To provide a "voice" for military families dealing with a seriously ill child, where previously there was none.
Families like Cheyenne's...see their stories below.
From Cheyenne's Mom:
"...her smiles have continued since receiving her amazing gifts! It has been such a blessing and a little distraction for her. Cheyenne will have many things to keep her busy after her surgery. Thank you again for your love, encouragement and support." Please watch the video, thank you.
To learn more about Cheyenne, her siblings and her full story please below.
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.
Operation: Key West started with the simple concept of helping our military soldiers. Everyone involved with Operation: Key West are forever grateful and appreciative of all the brave men and women who serve or have served in our nation's military. We will always strive to bring some joy and happiness to as many military families as we can.
Most of our efforts are funded by our pharmacy savings card business, we would like to help more. If you would like to support us in our efforts directly you may do so using the link below to make a contribution.
Story of Brighid Cloonan as told by Brighid
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.”
Jackson's Story as told by his Mom:
"Jackson was a playful and energetic 3 year old until the fall of 2020. That's when we started to notice his energy level decreasing and he was unable to play and keep up with his older brothers. His skin was pale and lips occasionally blue. As parents we were starting to really be concerned when a diagnosis of pneumonia did not clear up after antibiotics. We were struggling to find answers until one night when we took Jackson to the emergency room. The next day after blood transfusions, we got the news. Heart stopping news, but thankful for an answer to what was causing him such discomfort. That was the beginning of our adventure with Jackson's fight with Leukemia.
Our family was there to support us in ways we never asked for before. Being a military family and living clear across the United States, we now needed them more than ever. Out next few weeks would be spent in the hospital focused on Jackson but we still had two other boys at home who were also processing this news and needing their parents. Grandma helped out with the boys while mom and dad drove back and forth to keep some normalcy at the home front. Once we were able to bring our warrior home from the hospital things started to fall into place. Our family was again under one roof and we had a new perspective on life. We came together and decided that Jackson was not in this fight alone and we would all be there every step of the way. Day to day life changed a bit due to constant doctor's appointments and frequent medications but we tried out best to toggle everything. Some months were much harder than others but with support from our parents, family, and friends we made it through. We have one more year left in this journey and things are starting to seem "normal". Appointments are further apart and are down to an hour rather than most of the day. Jackson has his energy back, eating great, and making friends within the neighborhood.
Our lives forever changed October 30th, 2020 but it has brought a bond within our family that has guided us through journey. Cherish everyday as we never know what tomorrow will bring.
James R, McGonigle, Founder and CEO of Help Soldiers, Inc., and Operation: Key West. For more click here Founder
How This Program Got Started - The idea originated on Christmas Day after returning home from Fort Belvoir where Help Soldiers sponsored a Christmas Dinner for those soldiers who were unable to go home for Christmas for whatever reason.
During this event, we were able to spend some quality time with Amy Altersitz, the USO individual in charge of events, and her combat veteran husband, Tom, who volunteers at the base. We heard part of their “story” which still remains with us. While Tom was serving in a combat area in Iraq several years ago, he learned that his 7 year old son had passed away. Hard to imagine the pain and helplessness being in a war half-way around the world and getting that crushing news!
We arranged to have lunch with Amy on our way home from Key West in February. We asked if she and her husband would allow us to “treat” them to a week in Key West. Her response was, and I quote, (a) “Are you serious?” (b) tears of joy/surprise and (c) “no one has ever done anything like that for us!” We took that as a “YES”!
"The military provides care for a sick child and their families until the child dies. The parents are then abandoned at a time when they need us most."
- Vice Admiral (Ret.) Harold M. Koenig, Former Surgeon General of the Navy
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