Riding with Reed

CausePage Fundraising Success

2.5 year old Reed was diagnosed with Langerhans Cell Histiocytosis (LCH) & Diabetes Insipidus (DI) in 2022.

When starting a CausePage (online fundraiser) paired with a custom t-shirt, 40% from each purchase along with cash donations was donated back to this online medical fundraiser. Over $4,000 raised! Talk about a great fundraising idea!

The back story

Reed Parkhurst is 2 ½ years old. He loves anything farm related. He especially enjoys tractors, combines, side-by-side rides, and playing with his trucks and tractors at home. He is the son of Chris & Kate Parkhurst. Chris is the 7th-12th principal at Louisa-Muscatine High School and his wife Kate is a special education teacher at Louisa-Muscatine Elementary School. Reed has three older sisters, Harper is 8 and in second grade, Quinn is 6 and in first grade, and Adalyn is 4 and in preschool.

A note from Reed's parents:

Reed was recently diagnosed with Langerhans Cell Histiocytosis (LCH) and Diabetes Insipidus (DI). Over the last several weeks he has had two hospital stays at the University of Iowa Stead Family Children’s Hospital and undergone a multitude of tests that finally led to his diagnoses. LCH is a rare, cancer-like condition. It happens when a person’s body makes too many immature Langerhans cells. When the cells build up, they can form tumors or damage tissue, bones and organs. DI is a rare condition that occurs when the body can’t regulate how it handles fluids. The condition is caused by a hormonal abnormality. This will be a lifelong condition.

This all started back in the middle of April with what looked like a really bad case of cradle cap, but it would not go away with the different treatments that were prescribed. Then in the middle of August he started waking up thirsty every few hours at night and was soaking through his diapers. We initially thought it was diabetes because those are both symptoms of the disease. Our regular doctor checked his glucose levels and they were in the normal range, but we were just sure something else was going on. We asked our regular doctor for a referral to the University of Iowa. We started with a Nephrology doctor who quickly referred us to an Endocrine specialist. From there they ordered a water deprivation test because they were worried he might have Diabetes Insipidus.

On Friday, October 14, we went to the hospital with the intention of being admitted for 8-10 hours so Reed could be monitored closely during testing. After 12 hours of no food or drink he was officially diagnosed with Diabetes Insipidus. This meant us being admitted to the hospital for a few days while they tried different doses of Desmopressin medication to treat the DI. While there for testing dermatology came in to do a biopsy of his scalp because they were worried something else was going on as well.

That night we met with an oncology doctor who threw out the possibility of Langerhans Cell Histiocytosis. They wanted to order more tests to see if this was the case. We started with an MRI and bone scan. Those results along with the biopsy from dermatology confirmed it was LCH. Next they ordered a PET scan, so they could see exactly where the disease was located in Reed’s body. We’d been at the hospital for 5 days at this point and were all ready to head home. A couple days later we came back to the hospital so Reed could have his port placed and do a bone marrow biopsy. He had to be put under three times in five days. That was tough to watch as a parent.

After we finally had a diagnosis the team was ready to move forward with a treatment plan for the LCH. The doctor told us it would be a year long treatment. The following week he started his treatment. He is getting a combination of chemotherapy and steroids. He is finishing up his first round of treatment that has been over the last 6 weeks. Next up is another MRI and PET scan to see if the treatment is working.

Reed has been a trooper so far. He has made it through three rounds of chemo and two five day hospital stays. The nurses all say he is a model patient because he does so good with all the pokes, blood draws, and treatment. He likes to watch the nurses as they work. We are so thankful and blessed that he has handled all that has been thrown at him over the last two months.

We continue to pray daily for God’s healing over our little guy. We are thankful we serve a risen Savior and can put our trust in him. We know he’s got this!

Some verses that we’ve really leaned on are:

“In this world you will have trouble. But take heart! I have overcome the world!” John 16:33

“Be joyful in hope, patient in hard times and faithful in prayer.” Romans 12:12

Battle Belongs by Phil Wickham has been our theme song for this journey!

****