Hi everyone,

It’s been a while since I last posted….  my apologies. I am not much of a writer, lol. I just wanted to give an update on Kyla’s journey. 

It has now been just over a month since her diagnosis. On March 24th, Kyla was diagnosed with Acute Lymphoblastic Leukemia (B-cell ALL) and spent 9 days in the hospital. She also tested positive for RSV, so she was already not feeling well. Her body had to work extra hard because she went straight into procedures, had several blood tests, and chemotherapy almost immediately after diagnosis.

She was discharged on her 14th birthday, April 2nd. The child life specialist decorated her room, and the entire pediatric floor gave her gifts. Before leaving, she finally got to walk out of her hospital room and see the beautiful view of the bay.

A lot of people have asked what happened and what were her symptoms. 

Kyla had been sick on and off since the end of February. It started with flu-like symptoms, so we took her to her pediatrician, who tested for RSV, Flu and Covid. All tests came back negative, and she said it was just a nasty cold virus. She rested and went back to school the following week, but by the end of the week she felt sore and very lethargic. 

She still pushed through everything. She had a PE test and ran a mile in 7 minutes, trying to be the only girl with the most sit-ups and push-ups. She came home so proud of herself. She also kept going to volleyball practice and spent her non practice days catching up on homework.

That weekend, she could barely get out of bed and missed her volleyball tournament. We knew something was wrong because she never wants to let her team down. She was just lethargic the whole weekend. The next week, she kept saying she was sore, tired, and that her knees hurt. We thought that maybe she was having a growth spurt and just overworked her body after having flu-like symptoms. 

On March 20th, she developed a cough but still went to school. The next day she slept all day. On Sunday, March 22nd, she seemed more like herself and had energy, so she went to CCD (church school) and had lunch with friends. But later that evening, she woke up from a nap with a high fever.

I knew something wasn’t right.

We scheduled an appointment for Monday morning with a pediatrician, since her primary doctor was on vacation. She wanted to test her for flu, COVID, and RSV again. While Free was on the phone with her, I told him to request bloodwork. I honestly thought maybe she was low on vitamin D or iron because she had low energy and just always sick. The doctor initially said she didn’t think bloodwork was necessary because Kyla was a healthy child, but we insisted. Thankfully, she finally ordered it.

That same day night, we got a message saying Kyla tested positive for RSV, so I thought that explained the fever.

Then the very next morning, on Tuesday, March 24th, at 6:30am, we gotten woken up by a call from a doctor in Roseville telling us to head straight to the ER. At first, he wouldn’t say why and was being vague. After asking for more clarification, he explained that Kyla’s white blood cells were elevated and looked “different”. They suspected leukemia, but needed to do more bloodwork to check. My heart dropped the moment I heard that word. I made the mistake of searching Google on the car ride. I had so many emotions but I tried to keep it in so I wouldn’t scare Kyla. 

We didn’t tell Kyla exactly why we were going to the ER, just that they wanted to redo her bloodwork. I felt bad to get her out of her bed. She was feeling so sick and had a terrible headache, while still fighting a fever.

Once we got to the ER, several doctors came in to speak with us. They told us we would be admitted and should expect to stay for a while. Everyone kept saying they “suspected” leukemia, but no one wanted to be the one to officially say it. Finally, we met her oncologist, who explained it was leukemia, but they were still determining the exact type. Around noon that day, we learned it was B-cell ALL.

“Leukemia - cancer of the blood and bone marrow”

…

The next day, on March 25th, she had her first procedure which included a bone marrow aspiration, lumbar puncture, and chemo in the spine. She also went from not knowing how to swallow pills to taking multiple medications every few hours. It was a lot for her, especially while also battling RSV. She mostly wanted to sleep. By the weekend, it was so nice to finally see her smiling and getting a little energy back.

Free and I took turns staying overnight because we also wanted to keep things as normal as possible for Drew. We are so thankful to Free’s parents, who helped so much by picking Drew up from school and keeping his weekly routine as normal as possible.

Drew knows Kyla is sick, but I don’t think he fully understands it yet because she still looks like herself. He knows she will get better and that we are all helping her. He was sad our vacations were canceled, but we reminded him everything is just on hold until Kyla gets better.

During those 9 hospital days, Free and I felt like we became unofficial oncology nurses, endocrinologists, and phlebotomists. There was always someone teaching us something new or talking with us. It was overwhelming, but we are so thankful for all of the nurses and staff who cared for Kyla.

Some of her nurses were ARMY (BTS fans). One nurse shared the same name as me (government name - Rachel Anne), and she played D2 college volleyball as a libero. Another nurse’s daughter also plays club volleyball, so there was always volleyball talk with Kyla. My aunties also know many nurses and managers there, and they checked in on us often. One even spent her break crocheting with Kyla. We are incredibly grateful to her nurses, all the pediatric doctors, and oncology team. 

Kyla is finally home, and we finally feel like we have a routine (but it’s going to change this week). I finally feel like the house is organized with no more random medical supplies everywhere. 

It has been a lot for Kyla. She has had more needle pokes in this past month than in all 14 years of her life combined.

She has been eating a lot during the induction phase, which has honestly been so nice to see. When we used to ask her what she wanted for dinner.. she would say “I don’t know.” So it was nice for once that she knew exactly what she wanted for breakfast, lunch, and dinner. Even after her last procedure, she woke up from her sedation and said “Korean corndog.”  I love that she gets excited about food.

Last week, she had her PICC line removed and replaced with a chest port. It makes blood draws, chemo, and procedures much easier, and she no longer has to worry about a line hanging from her arm.

Right now, we are at clinic every week for chemo, procedures, or blood transfusions, platelet transfusions… sometimes two or three times a week. We truly don’t mind because her oncology team has been amazing. We would rather have them caring for Kyla than go anywhere else that’s closer to us. 

She should be finishing the first phase of treatment and transitioning into the next phase this week. That means new chemo medications, weekly spinal taps, and likely some new side effects. She will also be done with prednisone, so the food cravings may slow down. Her doctor has warned us this phase can be tough and may bring a lot of nausea.

Despite everything, she continues to keep her spirits up and stay busy whenever she feels okay. She’s reading books, creating digital art, doing arts and crafts, and watching livestreams of her team’s games whenever they play.

A lot of people have asked about visiting or bringing food. We are so thankful for all the love. Unfortunately, Kyla’s immune system is very weak right now. We check her ANC weekly, which gives us an idea of how strong her immune system is.  If it is over 1,000, she may be able to have one or two visitors. Her doctor recommends masks and good handwashing for anyone who visits. Her oncologist’s favorite saying was, “If they think it’s just allergies, assume it’s not just allergies.” So we’ve been very vigilant.

Kyla’s treatment plan is 2.5 years long. The first 9 months includes no in-person school and no physical activity. We hope she can return to school for her sophomore year. During this time, we will also be limiting her from large events and crowds. Please feel free to call or text if you like to visit. If her ANC looks good, we would love to make it happen. But if you knew how I was during COVID, just know I’m the same way now….. maybe worse, lol.

This was a long post, but Free and I will try to continue sharing updates along the way since so many have checked in on us. Thank you for every message, prayer, donation, and act of kindness.

We truly can’t say it enough… thank you for supporting Kyla and our family.

She still has a long road ahead, but she is on the right track. 🧡