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

  

  

Dancing Through The Rain-January 2013

Just an update...her last 2 visits to NIH have been a bit on the rough side because she hasn't found a nurse on the adult floor that is as capable as the one she had for years on the pediatric floor. Her IV's haven't gone well, getting meds in has been extremely slow which causes other things to be difficult. This past visit was better, and she may have found "HER" new nurse. She is reserving judgement until her visit next week. She has needed iron the past 2 visits because she has been so tired. It seems to have been quite helpful...the past 2 weeks have been better. The doctors have once again been talking about transplant for Karly. This is something we try not to think about. It makes me nervous in the pit of my stomach. Karly still doesn't have a match. Our doctors have been talking with doctors they know from John Hopkins who have been successful(not sure the statistics on that) with Haplo-Transplants for cancers patients. I don't know if they have done any immune-deficiency diseases. The European transplant doctors don't think this is something we should do and think her chances with the 9 out of 10 match would be better. The 9/10 match has been available for years, but our doctors don't like her chances with that. So, we are faced with three bad choices...two transplants which no one is excited about doing or nothing which makes them very nervous. So clearly, we all need to hear God on this. They will be flying me out to meet with the John Hopkins doctors on Monday, Feb.18. I have my sister, Debbie, going with me to help with questions and digesting information. I have been busy researching and compiling questions. We will meet with our doctors on Tuesday, Feb.19.

We met a 10-yr old boy named Cameron at NIH in February 2012. He had been on a difficult journey with his DOCK8. They began his transplant process and in July 2012 he received his new cells. Cameron was in the Cincinnati Children's hospital for 181 days before he went a truffle-shuffling with Jesus. Cameron had a perfect match, but died from complications from the transplant. This is just more evidence that Karly's choices are pretty scary with less than a perfect match. We are still praying that she can find a perfect match, but also for God's will for her. Cameron was so special and loved blessing others in his journey of life. He had told his family that when he got home from his transplant, he wanted to find Karly a match. We were able to attend his funeral on January 12. His grandpa read a letter he had written to Cameron after he passed. Toward the end of the letter, he said that they were going to hold a donor drive for Karly. We were sitting there hearing this and boom, blown away. I had totally forgotten that they had told us that and never thought about it because Cameron's journey had been so hard. This family is grieving and yet, thinking about us and making Cameron's wish come true. They have set the date of February 9. When I get the details, I will post them here just in case you or someone you know can go. Wouldn't it be so great that Cameron's legacy saves Karly's life.

God is so good. I marvel at his timing. The doctors started communicating about the transplants on Wed. Jan.9, then 10, and finally 11th....none was great news in my eyes, yet so glad they are trying to find a way for Karly to survive. Hearing on Jan.12 that another series of donor drives are coming our way gives us more hope. We have hope, but our hope is in the Lord...and it seems that this means waiting patiently on HIM. We are waiting. Please continue lifting these things to the Lord. We thank you for staying with us in this journey.
Love,
Mom

Dancing Through The Rain 2012

The last month of this year, WOW! January started out with a bang with Karly's laser surgery which took about 4 months to recover. By the end of that semester, her classes were caught up, and she got A's in both. This was amazing since she had wanted to drop it all about midway through her healing process, but she once again persevered through it all. Summer was a blast with Tracy and I celebrating our 30-yr. anniversary with a cruise to the Caribbean. It was a special time for us. We took the girls to Niagara Falls, Boston, Massachusetts, and Portland, Maine. We had a blast exploring new places and eating awesome seafood. East Coast is the only place Karly can eat seafood...and Oh how she enjoyed that. We had a Bunning family reunion at Cedar Lake which was super fun with the siblings, cousins, aunts, uncles, and Grandma. Played soccer, volleyball, swam, kayaked, played Signs, link tag, had a fire, roasted wieners and marshmallows. Both boys were able to attend with us which is becoming more of a rarity, but cherish each moment we get. After Karly's emergency situation in Sept/Oct, she has been fairly stable. She remained on an IV antibiotic and antifungal for about 5 weeks. Once again, she got behind in her classes and is still trying to catch up, but by the end of the semester, she will have made it again. The longer she is off the antibiotic, the more she tends to feel poorly. Pray for endurance, strength, and healing. Hopefully, she will be able to rest a lot of the Christmas break. She still travels to NIH every 3 weeks alone. She finally met a DOCK8 female about Kelsey's age. I am hoping this will be a relationship that is helpful to her. This gal is going through a bone marrow transplant right now. Her brother was successfully transplanted in Feb. 2012 with stem cells and living a much better life. The website is coming along slowly which is okay with me. Pray with me that it all comes into place in His timing. I have been enjoying a more regular season with the younger girls(ages 11 & 13). This has been a very rewarding and peaceful time for me. Tracy still is teaching music in the elementary and singing on the Worship Team at church. He works out faithfully at the Y, and completed the Hilly Hundred again this year. All in all things have been more what one would call normal, although, nothing really seems normal. I think about Kelsey everyday. I try to remember not to get stuck in self-pity for only when that happens does things turn sorrowful. She is in Heaven, happy, dancing and praising the Lord! She has no regrets, only perfection. One day we shall have it too. Merry Christmas to All and God Bless Each and Every One of You!
Love,
Mom

Karly's Dance Through The Rain

The last week was on the scary side. Just to follow up about her scans, they passed inspection. Praise God! Her WBC and CRP counts have come back down. CRP is not quite down far enough yet, but was moving in the right direction. Karly hadn't been feeling very well since about Sept.20....probably fighting off a virus. She traveled to NIH on Thursday, Sept.27 with her scans on Sept.28. It seemed as though her neck was a little thick when Tracy left her at the airport. The ENT doc said her esophagus looked thickened. She began experiencing an increased swelling in her lymph nodes on Saturday morning. The swelling just kept slowly increasing, next came pain in her teeth, then pain in the throat, and her entire neck was sore to just touch the skin. By 4:30am Sunday morning she looked like she had the mumps. She texted a photo to her nurse case manager who sent it to her doctor. She talked with her doctor Sunday morning, and Aunt Debbie and Deana drove her quickly to NIH. She was admitted and seen by a doctor on her team. IV antibiotics were started and pain meds. Her pain level was 9/10 which she has only had a couple times in her life. Karly was living in another dimension because of the medication, Versed. I am actually glad that she cannot remember this. The swelling was increasing at an accelerated rate. Her doctor came in and took one look and sent her to the ICU. She didn't have a neck, the pain was intense; she could barely move her head, and couldn't open her mouth. A hefty dose of steroid was administered and given 2 hours to work. After seeing no positive reduction in the swelling, the team was very concerned they were losing her airway. The CT showed her glands were the size of plums pushing on both sides of the trachea closing it. Through much anxiety and fear, we were gently persuaded that she needed to be intubated. This was the first time we had been back in ICU and facing intubation. Her family and I talked with Karly on the phone and felt she was handling it very bravely, and she understood the situation. We were very grateful that the doc that performed it was very familiar with us, Kelsey, and our anxieties. He "handled" me and my questions very well. I teased that everyone must have decided to draw sticks, and he got the short one. Anyway, he called me right after the procedure, it had gone well, she was sedated for the night, and that we had made the right decision to intubate...it was very narrow. I was on a flight the next day. I talked with her nurse case manager first thing as he walked thru the doors to work Monday morning. He went to see her right away and found her awake and holding her phone. He immediately called me and told me how she was doing. I was so relieved that she could be awake and not fighting it. I got to the hospital in the afternoon, and it was a happy time to see each other. My sister and Deana did so well taking care of her, speaking with the doctors, and advocating for her. The swelling started coming down, ENT looked again, and decided that the airway was looking good for the tube to come out on Tuesday. She handled that very well also. She was able to speak right away. It hurt, but nothing like it had been. The pain and swelling were moving in the correct direction.  Later Tuesday evening/Wednesday is really when Karly came back into reality. She had to pass a swallow study in order to able to eat again. She went for that on Wednesday. She passed, however, Karly has a steady history of getting larger pills and food stuck. What was really good was that FINALLY that happened during the study. The pill stayed stuck for quite awhile, but what was most disturbing was that her parotids were swelling again at that point. They got her back to ICU for observation. The swelling didn't progress, but took another day to start going back down. Since she had passed the study, she was able to eat...just not much...her stomach didn't want very much and it hurt her glands. We were finally discharged from ICU on Thursday to a regular room. Another first, the floor she likes was full; she was put on the adult floor. It is a change...definitely prefer the other floor and nurses. The swelling has continued to go down. The steroid continues to be reduced. All good things. Another first for the nurses and doctors here was this story. Early the morning she was moving to her new floor, she had stepped on her already bad IV. It was pulled and another was started below that one. They ran medication thru it in ICU before we left. After we got to her floor, she was started on another IV med. After a bit Karly says that she is wet. I look over and at first think she is sweating(she had a heat pack on the new IV) After looking closer I see her IV med trickling out the hole of the previous IV. She was leaking the IV med into her gown and robe. We called in a nurse, she put pressure on it. It didn't stop. She called in another nurse, she didn't know. Finally in comes a doctor who decided to just move up the PICC line placement. She made it happen very quickly. The nurses had said that had heard this could happen, but had never seen it. How odd! Another disturbing event, that perturbed me mostly and frustrated her, was that her Bactrim was discontinued in ICU. I had even asked the ICU fellow that question directly, "When are you going to give her Bactrim that she was desensitized to?" His comment was that it would stay in her body a few doses." But the problem was it had already been 2 days. When her primary doctor heard of this, she wasn't pleased. An allergy consult was required. It was determined that in the current situation with what Karly had just been through, they had to desensitize her again. It was a 4 day process. What we chose to see as good was that since we had no diagnosis and didn't know what the swelling would do coming off the steroid, being here to observe was safer for her. It has all worked out. We have a flight to come home on Monday with home health in place for the IV meds. I can only think that these happen to us for God's greater plan. I just keep trying to find this plan and jump in. He definitely keeps things swiftly moving around us, but so grateful for all of it.
Love, Mom