WELCOME TO OPERATION: KEY WEST

 Story of Cheyenne as told by her mother Kelly:

Cheyenne is no stranger to the hospital. Born at 36 weeks, 3 lbs. 14 oz., she entered the world fighting. In utero the found the the umbilical artery had a thrombosis. With an immediate admission and injections for me to help her lungs to develop she was born by an emergency C-section. Cheyenne only stayed in the NICU for 7 days, thankfully!

Before she was two Cheyenne was hospitalized three times for Reactive Airways Disease. After her third hospitalization they finally diagnosed her with Asthma. We moved to Illinois and Cheyenne had another episode taking us back to the hospital. A doctor at CHOW was concerned with her failure to thrive and ordered a bunch of tests and genetic tests to be done. In 2018 we learned that Cheyenne had a rare genetic disorder called Noonan Like Syndrome with variant in the CBL gene. This interpretation of Cheyenne's variant is pathogenic meaning likely condition-causing. This lead to numerous appointments with different specialists to be evaluated for things that she could possibly have associated with this disorder. Cheyenne had a dilated aortic root that we monitor yearly and that is the only biggest concern we found. The Geneticist we spoke with didn't have a lot of answers because this rarity with the mutation in the CBL gene isn't widely known yet. We had her tested in 2019 for juvenile myelomonocytic leukemia because individuals with this mutation are thought to be more likely to develop it. Thankfully it was negative!

On March 8th I took Cheyenne to the hospital for what I thought was a stomach bug and dehydration because she had been vomiting the prior day and having hallucinations. She complained a little of her stomach hurting but nothing that concerned the doctors. It wasn't until she had another hallucination that they decided to do an ultrasound of her belly. At that moment our lives changed for ever. We were told she had a very large tumor in her left Kidney. We were admitted to the hospital that night. The following day she had a CT scan. The results I was given was traumatic. I fell to my knees praying to God that he would be with her and my family as we navigated this. The next day she had a PET scan and to end the week a MRI. The results that were originally had changed after the scans to Wilms Tumor. Still very hard to hear but a blessing that it wasn't neuroblastoma. To be absolutely sure we came back the following week to have a MIBG scan. We found out at that time that her tumor had ruptured and it was considered stage 3. A biopsy was performed that week as well as a port put in. The histology came back favorable Wilms Tumor. We are still waiting for the LOH results.

Although, the LOW came back negative she did have a 1q gain. This means that the tumor can replicate faster and her oncologist wants to start her on a higher dose of chemotherapy so she doesn't relapse in the future. Her six week MRI scan is coming up to see how much the tumor has shrunk. Our oncologist believes the surgeon would want to have her finish the full 12 weeks of chemotherapy until she can have surgery. By June she will have a complete resection of her left kidney and radiation will begin along with chemo.

Beckett Euans’ story as told by his Mom, Kari Euans

“Beckett is 8 years old. He lives with his Dad (Chris—US Navy), Mom (Kari), and older brother, (Daniel). He is curious, adventurous, and affectionate. He loves to make jokes and he has one of those laughs that makes everyone around him laugh.

Beckett has had various medical issues throughout his life. Dad has been gone more often than not so he often can’t do much to support the family from afar. Mom has always been the caretaker of the boys but has had to rely on family, friends, neighbors and sometimes people she barely knows in emergency situations. For example, as Beckett was being transported by ambulance, Mom dropped Daniel off with her hairstylist because we didn’t have anyone else so she could get to the hospital.

When he was 6 weeks old, Beckett got RSV and had to spend 4 days in the hospital. Dad was out to sea again and Mom had to stay at the hospital...Daniel had to sleep on the hospital floor for the first two days. Because he was so young when he contracted RSV, his lungs didn’t develop as well as they should have. He developed childhood asthma and, for the next few years, the slightest cold could send him to the hospital. He even ended up in the PICU for a few days. Sometimes Dad was home, sometimes he wasn’t. 

As Beckett got older, he outgrew the asthma. He wasn’t hospitalized again for a long time. He was, however, seeing psychologists, psychiatrists, and occupational therapists regularly for other things (likely due to all of the medical trauma in his life). 

Shortly after the family moved to Virginia in 2017, Dad deployed for 6 months. Just before he came home, Dad was notified that he wasn’t going to be doing his next tour in Virginia as planned; they were moving him to San Diego. The transfer would require the family to sell the house, move, and create a new life in San Diego within a month. That in itself seemed impossible, but Beckett’s care team had just gotten set up in Virginia. Considering Dad wouldn’t even be home for months at a time, the family decided that Mom and the boys would stay in Virginia. 

In July of 2020 Beckett started having a whole new set of problems. We went to multiple doctors but none of them seemed very concerned. He was hospitalized in January 2021; still nobody was concerned. He was hospitalized in February 2021 and they said that was just a fluke. Finally, Beckett was referred to a GI specialist.

Beckett had his initial appointment with his GI in March 2021 & was admitted into the hospital immediately and scheduled for surgery as soon as they could get him in. It was during that stay he was diagnosed with Crohn’s Disease and his next journey begun. He began treatment immediately and, understandably was terrified for the first rounds but he has come to know and love his care team. He is currently considered to be in remission but will have to continue getting infusions every 6-8 weeks. 

The Crohn’s Disease has knocked him down from time to time, but it has never stopped him.”