Hadley

Today we honor warrior, Hadley

Hadley became sick during Thanksgiving week in 2019 with pneumonia. We were admitted to Neenah for a couple of days, and she seemed to perk up a little with the medication and blood transfusion she received. A couple of days later, she began throwing up a lot, and peds directly admitted us back to Neenah.

A CT was performed, and the results I received that night were every parent’s worst nightmare. They thought Hadley had some kind of cancer. Her spleen and liver were huge, along with all the lymph nodes in her abdomen. I was told, “We are transferring you to Milwaukee tonight.”

When we arrived in Milwaukee, doctors and nurses filled the room. The next couple of days consisted of lots of blood work and specialists. A bone marrow biopsy ruled out cancer. What a relief.

They discharged us and told me Hadley would either show more symptoms or the blood work would eventually show something. Within two days, I was back at the pediatrician’s office. Hadley had spiked fevers and was very lethargic. We were sent home, but the doctor on call followed up a couple of hours later because Hadley was getting worse, and we were sent back to Milwaukee for monitoring.

The fevers continued, followed by a crazy rash, which she had been battling on and off for months and was thought to be idiopathic hives, along with a stiff neck. They monitored her symptoms for a couple of days and made the diagnosis of systemic juvenile idiopathic arthritis.

I thought, “Okay, arthritis. There are meds for that.” Little did I know I was in for a surprise.

Hadley started a medication called Kineret, a daily injection. It seemed to work great. She was moving better, and the fevers were gone. AMAZING!!

We waited two weeks for insurance to approve the medication, and we made it home for Christmas.

The next day, she was grunting really badly. My gut told me something was off, so instead of going to work, I made a trip to the ER. They repeated the ultrasound to check her liver and spleen. The ultrasound tech was a godsend and got a glimpse of her heart. Hadley had a ton of fluid around her heart.

They called transport from Milwaukee to come get us. They told me cardiac cath was on standby for her arrival. As fast as she was wheeled into the cardiac ICU, she was wheeled back out and headed to surgery.

After a couple of medication adjustments and a couple of days in the ICU, we were once again set free.

January was filled with lots of appointments, but I was starting to think this was our new normal.

In February, Hadley got a sinus infection, along with the rashes and fevers. Any sickness can flare SJIA, and that’s what happened. She was readmitted for a MAS flare. She was given steroids for a couple of days, and they changed her medication to an infusion. Her ferritin improved, and we went home, only to return again and again.

On February 22nd, I knew something was off. She wasn’t herself at all. She laid around and barely drank or ate anything. I had orders from the rheumatologist for blood work, so I took her to Neenah to get labs. By the time I got her home, her feet were purple and black.

We headed to Milwaukee. She was taken right back to the ER, and then we were transferred up to the ICU. They talked about HLH or sepsis. Her breathing got worse overnight, and they made the choice to intubate her.

The HLH doctor came on service the next day and started the HLH protocol with high-dose steroids and chemo for 8 weeks. Hadley was extubated 4 days later, and we then transferred to the oncology unit.

She had her fair share of setbacks and visits back to the ICU. They changed the chemo protocol 6 weeks in because her ferritin jumped. After 3 months inpatient on the oncology unit, she was well controlled with Jakafi. The plan was to discharge her and return in late July for a bone marrow transplant.

We spent two months at home with checkups twice a week in Milwaukee. We went in on a Wednesday for labs, and her labs looked great, the best they had looked in months.

That Friday night, she spiked a high fever, and her breathing had changed. We ended up back in the hospital. Blood cultures would reveal that she had an infection.

Hadley ended up going septic and passed away from her lungs hemorrhaging on July 19th, 2020, just 6 months after being diagnosed with HLH.