⁠

⁠

⁠

⁠

Orlando

⁠Orlando is a very polite 14 year old boy, full of energy. He is very smart and has always been a straight A student. He loves playing various instruments including an acoustic base, accordion, drums and his favorite, the acoustic guitar. During his many months in the hospital, Orlando entertained his nurses with his guitars.

 This is the journey of Orlando;

In July of 2023 the Romero family went on vacation to Puerto Vallarta. After a couple of days of having fun, Orlando became very ill. We took him to several doctors in Mexico but none knew what was wrong with our son due to lack of medical equipment. We went to different cities in Mexico and eventually found a doctor who told us that Orlando's blood work resembled someone who had leukemia. Devastated by the news we drove hours to see a hematologist in the city of Aguascalientes in Mexico. She confirmed that Orlando had leukemia and got him in stable condition so he could travel back to the US. We booked an emergency flight back to Chicago and took him to Lurie Children's Hospital. There the oncology team confirmed that Orlando had leukemia.

⁠Shortly after starting his chemo treatment, he was also diagnosed with invasive fungal disease in his sinus, Rhizopus sinusitis, that was in an advanced state. He was rushed to the operating room to remove as much tissue that was infected with the fungal disease as possible. For the next couple of weeks, the fungal disease kept progressing more and more and his doctors were not sure if Orlando was going to make it. Orlando's left eye became swollen from the infection and his left cheek became numb. After many surgeries and many attempts to stop the fungus, it eventually spread to his brain. On August 29 2023, Orlando had brain surgery where dead tissue was removed from his frontal lobes along with fragments of bone from his skull that were infected. For the next couple of days Orlando remained in intensive care. Eventually the fungal disease stopped spreading and his leukemia went into remission. After 3 long and uncertain months Orlando finally was discharged from the hospital.

⁠He continued treatment at home for both his leukemia and fungal disease. For more than one year, every day for 16 hours, Orlando was tied to a medical pole with his treatment. Not being able to return to school Orlando has spent more than one year without being able to leave his house. In February 2024, Orlando suffered from a seizure and after some tests. Doctors discovered that the area where he had his brain surgery was infected and he remained in the hospital for a couple of months for treatment. In May of 2024, our son's main doctor had really bad news. Orlando's leukemia had relapsed, but she had more bad news. A recent heart echo showed that his heart suffered an aneurysm from a recent blood infection. Orlando needed an open-heart surgery to repair the aneurism, but in order to perform the surgery Orlando needed to be off chemo for at least 6 weeks in order for his heart to heal. Which meant that without chemo his cancer would spread fast. Once again, our son's life was uncertain.

On May 15th, Orlando had open heart surgery and after a long 8 hours, his surgery was a success. Days away from Orlando's 8th grade graduation, Orlando was determined that nothing would stop him from being present and receiving his diploma. His doctors were amazed by how fast he recovered from his heart surgery and was discharged from the hospital. Orlando's determination paid off; he was able to attend his graduation ceremony.

⁠While his heart was recovering for 6 weeks, Orlando's doctors decided that the best treatment plan for his leukemia was CAR-T immunotherapy. In July 2024, Orlando received his CAR-T transplant, and shortly after went into complete remission. He goes to the clinic every week for checkups. Little by little his medications were removed, and for the first time in 18 months, Orlando was not tied to a medical pole. Orlando began to regain his life once more, unfortunately he will be marked for life from everything that has happened to him. To this day he has not regained his sense of smell from all the surgeries that he has had in his sinus. He is a true warrior!

⁠

⁠

⁠

⁠

⁠

⁠

⁠

⁠

Ella 

Ella was diagnosed with a Wilms tumor on her right kidney along with some smaller nodules on her lungs. She had her right kidney removed along with some lymph nodes. She did 11 rounds of radiation and completed that in February of 2023. She will have a total of 43 weeks of chemo. 

Ella is a very smart little girl. She knows how to spell her name and all her abc’s and can count to 20 all by herself and she is 3 years old. She is very loving and caring and loves to help take care of her 1 year old brother. She loves feeding him and burping him and just holding him all the time. She is very outgoing and has tons of energy. She loves to play on the slides at the park and ride her scooter and drive her pretend car. She loves dancing to music on the TV and could dance for hours. She also loves to play doctor. She is always taking our temperatures with her thermometers and checking our hearts with her stethoscope (which she has four of lol). She says when she grows up she wants to be a doctor. She loves wearing dresses and will wear them all day every day and even to bed. She is now starting to get into pretend makeup and loves to pretend putting make up and cutting people’s hair. Her favorite characters are Elsa, Minnie Mouse, Peppa Pig, Bubble Guppies and Bluey. Her favorite color at the moment is blue. She has the biggest heart and the most contagious smile and laugh. She knows how to put a smile on anyone’s face.  As of a July she has had clear scans and no resemblance of disease. Ella is still her bubbly self and always smiling.

⁠

⁠

⁠

⁠

Harper

Welcome to Harper's Renal Rumble! Harper is a sweet, caring, WWE Wrestling and ballet-loving 12-year-old. 

Harper has had breathing issues since she was 3 months old. That is what, in an ironically good way, got us to where we are today. Several months ago, her pulmonologist recommended a scan of her trachea to assess its condition. Surprisingly, the scan revealed her trachea has strengthened and widened. However, it also captured a concerning sight in her left kidney, prompting follow-up tests with a urologist. After several scans and a WHOLE lot of advocacy, we received the vague diagnosis of either a Wilms Tumor or Renal Cell Carcinoma, followed by referral to an oncologist—a moment we never expected to encounter as parents. 

Following an agonizing 48 hours of trying to reach the doctor for clarification after learning of our daughter's potential cancer diagnosis, we decided to take matters into our own hands. With the help of a cousin whose sister-in-law is a pediatric oncologist, we connected with a specialist at UIC and secured an appointment for further evaluation. Subsequent appointments and consultations with genetic specialists ultimately led to the decision that the kidney had to be removed.

In October, Harper had a left nephrectomy. About a month later we received the pathology results from her nephrectomy. 

She had Stage 3 Wilms Tumor. 

Within two weeks, Harper was at UIC having her port placed and receiving her first round of chemo. She has since endured six rounds of radiation and and is scheduled for a total of 15 rounds of chemotherapy. She had chemo weekly for the first ten weeks and now goes every three weeks with a projected end date of May 14th! 

Despite the upheaval in our lives, Harper has maintained her cheerful demeanor. She continues to pursue her passion for dance, eagerly awaiting the opportunity to audition for the Nutcracker again (she was supposed to perform last year, but the shows were the same week that her treatment began).

She cherishes moments with her younger sister, Paisley, who has been her steadfast companion throughout this journey. Harper enjoys reading, biking, and watching WWE wrestling with her dad, Drew (and attending live events whenever she can!). She also loves shopping, crafting, and visiting coffee shops with her mom, Ashley. She also treasures spending time with her grandma, papas, aunts, uncles, and cousins, as well as her friends, classmates, and teachers. 

The overwhelming support Harper and the rest of us have received from our family, friends, the community, and strangers—combined with the positive attitude that we have reinforced—has been what has gotten us through an otherwise treacherous six months.

⁠ 

⁠

⁠

⁠

⁠

Zepplyn

Zepplyn Jade Killmer born on July 20th 2022..From the beginning Zepplyn was a happy and giggly baby. She had the biggest personality and was constantly bringing us joy. One day she started sleeping more and we related that to her growing. However, soon after she developed a petechia rash. That rash led us to the ER and by the next day we had her diagnosis. Zepplyn was diagnosed with Mixed Phenotype Acute leukemia on April 6th 2023 at only 8 months old. This is 2 types of leukemia (both ALL & ALM) and it is both rare and high risk. Infant leukemia (leukemia diagnosed under 1) responds less to treatment and is more likely to relapse. Zepplyn also has the KMT2A genetic mutation that is considered unfavorable. With all of these factors in mind her diagnosis was daunting. We were told from the start that the odds were against her. However, God is faithful… Zepplyn went into remission after her first round of chemotherapy (induction) and she has stayed there since. Though she went into remission after the first round, intense treatment continued for a year… we were constantly in and out of the hospital. Zepplyn at one point went septic from burns on her bottom as a result of the “red devil” chemo. She had severe mouth sores that landed her inpatient. She had 104 fevers and severe nausea. She had 2 different blood infections… and so on and so forth.. Currently, Zepplyn is in maintenance chemotherapy where she takes chemo pills from home daily. She is thriving despite what she had to endure this last year. In every way, she should be delayed.. yet she learned how to walk while actively receiving intense chemotherapy, she talks more and knows more words than any 21 month old I know, and she continues to fight all odds. I would be lying if I said we aren’t constantly on the edge of our seat worrying about a relapse… we are

⁠

⁠⁠

⁠