January 2018 Newsletter

Holiday Heroes 2017

A HUGE thank you to everyone who contributed to our Holiday Heroes campaign this year. Your contributions made a difference and it is truly our honor to recognize the special people in your life.

Click here to check out this year’s edition.
2017 Holiday Heroes

Checking in with Adella…

Let’s all join in!  “Santa Clause is coming to town!”

What a joyous time of year.  The ground blankets itself in a sea of white and a crisp wind kisses your cheeks.  This can be the happiest time of the year.  But what if your child is inpatient or in treatment?  When this happens, remember how important self-care is for you, as a parent and caregiver.

No “parent guilt” here.  Just some advice to help caregivers handle this hectic time of year.

20 ways to practice self-care:

  1. Have a mini declutter session.
  2. Watch your favorite movie.(Even if it is the 20th time)
  3. Take a long, relaxing bath.
  4. Burn your favorite candle.
  5. Jump on the bed.Just like you did when you were a kid.
  6. Turn off the your phone for a few hours.
  7. Meditate
  8. Have a mini pamper session.
  9. Go for a run or long walk.
  10. Write yourself a love letter.
  11. Put on some music and dance away.
  12. Treat yourself to your favorite dessert.
  13. Read a good book.
  14. Take a nap.
  15. Stretch
  16. Binge-watch your favorite TV show on Netflix.
  17. Sleep in on the weekend
  18. Cuddle with your pet.
  19. Spend some time in the sun.
  20. Call an old friend you haven’t talked to in a while.

The winter blues can hit anyone, but I say, hit back with some self-care.  So, sip that hot chocolate and eat that candy cane; I won’t tell.

December 2017 Newsletter

November Newsletter

Checking in with Adella…

It was a birthday.  Not a “mile stone” birthday like 13 or 16, but just a birthday.  I’m the kind of Mom that believes her kids can miss school on their birthday.  Birthdays are to be filled with your favorite meal, your favorite dessert, and a day filled with whatever you choose to do, be it shopping and out to lunch; which was the plan for January 13, 2010.  Unfortunately, things don’t always go as planned.

“Take her to Strong Hospital Pediatric Emergency.  They are waiting for you there.  We think she has leukemia.” The voice on the phone stated.

“But…I don’t even know how to get to the hospital…”. I pleaded back.

In that instant, all the little worries in life seemed to fade away in a haze of gray, as I loaded up my now 14 year old daughter, Kaytee, into the car for a destination that would change our entire family’s life forevermore.

Cancer…we have all heard the word before, some of us may have known people who have had cancer even, but when it becomes a reality for a child, your child, the entire word changes importance and meaning for your family. A family, who’s biggest challenge before was getting your child to eat veggies, now faces hospital stays, loss of work, and even worse!

I remember setting in a small non-descript room, while my daughter’s life hung in the hands of strangers.  It seemed that all of the control you once had as a mother to care for your child is taken away in an instant.  You are left in a complete daze.  Left to plead and pray that this all to be a mistake, a bad dream, anything other than what this woman in a white coat was telling me was my new reality.

The world shakes and shifts like a never ending rollercoaster, and all you can feel is nauseated and afraid.  Then you think of your other children.  How can you be there for them?  How can you get them to school and see their volleyball game and talk about their new girlfriend and…and…?  Then you feel like you are having a breakdown, but how can you have a breakdown when everyone is counting on you to keep it together?

I’m here to tell you that life goes on.  The minutes tick away.  Days become weeks and weeks become months and before you know it, you are finding a new normal.  The staff, who were once strangers, become like family.  In what seems like a blink of the eye, the treatment protocol is completed and you are going home.  Home, the placed you longed for and set a goal to get to.  Home, where things aren’t exactly they way they were, but it’s ok because it’s home.  Everything will be ok, at home.  For most of us that is true, but for some, reoccurances happen, or worse.  

What I’m trying to say is that we now belong to a group that no one would wish entry on their worse enemy.  A group that is based upon Pediatric Childhood Cancer.  None the less, know that you are not alone.  We all have our own stories of pain and perseverance.  The path you walk, you walk with many others.  If you get lost, we will help you find your way.

October Newsletter

September Newsletter

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.