Chase was diagnosed on March 15, 2023, with Tcell ALL. Before that, he was sick with flu-like symptoms for 3-4 weeks. At the time of his diagnosis, Chase went through the placement of a chest tube, several spinal taps (which continue through treatment), a PICC line placement, seizures, a port placement, and kidney dialysis along with chemotherapy.
We were a busy family with travel sports, enjoying time with friends and family, and now we are more stay-at-home people to avoid crowds and the nasty viruses out there.
Chase is an outgoing young man, he just enjoys life and makes everyone laugh and smile. He loves sports, especially basketball and baseball.
Charlie had all the typical symptoms of leukemia (skin discoloration, frequent illness, nausea, vomiting, weight loss, irritability), but one of the worst was all the sleeping. He would nap at splash pads and places where he should have been having fun. He also started limping.
Cancer limits us a lot through neutropenia and infection risks, but he also did 60 days of constant port access where he couldn’t swim or even take a bath.
We had to move states to get treatment for him. We quit jobs, sold our business, quit my PhD program, and started over. We were split for a few months while we made this move and have had to build a new community all while battling this disease. We have three other kids and at diagnosis, my youngest had just turned 1, so we are all incredibly burnt out and trying to rebuild our family life.
On January 4, 2024 our sweet Ayla was diagnosed with Acute Lymphoblastic Leukemia. A rare type of cancer of the blood and bone marrow that affects white blood cells. This news came as a complete shock and is devastating and heartbreaking for her entire family. She first started with wanting to be held a lot and then lost her appetite. Her skin was starting to get pale and then got petechiae.
She got a port placed in her chest and had to start chemo treatments right away. Her chemo will continue once a week for the next 2.5 years and she will be on multiple medications. Ayla will have multiple bone marrow and spinal tap surgeries. It is going to be a very long road ahead for the Castro family.
Over the past 7 months Ayla has been receiving an extremely intense chemotherapy regimen known as Frontline treatment. We are very thankful to be at this milestone in therapy and now entering the last phase of treatment called Long Term Maintenance. The goal with this is to keep her leukemia in remission and it will continue over the next 1.5 years.
The road ahead is still long and difficult but we are so proud of our courageous and strong girl! She is the bravest warrior we know and a true inspiration of hope and power.
Luna had just had her third birthday when she was diagnosed with ALL. It was August 18th, 2022. There weren’t many telltale signs with Luna’s diagnosis. Looking back she did have a few fevers that came and went. Then one day we swam in our pool and she was limping but neither I nor her father had seen an injury. The next day she would not bear weight on her right leg and I rushed her to urgent care. She had several leg X-rays and the doctor there asked me if she was a “dramatic” child. We were told to follow up with our pediatrician the next day. Luna was all set to start preschool that day but instead, our pediatrician recommended we take her to the children’s hospital to be admitted. At this point, I still thought this was a leg or joint infection. Luna’s dad took her to the hospital because at the time I was still nursing our 8-month-old and we knew it was likely going to be an overnight visit. The next morning when I showed up with Luna’s siblings to the hospital they said oncology was coming to see us. It was like an out-of-body experience, but Luna’s MRI had shown a build-up of leukemic cells in her knee joint and they were causing osteonecrosis.
Luna has been through countless procedures. Because of high-risk cancer genetics and high levels of cancer in her spinal fluid at diagnosis, she is considered standard high-risk. That means more toxic chemotherapy and additional lumbar punctures. Writing can really never portray how traumatic these procedures are. Seeing your child be put to sleep and wheeled away is crippling emotionally and physically, but this has become “normal” for us. We have spent weeks separated during extended hospital stays. Anytime Luna gets a fever it is a life-threatening situation because of her port o cath and she must be taken to the ER. We even moved because our former home was so far from her treating hospital. Our lives have transformed completely. As her mother, it is hard to describe how difficult it is to not be able to protect her from this. It is like I am failing at what biologically I am meant to do, but I have had to make peace with walking her through this. As being there to hold her hand is really all any of us are able to do.
Luna has had to relearn to walk twice. She still has ongoing physical therapy and she takes chemotherapy every single day. There is no way to really account for the ways cancer has changed her life and the lives of her siblings. We were all forced to part ways with the life that could have been if she had never gotten Leukemia.
Luna is incredibly funny. She has a really unique personality and she just shines. I don’t know that she will ever understand how brave she has been forced to be. I’m incredibly sad that such pivotal years of her childhood have been marred by such a terrible disease but she is resilient beyond any hopes I could have. We are lucky to have her.
Natalie was diagnosed with leukemia on 10/5/23 at only 15 months old. We have been taking her to the Toledo Children’s Hospital for 7.5 months of treatment. She has about 2 months left and then she will start maintenance!
Before her diagnosis, she refused to walk anymore after she slipped one day in the kitchen in September. We took her to the doctor and she got x-rays but they couldn’t figure out anything wrong. She also had what looked like pimples on her face that then started to look like an allergic reaction. I had an appointment scheduled for the doctor to look at this but we were still a few days away from that appointment. Then she had a bunch of bruises on her arms, and the next morning she woke up with a fever, so I called the doctor right then and insisted we get in as quickly as possible. The doctor sent her straight to the hospital to be admitted. She was diagnosed the next day and had her port surgically put in the day after that so that she could start chemo right away.
Natalie had surgery the day after being diagnosed. She has had over 100 appointments since being diagnosed, plus she has had about 15 lumbar punctures done under sedation and tons of shots, plus lots of medications required at home.
I was already off work due to health issues of my own that I was trying to get sorted out before going back to work, so after Natalie’s diagnosis, her dad also had to stay home to help me because it was all just too much on me. So we have just been living on our savings and trying to get to maintenance so that we can try to get our life back in order.
