kjkblog

Tuesday, April 14, 2015 - 14:41
This video shows a huge portion of my life(without me being in it). Welcome to NIAID! I love this video because I have grown up in this hospital. I have relationships with these doctors that have studied me and have known me since I started going to NIH in 2001. Brittany is one of the DOCK8 family that I met several years ago. Welcome to part of my world! smile emoticon



Praise God for Dr. Su, Dr. Freeman, Dr....
Sunday, April 12, 2015 - 16:07






I would like to share all the links to Karly's story since Oct. 13, 2013 to present on this page of the blog. The first video is Karly's take on how, when, or if to choose a bone marrow transplant without a match. The second video is on Feb.1 after her first-ever of its kind, ground-breaking, pioneering haplo-transplant for Dock8. The third video and story is relating a document we used in March of 2014 to give Karly a voice in the event of her death.
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Saturday, April 11, 2015 - 21:04
Karly had a trip to NIH on March 11-13. It went well. She is still doing well. All is well. She continues to have either a virus show up on her skin or some GVHD. Neither are bothering her way of life. Her heart and kidney remain stable. We still pray for a full recovery of these organs. She still has some undiagnosed joint pains in her knees, ankles, and feet. X-rays were taken and show some lytic lesions. We will be meeting with a specialist in May. She "badly jammed" her left index finger...
Thursday, February 12, 2015 - 11:22
Things have been going well. She had a little bump in the road in January with her skin about 10 days after she stopped the tacrolimus. We flew to NIH to get a biopsy. As usual, it was atypical. It looked a little like it could be GVHD, but still looked like something viral also. It turns out, it could have been a little of both. However, upon cutting the specimen deeper, it looked viral. It has cleared up now. Things like this can happen. It is best to just roll with it. When I told Karly that...
Saturday, January 24, 2015 - 15:31
Karly was at her Congestive Heart Failure doctor on Friday. What a great report we were given. The EKG is normal, so the medications must have been the culprit. Her heart sounds good. She may want to add another heart drug so it can work less hard, but all in all GREAT! Her kidneys are a little happier. She will be getting another ultrasound of her kidneys in the next month or two to see how the pressures are going. If it has worsened, then she will need to have them ballooned again. If...
Saturday, January 10, 2015 - 14:18
     1 Thessalonians 5:16-18, "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." This verse is one that describes where we are right now.
     We are so joyful in Karly's progress. Her doctors claim her as their poster child for the DOCK8 Haplo-Bone Marrow Transplant. They are so pleased with where she is at this point. They even brought in a couple Johns Hopkins doctors to affirm...
Thursday, December 25, 2014 - 18:49
I felt like I just needed to give a brief update as today is Karly's 5-month birthday! She is doing so well. This is the most normal we've seen her in 5 years, so we have much to celebrate. She still goes for weekly labs, and we have been very happy with the results. The Creatinine is still high, but has been 1.9 for 2 weeks. We continue to just monkey around with the dosing of things and hang tough until we can start to wean them. We ask for prayer during this flu season, since the vaccine...
Sunday, November 16, 2014 - 17:25
It is great to be home! I guess that is why I haven't written for awhile. I keep seeing things that were patiently waiting for my return. Two of the biggies were: Kassidy wanted to change rooms and I wanted to get the van back into the garage. Of course one thing leads to another. Happily, things are going very well. Karly has been getting labs drawn once a week. Except for the Creatinine remaining high, all are stable. We saw her advance congestive heart failure doctor last week. She was happy...
Friday, October 31, 2014 - 12:26
Praise His Holy Name! Day 98 and we are at the airport. Everything except Creatinine is good. She did have to start an additional antibiotic, because all her sinuses are growing gram neg bacteria. That's okay...hopefully the sensitivities come back susceptible then we continue on what she's started. Probably going to have ultrasound of kidneys sooner than scheduled. She is almost at her all time high like back in ICU in March. I didn't realize how high it had gotten back then. Good news is...
Friday, October 24, 2014 - 08:23
All plans are still a go for coming home a week from today. This is getting more exciting the closer we get. Last week, I couldn't say that I was content in leaving, but this week I have become more restless about being here. It is time. The Lord is preparing us to leave. We rest in the peace God has given us and look forward to where He leads. There will be a lot to do from this end, but all with a fabulous goal on the other end. We celebrated how far we've come with Karly's doctor and nurse...

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