The week after school ended in 2018, Shiloh began to run a low-grade fever of about 100. I took her to the doctor, and it was thought to be a cold. I continued to monitor her temperature and three days later, it was still floating at 100. I called the doctor again since we were on day 8 of a fever, and they told me if it didn’t come down by Wednesday, we would do some blood work. She also had some swollen glands in her neck, which they still associated with the cold. On Tuesday, she had glands on the side of her face swell up too, so I called and they saw her that day. The doctor decided to run some blood tests to check for mono and some other stuff. An hour later, I got the phone call. The doctor informed me that Shiloh’s red blood cell count was at a 4 (normal is 12), so she was anemic and needed a blood transfusion. We were sent to Hershey Children’s Hospital that night.

They ran more blood work at the hospital and checked for some other things, and the tests turned up positive for parainfluenza. Initially, the doctors were hoping that the flu was causing her red blood cell count to be lowered, but something still wasn’t looking right. On Thursday, they asked to do a bone marrow biopsy to check for cancer. We got the news Thursday evening, and the next few weeks ended up being just a whirlwind.

Shiloh’s official diagnosis is B-cell Acute Lymphoblastic Leukemia (ALL). What is it? ALL is a type of blood cancer. Your blood makes three kinds of cells: white cells fight infection, platelets are for clotting, and then your red blood cells. When you have ALL, there is a cell that gets mutated and is the cancer cell, which then begins to make more cancer cells. Doctors do not know what causes the cell to mutate, and there are no genetic factors at this point. Since these cancer cells are taking up space in the bone marrow, your bone marrow cannot make the correct number of other cells. In Shiloh’s case, the cancer was not allowing her to produce the correct amount of red blood cells.

On Friday, Shiloh had a port surgically put into her chest for her to have blood withdrawn through and to get her treatments. They began chemo as well when she was in surgery. She started a high dose of steroids taken orally. This was cycle 1.

Cycle one consisted of 1 month of hell. Oral meds daily, weekly trips to the hospital for blood tests, spinal taps to inject chemo, and tons of terrible side effects of steroids: this pretty much sums it up. She gained 6 pounds in three weeks due to the steroids making her extremely hungry. The last day of cycle 1 consisted of a bone marrow biopsy to see how the steroids did to get rid of the leukemia cells. The goal is to have under 0.01 cells left. Thankfully, the cancer cells were measuring lower than 0.01.

We were happy to begin cycle 2. She was still taking an oral chemo and had three spinal taps this cycle, but things had gotten much better. Steroid side effects were gone, and Shiloh’s weight had come back down to normal. Shiloh was starting to figure out how to take oral medication without being held down and forced to. Her energy level had increased. She had become our little girl again. She started daycare in August of that year, and was able to attend until October when she entered a tough cycle called delayed intensification.

Shiloh lost her hair during delayed intensification and had to stay home. Her immune system was compromised and near the end of October, she got a cold. She had to stay in the hospital for 2 weeks and we ended up shaving her head during this stay. Her hair was just falling out in handfuls.

Thanksgiving of the first year was the worst. She had received a very tough chemo and ended up throwing up all of Thanksgiving. We made it through with a pretty good Christmas, and then maintenance started.

Maintenance lasted from February of 2019 through August of 2020. We still visited the hospital frequently, at least once a month, but the majority of her medication was taken at home. Daily, Shi took one chemo and on weekends there was an antibiotic, but other than that, she lived a normal toddler life through maintenance. She went back to her preschool and enjoyed playing with her sister, Harper, at home!

Shi was going to the hospital once a month for a chemo called vincristine and to start a steroid treatment with tons of side effects. BUT… with current research, they had found that she only needed it every 12 weeks instead, so we were super thankful for the recent study release.

On August 21, 2020, we were so excited to measure out her last dose of chemotherapy. But Shiloh, at only age 4, didn’t remember a life without taking medication. She cried because she was going to miss taking it so we had to explain to her that taking medication isn’t normal and it was a good thing that she didn’t have to take it anymore.

On September 3rd, 2020, Shiloh went into surgery once again to have the port in her chest removed. We celebrated with cake and they sent her the port in the mail a week or so later.

Finally, on September 22, 2020, Shiloh got to celebrate the end of her cancer treatment journey by ringing the bell at Hershey Children’s hospital. Because of Covid, we were limited to only Mommy and Daddy to be there in person, but our THON family showed up via zoom. In attendance via zoom were the Lionettes dance team (our paired organization), our family relations contact, the THON executive director and the ONE and ONLY, Nittany Lion!!

Today, Shiloh is enjoying life. We still go to have bloodwork done at the hospital and will continue but our visits become less and less as we keep hitting the year off treatment milestones. Shiloh likes to try most activities with her sister, Harper. They love to dance (thank you Lionettes). They also try all types of sports; basketball, soccer, golf, tennis. They love hanging out with their friends and swimming in the pool.

They love Penn State and want to come visit pretty much every weekend. They flip out every time they see the Nittany Lion on anything…even just a sticker on the back of someone’s car. The Nittany Lion is Shiloh’s best friend. He has helped us throughout this journey so much. We have used him as a motivator to get her to take medication and to cheer her up when she is sad.

We also love our org, the Lionettes. They are so special to us. They always make us feel so welcome and so loved. They came down and visited during the spring of our first year in treatment. We had a combined birthday party for Shiloh and Ashley Fazekas (the other Four Diamonds family paired with the Lionettes). The Fazekas family and the Lionettes have become such a special part of our lives. In the summer of 2022, Shiloh and her sister Harper were flower girls in Ashley’s wedding. It was so special as we celebrated her day with a couple other Four Diamonds families and a few Lionettes, past and present.

THON creates relationships for life. Brings light where there is darkness. The bonds created cannot be explained. The love shared between the volunteers, families and organizations changes lives.

We are so grateful for Penn State, THON and four diamonds. We couldn’t imagine this journey or our lives without you!