We just returned home from NIH Tuesday evening. She had the endoscopy done Monday; Praise God; it looks better. This means she will not have to take more drugs to get the GI system better. She will still have a risk of internal bleeding, but it is now reduced. It is good enough that she can now move forward to getting both renal arteries stented. This has not been totally confirmed, just the majority consensus. The creatinine is hanging out, and hasn't increased since January 1. Pray it stays put or better yet, improves. Her MRI of the heart was inconclusive, because they couldn't use contrast. At least, at this point, they didn't see anything different than the last time they did it. So for us, this was an upbeat visit. All good news! She will be in another protocol next visit. This is done to study the blood vessels and arteries. It sounds very interesting. They will take a patch of skin from her arm. They can then use it to create blood vessels and cells to study. This could shed some light as to why this is happening to her arteries. Hope they can figure this out. We have not had our consultation with Washington Hospital Center...the doctor was in the Philippines(I think). Anyway, we are hoping to get that in next visit. We are still looking in Indiana also. In the meantime, we have met with the transplant team again. Here's what we know....
It is believed that the best chance for Karly's survival is the haploid-transplant. Karly has decided with much courage and faith that she should be moving in that direction now. With that in mind, Kassidy went with us to give her blood for a transplant work-up. It is imperative that she have the EBV positive antigen antibody. There are several others virus' that we would love for her to have had, so pray that we find these antibodies present in her. If Kassidy is EBV negative, then we may look into Tyler or Trent, maybe me, but they prefer younger cells. Kassidy had the best points of match out of all of us, so it would be best if she has these antibodies. Anybody out there with mono that we can infect Kassidy with...only half-joking. We still pray that God would close doors that we may try to walk through, and swing others wide open with a spotlight shining. It has been rather clear up to this point, and God is certainly leading us.
Continue praying with us. In studying Hebrews, it has rested on me lately that Christ humbly, yet boldly and with confidence prayed to his Father that "the cup of suffering might be taken from Him". He did not waiver in his determination to fulfill the Father's will. The exact verse is from Matthew 26:39, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will." I have found myself praying this for Karly. We trust Jesus; we trust our Father God; our Faith is strong, and will not be shaken. We continue to stand firm in this.
Love,
Mom
Thursday, January 30, 2014
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!
Love,
Mom
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!
Love,
Mom
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