Ellanor's Story

Deb Moldaschel
The Sleepy Eye Herald Dispatch

Little Ellanor Siefkes, sixth child of Caleb and Katie Siefkes, has been dealing with more nurses, doctors, other medical care providers, clinics and hospitals in the last two years than most of us ever will. Diagnosed as not having white blood cells that fight bacteria, Ella endured injections of medication, severe leg pain, and sleepless nights. When all the treatment options didn't seem to make enough difference in her condition, a bone marrow transplant was deemed the way to go forward.

With thanks to Pastor Phil Siefkes, otherwise known as Grandpa, we have a heart-warming and touching story to share that he told me about when responding to my reminder that his Pastor Column was coming up. Pastor Siefkes put me in touch with Caleb and Katie. I asked if they would share more information and send some pictures. The few pictures with this article are just a sample of the beautiful photos of their little cutie Ellanor.

Ella makes the best of her homes away from home at Children's Hospital or Ronald McDonald House.

Currently, Katie and Ella are at Children's Hospital, living at the Ronald McDonald House, as Ella recuperates from surgery. Caleb happily answered my questions about their journey with Ella.

HD: Tell us the story of Ellanor's condition and how you learned about it.

Caleb: For Ellanor, her life had been pretty normal until she was about 5 months old. She did have an unrelated tongue tie and struggled to eat when first born, but the infections seemed to start around 5 months. We first noticed it as painful sores began developing in her mouth and she wouldn't eat. After some very rapid growth of the infection, we took her to the clinic for antibiotics. This took care of the infection, that time, but after a few short days she would develop yet another infection. Sometimes the infections would manifest on a finger from a small cut, but mostly in her mouth. 

The infections repeated a few days later, almost on a schedule, following a regimen of antibiotic (AB). During this time, blood work was being done and we found out she was neutropenic (having basically no neutrophils — the white blood cell that fights bacteria). At one time we ended up in the ER at Children's because the normal AB weren't working and she spent three days in the hospital to find something that worked. 

We ended up getting in contact with hematology specialists at Children's Hospital in the Twin Cities and eventually she was diagnosed as having Severe Congenital Neutropenia. We were prescribed medication to help her bone marrow grow the blood cells. We used this medication for about one year. This made all the difference in the world for the infections but it was nearly impossible to get a correct dosage to be effective and not cause severe bone pain.

After a year of almost daily injections, many sleepless nights, and trying many different dosages, the doctors agreed that there really was only one other course of action to improve Ella's quality of life and sustain her: Bone Marrow Transplant. We always knew this could be an option but needed to exhaust other possibilities first. The BMT process was much more complicated and time consuming. Children’s Hospital referred us to the U of MN BMT program to consult with their doctors.

Josiah and Ella Siefkes were already close siblings but now have even more tying them together after a bone marrow transplant.

HD: Tell us about learning that your oldest son could be the donor?

Caleb: During early conversations with doctors, we decided to do testing on her siblings to see if there was a match in case we needed it. Turns out, there was one match from Ella's five siblings—her older brother Josiah. Our second child was a full match to our sixth for BMT!

Because of the close match, and having tried other options with limited success, we decided to proceed with the BMT. This was the beginning of a five month process where Ella and Katie need to be in or near the hospital the entire time. Not a small undertaking for them or the rest of the family. 

HD: Describe the process for the bone marrow transplant.

Caleb: Ella and Katie moved to the Ronald McDonald House in early November, and to date have spent about one month in the hospital for preparation and transplant. Closer to transplant day we found out that not only was Josiah a match for BMT, but his blood type was also a match. This made the operation a little faster and safer as his marrow didn't require as much modification for the transplant.  

The transplant went well and was a beautiful display of science, brother's love, and God's mercy. 

HD: What is the latest update?

Caleb: Right now Ella and Katie are living at the RMH and have daily appointments at the hospital. She is recovering but has many struggles on the way. She still isn't eating or drinking, has a random sleep schedule, and is fighting some related rashes. Ella’s new blood counts are continuing to come in well, slowly but surely.

We are thankful for everything that has been available to deal with this and to get Ella the care she needs. We are hopeful that she'll be able to return home sometime in March of 2022, if she is able to progress enough.

The prognosis is that Ella will recover completely and not need any medication and have few if any restrictions for the rest of her life. Obviously anything can still happen, but what a gift from God through medical science! Truly an opportunity to help give her a chance at "normal life." 

The Siefke family look forward to the happy day when (Mom) Katie and Ellanor are home again. Katie and Caleb are pictured with their children, from left: Greta, Elijah, Annika, Josiah, Micah, and Ellanor.

HD: How did you celebrate Christmas this year?

Caleb: Typically we do three days of Christmas, each side and our immediate family. This year was similar, but I took the kids to visit my sister that lives in Iowa for an overnight Christmas. This was a nice little distraction for the kids. For the Christmas at our house, we utilized FaceTime to call Katie and Ella. Obviously not the same, but better than a phone call, or nothing at all. Thankful for that technology! Saturday the kids and I were at Katie’s parent’s house and with her siblings — again thankful for FaceTime! 

HD: What does Josiah think about all of this?

Caleb: Josiah and Ella are already very close siblings. About the BMT he said, "It made me feel good that I could help her" and "I wanted to help her so she didn't have to take medicine and have pain for the rest of her life."

Caleb said that all the medical personnel have been truly a blessing to deal with, both here in town and in the Minneapolis area.

To read more about the Siefke's story you can read their CaringBridge journals found under Ellanor Siefkes.