Friday, August 17, 2012

We've had a great summer, but different. Tyler started working as an "all grown up child" in May. He lives in Illinois, but thankfully he isn't more than a 4 hr. drive away. He is "living the dream" and doing it wonderfully.  Trent started working at a job he is so suited for....fixing and troubleshooting anything in a Die Cast business. He working at least 50 hours/wk. We missed vacationing with our boys this summer which was a big change for us. We praise God for His faithfulness in so many ways. Tracy and I celebrated 30 years of marriage with a cruise in July to Key West, Cayman Islands, & Cozumel. We had an awesome time! Then we took the girls to Niagara Falls, Boston, MA, and Portland, Maine. One exciting thing for Karly was eating seafood. Maybe someone can figure out why she can eat fresh seafood, but not frozen seafood. One explanation we got was that the older the seafood is the more enzymes there are in it. Anyway, since this was how it was for Kelsey, we thought maybe Karly would be the same way. She hasn't been able to eat seafood since cancer. She went armed with her Epi-pen and Benadryl to the restaurant. They willingly brought her one shrimp to try. She named it Mumford the first. She successfully ate Mumford, then went on to eat a plate full of shrimp. Since that went well, she tried tilapia, haddock, lobster, and crab. All went successfully. Since about the only meat she can eat is chicken and pork, this was a fantastic experience for her. We enjoyed walking the Freedom Trail in Boston, seeing the Minutemen National Park, and walking by the water. In Portland, we were on the waterfront, so we enjoyed walking the quaint shops, eating Gelato, finding the lighthouses, and hanging at the beach. Karly was able to get some sand art in at Crescent Beach....any guesses to what she made....yes, the Titanic. Summers go by so week she starts 2 classes at the Community College, and Tracy starts teaching school again.

Medically, she still is going to NIH every 3 weeks to receive her IVIG and exams from the Dr., & the derm and ENT clinics. It is pretty routine by now. Her Hypertonic nebulizers are probably doing the trick for her lungs, but we won't know until after her October scans. Her eyesight has worsened some and the molluscum is causing some infection because it has blocked her tear ducts in both eyes. It is also causing her eyelids to be bulky and swollen. We saw an Oculoplastic surgeon this week in Indiana. He will be trying to put in stints to open her tear ducts or creating a new tear ducts. He will also de-bulk her eyelids. She will be seeing a facial plastic surgeon in Sept. to see if he can successfully remove it around her mouth and chin areas. If so, they will be sharing the OR to get this done in October. She is scared, but oh, so ready to have some relief. Her chest, abdomen, and pelvic CT's will be done in October. This is her cancer check-up and GI scan to see if the steroid treatment has worked with the thickening they found in April. Praying that these will prove to be negative in every way.

As she approaches the school year, the travel to NIH, the surgery, and her every day dealings with this disease, she needs prayer to sustain her emotionally, physically, and spiritually. We thank you for carrying this burden with us.