The CGD Café

Our son, Lukas was diagnosed with CGD when he was 2 years old.  He was hospitalized at that time, but since then has not had any complications.  We've met with doctors every few years since then and discussed the bone marrow transplant option.  Through genetics testing, he has X-linked CGD and it has been recommended that he (now age 10) have a bone marrow transplant.  We have done tons of research and have made the decision to have his transplant in Cincinnati, Ohio.  Due to his current health condition, no major organ damage, and his age this is the time to do it.  An 8/8 unrelated donor has been identified and we will proceed with the BMT at the end of February.  We just completed his pre-evaluation testing and all looks good.  If interested in following Lukas' journey to a cure his website is http://www.caringbridge.org/visit/lukasn.  Please keep our family and the donor in your prayers.

Here's my wish to each CGD family for a Happy Healthy New Year! 2009 was a good year for me, no major health issues, no hospital stays. I hope 2010 will be a good year for all of you!

Karen

I am wondering if any here has experienced cellulitis, and if so, what organism was found to be the cause and how that was determined.

 I have been in the hospital since Sat. when the rash first began, although the fever first started right after getting my flu and pneumonia vaccines on Thursday.  The infection is on my upper arms where I received two shots.  They did a CT Scan Sat and did not see any air, abscesses or gangreous tissue, which is good.  I've been on Levoquin and Vancomyacin Sat evening & Sun evening, and today they changed it up to Vancomyacin, Nafcillin, and Meropenum because, while my fever did break, the rash continues to spread.  The blood cultures are negative, which is good since that means it is still just skin/tissue involvement only, but it means we don't know for sure if it is staph or something else.  Just looking for others' experiences.  Thanks!

My son, Jordan age 13 had his bone marrow transplant on Friday, October 16, 2009.  He is doing wonderful and we are waiting for engraftment any day.  Please feel free to follow his progress at www.caringbridge.org/visit/jordanrudel

His donor was  a perfect 10/10 unrelated match.  We have waited 2 years since we started this journey.  Texas Children's hospital has done 13 bmt's for CGD....  all cured.... Praise God.

Hi

I have been granted a wish from the make a wish foundation. I have always wanted to see the moulin rouge in Paris, so they have granted my family and I a week touring around Paris!! We will hopefully be there for New years and get to see the eiffel tower light up at midnight!

 My health is great at the moment with just regular checkups!

Shannen

Hello All,  Domenic has been having his ups and downs with a long lasting pnuemonia that seems to just hang on. On the bright side Make A Wish Foundation has granted Domenic his wish and they will be installing a beautiful playground in our backyard for him. ( pirate theme)This is so exciting for him his own special playground he picked out we are all looking forward to the start of constrution.

Also if there are any local CGD families in the Boston area we would like to communicate with you I'm sure we must share some of the same doctors. Or anyone else for that matter.

Well I hope everyone is doing good and bless you guys all having BMT's good luck your in my prayers.

I wanted to know with CGD carriers with lupus like symptoms.  And how Rheumatologists react with negative ANA and Anti Ds DNA antibodies.  I would like to know skewing of functional white blood cells.  Any one experienced with it.

I wanted to know with CGD carriers with lupus like symptoms.  And how Rheumatologists react with negative ANA and Anti Ds DNA antibodies.  I would like to know skewing of functional white blood cells.  Any one experienced with it.

Hello CGD families,

I started a blog for Jaden to chronicle our journey from CGD diagnosis through his cure (he will be getting his cord blood transplant on July 9th at Duke):

 http://jadendhaliwal.blogspot.com/

I would love to share information and provide support for other families in the same situation. Fell free to visit our blog and post comments. Please keep Jaden in your prayers as we leave for Duke on June 12!

 So excited but anxious as well. Pray all goes well and we come back home cured of CGD!

 Kiron

Hi everybody.  I have not posted or read anything for some time.  My son Gord is now 18 years old and doing very well.  We have recently been in contact with  the NIH and they have offered a clinical trial for us to participate in.  Has anyone had much experience with this situation?  Gord is planning on attending University in the fall and we were wondering how disruptive vs. helpful this might be?  Thanks for any input.  Kathy W.