Another update for Karly

Since the last update on Karly a few things have happened. We went to IU Health to see a Vascular Interventional Radiologist. We really like him, and he instantly seemed bonded to our story. He said to consider him a part of our team. What a blessing! He believes she has something rare called Mid-Aortic Syndrome. Even if this is not the correct terminology, we are in pursuit of finding out more of what is happening in her body. She has several arteries and vessels that are severe to critical in narrowing, with some calcified areas as well. Everyone has come to the same conclusion about what to do, and all have decided that stenting wouldn't fix the renals arteries. Because this is more widespread, we have started on the dreaded steroids. For a Dock8 patient, this means that her immune system will be even more immune-suppressed which also means the viruses will be able to wreak havoc on her. What we are praying for is that God would protect her from this and that the steroid would fix all the vessels as soon as it can, so she can come off of it. We hope for her creatinine to come down. It has increased again a lot over the last month. After being on the steroid for a week, we will test the creatinine again to see if it has come down which means the steroid is working. In theory, if the creatinine comes down, then the blood pressure will come down.(Double-edged sword because the steroid can increase the blood pressure and cause swelling). So far, the blood pressure has been okay, with only a little noticeable swelling today in her hands. Also, if the creatinine comes down, she can get the CTA to look at the vessels and arteries around her heart. Right now, the dye used to look at this is a problem, but hopefully it will be okay after the creatinine comes down. These are just some of the things we are trying to achieve in the next month or so. We just keep track of one day at a time.
Thanks for praying with us!
Love,
Mom

3 years later....

It's very hard for me to believe that it's been 3 years since Kelsey passed away. I still remember it like yesterday. The girls think it seems forever ago. What different perspectives. Recently I had them write an essay. The theme was, "Do not sorrow, for the joy of the Lord is your strength." It allowed them to reflect. I loved reading their thoughts.They talked about why it is important to be filled with the joy that we receive through Christ saying, "Living in joy is to our benefit; it makes us stronger and gives God glory. We learn to give comfort when we have received comfort. We give joy when we attain joy. We learn patient endurance when we suffer. God wants us to bring Him glory through our sufferings. God knows about all these things. God is making us perfect through a process of refinement. The next time you face trials trust Him completely. Consider it pure joy that you face the trial, for that very trial will be used by God to develop your perseverance toward maturity." By reflecting, they had time to think about what is facing them next and what response they would have.  You always have a choice...either draw near to God or turn away. I was grateful that their response was drawing nearer to God.  

So what is next? We feel as though it is time to choose the haploid-transplant. Kassidy was tested last month. She does not carry the EBV virus which is pretty essential in Karly's donor. I am currently being tested. Tyler gets tested on Thursday. Trent is going with Karly in 3 weeks to be tested. While I may have all that is needed, I'm not ideal because I have older cells. At this point, we need Tyler or Trent to have all that is needed to be Karly's 1/2 match. Please pray with us. We continue to walk through the doors that become open. We pray that God makes every step clear to us. At the same time we ask that this cup pass us by. BUT in all things we pray for His will to be done and that we glorify in all that we do.

Love,
Mom