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

June 2017 Newsletter

May 2017

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