Stories from our Families

As told by Mommy, Ashle Burnett Tripp and Taylor Swift
Sometimes, people look for other ways to support these children that is more tangible versus research. If you are one of these people, consider supporting Candlelighters NYC. http://www.candlelightersnyc.org/

Barbara Zobian who runs this organization does a tremendous amount that directly helps the children and their families. Examples include: providing strollers, trips to the LEGO store (one of Tripp’s favorites), visiting Central Park police and becoming an honorary NYPD officer, transportation through the city, parties, blankets and pillows (I can attest to how helpful this is while sleeping in the hospital) and so, so much more. This organization provides the necessities to get through long, hard treatment days far from home. She and her organization do what your friends and family would do if you were getting treatment at home. I know I speak for many of the families expressing my gratitude for Barbara and the commitment she has to our children.

Ava – As told by mom,  Nickelle Crowleyunnamed
Ava and I met Barbara, the founder of Candlelight’s NYC, in April right before her second surgery (thoracotomy) at Sloan. We didn’t know then that Ava had relapsed. We arrived in New York and we didn’t know who to rely on for support. We were staying at the Ronald McDonald. Barbara met us and welcomed us in with open arms. She showered Ava with gifts, blankets, dolls and love. Barbara provided a support group that I needed of fellow neuroblastoma moms. Women I could identify with, who I could share diagnosis and treatment stories with, women I could cry with. Barbara has provided a safe haven, a home away from home for us. Ava will tell you, “Barbara is the most amazing person in the Universe”. She has never said that about me, her own mother. But that is how much Ava loves her, how much our family loves her, for all she does for us. I don’t know how we would really cope during treatment without her. Barbara needs funding in order to help families. Her funds pay for Uber rides so children don’t have to take the subway home from treatment. Can you imagine riding a subway with an immune suppressed child?! I can’t!! Her funds pay for pillows and blankets when families are staying by their child’s bedside at the hospital. Her funds pay for a hot meal when all you have eaten all day is the saltine crackers from the Sloan nourishment room on the pediatric cancer floor. Bottom line, Barbara’s organization helps to provide for families when basic necessities are not being met.
Barbara Zobian and Candlelighters of NYC gave us the big red unnamedstroller for Andrew Finnigan to travel to and from Sloan Pediatric wing..for treatment and care..and Stewart Zobian assembled it…in less than 24 hours, Andrew and Casey his brother who had a standing platform attached to the back of the stroller cruised in style and comfort in NYC…Barbara brought pillows , toys, pizza, sushi, magazines, Cappachinos and a red blanket Andrew still cuddles in to us all as we sat 9 1/2 hours in the waiting room..waiting for his surgery to be done, and find out Dr. lagualia got it all. Andrew doesn’t like the picture with Winnie because when he relapsed the 2 time in the spinal area..Winnie our loving dog ended up with a spinal problem that took her life at the same time…she was our consistency….Andrew qualified for the NEUROBLASTOMA VACCINE because of his 2 relapses..hang loose parents..Sloan has pockets of options..and Candlighters. Walks the path with us all..when wonder if we can even crawl..thanks so much our friends
As told by Jim Runde, James’ Dadjames runde (4) 11921613_742279759231167_7325952492818396581_n
Unfortunately, this picture of our son represents a reality every day of every month of the year, NOT just September. PLEASE do something to support these children fighting for their lives. Candlelighters NYC is a great cause that you can give to knowing that the funds you give aren’t eaten up by garbage administration fees but that these families are helped. Make a monthly pledge knowing from someone that had to ride this train–YOU WILL MAKE A DIFFERENCE!

As told by Scarlet’s father Tim Craigunnamed

We try to do fun things when Scarlet is in treatment. We had a great time in San Francisco and found fun things to do on our many trips to Portland but Blue Man Group was definitely at the top of the list. Good to see Scarlet laugh so much as she starts 3f8 tomorrow.

As Told by Morgan’s Mom –  Emily Pierceunnamed

Candlelighters NYC has been such a huge help to my family during my daughter’s last seven years of cancer treatment. She began this journey as a 5 year old who loved Disney channel and pink and purple blankets to a twelve-year-old young lady who loves to read and paint. Through it all, we have counted on Candlelighters NYC to help our daughter, Morgan keep her mind off of harsh chemo and painful antibody treatment with age-age-appropriate activities and comfort items to get her through.
Candlelighters NYC is also a huge help to our family as we learned to navigate a new city, far from home and a new hospital in order to give our daughter the best treatment possible.

Thank you for your unending support of families like mine, through Candlelighters NYC!

With Love,

Emily Pierce

 

As told by Shauna Dukes  Trucker’s Mom   Maui, Hawaii IMG_0349

Before i arrived in NYC, I had never heard of Candlelighters but had been communicating with Barbara via Facebook when she learned that we might be getting treating here. I had no expectations, but have been so blown away. I have never met anyone like Barbara Zobian more giving of their time, love, friendship, family, and connections! Candlelighters NYC are my family in New York. From the minute we got here we have been blessed with home cooked food, strollers, wine when we need, friendship connections with other amazing cancer families going through similar battles, babysitting, new toys, amazing trips to shows and venues, and unconditional love from a family that knows the city and has the biggest hearts!! My cancer fighting experience here would not be the same without them. I am forever grateful!!

Ava – As told by Mom, Nickelle Crowley unnamed

On the way back to Ronald we met up with our friend Barbara who founded Candlelighters NYC, an organization that helps families when their child is going through cancer treatment. Ava had a fun time playing dressing up at Barbara’s apartment and playing with a new friend. Barbara does an incredible job with this group. She brings families together so we can share our stories and learn from one another. She is a great play date for Ava. She helps us forget for awhile why we are even here in New unnamed (1)York…fighting cancer.

 

 

 

 

Vanessa Sabo11082491_10153221495825148_4786214619262973223_o

Tonight I met an amazing soul named Barbara Zobian. I was touched by her kindness and felt like I have known her forever. She welcomed me into her home like family and I will never forget how welcome she and her family made me feel. I look forward to spending time with her and other families like mine. She runs this amazing origination that I joined called Candlelighters NYC. Go to the page!

 

 

Maggie Russo’s first pitch against cancer – Click here for article

Julia’s Journey – Click here for article

Beckham – As told by his dad, Brian10274254_534884193288962_8029974625109967489_n

Barbara, We love the new stroller! When you sent me a message that you had this great replacement I was literally walking out the door in search of Duct tape. The medical tape I had used to repair the broken frame was beginning give out.  So grateful that we were able to be helped by the NYC Candlelighters.

Kylie Rowand – As told by her mom, Bree RowandIMG_3543

What an amazing day celebrating Kylie’s birthday and Mother’s Day! It was perfect! My prayer request last night was that she would open her eyes and SHE DID! A LOT! By far the best part of the day! We decorated Kylie’s room and it turned out so amazing too! Some very special thank you to Barbara @candlelightersnyc for making this entire day so special! From the giant Hello Kitty balloon, beautiful pictures w frame, birthday hats, Kylie pins, an amazing dinner, oh and did I mention all the things you do 24/7 for each of us cancer moms! You are truly amazing women! You are so passionate about what you do and we all love you so much!!! I can not picture our new life here in NY without you! Thank you to Icing Smiles, Inc.and Kate @cakepower for the amazing birthday cake for Kylie!! Icing Smiles, Inc. is a non profit organization that makes cakes for children who are very sick. Kate is one of their amazing volunteers who helps make cakes in NY. Today was so special for them because it was their 5000th cake!! Amazing!! Bringing so many smiles around the country!

Wow an amazing day to say the least! We have so many awesome people in our lives! We are truly so blessed!!! Thank you everyone for the birthday and Mother’s Day wishes! We love you!

Trevor – As told by mom, Sara Elizabeth Schweigertimage

We met Barbara from Candlelighters, NYC through another family from our area who had treatment at Memorial Sloan Kettering Cancer Center in NYC.  We literally met her when Trevor was having surgery.  She came to the hospital with blankets and pillows for Marc and I to sleep on while Trevor was in the Pediatric Intensive Care Unit recovering.  She brought Trevor toys to make him smile when he came out of surgery.  Barbara, her husband Stewart, and her sweet dog Uno welcomed Ava, Trevor, Marc and I into her home on many occasions and treated us like family.  Barbara is a wonderful person who does amazing things for kids and their families being treated in the NYC area.  It’s tough to be away from family for treatment.  We think of them as our NYC family.  We can’t thank them enough for their love, support, advice, gifts and the little creature comforts (like a nice glass of wine). 

Blake Jones – As told by his Grandma Shelia JonesBlake Jones

akey and all the children fighting this unimaginable battle. Life has given us extraordinary circumstances, but it has also given us extraordinary people like you to help make this journey a little easier and the kids days a little brighter. I don’t know how we would have managed without a new stroller and of course the blue man group was a wonderful experience for us! Thank you so much and we love you:)Barbara, I’m so grateful for all you do for Bl

Julian – As told by his Mom Jessica Leonardimage

Thank you so much for everything. I was packing my blanket and pillow you brought and telling Luella how I was sleeping in Julian’s hospital bed and feeling cold and woke up to you making me comfy. It was such a sweet and kind thing you did that day. I love the fun stuff too, but that day I needed comfort and you came. Thank you for all you have done for us.
We love you and hope to see you soon,
Jessica 

Aidan Inman – As told by his Mom Jen Micallef Inman1471736_10151992278134726_768773603_n

I have some really huge news! Aidan’s doctor just informed us that after tomorrow scan, he will have just one more scan in the summer and then will only have annual Longterm care check ups in New York. No more Scans, no more bone marrows!!!! Wow! Please join me in praying that Aidan’s next two scans are clear and that he is NED forever and ever! This is so huge it is really hard to process this news! NO more Scans, really….We are almost there!!! My heart and soul are pounding!!!! So blessed and so freaking out big time!

1459331_3585566095340_1525850698_n (1)Parker Shaw – As told by Aunt, Amber Peters and Dad, Dave Shaw

Just a few pictures from today. Barbara Zobian is a part of Candle Lighters NYC. She is such an amazing woman. She takes these kids and their families in and treats them like her own! She is such a beautiful woman inside and out! Not to mention she always comes bearing gifts. She’s pretty much like a beautiful version of Santa Clause:) Today she took Parker, Dave Shaw, Aiden, and his Mom Jen to dinner and to The Lego Superstore to spoil them! So awesome:)

Thank you so much for tonight! Parker has never been up and moving so fast after Marrow biopsies. He totally forgot about today’s treatment and had a blast with you! Thank you!!!!

Arianna Dougan – As told by Mom, Lori Zucker

The Background: it was the first time we met Barbara from Candlelighter’s, we were waiting for a scan, it was our first trip to New York, our first time at Memorial
IMG_1396 IMG_0231 Sloan Kettering, the first time outside of our home hospital, we did not know anyone in New York, we were recalling feeling a lot like a fish out of water might feel.

The story: Barbara called me and asked if she could meet us at the hospital and asked me what kinds of things Arianna might like ….I know we didn’t have a lot of time before the test so I just answered …you know girly stuff. About 15 minutes later in breezed Barbara with two giant shopping bags some what out of breath…” how much time do we have?” she asked…..the started pulling tutus, tiaras, a rainbow array of necklaces, bracelets, gloves, and rings out of her bag and dressing Arianna (my 7 yrs old cancer fighting princess) up in all these, then asked for a hug and out the door she went…..we call her the speed gifter now. And with all her fast gifting Barbara was able to make us feel welcomed, loved, and supported. We are forever grateful for our new friend.

Since that first trip, we have now started traveling back and forth to New York for Ari’s treatment. Our first stay at the Ronald McDonald house included a visit to Barbara’s place for some more fun fast gifting, and our first meeting with UNO her wonderful dog.

Now some background on Arianna
Ari was diagnosed with stage IV Neuroblastoma in St. Louis, Mo. on June 28th, 2009. She was 3 yrs old. She has battled through 6 induction rounds of chemo, two bone marrow transplants, radiation and surgery. She then was found to be free of disease. Then she had 6rounds of antibody therapy and accutane. Then she relapsed. We then started a trial with an experimental drug and chemo. After 2 1/2 years on this regimen Ari had reduced her disease burden to minimal so we decided to take a break from chemo and try a phase 1 Antibody treatment at Sloan Kettering in NY…..

Brianna – As told by Mom – Danielle Howard

My daughter Brianna and I traveled to NYC for what we thought would be a two day trip for a second opinion with a new team of doctors. Little did we know935102_146465002226087_1383228201_n that those two days would turn into 11 long months. Leaving our family behind, and all the comforts of home, while taking on a vigorous chemotherapy and radiation regimen in preparation for a bone marrow transplant was no walk in the park. We are so very thankful we were able to meet Barbara and her family during our first month living at the Ronald McDonald House. They became our family in a sense and provided such comfort and joy to Brianna and I during our stay. We were able to enjoy outings that we would never of been able to experience on our own, we were gifted beautiful items, we were treated like family, and we were always shown kindness and compassion. Barbara and her family often put our needs in front of their own and were always there to lend a helping hand when needed.

We will never forget Candlelighters NYC and all they have done for our family. It was because of them our 11 months away from home was enjoyable in many senses.

Thank you from the bottom of our hearts! Danielle Howard – proud mother of Brianna

Ben and Leah – From Julie

IMG_0127

Hi Barbara,
I just wanted to thank you and your organization for a wonderful evening tonight. Ben and Leah had so much fun! It was a great way to end four long days of chemotherapy at MSK. It’s so hard to see your child go through this and its such a disruption to our family. It’s amazing how one night of fun can rejuvenate the soul for the next phase of treatment. I really appreciate the time and effort you put forth for us and especially all of the smiles you put on ALL of the children’s precious faces!
Sincerely,
Julie

 

Kennedy – As told by her Mom, Kathleen

Dear Barbara, our NYC Candlelighter,

Kennedy and I wanted to say thank you for all you have done for us during our various stays in NYC at MSKCC.  You have helped to make our time away from our home in Atlanta,GA feel a little more like home despite the issues we are dealing with.  You have given us us joy, happiness and support beyond words.

Kennedy and I will never forget the moment we met you and UNO on 1st Ave and we ended up having coffee and becoming lifelong friends.  Before we knew it, we were swept off to a tour of FAO Schwarz and a Bloomingdales makeover for my girl.  You have always been there for us and 3 1/2 yrs later you are with us again.

Thank you for all you do for families like ours and for raising awareness for the the most underfunded cancer of all-pediatric .

Much Love to you,  Kathy

Nina – As told by her Dad, Josh

Janine (Nina) loves Uno! He is the official mascot for the Candlelighters. Uno has been a great encouragement and example for her. Nina was amazed when she first spent time with Uno because Uno has his own medicine to take. She was amazed that like her he had medicine to take. Uno was a very good boy and took his medicine very easily- Nina realized she also needed to be a good girl when doctors want her to take medicine. Nina says he is a ‘baby doggy’ because he is so small. He is he perfect size to sit on her lap. Nina likes when he licks us and gives us kisses!

She also asked if UNO talks like the doggies on Beverly Hills Chihuahua (we have watched that movie at least 10 times since being admitted to the hospital last week). Nina hopes he is being
a good listener and doing what the doctor says.

Today while at the hospital Nina saw a picture on Facebook of Uno at the doctors office. Nina was so surprised that Uno had doctor appointments like her. She found out that he has to do many of the things Nina has to do. It helps Nina to know she is not the only one that has to take medicines, have doctor appointments, have iv’s, etc. Uno is such a great example of how to be brave!

Nina had music therapy today and wanted to write a song about Uno. Here are the lyrics:
‘Uno is a small puppy
He likes to lick and gives me kisses
He is brown and black with short hair
He sits on my lap and I like to pet him
Uno lives in New York
And he takes medicine just like me’

Nina loves Uno and can’t wait to see him again!

Layla Kosinski – As told by Mom, Missy Bowers Kosinski

A wonderful gift arrived at my front door today, Layla`s New city micro stroller!!! Thank you Barbara Zobian! She loves it so much I could hardly keep her out of it 🙂 This will be so much easier to push around the bumpy New York streets! Thank you, Thank you, Thank you

Noah Costa –  As told by his Mom, Anne Taylor Costa

He is enjoying life just as he should! For Halloween we went to my sisters and Noah was an ostrich rider…yes I said ostrich rider…a huge thank you to our Barbara from NY Candlelighters…she takes care of our kids no matter what they want to be or where we are! She purchased this outfit and sent it to Noah…we love her for all that she does to brighten our kids days! I didn’t tell him and he was so surprised, I have attached a picture for you all to enjoy!

Molly and Lilly MacGlashan – As told by Grandma, Sue Tarn

Barbara Zobian, its just so lovely to see that Molly was having fun while she was away. The headware is so beautiful, no wonder Molly loved wearing it. Thank you so much for looking after her while Lilly was at MSK, I know how much it was appreciated. I hope that one day we will get to meet each other, so that I can thank you in person, for being such a good friend to my family while they are away from home. xx

Dear Barbara,

It was really nice to get a chance to meet you when Grey and I were in NYC even it was so briefly at the end.  Grey  was so excited to get the great bag of gifts.  I am grateful that you have been there as such a kind and supportive friend to Abby and Donna.  It is such a great and necessary lift for Abby to have the fun, kindness, unconditional support, and patience you have provided.  It is actually a lift for me when I see a picture of Abby having some fun at FAO Schwartz or in her new pink wig.  Thanks again for all you have done for us.

Yours truly,
Ramesh Kakarala

Connor Gerber – As told by his Mum, Tania Gerber

On the 4th of July 2005 my son Connor was diagnosed with stage 4 Neuroblastoma and was given less than a year to live. Having a child with cancer we chose to fight this beast and that we will not loose our ”baby” to it, we had to raise funds as Sloan wanted $250 000 upfront, Bruce, myself, Connor and his baby brother Aidan arrived in New York in May 2006. Connor underwent surgery to insert a port removal of his tumour cause they could”nt do that back home. We then got introduce to a wonderful cheerful lady by the name of Barbara from Candlelighters, she became our family, a friend who listens when you as a Mom just want to cry your heart out, she brings a smile to your childs face even when they don’t feel like smiling. She is truly an Angel from God. No amount of words will ever be able to say how much we as a family appreciate everything Barbara and Candlelighters are doing for us, the emotional support we get especially now that I am alone here with Connor for him to get treatment while my husband is back home in South Africa with Aidan and Ethan. The pain we go through as a family of not being together but then we see Barbara and Uno and your pain just go away even if it is just for a bit. Thank you Barbara from the bottom of our hearts, you will always be welcome in our house when you come to South Africa!

Mathias Giordano – told by his Uncle Steve

I just wanted to send a quick note, and I wish it was more than a note, to express how much you and your team meant to my nephew Mathias. You brought light to a day that was very tough, you helped my brother, and lifted a burden from my sister-in-law.

I can’t tell you how much your care and time meant to my family. Once we are done with our struggle, you have an advocate for all time.
With love and affection, Steve Giordano

Abby Kakarala – (From mom, Donna)

Thank you! For everything!
I have been thinking about how to properly thank you to you for today. But I can’t find the right words. After being welcomed warmly into your home and showered with awesome gifts and treated like a long-time friend, I can’t find the right words. Abby couldn’t have been happier with this day. And it really did start off badly! When we got back, she immediately started getting all her new toys out and playing. She even had a bit of a concert with Elmo on her bed! It was so cute.
I really appreciate all the fun toys and gifts you gave to us. They are all perfect! And the pictures you printed for us. And the wine you shared with me. And the wonderful, much-needed break which came at just the right time. It’s amazing how much of a difference an hour can make in a day! Abby and I both enjoyed the happy distraction and change of scenery this afternoon. You are so warm and friendly, it’s easy to feel comfortable with you. And with your generosity, it’s hard not to feel spoiled! I also feel we are very lucky to have met you. Thank you for turning our day around today!
Love,
Donna and Abby

E

Emalee Kachurka – (As told by Mom, Tara Kachurka)20120812-192042.jpg

“My daughter, Emalee was diagnosed with stage 4 neuroblastoma in Feb. 2010 at the age of 2. She began her treatments at our home hospital in PA, but about year later we found the need to transfer her care to Sloan Kettering in NYC. Emalee and I moved into the Ronald McDonald House in NYC during the spring of 2011, where we lived for several months, and we were shortly introduced to an amazingly kind woman named Barbara and The Candlelighters Organization! Emalee and our family fell in love with Barbara and her little dog Uno almost immediately! She welcomed us into her home and treated us as if she had known us our whole lives! Candelighters, and Barbara of course, have been so kind to our family and we can’t thank them enough for all they do! They have taken Emalee on several trips when we were in the city….a shopping trip to the American Girl Store, a Princess Party at Alamar Sales and when Barbara saw we were in need of a new stroller to use while traveling back and forth to the hospital….she had one purchased for Emalee in a flash! It is nice to know we have such wonderful support in her and Candlelighters when we are far from home! Candlelighters and Mrs. Barbara always know how to put a smile on our daughter’s face, even when she is not feeling well, and are we truly grateful! Emalee’s first request when we get to the Ronald McDonald House is always….Mom, can we go see Mrs. Barbara & Uno! Thanks for all you do! You will always have a special place in our hearts”

Matthew Pedrotty (From his mom, Elissa Ritchie Pedrotty)

“Rough day with bone marrow and scans….but thanks to Barbara with candlelighters our usual 2 hr meltdown was only about 45 minutes. This smile was all worth it. He really did have a rough rough day”

Alina’s Story (As told by Mom, Maria)

Thanksgiving of 2006, I was alone with my 5-year old daughter, Alina in NY where she was getting cancer treatment. We were staying at the Ronald McDonald house and there was a special trip planned for that morning to go to the Macy’s Thanksgiving Parade. Unfortunately my timing was off and we missed the bus by a minute. We were standing in the lobby, both very upset, as there was no other way to get there. Barbara, a volunteer at that time, happened to be in the lobby that morning and asked how she could help. There was no way to get to the parade because of security, but she offered us a visit with her puppy Uno. Alina couldn’t have been happier. We ended up spending a lovely Thanksgiving brunch with Barbara and her family (and I was forgiven for missing the bus). Through all of our ups and downs over the last seven years, Barbara has continued to help, love, listen and understand. Few people have that generosity of spirit. We are very grateful that she was able to start Candlelighters NYC, as now she can provide support for so many more families of kids with cancer. Thank you!

Eli’s Story (As told by Dad, Aaron)

I remember when someone told me that I had to get a hold of Barbara from Candlelighters NYC when our three year old was diagnosed with Neuroblastoma and we came out to New York City for the first time. They told me that Barbara was an amazing friend and resource for families with kids fighting cancer. I think they undersold her by a long shot. When we met her, we were walking to the hospital from the Ronald McDonald House and she held my wife’s hand the whole way. When she found out we would be inpatient at the hospital, she went out and bought us a real pillow and said, ‘You can’t sleep on those plastic pillows they give you at the hospital, here, take this.’ That was just the first of many extremely thoughtful and practical gifts that we received from Candlelighters NYC.

Whether it was a craving that our son Eli had for a particular kind of food, or wanting a certain kind of toy to lift his spirits, Barbara didn’t hesitate to run out and get it for him. For over 4 years now, we have watched as Barbara has provided fun outings, free dinners, free gifts, emotional support and amazing experiences to kids and their families that are in NYC battling cancer. When parents ask each other, ‘Do you know Barbara from Candlelighters?’ if the answer is yes, it is always followed by, ‘Isn’t she amazing?’

My sons call Barbara their ‘NY Grandma’ and she treats all of the kids like her family. She makes sure they have positive experiences and comforts mixed in with the days/weeks/months/years of hard treatments and scary scans they endure. From holding a mom’s hand while she hears the latest scan results from the Doctors to throwing parties at FAO Schwarz, Barbara at Candlelighters NYC has been a comfort for so many years to so many families. On top of that, she raises hundreds of thousands of dollars every year for Childhood Cancer Research, which is so critical. We couldn’t imagine our experience in NYC without Candlelighters NYC being such a huge part of it.

Nate’s Story

Nate Hudson – Stage IV Neuroblastoma Cancer – Diagnosed September 2009 (age 2 ½), Relapsed November 2010 (age 3 ½)

 

We brought Nate to New York City for treatment for relapsed neuroblastoma cancer treatment at Memorial Sloan-Kettering Cancer Centre (MSKCC) early in 2011. The only medical centre in the world with a proven therapy for neuroblastoma relapse in the central nervous system. Nate’s primary treatment centre is SickKids Hospital in Toronto, Canada. We arrived to an unknown city, a new hospital, an unknown medical system, an experimental therapy, and a medical team that we had never met before. We were also separated as a family for the first time ever, with Nate and his Mom staying in New York City by themselves, and his Dad and younger brother at home.

 

We were exceptionally lucky to be put in contact with Barbara Zobian of Candlelighters. She immediately welcomed us into her home, her family, and made us feel like we were not alone. During our first course of treatment, Nate had his fourth birthday. Barbara planned an entire birthday party for Nate with her volunteers, Julie and Dee. We had a magical afternoon at FAO Schwarz – having a private tour of the store with our very own toy soldier, dancing on the floor piano, and a celebration in the party room with balloons, decorations, cupcakes and a mountain of gifts. We were completely overwhelmed by the generosity and love shown to us that day. Months after his fourth birthday, Nate still talks about going to the “big, beautiful toy store”. The memories created that day will stay with us always.

 

When Nate wasn’t at the hospital, we tried to fill our time in New York City with as much fun as possible. Because we would be at MSKCC regularly for treatment, we wanted Nate to feel good about going to this new city. Candlelighters helped us to achieve this by making recommendations on places to visit, inviting us to events and parties, and just being there to help out when we needed it. We consider Barbara and the Candlelighters of New York City to be a part of our extended family, and for all that they have done, we are forever grateful. The work done by Barbara and Candlelighters is beyond measure. They bring comfort, grace, support and most of all love to families who are being faced with the monumental challenge of fighting paediatric cancer.

Chris’ Story

So much has been written about what Candlelighters does for the children. They make a tremendous effort for them on many levels. I wanted to share with you a different perspective: what is provided for the parents.

 

Our son, Chris, was a patient at Memorial Sloan-Kettering between 1999 and 2005. He spent many long weeks in New York, which is a long way from our home in Florida. Not only was the distance geographically great, but there are also cultural differences that needed to be addressed, too.

 

Just as soon as we had arrived in New York for Chris’ initial medical evaluation and treatment protocol, we met Barbara. Ever exuberant and joyful, Barbara befriended and “adopted” us. She was always mindful that our focus was entirely on Chris’ treatment, but Barbara also knew that we needed to approach Chris’ treatment from a holistic perspective for the whole family.

 

She knew that if we, as parents, didn’t take care of ourselves, we would eventually wear ourselves down, which would degrade our support to Chris. So anytime we were in town, and Chris was feeling up to it, Barbara ensured that we knew where to go for cool “cancer kid-friendly” events or places. She also made special “mommy” or “daddy” arrangements, too, so that we could individually take care of ourselves. I remember one day in particular that Barbara had arranged for me to get a free “Madison Ave.” haircut, as well as a manicure and pedicure. She accompanied me on that special day, and it was quite a treat because we also spent a bit of time enjoying lunch at her favorite nearby restaurant as well as perusing some of the New York boutiques. That may not sound like anything special, but it was especially delightful because all that I had been doing for months was working, taking care of insurance claims and travel arrangements between Florida and New York for my family, in addition to their’ everyday needs. It made me feel like a person again. Behind the scenes, Barbara made arrangements for free or discounted pricing because she knew about the financial strain under which families combatting pediatric cancer operate. She also stayed in touch with us while we were in Florida, not only out of friendship, but also because it helped her gauge what sort of arrangements she wanted to make for us whenever we were in New York. Of course, she never told us that.

 

Mountains were moved in order to ensure that we felt like home in New York — and we did. We could never have coped with the nearly six years of non-stop treatment without such loving, caring support. We are deeply grateful. And to think that she and Candlelighters make every family who are under such difficult circumstances feel so accepted, well, it’s simply amazing.

Zachary’s Story

Zachary was diagnosed with neuroblastoma when he was six months old. He did not initially require treatment. He was diagnosed as stage four at two years old and began treatment. Zach and I lived in NYC for over six months as he was treated. It was during that time that I met Barbara. She invited us to a Candlelighters’ meeting at a nearby apartment. After many weeks of grueling treatment and long periods of isolation due to Zach’s diminished immune system the night out was an enjoyable and much needed event. That evening was the first of many Candlelighters events that provided enjoyment for Zachary and me. An even more important benefit Barbara and Candlelighters provides is the love and support offered to children and families that are battling cancer. When Zach relapsed in 2007, Barbara accompanied me when I discussed treatment options with Zach’s doctor. I was dismayed and in shock and Barbara offered to write down what the doctor said so that I would be able to digest and understand it later when I was in a better frame of mind. All I heard in my head was that the cancer was back, and we needed to fight again.

Barbara is always ready to spring into action when a family is in need. The Candlelighters’ events are joyous and fun and provide a relief from the daily suffering of children and their families that battle childhood cancer. Zachary’s first request when we travel to NYC for appointments is to visit Barbara and and her little therapy dog Uno.

Nick’s Story

Nic’s top wish to see in NYC was the Empire State Bldg. As we headed out, we got a phone call from Barbara with Candlelighters, an organization that does amazing things for kids with cancer. She lives just down the street and was meeting us outside. Barbara and her friend, Shelly, from Seattle, were coming up the sidewalk as we stepped out, yelling greetings like crazy! We were immediately welcomed into her family. Travis and I agreed we have never met anyone like her before. Barbara is like a tidal wave or hurricane of complete, sincere friendliness. She walked arm in arm with Nic, wanted to show us where she lived, took lots of pics and it went on and on. She and Shelly, too, were amazing! As we parted ways she pulled me aside and asked me if I feel like I had family in NY now. And I do. (Thanks Aaron and Lacey for sending her our way!!!!)

Shannon’s Story

Shannon’s sunrise was June 13, 1985 and her sunset April 10, 2009, although I don’t believe that the beauty of who she is ended with that sunset. During Shannon’s time here, her zest for life was visibly apparent and she wore a smile that could light up an entire room.

 

In January of 2008 Shannon was diagnosed with a rare and aggressive pediatric cancer called DSRCT. Due to this, Shannon was treated on the Pediatric unit at Memorial Sloan Kettering in New York City. It was about 5 months into her treatment when we met Barbara. June 13, 2008 to be exact. I remember this clearly because it was Shannon’s 23rd birthday.

 

Escorted in a wheelchair by her dad, Shannon was headed down the streets of NYC to the hospital when they were approached by Barbara. Shannon was finishing up the fifth cycle of an aggressive chemo regimen. In addition to making her very ill, the chemo had of course left her with no hair, eyebrows or eyelashes. A rough time for a 23 yr old girl, although that didn’t stop her from smiling and caring for those around her. The smile she had on her face that day however was much brighter than any I had seen in a while. After they had met, Barbara scheduled an appointment for later that day at a salon in the city for a makeover complete with some fancy eyelashes and eyebrows. The photo included of Shannon and Barbara was taken on that day.

 

This was the beginning of the many things that Barbara did to support us and to let us know that we weren’t alone in New York City. An open door to her home, visits, gifts, photos, love. What made this even more special was that we found that Shannon fell somewhat between the cracks in qualifying for some of the support programs. She wasn’t considered to be child, yet by the standards of others wasn’t fully an adult either. Although Candlelighters supports children who are going through cancer treatment, Shannon was embraced by Barbara all the same.

 

Along with Barbara, I want to give some much due credit to her husband Stewart who stands right beside her and welcomes all of the families into their home and into their lives. These are two of the most selfless; giving people I have ever had the privilege of meeting. I can’t forget Uno either, Barbara’s therapy dog and official spokespuppy of Candlelighters NYC! Shannon and all of the kids adore Uno. In fact it was Uno who prompted Shannon to bring Leyla, a rescue yorkie into our home. Barbara was very much an advocate for helping that to happen as quickly and as easily as possible for Shannon.

 

In the last week of Shannon’s life here, Barbara, Stewart and Uno drove from NYC to our home in Pennsylvania to visit. They brought along with them a specific body pillow that I had requested for Shannon because it was becoming increasingly difficult to keep her comfortable. Barbara called several stores in NYC until she found the right one. This is very characteristic of all that she does. I know there are many great support organizations out there but few, if any that I can imagine would go to the lengths that Barbara does to provide that support. We will always hold a special place in our hearts for them and all that they have done.

Jay’s Story

Thank you so much, Barbara! I will always be so grateful for what you did for Jay and me, as well as what you continue to do for all of the other families and kids. During our time at RMDH, I was not as outgoing as some of the other parents. I suppose that my way of coping with everything was to somewhat withdraw into our own world. I’m a quiet, reserved kind of personality anyway, so it became more so then. I very much appreciate all of your support, even though it may not have been apparent. Jay loved Uno so much, so thank you for sharing him. I love the pictures… he is as cute as ever! Again, thank you from the bottom of my heart for all that you do!

Love,

Virginia

Madisyn’s Story

Candlelighters was a gift from heaven while our daughter Madisyn was a patient at MSKCC in NYC. Barbara went out of her way to make sure Madisyn had a smile on her face every single day. She would bring some of Madisyn’s favorite treats, or suprise her with an outfit, or favorite cartoon character pillow. Not only did she provide Madi with comforting things, lighten the mood and put smiles on our faces…she was a huge support for my husband and I. Whether it was just providing an ear for listening or a shoulder to cry on, Barbara goes out of her way to make sure we were loved and supported while we were away from our family. She has so much knowledge and can provide feedback from helping other families on this terrible path. She truly loves the kids and their families and would walk to the ends of the earth to help in any way that she can!

Kassidy’s Story

Thankfully, we have friends here in NY that we have made over the years. Barbara with Candlelighters NYC has been a TREMENDOUS support to us. Candelighters bought Kassidy some awesome furry Uggs and tennis shoes. She also brought us 2 down feather pillows, a body pillow and a really really warm and soft blanket for Kassidy. Its not just the “things” she gives us that matter most, its the constant love and support that she provides to so many of the families going through childhood cancer. We love you Barbara and Candlelighters NYC!!!!!

Nick’s Story

“He got out of there and went on his Make a Wish, turned 10 and LIVED for another 7 months. He’s one tough cookie! Thanks for helping us get through those 2 months in ICU Barbara! You made a huge difference – we will never forget!”

Shannon’s Story

 

One of the friends we never would have made it through without – our dear friend Barbara. Barbara took us under her wing – waited on us – shopped for us – brought us special treats- gave us hugs – lots of love – gave me “mom” time away for beauty treatments and special lunches. She also treated Shannon to many “birthday” parties at our favorite restaurant, Mez Mescal on 86th street. Shannon would wear a sombrero on her head, speak all the Spanish words she knew, and flirt with the Mexican waiters that brought her as many candied cherries as she could eat. At the end of the meal – they would sing “Happy Birthday” in Spanish and watch Shannon blow out the candles on a Mexican treat. Oh – the memories – they flow freely and constantly. There are very few moments in my days – that memories such as these are not on my mind. The memories are prescious and everlasting – fresh glimpses in a life with Shannon – not perfect , not without suffering and hardship, but beautiful in spite of all that.

 

Many of these precious memories include Barbara and her family. Our family away from home. She was constantly planning – trying to make our pain less and our laughter greater. I don’t think I’ll ever meet another person as giving as Barbara. She is amazing and a true hero in my eyes. Nothing I can say will ever convey to her the gratitude and love in my heart for her and all she did for Shannon and our family. During my recent trip , Barbara and I had lunch at another favorite Manhattan restaurant – “The Boathouse”. Chef Anthony was kind enough to treat us to a fabulous lunch and came out to meet me. He had heard many stories from Barbara about Shannon, and I had heard a lot about Anthony too. It was an honor to finally meet “Chef” Anthony.

 

Our lunch at the beautiful Boathouse restaurant was bittersweet as well. As we sat there looking out at the water and boaters in Central Park, we reminisced about Shannon. Just listening to Barbara, holding her hand, and thinking about the loss of Shannon, was almost more than I could bear. It just didn’t seem right that Shannon wasn’t there enjoying the delicious food with us. ( Boy did Shannon like to eat – especially on all that prednisone!) When Barbara and I parted ways once again – I cried . I just couldn’t help myself. Life really stinks some times. The good part is though, Barbara will always be part of my life. She will always be around to remind me of all the good times we shared with Shannon – full of what life is really all about – good memories, fun and laughter. Somehow, the struggles don’t seem as important. I only dwell on the happiness. Thank you Barbara for being our HERO, our friend, our support throughout the struggles. We miss you and love you very much.

Athena’s Story

Barbara Zobian from Candlelighters is an angel in our lives. She is always helping not only my family but many other families who are dealing with this terrible illness. We can see her trying to put a smile on the children’s faces, comforting the parents and family , helping in any away she can. She is a small lady with a giant heart. Barbara was there for my family when we needed the most. Thank you Barbara for everything. A big hug from Athena and Family.

Brooke’s Story

It was raining…

we were new to the city,

fresh from the pasture of the ranch,

already LOST.

 

… Confident God had led us to NYC on purpose,

yet still…

timid and somewhat scared.

 

There in the rain, she stood

huddled with her tiny dog Uno

on the doorstep of the corner bakery

it was cold

her smile was warm,

contagious,

and welcoming.

 

She took us in,

like family.

A family for our family.

 

But this was only the beginning….

pillows, blankets, a hand to hold

while our baby was cut open for 10 hours

 

Comfort food

smiles

love

tears

hugs

laughter

sunshine

prayer

couch

home

toys

photographic memoirs

crafts

comfort

treasures and

parties… to distract from harshness of cancer

 

our baby

our only child

 

now survives,

thrives…

 

we are grateful,

beyond words,

to the love Miss Barbara

and CandlelightersNYC

 

has given us.

 

As a mother

I am

honored

to give back

to CandlelightersNYC

as vice president

 

perhaps one day

I can do my

best

to learn from

Barbara

and give back to others

the way she selflessly

gives

and

gives

and

gives

of herself, her love, to others

to families

to children.

 

…because kids cannot fight cancer alone.

Ashlynn’s Story

My daughter Ashlynn Rose was diagnosed with DSRCT cancer on August 4,2009 at 6yrs old. Our home in Virginia did not know how to treat DSRCT,as it is a extremely rare form, so they advised us to come to NY for treatment. Leaving family behind, my 2 other children ages 11 and 12 at the time, Ashlynn and I arrived in NY by ambulance, on August 14th at 12am, alone, sad and scared. I had never been to a big city.

And now we were here because my little girl had cancer.That was scary enough!

We knew nobody.We had nothing.All we had were 2 small bags of clothes we brought with us.Not knowing then that we would be here for over 2 years.

I will be honest,I have heard many stories about NY city.I was scared to even go outside at first.So many people,so many cars,so many buildings,so many crazy outfits.

Ashlynn began her treatment.She lost her hair, she had her chemo,surgery,radiation and gained so much weight from steroids. She was not feeling well at all.

She was so scared inside her little body.I was doing everything possible just to put a smile on my babies face every day,keep her happy,that’s all that mattered to me.

Ya know how they say that there are “angels in disguise”? Well we met ours one day as we were out going for a walk.At this time Ashlynn was having trouble even walking so she was in a stroller.A very nice lady stopped us and starting talking to Ashlynn asking her what her name was and what type of stuff she liked.She introduced herself as

Barbara Zobian from candlelighters.She then says she wanted to give Ashlynn something.I can’t believe the kindness of this lady,a stranger.She goes upstairs a minute and brings Ashlynn an ugly doll and all kinds of little goodies,and stuff for me too!Also..her dog UNO.Ashlynn was so happy! We have always had dogs at home and she loves animals.This wonderful lady we just met had made Ashlynn so happy.Which of course made me happy.

Since that day we have done wonderful and fun things with candlelighters.Parties at FAO Schwartz,halloween parties,or even just getting invited into Barbara’s home to visit,socialize and relax in a “normal” household setting…and of course Ashlynn gets to play with Uno,who she loves!

Barbara and other volunteers have been there for so much.An ear,a shoulder,a laugh.Being stuck inpatient is not fun, but she always finds a way to bring on the smiles.Little gifts,toys,toiletries,clothes,you need it and she is there for you.During one of Ashlynn’s surgeries as we waited in the waiting room very nervous and scared.We were looking for

a scapula.Barbara went to different churches until she finally found one, and brought it to us before Ashlynn was even out of surgery.With so many more blessed items.

I couldn’t thank her enough.This hangs over her bed,even if we are inpatient,it goes with us.

She was our angel that day of surgery, as she has been so many days.She was our angel that day on the street when we were alone.She has helped us adjust to this big city.

She has helped ease our pain so many times.She has made gloomy days a lot brighter.She has found our smiles, even when we couldn’t find them ourselves.She has made such an impact on me and Ashlynn.She has helped us through our journey in so many ways.

Barbara and all of the candlelighter volunteers are amazing.The kindness in their heart is overwhelming.

The last 2 years have been a very hard journey.To see my baby suffer,to see her in pain.To see so many other children in pain that you become so close to during these times.There are no words to describe the hurt.As we continue, I know candlelighters will be with us every step of the way to help make it easier.We are so lucky!

So,when you say that there are not any “angels”among us…I would beg to differ with you.There are many different “angels” with us all the time.Some are with us in spirit,that we miss very much and are watching over us…then some are with us physically,to help us through our times..and watch over us.If you’re lucky enough,one day,you just might meet one!

Thank you Candlelighters of New York!!

Dakota’s Story

My five-year old daughter Dakota has Stage IV High-Risk Neuroblastoma, a cancer with a poor prognosis despite very aggressive treatment. We have been visiting New York often for 4 years now, in order for her to receive the chemotherapy and clinical trials she needs to survive. Candlelighters NYC has been a second-family to us while we are far away from home. They have provided us with fun outings for our kids, a home-like environment to “get away from it all”, and even a brand-new double-stroller when times were hard financially. Candlelighters NYC is such an important part of our lives; an organization that really cares about our family and ALL of the pediatric oncology families in New York. What would we do without them?!?!?

Jensen’s Story

Jensen Daniel Byrd was born on April 7, 2005 during a torrential flood. The heavens had opened up right before he entered this world. He was diagnosed with Stage 4 Neuroblastoma on December 8, 2007 at the tender age of 2. He was a healthy happy little boy and his diagnosis was an accident following a slight bump to his tummy and ending with the horrific discovery of a grapefruit sized tumor in his abdomen. From there, he endure nearly three years of treatment with three relapses, the final relapse taking his life on August 24, 2010. He was such a happy child despite all of the adversity and pain he faced. He never let it get him down and lived each day to its fullest. He inspired so many and continues to do so. There are so many things I could tell you about Jensen, in fact, I continue to blog about him nearly every day. He was the love of my life and there was nothing I wouldn’t do to keep that beautiful smile on his face every waking hour. Meeting Barbara Zobian made that task so much easier. The world is now a darker and colder place without his radiant smile and the warmth of his affection. Cancer may have taken him from me, but it could not take the memories or the people that were placed in my life as a result of it.

 

During one of our first trips to NY, we were invited by a fellow Ronald McDonald House guest to a Halloween dinner hosted by the Candlelighters of NY. I had no idea who or what that organization involved, I just saw it as an opportunity to get out of the house. I remember seeing this lady with a huge purple wig and dressed in purple and black attire with a voice that could be heard above all others. Jensen and I were both taken back with this lady but kept an open mind being it was a costume party. Jensen had refused to wear his Luigi costume because it was “not really Halloween yet.” Barbara, the Candlelighter’s representative, made such an impression on us both that day. There was an instant feeling of closeness, love, and sense of family. She did not ever give me that feeling of pity that so many seem to portray on their first meeting of a cancer child. It was as if we had knew each other forever. From that day on, each trip always included a Candlelighter’s event. From tours of FAO to parties to private tours of the city, Barbara always made each trip a bearable one. Her passion and love for the children was abundant and with the support of the organization, she was always providing basic needs such as toiletries, toys, tokens of appreciation, meals, Internet access, and so much more. There was never a need or a request that went unanswered. She was there for support, assistance, and most of all, an always much needed distraction. She opened her home, her heart, and her family to my entire family. I will be forever grateful for Barbara and the Candlelighter’s of NY for their generosity and compassion. I will cherish the many smiles they brought to my little man’s face always.

Cole’s Story

Cole was diagnosed with Neuroblastoma in April 2009- seeing very quickly that we needed to go out of state to get him treated, we headed to New York City from the midwest. Another parent had passed the information about Candlelighters to me before we left, saying that this organization, and particularly Barbara would help us if we needed anything. My husband and I left our then 8 year old at home with grandparents, and began a two month stay in August of that same year.

Since then, Candlelighters, Barbara and her team of volunteers, has brought countless smiles and giggles from both of our kids. Even when Cole doesn’t feel like eating, or he has had the worst day of having his port accessed and a painful antibody treatment, he jumps at the chance to see Uno, rest and relax away from the stress of the day. When he was admitted to the hospital on his birthday, and subsequently began a marathon stay through Christmas and New Year’s, Barb was armed and ready for cheer, from stringing lights in his room, hanging Santa and some snowflakes on the wall to eventually switching out the decor to ring in the New Year, Candlelighters made a difficult holiday season for us much happier. We can always count on the organization to help us when any need arises, from needing toiletries from an unexpected stay, to providing pillows for the hospital, and blankets for the kids. Siblings are top notch in their book too, and they are included in every activity! Thank you Barb and all the volunteers who make our kids’ lives richer and happier- thank you for helping their siblings and taking care of us parents- we couldn’t do it without you- much, much love!

Olivia’s Story

Olivia was diagnosed with Acute Myleoid Leukemia on February 26, 2009 and received her first Bone Marrow Transplant on September of 2009. Unfortunately Olivia relapsed only 5 and half months after her transplant and that is when I met Barbara Zobian, She was so kind and immediately embraced us like family. During this year Olivia had two surgeries and both times Barbara reached out to my family to make sure we were OK and if there was anything we needed. She took it upon herself to drop off a pillow for my self since I would be sleeping in the hospital with Olivia and some healthy nutritional snacks. Candlelighters brings many families together and we share this common ground called Cancer. I love that Candleighters just makes you feel like you are not going through anything, you feel somewhat normal. Their events are amazing Olivia always has a blast. I am pleased to say that Olivia has been in remission for over a year now and will be starting school in September. I hope that Candlelighters continues to grow and help many families as they bring many smiles to our children and happy hearts to the parents.

Justin’s Story

When we first started coming to NYC for treatment, I was alone with Justin (who was 5 at the time). We would come out for three or four weeks at a time. One day, a friend of mine mentioned a party at FAO Schwartz and said I should go. That is of course, where we met Barbara and where we were introduced to Candlelighters. We had a great time, but little did I know the very next day my son would be admitted to the hospital for a blood infection. We were alone, he was very sick and I couldn’t leave his side. Barbara, who knew me for what was maybe two hours, swooped in, brought him a blanket, some clothes to change into and many activities to try to help him through the rough days ahead. She checked in on us everyday, brought me meals and Diet Dr. Pepper. She didn’t have to, she wanted to. I no longer felt alone. I knew from that point on, Barbara and the Candlelighters group would always be there for my son, for me, for my family. They are truly our NY family. Thank you Barbara for everything you have done for Justin, Kelly and the rest of my family.

Noah’s Story

My son Noah and I have been traveling to New York for the past three years for his treatment at Sloan Kettering. While I had never heard of Candlelighters before coming to NYC I am humbled at the thoughtfulness, love, compassion and care that Candlelighters NYC shower upon our children and us parents! Instead of Noah talking about his treatments that he has to endure, he talks about how much fun he has had or will be having at a Candlelighters NYC event. Candlelighters NYC is incredible at taking the childrens mind off of treatments and making them feel special, but yet normal all at the same time.

 

Danika’s Story

My daughter, Danika Grace, was diagnosed with Neuroblastoma Stage IV at the age of 7 months. We flew to NYC (from S. Florida) to begin treatment immediately – this was early June, 2009. To say our world was in utter chaos and completely shattered is an understatement in the true sense of the word. I heard about Barbara and Candlelighters NYC from another NB family and reached out to her right around the time Danika became very critical and was transfered to the PICU. Barbara immediately showed up at the PICU, printed photos of Danika knowing this would be of tremendous comfort to me and my family, showered love on my then two-year old daughter, Day, who did not at all understand what was happening, and was always an encouraging presence whenever we needed her. When Danika turned one, we were still in the middle of treatment and about to go into major surgery – – there was Barbara with gifts specifically taking into consideration that Danika was now also blind, snapping photos and also printing them and putting them in a book so I could have to enjoy. It is a very special thing she does in how she loves and supports and encourages families dealing with pediatric cancer. Barbara considers the entire family and makes every effort to provide “distraction” if you will – be it a gift, a phone call or e-mail, a special trip to a toy or department store, and always with so much compassion for what we are going through. She never looks for thanks or any sort of recognition and always understands when schedules don’t allow for participation – there is never any pressure and it is always about the kids and their families. She is, in a word, an angel here on this earth. May God continue to bless Barbara and Candlelighters NYC for all they do to bring hope, light, and happiness to families going through a very dark time.

Nicholas’ Story

Nicholas Modestin is bright fun loving 5 year old boy who is battling ALL Leukemia Cancer for 3 years and everyday is a combat to conquer his cancer. He was diagnosed back in September 2008 and since that time he has climbed over many obstacles and challenges during his fight. The early stages of his treatment, doctors discovered an adrenal mass on Nicholas’ left side of his stomach that was incidentally indentified and surgically removed. During his stay in the hospital for a month he was also diagnosed with a rare complication of intrathecal chemotherapy Acute Leucoencephalapathy, in which he developed lower extremity weakness and rigidity. This effect showed signs of muscle weakness in his legs which made him unable to stand up or walk on his own for several months.

Words can’t express how CandleLighters has touched Nicholas’ life. The first time Nicholas met Ms. Barbara Zobian, President of CandleLighters his eyes lit up of joy and happiness. At that time CandleLighters gave Nicholas a confidence of strength, ambition and more courage to walk alone out his stroller and his pediatric walker during the events. Candle Lighters gave him a chance to share time with other kids battling cancer which made him feel relaxed and not worry about his condition. Overall Candle Lighters has been a blessing for Nicholas and we forever thank them for all their support, love and caring.

Today Nicholas is called the Miracle Baby by his oncologist Dr. Sadanandan. He is walking and even though he is not back 100%, everyday he is getting stronger both mentality and physically. His other oncologist Dr. Sedrak and nurses Lynda and Nelly in the Pediatric Unit are doing a solid job of taking care of my son and other kids with love, care and support of families during treatment. If you like to know more about Nicholas check him out at www.thelighthousecommunity.org. Click on communities we support, choose cancer and then click on Nicholas.

Kate’s Story

Candlelighters has been there for us through two relapses and countless hospitalizations, chemos and uncomfortable procedures. The activities that Candlelighters have for the kids make every trip to New York exciting. Along with the pain and scary procedures, they have fun to look forward to, and bring home the stories to share with their friends. I cannot tell how much it has meant to me to have someone to talk to who understands the fears of a mother’s heart during Kate’s scans and hospitalizations. Someone to hold my hand while I cry. And celebrate with when we get good news.

Thank You, Candlelighters and Barbara!! You’re the best!!

Aisy’s Story

Our daughter, Aisy has been gone one year. She died of stage IV neuroblastoma at the age of 4. We made numerous trips to NYC for treatment during her two-year battle. When we found out we needed to go so far away from home we were nervous and intimidated. One day when I was walking out of the hospital on the way back to the Ronald McDonald House, a very friendly lady stopped me and asked about my daughter who was in a stroller. She introduced herself as Barbara from Candlelighters and invited us to come to a halloween party. Aisy’s favorite thing was halloween and she was thrilled. Though the party was incredible, we had no idea the impact this wonderful woman and candlelighters would have on our lives. She was truly present with us in our battle and made it possible for us to enjoy NYC in ways that financially we never would have been able to alone. We watched her go to great lengths to give the children battling cancer their heart’s desire, whether it was a Luigi doll that had to be shipped from far away or a Wow Wow Wubzy movie that only one store in the city had in stock. Most importantly, however was that we felt that we had family there that could give us guidance, lift our spirits, and lend a shoulder to cry on whenever we needed.

 

One day Aisy suddenly became gravely ill and the doctors told us she would probably not live through the night. Our Candlelighters Angel was right by our sides for countless hours calling relatives for us when we could not speak the words, capturing what we thought were our last moments with our baby girl on film so we would have it, holding us while we wept, and bringing us food and anything else we needed so we didn’t have to leave Aisy’s side. Miraculously, Aisy pulled through for another 8 months. We are so thankful for Candlelighters and our angel, Barbara for loving us like family and bringing light into our lives during such a difficult time.

Trey’s Story

I had no idea about Candlelighters until I met Mrs. Barbara, We have been so blessed for this organization to come into our life.. Not only are we a family that’s been touched with cancer, but we have 7 children. That always makes a huge difference of people feeling too overwhelmed to help us, but Candlelighters of NYC and Barbara have always made all my children feel special, providing them with costumes, fun activities, walks around town, trips to the zoo, goodies and giftcards at Christmas. . They have always been there to help if I need help. I truly appreciate all they do.

Mia’s Story

Where do i begin, arriving in NYC in July 2010 with my daughter Mia 2 and half years old and diagnosed with stage 4 Neuroblastoma was beyond words. Mia and i originally stayed at the Ronald McDonald House that’s where i met Raquel she was the one who talked to me about Candle Lighters and Barbara Zobian. It took a few months for us to finally join, ever since i cant express how much love has been given to us our 1st trip with Candle Lighters was October 3, 2010 Halloween to 1 of Mia’s favorite shops Bloomingdales, We had a wonderful time everyone so sweet. Our 2nd trip was 2 FAO anther favorite of Mia’s that time Mia’s father and siblings joined us what joy Mia that day. Some time passed and as always Barbara always kept contact with us asking how Mia was doing, now its December and it’s another get together with Candle Lighters at Bloomies another perfect event Mia loved it. It’s now Feb and Candle Lighters has another event at FAO it was the day before Valentines and Mia was all dressed up having so much fun, but tis time Barbara introduces us to Jamie, Mia connected with her in a second and that’s rare Mia never lets anyone play with her much less pick her up. We were all so happy it was an instant hit!!! Jamie and Mia now have a very special bond Mia calls Jamie “tati” how sweet Mia only calls “tati” who she feels comfy with. But the most important part of Candle Lighters and Barbara Zobian was when were had 24hrs in March to move from the Ronald McDonald House they told us that we could no longer stay and had to move out but could return in one week OMG!!! what was i to do with all of our things 7months worth, truly beyond words. GOD has been watching over us her sent Barbara, Jamie and so many friends our way to give a sense of HOME of FAMILY, we found a studio near by thank GOD and Barbara came to the rescue helping us move and settle in, i was so emotional during this time that Patrice a Candle Lighters member had Mia and i stay at her home so we could have a home cooked meal and Bed to sleep on since we had just moved in and nothing was delivered yet. I can’t express how thankful i am truly blessed THANK YOU CANDLE LIGHTERS you’ve given us so much support. we cant wait till another get together.

Oliver’s Story

As told by Mary Emerson-Smith….Grandma to Oliver Gant

“hi barbara, oliver is finally on the upswing after a slightly worrying few days. i brought the gloves over to jed this morning and spiderman will be visiting as soon as he and stacy think oliver can really appreciate his visit. thanks so much for making this possible. love from oliver’s family. p.s. and thanks so much from me as stacy’s mom for making her so comfortable in the hospital bed; the pillow and blanket make all the difference just as the angry bird cape is doing for oliver. i know stacy is “grown” but she is still my baby (third of three girls)!”