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!

 

Catching up with Kiersten…

austin

This picture truly brings joy to my heart! I think back to when Austin was going through his cancer treatments for leukemia and he asked to play football. I wouldn’t let him until he was done with treatment. When he would get his intrathecal methotrexate (chemo into his spine) the doctor would say “Don’t allow him to do anything that requires balance.” It also sapped his energy. He would tire easily but he worked hard to keep up with his brother and his friends. He would want to play with the neighborhood boys who played backyard football and they would tell him he was no good. To be fair, backyard football is all about catching and throwing and running and he wasn’t awesome at those things. But man could he stop you. So he wanted desperately to play real football.  But I didn’t want to have to worry about where the bruises were coming from. Since leukemia is a blood cancer, bruises are an indicator and that was what lead us to his diagnosis.

Once he completed treatments though, I stood in line early in the morning to get him signed up. And we waited. Would there be enough space on the team? Thankfully yes and Austin’s football career began. A year later than his classmates, but he quickly caught up. He was given growth stunting hormones during his treatment to stop the growth of the cancer and during his treatment his growth chart was flat. But after treatment he would have terrible pains in his legs. I took him to the doctor fearing the worst and was told they were growing pains. His body was bound and determined to catch back up to where it was supposed to be all along. Today, he stands at 6’5″ and he suited up for his college football team, the Division 1 UB Bulls. While he was not recruited to play at the D1 level (there were many D3, D2 and NAIA teams who wanted him) he chose an academic scholarship from the engineering department at UB and approached the coach about walking on. They took a chance and through hard work, determination and a lot of eating, he was invited back this year. I am so incredibly proud of the man he has become, of the hard work he puts in studying aerospace and mechanical engineering and of the kind words his teammates and coaches say about him. As a cancer survivor he continues to provide hope and inspiration. At least he does with me!

November Newsletter