Diagnosis: Haemangioma
Kenna’s Journey…
When Kenna was six months old, her mother noticed a glow in Kenna’s left eye. It was not predominantly noticed in pictures. She just caught a glow in her daughter’s eye at unusual angles in the dark. She noticed it but did not think much of it because it happened infrequently. She thought Kenna had a “cool” eye. Within a week and a half, she noticed it more frequently. At Kelly’s parents house, Kenna was playing and lying on the floor, and Kelly saw Kenna’s eye glowing bright.
Kelly showed it to her husband Ryan who, like Kelly, thought Kenna had a “cool” eye. Once Kelly’s father saw it, however he told Kelly and Ryan that Kenna’s eye did not look right to him and suggested they have her checked in case it was something more. That advice from Kelly’s father would be the small but strong voice that would help them find their way to answers.
Kenna has dealt with Haemangiomas in her eyelid since birth on the same eye that was showing the glow. As they were going through treatment for Kenna’s haemangioma to reduce it Kelly thought the glow might have been somehow related to the haemangioma. It was only later that they would discover that the glow was, in fact, a tumor.
Kelly and Ryan went with Kenna to the pediatrician who said Kenna’s eye looked slightly different but nothing they would note as concerning. With no pictures of the glow to show the pediatrician, and with her as a squirming infant, it was hard to keep Kenna still enough to try to show the pediatrician the glow they’d been seeing.
Still, based on Kelly’s persistence thanks to her father’s concern, she was able to receive a referral to a pediatric ophthalmologist, and just two days later, they were seen and informed that Kenna was blind in her glowing eye and would need additional tests. The doctor was amazing and quickly referred them to the University of Minnesota Masonic Children’s Hospital where Kenna went through an MRI that indicated the presence of a mass in her eye. The family was told that Kenna could possibly have PHACE Syndrome (Posterior, Hemangiomas, Arteries, Cardiac/Coarctation, Eye). Since Kenna had hemangiomas, which can result in large brain implications and heart problems, they were concerned that this was the cause. They had additional imaging done and it was determined that the mass was not indicative of PHACE but was instead retinoblastoma, cancer of the eye.
Relieved that PHACE Syndrome was ruled out the family then braced themselves to manage through the journey ahead with retinoblastoma. Knowing that retinoblastoma is more treatable especially if identified early the family was both relieved and ready to help her tackle the problem and, working with Dr. Jill Anderson’s team at Masonic Children’s, the doctors immediately began to treat Kenna for retinoblastoma.
Within ten days, it was determined that she was a candidate for intra arterial chemotherapy (IAC) and treatment began. Because the chemotherapy through IAC was directly delivered to the eye, Kenna had fewer side effects than might result with other types of chemotherapy. Kenna had three chemotherapy treatments – once monthly for three months. The final round of treatment caused the surrounding tissue of her eye to swell and her eye became swollen shut. It took about six months for the swelling to go down. She still had a slight ptosis, drooping of the eyelid, that did not exist beforehand as the chemo did result in some damage but overall it was a very successful treatment.
The family later learned that Kenna had two additional tumors which were treated with laser and cryotherapy and she began regular check ups – first every six weeks, but now every three months. At each checkup she has an exam under anesthesia (EUA) there the doctors check for any additional tumors. As she gets older, the check ups will spread out and once she reaches five years of age, the check ups will no longer require anesthesia.
It was a remarkable “five days” from the day the family first went to the pediatrician to the day they found Kenna’s retinoblastoma diagnosis! The immediate action taken by the family to seek diagnosis and treatment for Kenna’s RB is a huge part of Kenna’s success story! The family was very lucky and fortunate for the straight path they were able to take which led to a successful outcome for Kenna. At KTG we hope to hear more stories like Kenna’s and are so grateful that the family knew to follow up on checking Kenna’s “cool” eye!
A Wonderful Wish for Kenna…
While Kenna was in the hospital for her chemotherapy, a hospital staff member told Kenna that she was entitled to make a wish through one of the organizations supporting the hospital. The family had two years within which to make their wish come true and they decided to wait a year before deciding on what their wish would be. During this time, Wishes & More (wishesandmore.org) had sent several post cards of encouragement to Kenna and her family which sparked the family’s interest in their wish opportunities for Kenna. The family thought about Disney World but decided that they would prefer to give back to other children and have a celebration for Kenna and a fundraiser for other children through Wishes and More.
Kenna is a very healthy, energetic child with an amazing success story and the family wanted to give back to other kids that were sick. Even though Kenna’s journey was scary and tough, it was successful and has led both to more parents feeling confident in checking out their child’s vision should they note the glow in their child’s eye and also in providing the granting of more wishes through their successful fundraising for Wishes & More, a local organization in Minnesota that helps children with life threatening conditions. The family chose to have a Carnival Celebration for Kenna and Wishes & More took care of it all!
The Carnival Celebration took place at Infinite Campus and the local news was there to highlight Kenna’s story, journey and success. The president of Wishes & More, Karla Blomberg, attended the carnival as well! The family invited family, friends and neighbors and together they raised over $10,000! It was an amazing turnout for an amazing cause!
Wishes & More also offers a Scholarship of $2,000 for each child to help celebrate their journey and in this wonderful case, Kenna’s success! The quick action that Kenna’s parents took from spotting the glow, getting a diagnosis, and starting treatment, all contributed to Kenna’s successful story.
The support of the community through its family, friends, doctors, nonprofit organizations and media is the stuff of storybooks! We’re delighted to share her story and look forward to watching Kenna continue to share her experience as a gift and a guiding light for others.
