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.”

 Story of Karlysle-Johannes as told his by Mom

“Karlysle-Johannes was diagnosed at the age of 2 with Acute Lymphoblastic Leukemia.  It all started with leg pain then 2 days later he was unable to walk at all.  Being taken to urgent care to find out that he only had 1/3 of the amount of blood needed in his body then being rushed to an emergency room to be told he either has cancer or aplastic anemia then to take another ambulance ride to a Naval hospital’s PICU was the most terrifying and longest day of his life.  He was then diagnosed with leukemia and treatment started but only more complications arose.  He received at least 5 blood transfusions, 2 platelet transfusions, and developed Posterior Encephalopathy Syndrome a very rare disorder that caused symptoms similar to a seizure, changed his mentality, caused swelling in his brain, and was all caused from his chemo and steroids but those couldn’t be stopped.  One of the hardest things for Karlysle was being hospitalized for a month he was always terrified of appointments and being in the hospital having so many medical procedures done scared him so much.  Either myself or his dad would be with him at all times to help him not be so scared and to get through it all.  One of the challenges we had to deal with was how to be with and care for our two sons.  While Karlysle was in the hospital needing us 24/7, our younger son, Cyprus, need medical care 24/7 due to him being diagnosed with Spinal Muscular Atrophy-Type 1 and having a trach.  Changing who would be at the hospital with Karlysle was always difficult as the one who was with Cyprus would have to drive to the hospital which can’t be done alone as Cyprus needs someone to sit with him in the back to suction his secretions as he can’t get them up himself and won’t be able to breathe, so we always had to plan for someone else to go with whoever was driving.  At this time my husband and I were lucky to have 15 minutes together each day.  There were many hurdles we had to overcome to find our new normal.  Finally after a month he was able to be discharged, then 2 months after being hospitalized, he was able to walk again.  Now due to many people trying to make the hospital a positive thing Karlysle loves and looks forward to appointments, he remembers riding in the ambulances as a cool thing, and enjoys seeing all the familiar faces on the Oncology Unit.  Karlysle has had to deal with more life changing events by the age of 3 than many people have to deal with.  This is just the beginning though as he has a long road ahead of him with treatment.”

 Story of Brighid Cloonan as told by Brighid

“Hello,

My name is Brighid May Cloonan. I’m 9 yrs. old. My Daddy is in the Navy. My Mommy stays at home taking care of me and our house. We have four cats: Samhain, Yule, Sassy, and Kitty.

I like to do craft projects with Mommy. We make jewelry, paint and color, and make dream catchers. Sometimes we sell what we make. We like to sing together.

Daddy and I cuddle on the sofa and watch movies. Sometimes we read together. Sometimes we play board or card games.

I like to play with my Barbies. I also play with my baby dolls. Sometimes I play outside with my friends. I want to be a police officer when I grow up.

I was diagnosed with leukemia in April of 2022. The doctors call it AML. I have been in the hospital since I received my diagnosis. So far I have had two rounds of chemotherapy, several bone marrow biopsies, and two lumbar punctures. I’m in the middle of my 2nd round of chemotherapy. I have one more round of chemotherapy to go through before I head to Philadelphia, PA for my bone marrow transplant. Three months in the hospital so far. At least three more months to go. I celebrated my 9th birthday in the hospital. I can’t wait to go home.”

 Atlas Sanford’s Journey as told by his Mom, Amy Sanford

“We are a Navy Family of 4. In March 2020, we were stationed in Iwakuni, Japan. We noticed Atlas had a fever and small pin-point bruises covering his legs when we were getting him ready for bed. I took Atlas into the clinic the next morning to get checked out. That same day I took him in to be seen, my husband/his dad (Aaron) was leaving for a 30-day detachment to Guam. After initial blood and urine samples, test results were inconclusive but alarming. The base that we were on was too small to get further testing done so Atlas and I had to be transported about 45 minutes away to a city hospital in Hiroshima for further testing. Medical personnel only spoke Japanese, so communication had to be done through a translator. Atlas was admitted to the hospital in Hiroshima before receiving his first platelet/red blood cell transfusions and more blood tests. Initial suspicion was that he had cancer, but we had to stay while diagnosis was confirmed from an outside lab. Aaron, my husband was sent back from Guam, and we spent two days waiting for him to arrive. Travel was delayed due to initial responses to COVID-19. Our daughter stayed with a friend on base until Aaron arrived because siblings were not allowed at the hospital and Atlas couldn’t be alone at the hospital by himself. We spent 4 days in Hiroshima hospital before being medically evacuated to Tripler Army Medical Center in Hawaii. After being medically evacuated to Hawaii, the nurses were very sweet and said that Atlas’ activity level was so high, that maybe the testing done in Japan was an error. We were still in shock and denial, and this gave us hope of a false diagnosis. The testing confirmed that Atlas had B-cell Acute Lymphoblastic Leukemia. We were devastated. On top of the diagnosis, we were initially told to pack for 30 days. Due to COVID-19 lockdowns, we ended up being in Hawaii for 6 months. Navy moves were shut down and the earliest Atlas was able to safely travel was August, so were stuck living in a hotel on Pearl Harbor while Atlas spent collectively about 3 and a half months in the hospital. We were in Hawaii from March 5thto August 15th. Most places, including the beaches, were closed so it was a very atypical trip to the dream vacation in Hawaii (We had never been before!). In August, we moved to Norfolk, and Atlas resumed treatment at Navy Medical Center Portsmouth. He has caught and battled COVID-19, which ended up hospitalizing him for nearly 3 weeks in April 2021. He has fought so hard and continues to fight with such grace, even at his young age. He will be finishing up treatment in July and starting Kindergarten in the fall.”