Wednesday, July 18, 2012

Still Dancing Through The Rain

Another three months have passed. Karly had the biopsies in May. The stomach one didn't show cancer, but very bad eosinophilic disease. The GI doctor wasn't exactly convinced that this was all that was happening, but because the cells weren't showing cancerous, he decided to treat with a steroid for 6 weeks, then get another CT to check. If the CT showed worsening, another deeper biopsy would be performed. The CT on July 2 didn't show worsening, but didn't get better either. At this point, she will continue to stay on the steroid for another undetermined amount of time, then get another CT. Her symptoms of pain in the abdominal/stomach region did get a bit better. Her band-like headaches have gotten worse again and the sharp occipital headache has returned. She was treated for the latter at the last appointment. Her molluscum is raging out of control on her body especially her face. The Interferon she was taking for this was causing havoc with her blood counts, her emotions, and making her extremely tired. As of mid-June, she was not able to increase the dose of interferon to a therapeutic level after being on it for several months, so this treatment was stopped. The CT in July also showed something in her lung that could be pneumonia or mucous(fluid) hanging out. She has been trying to cough this out by using a hypertonic nebulizer. She is coughing stuff out, but cannot say it has helped her. She may continue on this for awhile. She has gone to NIH twice by herself. Once you reach 18, they no longer bring a guardian out. Now if there is something traumatic going to happen or she needs me, they will. The first trip by herself was mid-June. She did exceptionally well. She left today for the second trip by herself. The flight has been delayed twice already making this a late night for her. Pray things will work out for her and her connections with the cab driver and finding food once she arrives is not complicated. Each visit for her holds news that is not great, but to be able to leave a visit with not having a biopsy or anything that causes too much pain, she can smile about! She continues to travel to NIH every three weeks.

Karly has had many activities to keep her busy, but not all of them have held the joy she hoped they would....mostly because the interferon was interfering with her energy and emotions. She got through her senior trip to Chicago, Prom, and Senior Banquet. She has graduated from High School and registered for 2 classes in the Fall to slowly work toward her Health Support Degree and applying to Physical Therapy Assisting School. She got through SERVE week where you stay at the church, work long, hard days, in the extreme heat to serve the community we live in. She specifically worked on a wheelchair ramp for an elderly widow. It was very rewarding. She had her dance recital where she danced a senior solo, and 2 other ballet dances. She was able to spend a few days with her boyfriend and his family at a lake. Karly wants to see Boston, Massachusetts, Maine, and Niagara Falls, so guess where we are going when she returns from NIH. Life really has been good! We praise Jesus EVERYDAY! I may have said this before, but just to be able to spend time everyday with each other, friends, worship our Lord and Savior, and look for opportunities to bless others really is a joy.

I will try to do a better job of communicating. While in the midst of living at NIH and the daily turmoil, roller coaster events, and lots of time on my hands, I was able to write more frequently. While at home, I try not to focus on the disease. Not that I'm ignoring it, but just NOT focusing on it. God has way more in store for us than this disease, so we have to keep our eyes on HIM! Thanks for praying and encouraging us.