Thoughts from a CURE Parent…

Days Like Today-

These are the days no one warns you about. Yes, you get into a new normal with medically needy children, and you learn to balance the endless days at the hospital, the middle of the night ER trips, and the normal life doctors visits. This becomes your new normal. And you become ok, really ok, with this new normal. It takes time, but this is your normal now, and it’s good. What people don’t warn you about are the EXTRA life events that inevitably happen. The events that, for a normal person, causes stress. Holidays, anniversaries, weddings etc. Days that are supposed to be joyful… But instead, a stark reminder that your “new normal” of life isn’t normal at all. These are the days where your heart is in two places, because usually your child can’t attend such gatherings. A day where your whole family might be in pictures, minus your child. A day where people you rarely see will bombard you with questions about your life that seem sincere, but they don’t realize you’ve been asked all these questions 100 times all day long. These are the days that are the hardest!

To the parents or caregivers reading this, I see you. I see you trying to be happy, and possibly avoiding people. I see you struggling through your emotions and “trying” to have fun. Most importantly, I feel for you, and you’re not alone. It’s ok, EMBRACE your new normal! These harder days will pass.

To the family and friends reading this, remember our feelings might be different than yours. It’s a happy day, yes, and if we look sad, don’t take it personally. Also if the day is not about us, don’t make it about us. We don’t want to be the center of attention, it’s not necessary. Please don’t ask us how we are doing or what the current medical update might be. Enjoy the fact that we showed up, because it was hard for us, and help us enjoy the day as best we can.

A note from Adella

When I started as Parent Advocate two years ago, I distinctly remember asking Kiersten, who was training me at the time, “So, let me get this right, I just have to talk to people and support them?”  I remember thinking, “how easy”.  Little did I know, it’s not at all easy.

Nine years ago and a million memories have passed since our daughter, Kaytee, battled Leukemia.  Every day was a struggle.  Every single day!  An abnormal norm became our routine and we found ourselves part of a new family.  A family made of nurses, doctors and healthcare workers, as well as fellow fighters and caregivers.  You know when you are in the presence of those who have walked the road you now find yourself on, because a type of soft kindness comes over their eyes and their entire posture changes.  You become a listener and postulate an air of understanding, because you do.  So, I found that when I spoke with families that had just been diagnosed, or that have been on the front lines for years, these characteristics became a part of who I became.

Over the past two years, I’ve met many new families.  I’ve laughed with some and cried with others.  I’ve seen some win the fight and a few take their last breaths.  For those of you that know me, you know that each experience has had a profound effect on me, personally.  Getting to know you, your child and your entire family, has been the biggest honor in my life.  I want everyone to know that I will never forget any one of you.  You have helped me heal from my own personal journey with my daughter and the difficulties I experienced with that.  You’ve allowed me to share some of the most difficult times of your lives and I hope that I was able to help with a caring and understanding ear.

I would like to leave with a quote I recently found.

Thank you everyone.  Thank you so very much…

Checking in with Adella…

Pumpkin Pajama Party

We, the Cancer Family Warriors, who not only deal with school, work, family and hospital stays, also would do anything to make sure that our kiddos still have enjoyable childhood memories of seasonal activities.  That can be extremely challenging when your child isn’t allowed to be in large groups or participate in outdoor activities. As I was doing some research, I came about this article and wanted to share this amazing idea with our CURE families.

How about invite kids (and their families) to come dressed in their pajamas, and enjoy a bunch of pumpkin-related activities. Here are some ideas:

Pumpkin Pie Tasting Contest: This is a great way to get the adults involved in the party. Select three judges, have them taste all the pies, and declare a winner. Serve the rest of the pies to the kids for a snack. You could even make mini pumpkin pies in muffin tins so each kid can have their own pumpkin pie.

Pumpkin-Themed Coloring Pages: Set up a table or two with coloring pages. It’s a great activity for early arrivers and makes a good alternative activity if a kid needs a break or doesn’t want to participate in a more boisterous game.

Pass the Pumpkin: This game is played like hot potato—but with a pumpkin.

Pumpkin-Themed Books: If you’re running your party like an open house or festival-type event, set up a cozy reading corner for parents to read to their kids. Stock it with lots of pumpkin-themed books (The Pumpkin Parable, Duck and Goose Find a Pumpkin, Pumpkin Town, etc.) and have orange bean bags for them to sit on.

Pumpkin Vine Mayhem: String several pieces of green yarn through a room, over furniture, under chairs, under a book, etc. Kids start at one end of the room and follow their vine (don’t let go!) until they reach the end (best for a room with two doors). Need to make it tougher? Blindfolds!

Bobbing for Pumpkins: Use those little gourd pumpkins and get the camera ready!

Guess the Pumpkin’s Weight: Weigh a few different-sized pumpkins and have kids try to guess the measurements. Closest guess takes the pumpkin home. You could also have kids guess candy corn in a jar.

Hide-and-Seek Pumpkins: You can hide pumpkins ahead of time. Release the kids and watch the chaos ensue. Whoever finds the pumpkin first gets to hide it next. You could play this game with three or four small pumpkins (or those pumpkin-looking gourds) if you have a larger group.

Pin the Smile on the Pumpkin: This game never seems to get old. Draw a giant pumpkin on a piece of poster board and let the kids make him the happiest pumpkin in town.

By Lindsey Whitney



If someone had told me six months ago when I accepted the Program Coordinator position here at CURE, just how much it would change my outlook on life in such a short period of time, I probably wouldn’t have believed them. Now, six months later, as I sit and reflect on my time so far with CURE, I can say wholeheartedly how wonderfully this organization has impacted my life. I often like to use the phrasing “I didn’t find CURE, CURE found me.”

I entered this position during the holiday season, so right off the bat, there was a lot to be done. Without hesitation, Holly and Sam were both extremely helpful with getting me situated and helping me learn the ropes in the office (and still are). From day one, I had promised myself that one of my goals when accepting this position was to get to know every family the best I could so that I could gain an authentic relationship with each one. There are still many families I have yet to get to know (I look forward in doing so). However, the ones I have met along the way so far, have genuinely sparked my soul and have given me a very different view on life, one that I really appreciate. Despite being thrown life’s hardest curve balls, these children and their families have taught me a new definition of strength, love and a new realization of support.

At the beginning of last month, we held our Brick Laying Ceremony. I was moved beyond measure by the families that were in attendance and their strength. It was my first interaction with some of our bereaved families and I wanted the ceremony to be perfect for them while honoring a child they have lost. There were tears, there were laughs, there were hugs, and there were stories, lots of stories. Hearing the stories told about these precious children who had passed, moved me deeply. To hear their memory and characteristics live on through the stories their parents and siblings told, with so much love and pride behind them, was something I will never forget.

In late May, we held our Volunteer Appreciation Dinner, which I was very excited about because we were able to honor some really wonderful people! I tell my loved ones all the time how absolutely amazed I am by the volunteer base that CURE has, it really is a second family. Everyone wants to help, to support, and to voluntarily give their time towards something that is close to their heart and if you ask me, those are truly honorable characteristics to encompass.  Our CURE volunteers have reminded me that there are still genuinely good people left in this world, and we are extremely lucky to have them!

June 3rd was our annual Survivors Day Picnic, and my first time being in charge of it. I am a huge perfectionist and without a doubt, my own biggest critic, so the pressure was definitely on in my mind. I wanted it to be perfect for these kids and their families because well, they mean the world to me and this day is all about celebrating their strength. The weather leading up to Survivors Day looked more than promising, 75 and sunny, I was ecstatic because the last few years it had rained. Silly me for trusting any forecast because we all know that Rochester weather is a roll of the die on any given day. So when it started down pouring around 12:30, my heart sank. Around 1:15, I realized the shelter was little by little becoming packed, the weather wasn’t keeping our CURE families from having a good time, and even though it was pouring, that brightened my day better than any ray of sunshine could have. I saw so many smiles on children’s faces, they were laughing and playing and just simply happy, and that is all I wanted for them. Parents were happy, their family members were happy, everyone looked happy. I look up to each and every one of our CURE kids because honestly, their strength and love for life is so admirable. These kids are absolutely phenomenal human beings and they have already taught me more than they will ever know. There were a few things on my end that I learned from so that I can do better for next year, but I imagine that to be common in anyone’s first time running an event. All in all, it was a great day. Again, our volunteers blew me away with their help and commitment the entire event. Each vendor present at the event was wonderful and so great with the kids. We had a handful of CURE board members in attendance that were also a huge help. Lastly, all of the wonderful women who make up the CURE staff were there to help me with whatever I needed, and I couldn’t have done it without them! It is very empowering to work along side such a great team of intelligent and successful women. All of these factors combined created one successful puzzle and I couldn’t have done it without each and every piece, so I thank all of you from the bottom of my heart!

I genuinely love the Program Coordinator position because it gives me the opportunity to wear different hats, and is constantly challenging me to learn more each day and grow so that I can provide the best social support to all of our CURE families. With that being said, here’s to the next six months!

Last but not least, I want to say to each CURE family (and the CURE staff who have become my second family): you have all become such a strong and important impact on my life, and I hope in time, I can do the exact same for all of you!

– Andrea

Hailey & Lenny: Changing Lives through Double Robotics

Hailey & Lenny: Changing Lives through Double Robotics
Written By: Jen Bertrand & The Coniber Family
Bookbag? Check! Homework? Check! Robot? Um…?
Taking one look into a 5th grade classroom at Wolcott Street School (WSS) you would expect students working, lesson materials, Chromebooks, etc. but what you may not notice right away is the use of Double Robotics. Our very own Le Roy Knight, Hailey Coniber, daughter of Jason and Missy Coniber, has been using a Double Robotics unit, affectionately nicknamed Lenny, to attend school from home for the last three years. It was our WSS principal, Carol Messura, who first heard of Double Robotics and reached out to our local EduTech seeking more information; Director of EduTech, Kelli Eckdahl, has led the way with using Double Robotics in classrooms for students who can not traditionally attend school. Eckdahl shared that health, medical, & anxiety are common reasons students use Double Robotics and that use of the unit, “allows them to maintain their friendships and their social connection.” Currently, there are seven Double Robotics units in use through the Genesee Valley/Wayne-Finger Lakes region,” says Eckdahl. We are so fortunate to utilize this device within our district; Lenny has become the answer for Hailey, allowing her to form friendships with peers, connect with teachers and continue her education despite medical challenges.
Hailey’s Point of View with Double Robotics
Introducing the use of Double Robotics into the classroom the last three years could not have been any easier! Through the use of clear expectations, trial-and-error, loads of patience and of course fun, our students and staff at WSS have taken to Lenny as just another student in the room. “The kids just don’t get hung up about it, they still see the individual not the technology,” mentioned Eckdahl in working with students. Double Robotics has allowed Hailey to be seen. To be heard. To be a friend amongst her peers. To learn, struggle and succeed right alongside other students. To have a full education experience despite struggling medically. “I find instructing a student using Double Robotics technology very rewarding. Seeing Hailey’s smiling face each morning, hearing the love of learning in her voice, and getting to know her bubbly personality makes her an integral part of our classroom,” remarked her classroom teacher, Dorreen Caldwell.  So how does Hailey like going to school using a robot? Take a look for yourself to what she thinks.
I really like working with Lenny. He lets me see my friends and be in a real classroom. Sometimes
it is hard being the kid with cancer, but Lenny let’s me feel like a normal student. I can do centers, switch classes, raise up if I have a question, and even go to specials. When I don’t feel well I can
log off without having to worry. My teachers and friends like to dress Lenny for holidays or special occasions in school. I think it makes the robot feel more like another person. It is funny to go down
the hall and have the other grades point us out! – Hailey
Throughout 3rd, 4th and 5th grades, Hailey’s peers have been a constant support in her life while using Lenny. BlueTooth causing a problem? Audio or visual glitching? Is Lenny doing his famous “dance” because of WiFi issues? You can bet a student is at the ready to troubleshoot. When asking some of her friends about having Lenny in the classroom, one of her peers responded, “I just feel special having Lenny in our class, I feel like the robot is helping other people.” Another student commented, “It’s really cool to know it’s like she’s with us even though she can’t be, because she’s interacting with students and teachers.” Hailey’s classmates enjoy having Lenny as an integral member of their class and see the impact this technology is having for their friend.
Parent Perspective on Double Robotics
“In 2009, Hailey was diagnosed with Stage 4 Adrenal Cortical Carcinoma.  It was soon discovered that cancer had metastasized to her lungs. To date, she has undergone more than 10 lung resection surgeries. She is currently being treated at Golisano Children’s Hospital in Rochester, New York, and is in a study group at St. Jude’s Children’s Hospital in Memphis, Tennessee.
Due to weekly clinic appointments and approximately 27 daily doses of medication required to supplement her adrenal insufficiencies, it has become necessary for Hailey to attend school from home. From 2013-2014, Hailey received tutoring from our school district focusing on math and reading for 6 hours a week. She soon started falling behind, as it was hard to cover a whole week’s learning in a few hours. As parents, we were also concerned about the social skills lacking from not being around classmates. Our special education team soon had a suggestion, know as Double Robotics. We were skeptical at first…we were unsure how easy it would be to operate, and of the reaction by other children. Would we be setting Hailey up to bullying?
Having Lenny in the classroom has been a tremendous advantage for Hailey. Not only does she follow the daily curriculum, but it allows for her to work directly with her peers. She very quickly adapted to the maneuvering of the robot and functions for operation from home or inpatient at the hospital. The class acts as if Hailey herself is in the room, and have been extremely helpful when travelling down the hall. Lenny allows for participation in specials such as music and art, the ability to take breaks as needed, and for medications to be administered without interruptions to the class multiple times a day.
We are fortunate to have a wonderfully supportive school district in Le Roy. It truly has taken the community of teachers, tech support, and staff to make Lenny the success he is today. Just like any child, Lenny has his off days and grumpy moments. At times we have had to work independently or use Google Hangouts until he is back up and running, but these interruptions are minimal compared to the other daily challenges a child undergoing treatment often faces. For these reasons we have decided to reach out to others by sharing not only our journey but also how a classroom robot can have such a positive impact during a difficult time.” -Jason & Missy
Hailey’s sister, McKenna, has also been a key player in Hailey’s experience with Double Robotics. The first year of using Lenny, McKenna was tremendously helpful in delivering assignments, homework and all sorts of lesson materials back and forth between school and home for her sister. Three years later we have the help of our wonderful district courier, Randy Boyd to transport materials and McKenna is now a student at our Jr./Sr. High School. In supporting her sister McKenna reflected that,
I think that a robot in the classroom is beneficial to the person using it and the other students
in the classroom. For the student it helps them to be able to sit in a classroom with other people to learn.
They can learn alongside their classmates and ask questions when they need to. The classmates also
benefit since they are able to communicate with the person who is using the robot. I feel like Hailey has
made amazing progress ever since she started using the robot. -McKenna
The Future with Lenny
The Coniber family’s experience with Lenny the last three years has been revolutionary. Hailey is receiving a full education, better yet she is managing friendships and forming connections independently. Hailey will continue to require the use of this technology until medical scans show no evidence of disease for a minimum of five years. Our WSS team is excited to support Hailey in her upcoming transition to 6th grade and then to our Jr./Sr. High School building when she enters 7th grade. Hailey’s math and science teacher, Deb O’Geen, said it best when she stated, “I hope other children, like Miss Hailey Coniber, will be able to benefit from Double Robotics. Nothing in the world beats teaching and watching all children receive and earn an education, including the students who are homebound and are unable to attend school. Double Robotics is the key to their future.” If you would like more information about Double Robotics please review their site or contact your school district to connect with your local EduTech/BOCES. Our hope is that this glimpse into Hailey’s journey with Double Robotics will create numerous positive ripples, impacting and changing student lives for the better.
*Jen Bertrand, Instructional Tech Coach for Le Roy CSD has worked with the Coniber family as well as WSS staff and students supporting the use of Double Robotics; the aim of this article was to capture the voices of those most closely tied to the use of Lenny in a collaborative piece in order open the door of possibility for more students and families. Questions or further information about Double Robotics and the use of Lenny can be directed to Jen’s email at or Twitter @jbtechcoach.

Checking in with Kiersten…

February 4th was World Childhood Cancer Awareness Day. June is National Cancer Survivor Day. September is Childhood Cancer Awareness month. Funny thing is for me, every day is Childhood Cancer Awareness Day. Ever since June 9, 2001 I have been aware. It was a day that my whole world changed. I sometimes see posts on Facebook about someone wanting their friends to copy and repost about Cancer and someone fighting. I confess. I never repost. Those posts bug me, in fact. I don’t want anyone to ever feel guilty that they don’t post something about cancer. I also don’t want people to feel sorry for me because my son had cancer. Quite the opposite, in fact.

I would rather people be awed by my son, by his strength, by his quiet determination. By the way he has reacted to being a “cancer kid”. While I wish sometimes that it never happened to him, I do realize that because it did, I get to do the job I do and get to help people as a result. I think the first time the question of “Why him?”, was answered for me was when Austin was speaking in front of a group of school children about his experience. He was asked to speak because one of their classmates had been diagnosed with leukemia, just like Austin had been. Austin answered questions from the kids and I saw how he made a difference. That was the answer. Why him? Because he was there to share information and his experience so that more people could understand. And he continues to spread his knowledge to his teammates, to his peers and to raise awareness.

So what would I say in a Facebook post instead? I would say that every day 47 children are diagnosed with cancer. I would say that cancer does not discriminate. It does not care your race or religion, it is an equal opportunity offender and it has to be stopped. I would say there is not enough funding for childhood cancer. Only 4% of the $4.9 Billion budget of funding from the National Cancer Institute goes to fund Childhood Cancer research. 4%. Children have a life expectancy of a person in the United States is 78.74 years. That means a child like Austin who is diagnosed at the age of 4 has to deal with late effects, and a higher likelihood of a secondary cancer for 74 years. That’s a long time to have to deal with that. I would say, don’t feel sorry for someone, do something instead in their name. Get the awareness out, talk to your representatives about funding for childhood cancer research. It will do a lot more good than a simple Facebook post.


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.

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.