Cancer? It couldn’t be real. Cancer is what old people have. Cancer is what sick people have. But my little brother? Five-year-old Gavin? That isn’t reality. But it was, and I quickly learned that things were about to change. 

Over the next few weeks, my grandparents would drive my siblings and me to the hospital so we could visit, but, other than that, Gavin was nearly absent from our lives, as were our parents. My grandparents became our primary caretakers for a while, which I enjoyed, but I still missed my parents. Gavin seemed to become the world’s top priority. Every conversation I had began with, “How’s your brother doing?” or, “Is there anything I could bring Gavin that he really likes?”. As time passed, a jealousy began to fester inside my heart. I began to resent my younger brother. As a seven-year-old child, my priorities were far from rational. I couldn’t quite comprehend the magnitude of our family’s situation. I was allowed to see Gavin only on his good days, when he was feeling well and able to have visitors. I wasn’t able to see when he was unable to sleep because of the excruciating pain in his legs or hear the terrified whimpers he uttered as he wondered what the next day had in store. All I saw was a little brat who never had to go to school, was treated well by everyone, got all the attention and support of my parents, and had boxes of toys by his bed that he didn’t even want to play with. I remember being deeply resentful because of how many of his gifts were from people he had never even met. Why was he valued more than me just because he was sick? He already had everything I ever wanted. At that time, I perceived the value of my life as being determined by the amount of candy I could eat and the frequency that cool things were given to me. I had no concept of the value of human relationships, nor did I acknowledge the privilege with which I had been blessed. 

Eventually Gavin started to get better, but my opinion of him did not. I still viewed him through jealous eyes, but as I continued to pity myself, I noticed that Gavin never seemed to be upset in the same way that I was. He had a genuine happiness to be at home with my siblings and me–and he wouldn’t leave my side. I began to understand that Gavin had never cared about the superficial things that I did. During his ordeal, he would have traded it all to be able to play with me. I slowly learned that the things that I had been obsessing over were worthless, and my companionship with my brother was far more valuable than I had realized. 

Today, I am an entirely different person than that jealous kid. I have learned not only to appreciate what I have but to also give to those who are less fortunate. Gavin and I are both volunteer swim coaches on a Special Olympics swim team, and we mentor at-risk children weekly. I have devoted the latter half of my life to serving others, and I love every bit of it. I am filled with a more genuine happiness than I ever really was from material things, and all of this is because of Gavin. Sometimes I wonder if maybe this was God’s plan all along. Maybe the reason Gavin was forced to go through that was partly directed toward my betterment. Either way, I have grown tremendously from what used to be the worst days of my life. 

This essay written by Quinton Carr, Icing Smiles super sibling and former cake recipient.

Payton has an aggressive form of spinal degenerative disc disease, as well as many other additional challenges she faces. She has spent a majority of her last 3 yrs in high school either in the hospital while also being under very intense home treatment plans. She lives with pain constantly, it is a constant companion. Education has always been very important to Payton, she has high goals of attending very competitive universities to study music performance and ultimately to become a music therapist. Music has helped her through every step of her journey, and she also gives music lessons to kids in the neighborhood who wouldn’t be able to do so otherwise.

Payton had earned her HS diploma after her sophomore year, but decided to stay with her friends and go into the IB program. It was shortly after she was rushed to the hospital in severe pain, not being able to walk or stand straight. She could have chosen at that point to choose a different route, as she spent so much time in the hospital and doing things as simple as her hair or makeup were now things that took hours. In order to be able to make it through the day, she had to spend lunch everyday in the nurses office resting and using heat. As a social girl, this was another sacrifice. Most students didn’t know Payton was as ill as she is-she has always chosen to be upbeat and positive and didn’t want extra attention.
The end of her senior year was extremely challenging, however she still chose to do whatever it took. She was in severe constant pain, was losing feeling in her legs and had developed extra fluid on her brain and optic nerve pressure that left even her vision a constant struggle. But she made it!

The BEAUTIFUL cake that was made by Hallena Hinkle of Amazing Bakes was nothing short of a work of art! Having it directly led to Payton wanting to have a celebration open house following her graduation. It set the tone of exactly how special the day was and gave the extra inspiration to really celebrate the day. The cake was SO much more than just a cake. It was love and support and countless hours of time spent to help celebrate an occasion most thought she would not get to (in the traditional way she wanted to). Everyone took pics of the cake. It truly was the center of the celebration. It really reminded Paytonwhat a big deal the accomplishment is, and that she was worth celebrating.

The genuine kindness and care from Hallena is something none of us will ever forget. We have always been a family who celebrates everything and anything. However, with all of the demands of an illness such as Payton’s, we have just been too tired or busy. This gift really reminded us how important it is to not only be grateful but to celebrate again.

We are a big pay it forward family… even in the hospital Payton is always making blankets, beanies for the babies, giving piano and vocal lessons, and this amazing gift really helped her to understand how it feels to be on the receiving end of the service. What an amazing organization and an amazing Sugar Angel we were blessed with! This changed us all, as well as the many, many people we have shared the story with… and it was DELICIOUS!

There aren’t proper words to describe what an amazing experience we had. This beautiful cake spurred us on to have a full open house for the graduation celebration. It changed so much! And it was fun to hear Payton say how the cake was so representative of her life-the outside was all smooth and beautiful, but the inside was rough and full of the hard things she had to overcome, while also being beautiful under pressure.

When I was 19 weeks pregnant we went for our routine anatomy scan to find out the sex of our baby. My husband and I had setup a nursery, had washed all of our son’s clothing and lovingly folded it into drawers…we were ready, we had everything we needed, we were prepared parents. We had done everything we could do to ensure a healthy baby: taken prenatal vitamins, ate healthy meals and followed all advice of our OBGYN. During the scan the ultrasound technician excused herself and when she re-entered the room she was handing us the phone and said there was a doctor who wanted to speak to us. The doctor told me that there was something wrong with our son’s heart, it was not fully formed. We were completely shocked, nobody in our family has had a heart defect or any defect that we had known about the other two older kids were healthy kids.

After the initial shock there followed several appointments from Maternal fetal medicine, multiple tests were done, second opinions in Boston were done, and many fetal echocardiograms were done along with stress tests and other labs and genetic testing. After this we were given a grave diagnosis and bleak outcome. Our cardiology doctor told us that they did not feel our son would be a candidate for the type of surgery he needed on his pulmonary branches because the rest of his heart would likely not hold for the surgery needed. We were told that once our baby was born he would likely not survive but that they were going to try and do everything they could do. Our son had 4 congenital heart defects, Pulmonary Atresia, No bottom right ventricle, no branches to the lungs and his heart was backwards in his chest, he also had a VSD as well as Heterotaxy. Our options were to have a medical termination of pregnancy or to carry to term and hope for the best possible outcome.

We went with the latter and when Noah was born into the world he came FIST FIRST ready to conquer it all. The first fetal echo showed he actually did have the branches to the lungs making him a candidate for surgery. After his first night he had troubles breathing and was incubated, day four he had his first of three open heart surgeries placing a shunt in his heart. Noah coded and was resuscitated the night following his surgery, went into full kidney failure and we were told we needed to say our goodbyes yet again.

Noah had continued his brave fight and battled hard to stay with us. We stayed 109 days in the PICU. Noah continued his fight with breathing struggles, respiratory distress, poke after poke, test after test and every time he opened his eyes he still smiled through it all. Noah had a strength inside of him that was bigger than himself a strength that gave even us as parents hope.

Once Noah was able to go home at 3 months old after he was put on a ventilator and received a tracheotomy, he continued to meet every challenge head on, from milestone to milestone he had a can do attitude and wanted to try. Learning to sit up, learning to crawl, learning to walk all were things that he tried to accomplish despite being attached to tubes and equipment every day of his life, Noah was determined to find a way around them. He would smile and light up the entire room.

At 10 months old we said goodbye again to our warrior sending him off to surgery for open heart again this time for a Glenn procedure… trusting the surgeons, doctors and nurses to protect and help our son, we said our painful goodbyes not knowing if it would be forever or not. Noah again fought through that surgery and won, going home after just 5 days that time.

Since that second open heart surgery to now, Noah has learned sign language, learned to fully walk, learned to pull his wagon carrying his vent around behind him. Noah has learned his colors, his animals and even how to joke and play tricks on his family and nurses. Noah does not give up easily and he refuses to fail time after time, giving all of those around him a feeling of hope.

In just a few months in September Noah faces a risky surgery known as the Fontann. It is risky for him being that the ventilator is not as compatible with the surgery that he needs. We are hopeful that Noah will continue his fight for his upcoming surgery and hope that he will stay the brave and strong courageous boy that he is for many years to come.

Through each step of this our son Hayden and our daughter Mckenna have been a huge support for their little brother and have made huge contributions to his quality of care and life by always making him smile, learning how to help with his cares and all of his medical issues. They deserve recognition for all that they do as support for their little brother, it is not easy to live life with a hospital room setup in the living room, the beeping of monitors and the need to help with a fragile little brother. They have learned sign language to communicate with their brother as well. So often these siblings go without recognition and we are so grateful that this time our son Hayden was given the opportunity to be recognized on his birthday! This was so special for him!

Hayden’s cake was provided by Sugar Angel Christine Leaming in Spokane, Washington. Thank you Christine for all of your hard work and dedication to Icing Smiles. We look forward to seeing more “smiles” from you in the future!

Emma was born on March 18th, 2011 . She was an absolutely perfect, healthy baby girl at 5 lbs. 8oz. Like her twin brother brother, Emma met all of her early milestones on time. She rolled over, sat up, ate solid foods, crawled, clapped her hands, passed objects from one had to another, used a pincer grasp, pulled to a stand, fed herself, held her own drink and began cruising around the house. She absolutely delighted in stealing toys away from her brother, especially his pacifier.

At a year old Emma was suddenly no longer keeping up with her brother. We took her to doctors that told us to “wait and see” and that “all children develop differently” but we knew something was wrong and pushed for our daughter to be enrolled in Early Intervention. Through Early Intervention Emma continued to make gains, she was crawling through tunnels and walking up slides in our homemade therapy gym. The doctors all believed that she was just “low tone” and that she would eventually catch up.

The first signs that something was terribly wrong began at 19 months, in October. Emma started doing a repetitive movement with her left hand. None of her therapists or doctors understood why she was doing it. We contacted a neurologist and he said it was a “stereotypy” and that they can stop as suddenly as they start. None of the doctors seemed that upset by it and their calm eased our fears. Briefly.

By 22 months is was painfully clear that this was something much, much worse than a benign stereotypy. Emma suddenly began retreating into her self. The little girl that we loved was vanishing before our eyes and we were helpless to stop it. She stopped making eye contact and playing with her siblings. She no longer spoke or made any sounds. She stopped reacting to noises, people and playing with her toys. She stopped enjoying being held and reading books. We thought she had gone completely deaf. She never smiled all of her joy was gone. The rhythmic motion with her left hand became constant.

Doctors began MRIs and genetic testing and we began to review our family histories and questioned our families looking for previously unmentioned genetic disorders that could be the cause of out little girls troubles. There were none. No one on either side of our family has had a genetic disorder of any kind. We though we were in the clear, because, what were the chances of having a completely random spontaneous mutation?

The chances were 1 in 20,000. A .005% chance that it would be Rett Syndrome. The odds were not in our favor. It was Rett Syndrome. A disorder we had never heard of and terrified us. We were praying for anything but Rett, but our prayers were not answered.

The doctors called me at work and gave me the news over the phone. I had to leave work and I cried all the way home. We were devastated by the news. I did not want to cry in front of Emma so I dried my tears as I walked though the door. I picked her up, held her close and promised her that everything would be okay and it has been. Emma suffers from seizures, scoliosis, central apnea, chronic pulmonary issues and is unable to walk, talk and has difficulty using her hands. We face many challenges but we are thriving as a family.

Emma came out of her regression she began to return to us. Her laugh and smile returned, she makes better and better eye contact, she is learning to use her communication device and she loves to play with her siblings. Emma is a beautiful little girl who shows us the true meaning of strength, patience and unconditional love everyday. She is full of life and love.

Emma’s cake was provided by Sugar Angel Adriana Vela with Adriana’s Pastries in Chicago, Illinois. Thank you Adriana for bringing a big SMILE to Emma’s face!

So much goes into the baking and creation of a truly great cake. We all know by now it’s not just about ingredients and oven temps and sprinkles. In addition, to all the things you need to make a cake, it takes someone with the heart and soul of a true baker to produce a confection of exception.

Donna Sullivan of Flemington, NJ, is that person and was recently recognized as winner of this year’s Icing Smiles Best Cake Ever Contest for her artistry with a cake she called Little Red Riding Hood. Her submission was made out of hand-painted gum paste.

“The wolf eyes were painted directly onto the top tier cake and the tree on top was made from modeling chocolate,” Donna explained. “The background diorama, depicting the moon and night sky, were painted directly onto a sheet of gum paste which I dried over a cake dummy in order to get the diorama effect. I was very happy with how the hand-painted elements turned out.”

The Best Cake Ever Contest, sponsored annually by Icing Smiles, has been a fun way to show off one’s confectionery expertise and help a great cause for the last several years. Participants enter their cakes and then engage with their community to promote it, get votes and raise donations for the Icing Smiles mission. “Seeing my cake on the leader-board was exciting,” said Donna, who recently got her first call to action to create a Dream Cake for a little boy in Princeton, NJ.

Donna said she was very much looking forward to her first experience working with a family and is honored to be part of the Icing Smiles team. “I became involved with Icing Smiles immediately after I became aware of the organization through a New Jersey based cake group I joined. The minute I heard what you do, (as a Sugar Angel) I knew I had to volunteer my time,” explained Donna. “My feeling was that, if I could use my skills to make a child feel special and bring something joyous and positive to his/her day, then any amount of time or effort would be more than worth it. I felt it was a fine way to do something good for others. It’s a small but wonderful thing I can do to bring happiness to someone else.”

Donna also shared her thoughts on the contest experience. “Everyone I spoke to, during my fundraising campaign, echoed the same thing and loved the idea that an organization such as this exists!”

Donna, who was also selected as Baker of the Month, set an initial fundraising goal of $1,000 and more than doubled it, ending the contest with $2,205 coming from 68 separate donations! She was awarded a trip to The America’s Cake Fair in Orlando (generously provided by sponsor Chef Rubber) and the opportunity to train one-on-one with Beth Townsend, a Satin Ice Artist of Excellence, Food Network Christmas Cake Wars Winner and owner of Cake Pro Shop.

So, who will be the next to enter and win our Best Cake Ever Contest?!

There is a saying about work and life that certainly applies as we welcome a new Assistant Director to the Icing Smiles team: If you want something done right and done well, give it to a busy person.

There’s no doubt that Karen Griffiths of Golden Valley, Minneapolis, is that busy person. Icing Smiles is so excited to welcome this UW Madison grad with her extensive background in journalism, advertising and media to the team. Griffiths, who will be working with Operations, Sponsorship and Outreach in her new role, says she has been excited about Icing Smiles since she had the opportunity to meet founder Tracy Quisenberry at a trade show in 2012.

Griffiths was representing American Cake Decorating Magazine in their trade show booth which was positioned next to the Icing Smiles booth. Once meeting Quisenberry and learning of the Icing Smiles mission, Griffiths was convinced she needed to find a way for the two to work together. “I went back to my boss at ACD and said that [they need] to support this cause. I arranged free ads in every issue of the magazine and started the Baker of the Month program on the ACD website.”

So, here’s where the really busy person part comes in. Griffiths is currently working as a contract media planner and buyer for the American Craft Council, a leading arts nonprofit that cultivates the culture of making. “I help promote three of the four craft shows they hold around the country every year,” says Griffiths, who is no stranger to volunteer endeavor.

Previously Griffiths has been a member of the Junior League of Minneapolis where she was in charge of their newsletter one year and also held the position of vice president another year. The proud mom of two grown daughters, Griffiths was always in the thick of things at their school with all their sports programs and activities, which included tennis, golf, softball, and dance. She culminated their time in high school as President of the Parents’ Association.

How is Griffiths feeling about her new role as Assistant Director? She says she looks forward to two things in particular: working with the amazing volunteers that are a part of Icing Smiles, and working with some of the contacts she made when she was working in the cake industry. “I have never met a group of more passionate and caring people,” she says of the Icing Smiles team.

When it comes to the challenges ahead, Griffiths references one of our upcoming events. “I’m still not able to make it through a Buttercream Ball without crying,” Griffiths says. “Seriously, as I start working with all of the passionate volunteers, I take on the challenge of meeting you to discuss your great ideas and to thank you individually.”

Personally, home in Golden Valley is shared with husband, John—her high school sweetheart— and she is enjoying seeing daughters Lexie and Carly as they now carve out lives for themselves in the fields of teaching and nutrition, respectively. Griffiths, who describes herself as caring, brave and funny, admits finding time for hobbies remains a challenge. “I love to read, cook and recently learned how to lawn bowl. I’m hoping someday to continue playing the piano, learn the guitar and knit!”

We have no doubt her musical and maker goals are well within reach. Welcome, Karen!