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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!

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Tahlia 

⁠Tahlia was diagnosed with stage 3 diffuse Anaplastic Wilms tumor, a rare and aggressive kidney cancer. Prior to diagnosis she was exhibiting no signs of illness other than a hardened area in her abdomen, which was first attributed to constipation. Tahlia had surgery to remove the 13 cm mass with her kidney along with several affected lymph nodes. The following week she underwent another surgery to remove an ovary and have her port placed to start her first of 42 weeks of chemo. We celebrated Tahlia’s 3rd birthday just a few weeks after her cancer diagnosis. A huge birthday parade was organized and included a wonderful community of friends, family, neighbors in decorated cars along trucks from local police and fire departments. There was even a tractor, a go kart and a bus which took her and friends on a ride around our neighborhood. It was an uplifting and encouraging event for everyone involved, especially Tahlia.

After 16 weeks of chemo and 11 rounds of radiation, Tahlia continues to be an active spirited child. The long hospital days can be challenging for Tahlia and family since activity in the small rooms can be very limited. Having access to the hospital playroom has helped break up the day, and we have learned to pack lots of favorite snacks and toys. Tahlia likes to be involved in her care at the hospital and has learned a great deal about the various procedures such as  taking vitals. Like many children who are in the hospital frequently, she enjoys playing doctor and giving exams to her dolls and stuffed animals. She has an incredible imagination and enjoys reenacting fairytales and making up silly songs. Tahl also enjoys being outdoors. Short hiking trips and playing in the park make her very happy so we look forward to the warmer weather.

Tahlia had attended a wonderful preschool for a few months before her diagnosis. When she began her treatments and was not able to continue school, she missed her friends and teachers and was so happy to receive cards and well wishes from all the students at the school. Her teachers and the preschool families have kept in touch which greatly encourages all of us. Our biggest support comes from family both here and out of state. We are so very grateful for their love and many kindnesses.

We are still very early on in Tahlia’s journey and feel blessed that, so far, she has handled the multiple surgeries, radiation, chemo and hair loss remarkably well for such a young child. At this point, she is tolerating all the medications without many side effects. We know that there is still a long road ahead, and that Tahlia may face new difficulties with her treatments. We are thankful for the good medical care she is receiving and hope that Tahlia’s positive attitude and ability to handle all the treatments will continue.

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Taylor

After experiencing knee pain and swelling, Taylor Florey was diagnosed with osteosarcoma, which is a bone cancer in August of 2024.  Days after her diagnosisis, she had to get surgery to have a port placed into her chest to begin chemotherapy treatments.  Since August, she has gone through four rounds of chemo, each round consisting of five chemo transfusions.  In November, she was able to pause chemo for three weeks to undergo a surgery to remove the cancerous tumor, part of her femur, fibula and tibia were then removed along with the tumor and replaced with a metal to reconstruct her right leg.

Taylor is now beginning physical therapy to learn how to use her new leg and will soon be walking around again like normal.  She has four more months left of chemo and cannot wait to be healthy in time for summer.  She is planning on going to community college in the next year and is transferring to the University of Iowa to study business in 2026.  

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