Cake #5,000 and the Voyage of the Rowand Family

Today we welcome Cher Bork, Development Manager here at Icing Smiles as a guest blogger to share her story.

Halfway through our 10,000 Miles, 10,000 Smiles journey we met Kylie and her amazing family. At 19 months old, sweet Kylie was diagnosed with stage 4 high risk, Mycn Amplified Neuroblastoma. On top of Kylie’s cancer, she was also diagnosed with Vasoactive Intestinal Peptide (VIP). At the time, Kylie was the only child ever seen with VIP in stage 4 Neuroblastoma. This vivacious, independent, free spirited, smart, happy, smiling, beautiful ray of sunshine who was always so full of life would begin a battle no child should ever have to endure.

Kylie’s parents had taken her to the doctor when they noticed swelling in one of her eyes. After a scan, the doctors determined there was a mass but hoped it was just an infection. After more tests, the family received the diagnosis. The tumor behind Kylie’s eye was just the beginning. Her main tumor was in her abdomen and attached to her left adrenal gland. There were also a dozen small tumors on her liver, over two dozen on her lungs, and boney lesions that spanned from the top of her skull all the way to her ankles. The bone damage caused her to be unable to walk or crawl. The doctors described it as an explosion of tumors that went off in her body. The cancer had also spread to her bone marrow.

The fight began with chemotherapy in the family’s home state of California in December 2013. Kylie was sent to New York by air ambulance after the 3rd round of chemo. Once there, a seven hour surgery took place to remove the main tumor in her abdomen, her left adrenal gland and 57 lymph nodes. The VIP made the surgery imperative. Kylie became very ill after surgery, and doctors did not think she would pull through. But she did. Again and again over the next 13 months, Kylie did pull through. She beat the odds over and over and proved the doctors wrong. She was not just a fighter, she was a warrior.

KyHospitalBed Ky&Larry KyGrandma

Kylie’s parents started a Facebook page to update family and friends since they were so far from home. They titled it Prayers for Kylie, God’s Little Warrior. As we began planning for Kylie’s 2nd birthday cake, we saw it would be our 5,000th cake and it would be on Mother’s Day weekend in May 2014. As we read the family’s posts and saw the photos, we fell in love with this beautiful girl and her incredible family. Kylie’s parents showed strength and faith that brought so many of us to tears. Each day brought more challenges for the family, more pain for Kylie, more determination for her parents, more miracles than doctors had seen. This little girl that none of us knew began to impact the lives of thousands and thousands of people around the world. She fought the monster that is cancer in such a fierce way. She was #KylieStrong, and everyone knew the power behind that.

Kyliescake The cake needed to be amazing of course, but we wanted to make it extra meaningful for Icing Smiles. We reached out to one of the top cake artists in the industry, Kate Sullivan of Cake Power. Kate created a cake for us in the very beginning that had been picked up by an amazing blog and really started the chain reaction that has lead to where we are today. This incredible lady once again offered her love and talent to create a special cake for Kylie’s celebration. It was the perfect cake! A cake that incorporated Kylie’s favorite stuffed animals, her “buddies.” At the base, Kylie’s beloved turtle. The cake was a true work of art.

When it was time to deliver the cake, Kylie was still inpatient. Delivering an Icing Smiles cake to a hospital makes it even that much more emotional for all involved. When we entered Kylie’s room, she was very quiet, in and out of sleep. She had taken a terrible turn a couple of weeks earlier and was very ill. This precious child we all had fallen in love with through photos was right in front of us, tiny and fragile but at the same time strong and alive with that warrior spirit you could see in her beautiful eyes.

We met Kylie’s amazing parents, Bree and Luke and another person who immediately brought a sense of peace to our own emotions. Larry, Kylie’s grandfather, welcomed us with such graciousness. He hugged us and thanked us. His genuine nature brought yet another smile for us. After presenting the family with Kate’s incredible cake, we sang ‘Happy Birthday’ to Kylie. Our beautiful friend Barbara Zobian with Candlelighters NYC sang a very sweet, soft version just to Kylie while we tried to hold back our tears. We were there to carry out our mission, but we left being the ones impacted.

For the next several months, we read the family’s daily posts with anticipation and prayers. We watched as Kylie struggled then rallied. She fought this beast that is childhood cancer with an army of warriors. “On February 7th, 2015, my sweet angel gained her wings. Jesus had finally called her home at 2 1/2 years old and after fighting for 13 months. Kylie won. She fought the good fight never letting it bring her down or take away her smile. She got the ultimate gift, to be cancer free living in heaven. We miss our girl more than words could ever explain, but we get by on knowing she isn’t suffering any longer,” said Bree ,Kylie’s mom. Bree has been a pillar of strength who inspired so many during Kylie’s battle and still does today.

We visited recently with Larry, Kylie’s grandfather. “When you folks walked in with that love that you call cake, it just elevated our emotions. It was so impactful for each person in the room. For a little bit of time, we got to enjoy a little bit of every day life.”

Even before Kylie earned her wings, the family fought for more research, more funding for childhood cancer and treatments. Larry summarized what so many families feel. “Everything that happens during this voyage, and that’s really what you have to call it, makes you feel so isolated. It’s all so new to you, and you feel alone.” He remembers the day of Kylie’s cake delivery. “It was one of the times that made an impact. The photos leave me with a lasting image in my mind of all of her little buddies so wonderfully produced on the cake. As tragic as it all has been, to see the love you all brought to us in the name of Kylie. It was just a wonderful moment. Thank you for what you did for my granddaughter. You brought love and warmth and a feeling that we were not alone.”

KyTutu Our hope is to bring this same feeling to all the families we serve. Thank you Bree, Luke, Larry and the whole family for sharing your beautiful little girl with us. To learn more about The Kylie Rowand Foundation, visit their website at kyliestrong.com and help finish Kylie’s fight.