Checking in with Holly

It seems as though in the blink of an eye, the year is more than half over.
How does this happen so quickly, this change? In thinking about it, though, it makes sense.

“Life is what happens when you’re busy making plans.”
Here at CURE, we are constantly making plans. Our latest endeavor is our mission to Paint the town Gold and Red during September to honor the warriors – the children who bravely face a childhood cancer or sickle cell diagnosis. Childhood cancer and sickle cell disease impact the entire family. So how can we help? Raise Awareness. People don’t know what they don’t know. With sickle cell disease being the most common genetic disorder, you would think better coping mechanisms and medications would have been developed. With 1 of every 330 children being diagnosed with cancer before their 20th birthday, why haven’t we developed a complete cure – one that won’t have long-term physical effects on the children being treated? I would like to work together to raise awareness. Let’s advocate for children and their families. The first step to doing this is to shine a light on these diseases. Go Red or Gold for the month of September. There are SO MANY ways to do this. More importantly, share what you are doing with our community. Please send photos or details to CURE and we will share on our social media and with our supporters. We plan on creating a special blog post on our website for mid-October to highlight everything our community did during September to raise awareness. We heard you last year regarding the childhood cancer signs. They are double sided this year. You can reserve your sickle cell or childhood cancer sign online (https://curecca.ejoinme.org/cureawareness) or come into the office to purchase your sign during business hours. Talk with your friends, family, co-workers, neighbors. Tell them why it is important to you that we increase awareness. You’d be surprised how easily you can influence those close to you. I’m asking that you DO something. Even just one small thing. Come into the office and say hello to our staff. We will have both gold and red ribbons to hand out to our visitors, which we will encourage them to wear throughout the month. Please help us raise awareness. With increased awareness, we can establish new community partners and hopefully offer more services and better services to our families.

We continue to make plans to help families throughout their journeys. I am truly looking forward to our fourth Parents’ Night Out in a couple of days. We are encouraging our parents to take time for themselves – reconnect, laugh, enjoy the company of others. We know it is a temporary distraction from the every day worries you are bombarded with, but hopefully you find value in escaping. Recharge your batteries. We’ve said it before (and will likely say it many more times), but you cannot take care of your family if you are not caring for yourself. As people, we can only handle so much. So please, take the time for yourself. If not at one of our Parents’ Night Out events, on your own. Take a walk and enjoy the summer breeze and then the autumn leaves (hopefully not for SEVERAL more weeks, though). Have an idea for a Parents’ Night Out activity? Let Sam know! We want to offer fun, different, useful things to all of you.

“Life is what happens when you’re busy making plans.
While planning the activities and awareness campaign and Brunch, life happened. This summer, we have been consented to help nearly 20 new families. We are here. We are here for newly diagnosed families. We are here for families on treatment. We are here for families of survivors. We are here for bereaved families. We are here. So when life happens, remember CURE and that we can help you. If we are not currently providing the help you need, tell us. We will try to help. Like I said above: People don’t know what they don’t know.

Most recently, we have been contacted to help a few families with beds. You read that right. The diagnosed child did not have a bed. On two separate occasions. CURE helped. Sadly, this past fiscal year we partnered with CompassionNet to provide Phillip’s Gift Palliative Care Services to five families. Five. Every new family is given a gift card to help cover gas costs – as transportation to and from appointments adds up. We recently helped a family with services in their home. In all of these situations, life happened and CURE did what we could to help.

So while we are all busy making plans, it is my hope that you all know we are here for you when life happens.
Once you are a CURE family, you will always be a CURE family.
Wishing you all a very wonderful last few weeks of summer.

Girl Scout Gold Award

My name is Kelli Kunick and I am a senior at Victor Central Schools and a Girl Scout
of Western New York. I have been working on the highest award for Girl Scouts;
the Gold Award. For my Gold Award project, I needed to come up with a project
that was unique, make it sustainable, include a leadership component, and
to meet a need that is present. And once completed, to share the project with
the global community.

For my project, I created different and intricate coloring pages to give to the
cancer treatment center at Golisano Children’s Hospital. At the treatment center,
there were not many activities for the teenage patients or their siblings to do
while they wait for the chemotherapy treatments. By creating these pages,
I am providing the hospital with an activity for this age group, as it will be easier
for them to hand out single pages, rather than giving out full coloring books
that can be expensive to purchase and cannot be replicated because of copyright laws.

To make my project sustainable, I am providing the hospital with a flash drive
containing all of my drawings, allowing them to be able to reproduce as may
as they need or desire. In addition to the pages I designed, I held a coloring page
contest, where some of the drawings from people in my community will be
included in the drawings that are given to the hospital. All of the pages
have copyright consent for duplication. In addition to the donation of the
coloring pages, I led my Girl Scout  troop in an activity where we created
bags with crayons and coloring pages from coloring books to give to the
Emergency Room for them to disseminate to families with children in the ER.

I wanted to create a project that involved cancer patients and their siblings
because my brother is a cancer survivor and there was not much to do in the
hospital while he was receiving chemotherapy treatments. I heard that the
hospital was in need of activities for teens and thought that creating these
coloring pages for them was a great way to help my community and complete
my Gold Award. I love drawing and I wanted to be able to share my drawings with
those in need.

I want to thank CURE Childhood Cancer Association for supporting me throughout
my project, for allowing me to collect cans and bottles at their events to turn in to
purchase supplies for my project and allowing me to post this blog. I am very
grateful for the support and am glad I am able to help my community.

Below is one of my drawings that can be downloaded and colored! I hope you enjoy!

 

My first three months at CURE

I cannot believe it has already been three full months since I began working at CURE!  My first three months have really flown by and I have been enjoying every minute here! Everyone has been so welcoming and supportive and have made this transition so easy!

I have gotten to know some of our families very well and truly appreciate the opportunity to meet and know each family. Every family I have met so far has welcomed me into my new position and made it such a pleasure to work with! I have to say, the best part of my job is definitely when I get to do events with our kids and families, I love getting to know everyone! I am looking forward to meeting the families I haven’t had the opportunity to meet yet.

My first large event to plan was the Survivor’s Day Picnic. Soon after I started, I got right to work planning the picnic; reading all the notes from previous years, reaching out to all vendors, sponsors and volunteers, and of course deciding on the color for this year’s Survivor shirt!  Everyone was so supportive – answering any questions I had, offering words of support and ensuring me that everything will go smoothly that day; and they were right! I am so lucky that we have such loyal and supportive vendors and volunteers who come year after year to make sure it is a perfect day for our families. Their dedication to CURE really made planning the event go so smoothly. And I even got lucky and the rain held off for the whole picnic!! I had so much fun at the picnic and I hope everyone else did too! I am really looking forward to the opportunity to plan more fun days like this for our families. Make sure you check our Facebook page and emails to see all the other fun events we have planned for the summer!

I guess it’s true what they say, time flies when you’re having fun! I cannot wait to see what the future holds for me at CURE!

Fun Summer Guide!

We had this great list forwarded to us. It was generated by a Social Worker in the Town of Greece.
Thanks so much for your hard work in putting this together and for sharing it!!
Click the link to see a great list of things to do this summer!

summer fun 2017.pd

Checking in with Kiersten…

 

 

Hope

Noun

  1. 1. A feeling of expectation and desire for a certain thing to happen.
  2. 2. A feeling of trust.

Synonyms: aspiration, desire, wish, expectation

Verb

  1. 1. Wanting something to be the case

Synonyms: expect, anticipate

Every spring there is a feeling of hope. After a long winter the sounds of birds and spring peepers, the sights of bulbs starting to peek through, the budding of trees. It all gives us signs of things to come; the longer days, the tentative warmth in the air. We see the signs everywhere. We look for those fleeting signs of things to come and soon enough the flowers are in full bloom and the leaves on the trees are there in all their glory. It sneaks up on us and it makes us wait all at the same time.

Hope is something we all need in dark times. Hope that we will get through. Receiving a diagnosis of Cancer is never an easy experience. When my son was diagnosed in June of 2001, I knew even before the doctor confirmed my worst fears. My husband thought I was crazy when after seeing my son’s bruises that I felt he had leukemia. I’m not sure why or how I knew but I did. The blood test just confirmed what in my gut I already knew. Then that meeting with the doctors…the one where they told us the kind of cancer…ALL or Acute Lymphoblastic Leukemia. They told us if our son had to get a cancer it was the best one to have. Even in that devastating discussion, there was hope. The statistics at the time, 85% cure rate-Hope. It’s what I had to have to survive the long surgeries for port placement, for bone marrow biopsies, for lumbar punctures, for chemotherapy treatments. Things that made my son so sick, I had to hope that they would help him survive.

It was a dark period in our lives. We had just left our home in New Hampshire where we had friends and a support system. We were living with my husband’s parents in Buffalo while we were building our home in the Rochester area. We felt alone. We leaned on our family and of the comfort of strangers, families we met in the hospital, the social worker. The outpouring of love and support we received was amazing. We received gifts for the children from a church in Pennsylvania where my in-laws hailed from, gifts and stickers and activity books from our friends back in New Hampshire; a special blanket for the cold hospital, a stuffed bear and a soft stuffed horse to hug from friends. All of these things gave us hope. Hope that we were not alone in our fight. Hope that we would have support regardless of our move. The kindness of family, friends and strangers alike were what helped us get through those dark days.

I think that is why the work we do at CURE speaks to me. It is about giving families the hope they need to get through those dark days that parents inevitably feel when their child is diagnosed. I see it in a family’s eyes when I first introduce myself as a parent of a survivor. They know I get it. They know I have been there and they see that our family has made it to what they ultimately hope for; for their child to be cured and get to live the life that they dreamed for them.  I explain that my son is surviving and thriving and I see it in their eyes-Hope.

While I still wish my son had never had to experience what he did, I look at what our family went through and know that we are where we need to be. Helping others who are walking a similar path and I am thankful that an organization exists where we can do just that and hopefully offer them what I needed-Hope..

 

Educational Help is Here!

I remember when I first started working as the Educational Liaison for the Pediatric Hematology/Oncology Division at Strong. After a long career as a special education teacher and school administrator, I thought it would be fairly easy to advocate for children with cancer, brain tumors and sickle cell disease. Of course the schools would want to support their students going through a difficult diagnosis and treatment. I would just have to guide them as to what to expect and what they would need. I found that for a variety of reasons, mostly having to do with lack of knowledge by schools as to their role, that many children had a difficult time accessing needed supports. I remember seeing many very motivated, hard working students struggling in school because of an underlying learning problem caused by their treatment but not identified by the school districts and helping them to reach their fullest potential with needed supports. More than 20 years later, I understand that for families, school may be the last thing they think of when their child is faced with a cancer or blood disorder diagnosis. But as the child goes through treatment or even after treatment has ended, there may be many school issues associated with their diagnosis that are hard to manage and some families may need an advocate to help them support their child. You may be one of those families. For instance, is your child falling behind because of absences due to their illness? Is the school making appropriate accommodations for their physical needs? Are they taking a long time to finish homework? Have their grades dropped? Have you been told that they are at risk for developing learning problems from their treatment? If so, I may be able to help! If you are worried about your child’s schooling as a result of their disease, contact Kiersten Kunick, CURE’s Parent Advocate at 585-697-4470 or kiersten.kunick@curekidscancer.com and she can make a referral to me for a free consultation. I would be happy to discuss your concerns and develop a plan to meet your needs. CURE offers my services to you at no charge. It may just take a phone call or perhaps it would be a meeting with school. We can work together to help you with school issues affecting your child.


School Blog by Kathryn Wissler, Educational Consultant for CURE

The United Way Campaign

As you may know, the spring campaign for the United Way is rapidly approaching. We wanted to give you some info about CURE that can help with that burning question: “Why designate to CURE?”

Last year alone, our Parent Advocates:

  • made nearly 2,000 visits to families in the hospital – both in clinic and inpatient
  • distributed over 6,500 individual parking passes
  • assisted families who would be in the hospital for a longer period of time with 35 monthly parking passes
  • fed our families in the hospital with over 400 meal vouchers

For the first time ever, CURE provided holiday meals to families in the hospital on Thanksgiving and Christmas Day.

Over 300 family members attended our annual Survivor’s Day Picnic in June!

We coordinated holiday wish lists for 38 families, sponsored 17 of our own families and provided food baskets WITH $50 grocery store gift cards to over 20 families.

CURE helped families through some of the darkest days of their lives, providing nearly $5,000 in funeral assistance.

We are introducing new programs – like Parents’ Night Out for our CURE Parents to connect and have fun, and partnerships with other organizations…

…and we want to do MORE!! With your help, we can.

When your United Way representative comes to your workplace, please think about CURE. Please think about our children and their families. Make a difference.

Want to make a BIGGER impact? We’ve created a FUN flyer you can post at your desk, letting your coworkers know you designated to CURE. The challenge is out there – will you post this at your desk?!

UW Donation

Click this link ^ (We promise it’s a pdf)

Holiday Heroes

Be sure to check out this year’s Holiday Heroes ads that appeared in The Messenger Post today!

cure-childhood-cancer-final-2016

Thank you to our friends and supporters who thought of CURE and our families this holiday season.

Thankfulness is a work of heart…

2

Submitted by Erin

For many of us, our mood is influenced by our surroundings. Stores do a wonderful job getting shoppers ‘in the mood’ for whatever season they want to promote. For me, it feels like we went right from costumes and candy corn to holiday and Christmas decorations without any mention of Thanksgiving.

Thanksgiving is a time when people tend to reflect on the experiences that have given them quality moments in their life. As a CURE family, we are thankful for everyone that is in our life because of our experience with cancer through our daughter.  When your child is diagnosed with cancer, your ‘family’ becomes larger than you even imagined; you have strangers willing to give selflessly to you in an effort to help in any way they can; and you have an entire community of new people that you come to know and would probably never meet if the circumstances were different.

So, how would you begin to repay everyone that came to your assistance and stood by your side during the hospital stays and treatments and whatever was to follow? I think the best we can do is to continue to give thanks for those people and when others are in need as we once were, try to pay it forward.

CURE Childhood Cancer Association has been giving thanks all year for the multitude of friends who have been a support to CURE over the last 40 years. Let’s be encouraged to embrace a season of thankfulness and think about the people that have made a difference in our lives.

Wishing you all a very Happy Thanksgiving!