I am a Blue Star Families Chapter Director in North Carolina and the founder of the non-profit organization Support Our Arthritic Kids. The events and revelations that led to my involvement in these causes all happened suddenly during my husband’s 4th deployment in 2009-2010. That deployment was especially hard on him, and I didn’t even tell him the full story until he returned home.
My daughter, Catherine, has always been an energetic child – very active and constantly in motion. In 2008 she was on a mini-cheerleading squad, competing in various competitions across the U.S. In May 2009, Catherine’s dad deployed to Iraq and Catherine started getting very high fevers and a couple of sore throats. Her fevers would be quite high (around 103 degrees) one night and gone the next. She had difficulty getting out of bed in the morning, could not navigate a single flight of stairs, and would often wake up complaining from the pain in her legs. She constantly complained of her knee hurting. I thought it was all just growing pains and dismissed it. A couple of months later after cheer leading camp, her knee became swollen and we thought she had injured it, although she hadn’t performed any stunts.
In July, Catherine was seen by her pediatrician for the swelling in her knee. Her doctor sent her to get x-rays, but after two weeks the swelling was increasing and the pediatrician referred Catherine to an orthopedic surgeon in Fayetteville. Dr. Green looked at her, took knee measurements, and decided to remove knee fluid and gather a sample to test. It was difficult to witness my 8 year old being jabbed in the knee with a needle that was as long as a ruler. After the procedure he sent us to the lab to gather blood work. Catherine’s knee locked up and I had to carry her to the lab.
The next morning her knee looked wonderful and the pressure on her joint was relieved. A few weeks later, though, we returned to get the results of her lab work. The doctor was able to rule out lymphoma, leukemia, lyme disease, and lupus, and he finally diagnosed Catherine with Systemic Onset Juvenile Rheumatoid Arthritis (“JRA”). He began treating her with physical therapy twice a week, placed her in a knee immobilizer and prescribed naproxen to treat her arthritis. Dr. Green said he would like a second opinion and referred her to a Pediatric Rheumatoid Specialist (Dr. Stein) in Chapel Hill NC. That was December 31, 2009.
Fast forward to a year later Catherine has since been diagnosed with Pauci-Articular Juvenile Rheumatoid Arthritis. The condition affects her right knee, right ankle and right jaw. She has had 3 joint injection procedures, is on a chemo-therapy drug called methothrexate, and is in the process of starting Enbrel to help control her arthritis. Catherine developed a sensitivity to light in November, for which we were referred to an ophthalmologist. She was treated with a steroid drop to both eyes and now we are seen every 3 months to make sure the disease does not affect her eyes.
Later this month, she will have a joint injection procedure preformed on her right jaw. So far Catherine gets nauseated and usually has an upset stomach immediately following her injections and for the next few days. Dr. Stein is hoping for a “clinical remission,” meaning that the disease appears dormant with regular medication. Our hope is that Catherine can achieve a full remission once the medications have been tapered off. Throughout this past year, Catherine has remained resilient and her spirit has never been broken.
Through our journey of this horrible disease, Catherine and I have learned that not many children are affected by this, or at least they don’t know they might have this disease. We have learned that it can affect more than just your joints; it can also affect organs and eyes. We have started a support group on Fort Bragg to reach out to other parents who might be going through this or who might be in a similar situation with other conditions. In August 2010, after talking to family, I felt a need to create a non-profit group to support our children, which we named Support Our Arthritic Kids, Inc.
Not only have multiple deployments affected my daughter, but this horrible disease has too now. It has been extremely difficult to watch her have stop cheerleading, which took her mind off her dad’s deployment. But now we are on a different journey that Catherine has been excited to participate in. She is very informed about her illness and what she can and can’t do.
On Oct 12, World Arthritis Day, Catherine helped pass out fliers and pamphlets about juvenile arthritis. I have been training to participate in the Carolina Blue Ridge Classic cycle ride in 2011 to raise money and awareness for our new organization. Hopefully my husband will be able to ride with me and we can compete as a team.
For more information on Our Arthritic Kids, Inc., visit the website at www.ncsoak.org or email email@example.com.