I have been in a state of not knowing what to post, and since I rely on God to give me what to say, I felt like I shouldn't be writing. I don't know if there is such a thing as a quick update but since November here is what has been happening. We had a marvelous Thanksgiving and Christmas AT HOME! Karly did keep getting sicker through Nov. and Dec. Karly was sleeping a lot with very little energy. Her lungs seem to just get bogged down with bacteria then she kinda shut down. She cannot be on IV meds all the time; it is not good for your body and her body likes to get resistant, so we need to save these drugs for critical times. Also, the molluscum was causing problems with living life comfortably, so it was decided that a surgical procedure was needed to burn it off. They set this up for Jan.13 and used a plasma laser. Let us say that it was more painful than anyone anticipated, and it is still healing today. As it turned out, her lungs were pretty sick going into this procedure, and required IV bacterial and fungal drugs until last week. The drugs were also needed to cover infection risks while she was healing from the surgery. She has been off the IV drugs since last Sunday, and she already is feeling more tired and goopy. Of course, the weather has been warm, and the allergens are high which is part of the problem. Another reason is that she finally has been able to start the Interferon Alpha which should help control the growth of the molluscum, but the side effects make you feel like you have the flu and tired. Last time she tried to start this med, she went neutropenic. We have been trying to find another time to start this...a time when she feels remotely well. Just this month, we finally found it. She started it last week. Tonight is the second dose. The type of warts and molluscum associated with this disease is problematic because of the known mutations into Squamous Cell Carcinoma and Cutaneous T-cell Lymphoma. Both of these have been deadly with other Dock8 patients. This is the big reason we have been trying to eliminate as much of it as we can. In Kelsey, she had 2 areas on her body with pre-squamous cell activity. We are being optimistic, until we have reason not to be. Please pray that she will be able to take this medication continually with great response. She continues to travel to NIH every three weeks.
We were blessed on the 1-yr. anniversary of Kelsey's Dancing With The Lord! It seemed like any other day(there isn't a day that goes by where we stop thinking about her), dealing with Karly's situation, school, work, etc, but we Skyped the boys who are away at college for a couple hours just sharing life, stories, and memories. We loved the encouraging words on Facebook, flowers, and notes. One of my favorite said, "I never knew Kelsey in life, but she changed my life forever." These kinds of stories just make us feel so blessed.
While Karly was inpatient at NIH for 13 days in January, she had one of Kelsey's night nurses during her transplant. The story she told us keeps us laughing. She said she remembered one night when Kelsey asked her to get a pair of underpants from her drawer. She just grabbed a pair and handed them to her. Kelsey replied, "These are not appropriate for the situation." The nurse had handed her a lacy pair, and she thought, "Then why did you being them to the hospital?" I love the timeliness of the stories. This was important for Karly during one of the most painful times of her life. Laughter was very important. And by the way, Sara one very awesome friend, came and stayed with Karly during her nights and provided great distractions and care.
There are more stories to share. When the Lord brings them to mind, I will share them. I trust that the timeliness will be important for someone.
Karly still does not have a match, nor can I say this is what we want. What we want is for the Lord to guide us through this journey while waiting for a complete healing "on earth as it is in Heaven." If a transplant is what He wants, then He will provide what is needed. Meanwhile, we(the whole family) will Dance Through The Rain.