Kylie Berry Kylie’s Journey

First post: Apr 2, 2019 Latest post: Nov 13, 2023
Kylie was diagnosed with Acute Myeloid Leukemia (AML) on Sunday March 31, 2019.  We started this site to keep our friends and family up to date on her journey.

We started noticing Kylie not acting herself on Sunday, March 24th. She was getting watery eyes, a swollen eye, and more stuffy than normal, so we assumed (since we are in Minnesota) that it was allergies, so we treated for that with allergy supplements. We didn’t notice much change throughout the week, her eye was getting worse, she was becoming less energetic, tired, and she was just not herself.

We took her in to her normal Pediatrician,  at New Kingdom Pediatrics, on Friday, March 29th. They had to perform some tests including: a throat swab, blood draw, and urine test. They said that they would have to send it in and would get us the results as soon as they could, which ended up being Sunday.

We were called by one of the nurses at New Kingdom Pediatrics who told us to go immediately to Children’s Hospital Emergency Room in Minneapolis due to a low hemoglobin level of 3.6. She also said to pack a bag. We took the whole family down.

Once in the Emergency Room, we checked-in and, since New Kingdom Pediatrics called in, we were seen right away. They did a blood draw immediately and within an hour we were informed that Kylie has Leukemia. At that point we didn’t know what type or treatment plans, but let’s just say that is NOT what we were expecting.

We were admitted to the Pediatric Intensive Care Unit (PICU) Sunday evening and have been there since. 

From what we know, so far, AML occurs 8x/year at this hospital and 500x/year annually nationwide. It is not the most common, but still for childhood cancers, so they have everything we need in terms of treatment here, which is awesome. 

For treatment, it is roughly 6 months initially and very aggressive compared to other childhood cancer treatment plans. In general, we will be here at Children’s Hospital for at least 3 weeks, then home for 35 days, then back in the hospital for 3 weeks, this cycle will repeat for 4-5 times over the course of those 6 months.

They say that most of the cancer cells will be killed off after the first month of treatment. The other months are to kill the cancer cells that are floating around her body undetected. With the plan come side effects. So, they said that she will lose her hair, get mouth sores, and be nauseated with the chemotherapy. Most of these we thought may happen, but weren’t sure due to the type of treatment.  Also, some of the drugs that they will be using, have long term side effects, but most are rare, so that’s good.