2014: The Year of Unplanned Changes (Our Journey to Auto-Immune Diagnosis)

2014 started out as an amazing year.

Our third child was due to arrive and we had been planning a big career move for my husband.

We knew that the year ahead would be bringing change with it.

What we didn’t know was how many unplanned changes also lay ahead.

February 2014

Carter, our first son, was born. We were over the moon excited to add a little boy to our family!

In preparation for Marty’s career change to commercial real estate we sold our home and moved to a rental property. We knew we needed to set ourselves up financially for the transition ahead.  We had such peace from the Lord that this step of faith was the right thing at the right time. God provided a home for us, our house sold within days, and we moved within three weeks. Crazy but everything fell into place perfectly, which again confirmed that this was the right move.

Having three children 3 and under was a lot… 

Carter and Jessa were born 17 months apart so, in many ways, I still had two babies. 

Jessa didn't walk until right before Carter was born in February. Throughout that summer I noticed Jessa wanted me to carry her a lot. She would whine and tire easily, so I just carried her. I made an assumption that she was just  jealous of watching me carry her baby brother around. Carrying Jessa just became part of my day and I didn't think twice about it. 

August 2014

Then, in August we noticed that Kenzie’s right elbow wouldn’t straighten. We took her for x-rays and tried physio but it was stuck at approximately a 45 degree angle. Blood tests revealed inflammation, and so we were referred to Children’s Hospital.

At the same time, we began to notice a physical regression in Jessa. She was constantly needing to be picked up and carried a lot of the time. She was whining a lot, it seemed to be random and for no real reason that we could see. She would cry out in the night, not for hunger or being scared, but what seems like a pain cry.

We noted that Jessa was starting to fall all the time. We thought maybe she couldn't see, so we had her eyes checked but she had great eyesight! We decided to take her to the doctor, as it was becoming more and more apparent that something was wrong.

September 2014

Marty finished his job at the end of September and started to crack down on his real estate course with hopes of joining his business partner in January. I was on maternity leave at the time so it made sense for Marty to take over paternity leave, and for me to go back to work as a substitute until I could resume my position in the new year.

October 2014

Almost three weeks after Marty quit his job, we had our appointment with Children’s Hospital and Kenzie was diagnosed with Juvenile Idiopathic Arthritis (JIA).

We were shocked! This diagnosis had not even crossed our minds.

Our girl was healthy! Isn't arthritis something old people get, not children?

The specialist explained that only one of Kenzie’s joints was affected (her right elbow) but that this type of arthritis more commonly affects eyesight. Kenzie would likely experience inflammation in her eye, a disease called Uvitis.

December 2014

Two months later, we took Jessa to see our family doctor and try to get to the bottom of our growing concerns. Our doctor was amazing. He listened to and validated our concerns, calling a pediatrician right away (who happens to be his wife!). She was also concerned and arranged to see us the following week. That week was the longest week of our lives!

We met with the pediatrician at the local hospital. She explained that Jessa’s blood work revealed high inflammation, specifically her muscle enzymes. Jessa also had some concerning rashes on her eyes, knees and fingers. After a full examination and tons of questions, the pediatrician was pretty confident that she knew what it was.

She wrote down the words “Juvenile Dermatomyositis” (JFM) and told us it is extremely rare. In all her years of practice she had seen this disease maybe one time. Walking away from that appointment we didn't know what to expect but oddly enough we had peace.

We were again referred to BC Children’s Hospital, where we met with the same group of pediatric rheumatologists that we had seen with Kenzie. Symptomatically, Jessa presented textbook for JDM, so no further tests were needed (some JDM patients need an MRI and muscle biopsy).  

Apparently we are a rare family! 2 children with autoimmune diseases that are under the same umbrella but very different. 

Kenzie: Diagnosis, Treatment & Living with Juvenile Idiopathic Arthritis 

After our initial appointment at BC Children’s Hospital, Kenzie was given a cortisone shot in her elbow to gain immediate movement. This worked well and she was given a prescription anti-inflammatory for almost a year. To this day there are still no other joints that have been affected - praise the Lord!

The Uvitis (inflammation in the eye) affected Kenzie and would prove to be the hardest to get under control.

She sees an ophthalmologist regularly for her eyes and since diagnosis has had many flares. This is concerning as it means that the arthritis is still active, just not in her joints.

Currently, Kenzie gets methotrexate injections (this is a chemo drug) once a week to keep the inflammatory cells at bay.

Thankfully, Kenzie is healthy overall. She is very active. She loves running, playing outside, dancing and riding her bike. We are so thankful she is able to do these activities!

Kenzie talks about having arthritis like it's not a big deal. 

If the topic comes in conversation Kenzie will say, “I have arthritis in my eye, my elbow was stuck and I had to have surgery ”... and off she goes.

It has become part of her life and she accepts it. I am so thankful for this. Although she could have flares throughout her life, I know that nothing will stop this girl!

Jessa: Diagnosis, Treatment & Living with Juvenile Dermatomyositis

The treatment for Jessa’s JDM is Prednisone (a steroid) and methotrexate. She was immediately started on 20 ml a day of Prednisone to start to stop the progression of the disease. I was freaked out of this amount for my tiny girl... but knew it was necessary.

I am happy to report Jessa came off the Prednisone steroids 14 months later and thankfully she has not needed to go back on that since.

We were told that Jessa would need a methotrexate injection once a week for a minimum of 2 years. Here we are almost 6 years later, and she still gets those methotrexate injections on a weekly basis.

Jessa’s muscles have stayed healthy and free of disease, but she has experienced multiple skin flares in the past few years.

In September 2020 we began a slow wean off the chemo drug (cue the cheering!!). This is the first step towards remission and we are praying that it is in the near future!

Jessa is now able to run, jump, ride her bike, dance and go up and down the stairs. Her previous inability to do these activities were proof of how sick her little body was. And, although we hated the drugs we had to give her, we knew and saw how necessary they were.

She has blossomed into a sweet, sassy and clever little girl. We had thought she was a very sensitive girl and, although she has a sensitive side, we now realize it was the JDM that didn't let her shine.

Now she shines so bright!

Trusting God in the Journey

Kenzie and Jessa’s diseases will be a continual journey for our family. Neither of the girls will “grow out” of their diagnosis’, so the present and future will be: lots of appointments, specialists, follow ups, blood tests, diet changes, vitamins, supplements etc, etc, etc.

Our prayer has and will always be long term REMISSION, which is very possible for both girls. 

We trust that the Lord has already determined their path on this Earth, and we pray that their stories will empower them to share the love of their Lord and ultimately bring glory to His kingdom.   

As a mother walking through this journey with my children, I can reflect back and say that even in the hardest days of our lives we were able to take comfort in knowing that the Lord was with us. We continually experienced His peace on every step of the way.

We have so clearly experienced God's providence and provision over our family. We trust that "He's got this" and that even in trial, we will find joy in the journey.

My hope is that in sharing our story we can be an encouragement to others who find themselves walking a similar path.

Please don’t hesitate to reach out and chat if you’re going through something and need a little encouragement.

This past spring I was able to share our story on Fire & Grace - The Podcast. I invite you to listen to the episode.