Thursday, January 30, 2014

Update on Karly

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

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