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

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

Karly's Story

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

At a loss for words...

I keep trying to find the words to write, but I'm finding myself at a loss for words. The lyrics from
"Word Of God Speak" keep coming to mind.

I'm finding myself at a loss for words
And the funny thing is it's okay
The last thing I need is to be heard
But to hear what You would say

Word of God speak
Would You pour down like rain
Washing my eyes to see
Your majesty
To be still and know
That You're in this place
Please let me stay and rest
In Your holiness
Word of God speak

I'm finding myself in the midst of You
Beyond the music, beyond the noise
All that I need is to be with You
And in the quiet hear Your voice

I'm finding myself at a loss for words
And the funny thing is it's okay

Two months after Kelsey died, I was at the Gala in DC where Karly's art work was being auctioned for proceeds to fund the Inn. I met a lady named Donna. We were instantly bonded by our stories. During the Gala, I found the inspiration to start the DOCK8 Connection. It has been slow, but I vowed it would honor God, Kelsey, and totally be in His timing. So waiting....patiently. One thing Donna shared was how grieved she was. I asked, "Why?" She replied, "Because I keep seeing people with my daughter's disease die" It is not easy connecting people and growing to meet and love them, then learning of their death. Such it is that I am also learning. Being connected to people is what God adores. To be in relationship with others is how we grow and learn and love. I am still grieving, not only for Kelsey, but for the others that have touched our lives....Bubba, Troy, Cameron, and Kara. I don't understand why the children must suffer and die, but I still TRUST God's plan. I recently spoke at a MOPS(mothers of preschoolers) meeting. One question I posed to them was, "If Jesus was sitting next to you on a bus, what would you ask Him?" As I was listening to their answers, they asked me. I was not expecting to answer this myself, but I did. I would ask, "Why the children?" I'm can speculate many answers He may give. But in the end, I would still respond the same. I trust you. I trust Him with all my children. We have them for only a short span. I pray and hope that they have this same response when live issues hit them...I trust you, Jesus. Do you trust Him at all times with all things?
Love,
Mom

Be The Match Donor Drive Feb. 9, 2013

• Be The Match occurring February 9, 2013
  11:00 am – 6:00 pm
  Normandy United Methodist Church
  450 W. Alex Bell Road
  Centerville, OH 45459

  
  CAMERON HARTMAN, despite having a 99% successful bone marrow transplant for a very rare DOCK 8 mutation, lost his battle due to severe complications. To honor CAMERON, his family is hosting a donor drive to raise awareness and help find a match for KARLY KOCH who is also diagnosed with DOCK 8 mutation. Her only possible cure is a bone marrow transplant.
  By joining the Registry you will not only help KARLY, but others like her who are searching for a cure too! There is no greater gift than the gift of Life! The need is great and the solution is simple, but the cure starts with YOU. Please come and support this life-changing event!

  
  
  

  Karly Koch, age 18, has been looking for a perfect match since August 2009. She still doesn't have a match. Even with a perfect match, like Cameron, complications from the transplant can end her life. His transplant was successful, but the complications were great. A less than perfect match or haploid transplant do not give her the best chances of survival. Karly is the younger sister of Kelsey, age 22, who passed away from DOCK8 February 2, 2011 from complications of a double cord blood transplant. She didn't have a match either. As the disease progresses, her need for a transplant escalates. We pray everyday for guidance because the choices we have right now are NOT good choices. We pray and are hopeful that through this donor drive, one of Cameron's legacies will be finding Karly a match.

  Contact: Norman afhnfh1963@yahoo.com or Amy amyh31@aim.com