All-Star Lilyana

Lilyana and her parents, Eric and Aida, live in California. Before she was diagnosed with Acute Myeloid Leukemia in May of 2023, Lilyana was a typical three-year-old, completing her preschool year.

“When she was one-year old, her primary doctor was concerned about possible leukemia after receiving the results of a standard blood test to check for lead,” explained Aida.” The results from a subsequent blood test showed white blood cells slightly higher than the normal range, but the doctor was not concerned, thinking it was just an infection. Now we wish that we had questioned that opinion, but of course, we trusted the doctor.”

Family life continued as normal; Lilyana was a happy little girl making friends everywhere she went. Her mom said she was generally fine until she stopped breastfeeding and started pre-school when she was two and a half. Then she started having more colds than other kids and when she did, the teachers noticed she produced more mucus as well. Aida brought it up to their doctor, but again the doctor didn't seem too concerned. This continued throughout the entire school year.

In the middle of May 2023, Lilyana was very tired. Her fatigue grew worse to the point when she was spending most of her time sleeping after school and she was also uncharacteristically grumpy.

“I noticed a small pink pimple on her belly which started looking more like a bug bite. It had a dark center with surrounding swelling and redness about the size of a quarter,” said Aida. “We took her to several doctor appointments spaced a week apart, and she was given antibiotics each time. They thought it was an infection. She developed recurrent fevers and complained of pain in her legs. We visited the ER multiple times, still, there were no answers. Finally, the doctor told us to get Lilyana’s blood drawn.”

Lilyana’s white blood cell counts were very high, which all pointed towards leukemia. They were sent straight to a different hospital and Eric met them there. “I was feeling completely shocked, scared, a deep sadness and worry, all those things at once. I felt powerless.”

Aida had also just found out a few weeks before that she was pregnant with their second child, which of course filled them with joy. There was a lot going on.

At the hospital, they did more tests. They put her on an IV to flush out the white blood cells. Biopsies were done and sent off to other hospitals. The family received information in stages, yes it was leukemia, then that it was Acute Myeloid Leukemia, and finally the specific mutation.

Lily was constantly being poked and with that brought fear for her. She had a port in her left arm for the first month and then a Broviac central line. Lilyana never knew what was going to happen to her next. Her diagnosis was one of the worst kinds of leukemia, resistant to treatment and very rare.

The family ended up spending 90 days in hospital. Aida stopped working because Lily was so sick. Soon Eric also took off work to support his wife and daughter at the hospital.

Finances became another big source of stress because of this. “We started worrying about things like our mortgage,” said Aida. “We had to re-evaluate our budget, but there was only so much of our expenditure that we could control. At one point with us both not working we were not getting any income at all. We received help from our parents and a couple of foundations.”

The family received an Orange Envelope from Pinky Swear Foundation after her diagnosis. “We used the gift cards mainly for the gas that we needed to drive back and forth to San Francisco. There was also a little note for Lily that she liked.” They also received toys from other folks, which were welcomed, but voiced that what they really needed was financial support.

After 90 days, Lilyana spent a couple of weeks at home, then she was transferred to San Francisco for a clinical trial. Eric had gone back to work for a while, but then had to take a month off unpaid while they were in San Francisco. Both parents exhausted their sick leave, then FMLA before not being paid at all.

“Then we received notification that our mortgage will be paid by Pinky Swear Foundation in January. That felt amazing, it was such a relief not to have to worry about our house payment for a while. It’s hard to explain; it’s really helpful in terms of lifting the financial stress, it means such a lot, the support and the help,” said Aida.

For families with kids with cancer, choosing between work and caring for your child is impossible. “I can’t imagine not being with my child now that she is going through all of this. Loving her is peace. Her dad has taken the time that was available to him off to help us. That was much needed for our family, but going back to work intermittently was a necessity for him to keep some financial income,” Aida said. “His parents gave us some money and I’ve applied for and received gift funds from several organizations as well, yours being one of the biggest supports. That is why your organization is invaluable to families like ours. It’s not possible to live a normal work-life and your financial support has been key in allowing us to have some financial relief and emotional room for our daughter. Thank you for everything that you do and continue to do. It means more than I can explain.”

For now, she is doing ok taking her chemo medication at home and will soon have another biopsy. She can’t go to school and relies on an online group for kids with cancer as her social outlet. The family feels lucky though to have her at home with them where they can focus on taking care of her and one another to the best of our abilities.

Lily’s baby brother was born in December of 2023. Lily’s diagnosis and treatment affected the pregnancy and added a lot of stress. “The hormones caused anxieties about both the kids,” said Aida. “And we are going to have to adjust when the baby comes, but it’s also going to be exciting for all of us.”

Lilyana is a highly curious, social, talkative, energetic, and affectionate little girl. She loves all kinds of activities, especially pretend play as a mail person, or a doctor or nurse. She likes to write postcards and pretend to mail them. She loves Bluey, Peppa Pig and Paw Patrol, cats, and her bedtime routine which includes singing songs and reading books.

Sadly, Lilyana passed away on March 29th, 2024.