Saturday, August 3, 2013

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?

Friday, January 25, 2013

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 or Amy

Monday, January 21, 2013

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.