Saturday, January 18, 2014

Dancing through The Rain....

I'm am so sorry to leave you all in the dark. I was thinking that maybe it was just more of the same for you to keep hearing about. BUT, Karly has to deal with this everyday, and the prayers of the saints are needed. I went back to where I had left off. She was having difficulty getting IV's in every three weeks, so finally she had a port placed last summer. This is been a source of great relief. The timing of course was awesome resulting in its need to perform so often. She has needed IV antibiotics and fungal meds...about every 4 months since then. For about a year we have been watching her BP and Creatinine rise. Didn't quite know what to make of it. For the last 3 months, they have been rising rather rapidly. The BP med she was on wasn't working, and the extra fluids weren't helping. Dr Freeman, in her wisdom, had a MRA done of her kidneys. It shows she has Bilateral Renal Arterial Stenosis. Her Messenteric artery is blocked or narrowed, her EKG is below normal, and the internal carotid arteries near the opthalmic artery are narrowed bilaterally. She doesn't have Atherosclerosis or Fibromuscular Dysplasia(FMD) which are the two reasons this might happen. Our best guess right now it that is DOCK8 related, but unknown etiology. The ways to treat this are high dose steroids for 3-6 months, ballooning, or stenting. The steroids would suppress her immune system so much that the viruses would rage out of control. The ballooning is temporary, but would it suffice(we don't know). Stenting is the way of thinking right now. Nobody is excited about stenting a 19 yr. old because this is a permanent procedure. The next issue is the aspirin and Plavix she would need to be on after the procedure. Her GI system is fragile with severe eosinophilic disease. This could cause internal bleeding. She has been on a swallowing steroid treatment to put it directly where is needs to be which seems to have given her some relief for the eating/swallowing issue. The next step is to look inside her GI system again to see if there has been enough improvement to take these meds. If not, they would increase this steroid in preparation to take the meds. We will be visiting a large hospital(Washington Hospital Center) in Maryland next visit to speak with their team about the stenting surgery. Our team at NIH wants to be nearby to keep their eyes on our girl. I have not given up hope that it could be done in Indiana. How will we know what to do or where to do it? My prayer is that God would slam the doors shut as we try to walk through them. We don't have the luxury of timing(at least we don't think so), so we will keep moving forward and try to discern which path we are walking. We desperately want the path that God is choosing for us...not what seems right, easy or convenient. We are trusting ultimately on God to make our path straight.

It is becoming more obvious that moving into a transplant will be sooner now than later. The two options remain the same: Haploid-Transplant(using the mostly closely matched sibling) and the 9/10 unrelated mismatched in a very bad place( having to do with Graft Versus Host Disease) with survival less likely. At this point, we are feeling better about the Haploid-transplant, but there are still unknowns to be thought out. This type of transplant has not been done in the United States for this disease. It has been done at NIH for another immunodeficiency disease with success to date about 67%(roughly 2 out of 3). Johns Hopkins likes these types of transplant for cancer although it has its share of relapse. We wouldn't have to worry about relapse, but rejection and viral reactivation. I know this sounding overwhelming, but we are taking one step at a time without getting ahead of ourselves. We come to Our Lord Jesus to rest in His presence and experience His peace.

 People ask me how she is doing. It is hard for her to answer, and it is hard for me also. It isn't a quick answer. I was remembering this the other day....Kelsey used to answer, "I'm living." Karly showed me a reading that seemed perfect to her the other day. It is from Jesus Today, by Sarah Young. "TRUST ME IN TIMES OF CONFUSION-WHEN things don't make sense and nothing you do seems to help. This type of trust delights Me, because I know it is real. Invite Me to enter into your struggles-to be ever so close to you.Though other people may not really understand what you're going through, I understand perfectly. Find comfort in knowing you're not alone in your struggles. I am with you, watching over you continually. Long-term trials can drain you of energy and hope, making it hard for you to keep trusting Me. But, I have given you a wonderful Helper, the Holy Spirit, who never runs out of strength. You can ask for His help, praying: "I trust You, Jesus; help me, Holy Spirit." Instead of trying to resolve all your problems, simply rest in My Presence. Trust that there is a way forward, even though you can't see it. I am providing a good way for you, though it is bumpy at times. When the road is rough, cling all the more tightly to Me. As your soul clings to Me, My right hand upholds you.
"I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you." Genesis 28:15
"When the Helper comes, whom I shall send to you from the Father, the Spirit of truth who proceeds from the Father, He will testify of Me." John 15:26
"My soul clings to you; your right hand upholds me. Psalm 63:8

Thank you for praying with us!


  1. Thank you for the update. Once again we are moved and inspired by your faithful trust in the midst of ponderous decisions and unknown outcomes. We love you.

  2. Thank you very much for the update! I was a student at Ball State when you were originally trying to get people to get tested with the Be the Match campaign. Unfortunately, I'm unable to do so because I have had back surgery and could not commit to anything. Now I'm in Bowling Green, KY for graduate school and am still following your blog. I was pleased to see that you have updated as I was concerned about the silence. Karly sounds like a strong woman with a loving family and I really hope that her match will come soon.