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..

 

April 2017

March Newletter

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

February Newsletter

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)

January Newsletter

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.

December Newsletter

Thankfulness is a work of heart…

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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!