to share their holiday with them and you’ll bring your famous pie as an offering for dessert. Volunteer at a hospital or nursing home on that difficult day. The bottom line is don’t be afraid to try new things, people and places if it works for you. Stay with what you know or reach out into uncharted territory. Whatever you decide to do, ask yourself if it meets your needs.

Needs vs. Wants: This area of reflection seems to be more emotional for many of us at this time of year. We may want all kinds of things for our loved ones and ourselves: the perfect meals, decorations, enough time together, no sadness — the list is long. But what is it that we really need? Arrangements may not be perfect this year, but we’re together. The gifts may not be as lavish, the meal might be takeout, but love is still expressed. Our sadness and sense of loss may be overpowering, but we will take a moment to be grateful for those still in our lives, for possibilities yet to come and for the chance to make a difference in ways large and small, known and unknown. So many of us feel that we have failed if our efforts don’t rival the stuff of dreams or magazine covers. There is enough stress in our lives without such unrealistic pressure. Most of it self-generated anyway.

Obligation vs. Desire: This is usually the discussion that produces the most angst. It’s not that we don’t know what we want or what we need. It’s the sense that we have to do things in a certain way or see certain people because it is expected of us. Let’s be clear. When children are involved, every effort should be made to see that their holidays are as meaningful as possible. There is nothing worse for a child than to get the message that because the adults in the house are suffering, we are all going to suffer. That’s not grieving together, that’s selfish. But if you don’t have the energy to pull it off, what do you do?

Remember all of those nice people at the funeral who told you to call on them if “there is ever anything I can do?” Now is the time to call in your markers. When my mother died suddenly at the age of 42 and left behind a shattered husband and seven children ages five to sixteen, Dad took those words quite literally. Thanksgiving was six weeks after the funeral, and he called the neighbor next door and reminded her how kind she had been to offer. “We’ll be eight for dinner,” he said, “what time would you like us to be there?”

I have always had a vision of that dear woman picking herself up off the floor and croaking out, “How wonderful” into the phone. In the end, she made it so very lovely and while it wasn’t easy for any of us, it was a sign to seven kids that life continues and that there are people out there who do care. My father knew that he couldn’t do it, but that somehow it had to be done. So, he pulled himself together and asked for help. What an example to us. After that day, we knew that while our lives were dramatically and sadly different, they were not over. We could do this.

And we did.

But what about those other social obligations that are so time consuming and emotionally exhausting for bereaved people? Ask yourself this question. “If I say no to so and so (thank you, but I won’t be cooking, traveling, buying expensive gifts this year), what’s the worst thing that can happen?” The worst has already happened, the rug has been pulled out from under you, but you are still standing, People who love you will immediately understand. Others will adjust. Some will never be happy about it, and they will have to learn to live with disappointment. The choice is yours. Exercise it or not but do is what’s right for you and your family.

Support

Bereavement Group:

illustration of the forget-me-not flowers over white background

The first Wednesday of each month

Hosted by Kiersten Kunick and Adella Ivison

200 Westfall Road, Rochester 14620

From 7:00pm-8:30pm

No reservations required


ROC City Sicklers:


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 go to www.boost4kids.com or contact Linda Bolan at 585-317-7269.

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.

Long-term Survivor Support Group:

Adella Ivison will host a Long-term Survivorship Support Group for caregivers at the CURE office once per month.

This meeting will be held from 6:30pm – 8:00pm on the 4th Wednesday of every month.

Join us and connect with others about late effects and more.

Feel free to contact Adella at adella.ivison@curekidscancer.com

Facebook Live:

Kiersten Kunick and Adella Ivison, Parent Advocates, go live on Facebook.

They 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 kiersten.kunick@curekidscancder.com or Adella adella.ivison@curekidscancer.com and share!

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 of rest and repose, all comepletely free of charge.  At the Home medically fragile childere can experience a different kind of healing, one of the mind and spirit.  Its 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.