I’ve had a lot of people asking how Kellen is doing (thank you…I appreciate knowing that people are thinking of him), so I wanted to share this update.
THE BACKGROUND…
Dealing with my son’s diagnosis of Ulcerative Colitis has been life changing for our family. He was sick for months before getting the diagnosis and my mind had gone to some very dark places in that time, so having the diagnosis was a step in the right direction. I am not an alarmist and I didn’t run to the internet for information right away. I instead chose to listen to the doctor and nurses and dietician at the hospital. They taught us about his condition and told us what treatments they would do, and what the next step would be if the treatment didn’t work. I have felt well informed and listened to since we met our Pediatric Gastroenterologist. I trust him implicitly. He recognized the severity of Kellen’s illness right away, he asked all of the right questions and within ten minutes of meeting him he told me what no one else had been able to figure out for months…that Kellen had colitis. He couldn’t tell me what kind of colitis without more testing, which he arranged right away, and on completion of the endoscopy he promptly admitted my son to the hospital. I have never been so relieved. Kellen was very sick and I felt like someone was finally recognizing this and taking steps to get him better.
TREATMENT…
The typical treatment for a UC flare is prednisone. Kellen was taking this in large doses, along with many other medications. Unfortunately, it has many side effects. It stunts his growth, causes weight gain and water retention and can cause him to be easily agitated. Kellen’s change in appearance has impacted how he feels about himself. He no longer wants to swim (something he loved in the past) and his joints are hurting him. This has been a tough road. Watching your child get needles and medication sucks. Hugging your child while he cries that he doesn’t want to be sick anymore sucks. Worrying about missed school, medication side effects and the future…. well, it sucks. I hate seeing him this way and I wish I could just make it all go away.
FRIENDS…
It hasn’t all been bad though. Kellen learned that he has some really great friends. His classmates put together a book for him where they each made him a picture and wrote something to him. They were sweet and funny and it was just what he needed at the time. My friend Pam and her family came to see Kellen in the hospital which was great for him because her son is a good friend of his. I realized what a kind and caring person Stephanie is when she offered to help out if we needed anything, even though I didn’t know her very well. The Telus team has been incredibly kind and even offered to send Kellen a gift to cheer him up. Many other friends sent well wishes and tried to help out however they could, and people who have the same illness have come forward to offer their support. Kellen has a lot of supporters.
WHAT IS HAPPENING NOW…
In late April we met with the doctor and discussed our options. The prednisone was not working and Kellen needed to try something new. An IV medication was the next option. He is weaning off of the prednisone but that will take some time. He had his first IV infusion at the beginning of May and his second infusion two weeks later. We have been told we should see results after the third infusion which will be in another nine days. Please keep Kellen in your prayers while we try to get him into remission so that he can enjoy his life again! Hopefully the next update will be announcing his remission.
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