In the summer of 2015, Jessa started having some health problems. Jessa is not a complainer and downplayed her symptoms. When we would be in the mountains, the problems seemed to get worse. But, when we would return to lower elevations, she seemed to improve. As her parents, we thought it might be related to her growing or being very active that summer. Looking back, we are able to see all the reasons we should have rushed her to the doctor. But, in the moment, she seemed to improve so we would decide to wait and see what happened.
Jessa’s health began to worsen in the fall of 2015 and she was especially sick during a trip we took to higher elevations. After getting back to a lower elevation she continued to decline without any sign of improvement as there had always been in the past. After a scary morning where she was sick and unable to walk more than a short distance, we called her pediatrician who was able to see her that morning. After visiting with the pediatrician we were sent to have blood drawn for labs and were told the doctor would contact us in a few days.
As parents, we knew something was wrong and our little girl needed some help but we never anticipated what the next week would involve for our family. The doctor called that same evening and told us to take Jessa to the emergency room immediately. When I hesitated and asked if I could bring her into the clinic the next morning I was told that this was very serious and that doctors would be waiting for us at the hospital. It was so hard to see the fear in Jessa’s eyes when we told her what was happening. It broke our hearts to leave her siblings scared and worried without being able to assure them it would all be okay.
Jessa was checked into the hospital and, after what seemed to be a million questions and tests, she was admitted to the Pediatric Specialty Care Unit and was started on a blood transfusion. The next couple of days were a whirlwind of tests, pokes, questions and more blood transfusions.
Jessa was diagnosed with IBD (Inflamatory Bowel Disease) commonly known as Crohn’s or Ulcerative Colitis. She was severely anemic which was making it hard for her to get the needed oxygen at high elevations and making her tired, weak and her heart race. After being diagnosed, the doctors immediately began treatment. Jessa had to stay in the hospital for several more days for additional blood transfusions and to have steroids given to her through an IV.
Jessa was sent home on steroids and was started on oral immune suppressants to try and control the symptoms. Our hope was that within 6 weeks she would be off the steroids and the immune suppressants would be able to keep the symptoms under control. Jessa would prove over the next six months that she was anything but typical. It took over 6 months to get her off the steroids and she experienced a wide variety of symptoms related to taking them which included intense headaches, sores in her mouth, a rash on her face, hair loss and trouble sleeping just to name a few.
Jessa’s body was also unable to control the symptoms with just an immune suppressant. After trying several approaches, her gastroenterologist decided we needed to try what is known as biologic treatments. This requires Jessa and one of her parents to spend about 5 hours (if all goes well) at the hospital each time she needs a treatment. Thanks to a wonderful gastroenterologist we finally have our sweet daughter feeling well again. She still has good days and bad days and we are learning her limits with this disease but we finally have mostly good days mixed in with a few bad days that help us remember how far we have come and how much we have to be grateful for.
While Jessa was in the hospital, she had so many amazing nurses who took care of her. They were all so kind and would seem to know just what she needed before she could even ask. Whether it was a funny story, clean linens, something to keep her from getting bored, or gentle reassurance that she was strong and brave and could win this fight, they seemed to be there just when she needed them. One nurse brought her a beautiful fleece blanket that someone had donated. Jessa was so pleased and thought that it would be fun to make blankets for other kids when she got feeling better. The nurse told her that she also likes to give the kids pillowcases but she never has enough and was completely out at the moment so she couldn’t give her one. Instead of being disappointed, Jessa took it as a challenge to help out in what she had learned firsthand could be a scary and overwhelming place.
Jessa wanted to start sewing as soon as she was released from the hospital but, because of complications trying to get her disease under control, it would be several months before she was able to begin. She has now donated 242 pillowcases and several backpacks full of needed clothing for trauma and foster children (We will be giving more information on clothing donations in a future post.).
Jessa has the most amazing attitude about being sick. She has had some really hard days but always counts her blessings and points out the good that has come because of being sick. When I was feeling bad for her and made the comment that I wish I had a magic wand and could make this all go away, she responded by telling me that she wouldn’t let me even if I tried. When I asked her why she said, “If you took it away I wouldn’t be who I am today and I like who I am!”
That sums up Jessa’s sweet personality and her desire to constantly do good and be good. We hope this blog will lift your spirits and help you see the good in your life and in others and see the ability we each have to lift those around us. You just might be the person who can give someone else the courage to keep fighting and not give up, no matter what their challenge may be.
