All Posts Tagged With: "http://www.caringbridge.org/"

NOTE:  If you have Lyme disease DO NOT DONATE…..

 Members and Friends
The courage the Jemsek family has shown facing life’s hurdles has given us a example of how to deal with our own adversities.  As they face renewed challenges, it is time for us all to reach out and do what we can to support them in their hour of need.
 
Please read this letter from Dr. Jemsek to the Lyme Community.  While Lyme patients cannot be direct donors, we can ask our healthy friends, family members and neighbors to consider this humanitarian request for a fine family that needs our support.  Please recirculate this message widely and as quickly as possible. 
 
Thank you,
NatCapLyme
 
Dear patients, friends, and family,

          My wife Kay and I are writing to you today to make a somber request on behalf of our six year old daughter, Jordan.  As most of you may already know, last September 2009 Jordan was diagnosed with acute myelogenous leukemia (AML). She received outstanding  care during several rounds of extended chemotherapy while hospitalized for 6 ½ months at Presbyterian Hospital in Charlotte at the Hemby Cancer center.  When Jordan was declared in remission  we were finally able to bring  her home on Easter day this Spring.  After several joyful months at home with Jordan, this past week we were devastated to learn that Jordan has relapsed. In the upcoming weeks, she will begin receiving chemotherapy in preparation for a bone marrow transplant that she will have later this winter.

          Last year, after much research aided by the excellent support of the Hemby physicians in Charlotte and the Pediatric Oncology Department at Children’s Hospital in Washington, DC,  we were already exploring the option for Jordan to have a bone marrow transplant in the event that the chemotherapy was ineffective.  Unfortunately, neither members of her family, nor those in the national donor registry provided a satisfactory match.  Unfortunately, at this time we are left without another option and must proceed with a bone marrow transplant for Jordan to survive.  We anticipate that the transplant will occur in March/April 2011 at Children’s Hospital in DC after Jordan undergoes an estimated 3 months of induction chemotherapy at the Hemby Center; she is on her way to the hospital with us today.   In order to increase the likelihood that we find a better match for Jordan, we are asking friends and family to participate in joining the National Marrow Donor Program. Because patients are most likely to match someone of their own race or ethnicity, please be aware that Jordan comes from a Scottish, Irish, and Ukrainian background. We have outlined the simple steps below in how one can get signed up to be part of this registry.

          For all of our patients and others suffering from  Lyme Borreliosis Complex, the highly disturbing irony is that the National Marrow Donor Program (NMDP) does recognize chronic Lyme disease while the general community does not. As part of the NMDP medical guidelines, patients with  ‘chronic Lyme disease ‘ may not register (details on the linked site below).  However, we would humbly request that those individuals struggling with Lyme Borreliosis encourage other family members and friends to consider joining the registry.

          As for those of you wanting to be tested specifically as a match for Jordan, i.e. a designated donation, due to the complicated process and cost of being tested privately, we instead recommend and request that you enter the general registry. We greatly appreciate all of the prayers and overwhelming support that our family has received, and we ask for you all to continue to pray as we continue on our journey towards Jordan’s recovery from this devastating disease. If you have questions, please contact Elizabeth Ballas at mailto:eballas@jemsekspecialty.com?subject=Jordan Jemsek.   As before, regular updates will be posted to http://www.caringbridge.org/ under keyword jordanjemsek.
 
God Bless,

Dr. and Mrs. Joseph G. Jemsek 
 
From the National Marrow Donor Program website:
 
In order to get signed up in the Be the Match Registry, please follow these easy steps.
 
1. To get signed up now, you can register online and have a test kit sent to your home!
    • Go to this website and follow the instructions: http://www.marrow.org/JOIN/Join_Now/join_now.html
 
              o Confirm you meet basic registry guidelines. (Must be between the ages of 18 and 60. Please pay special attention to the medical guidelines)
              o Complete the online form and order your registration kit, which should arrive in 7-10 days. It is free to join and get tested, but please also consider making a financial contribution.
              o Follow your instructions in your kit to collect a swab of cheek cells and return the kit in the mail.

2. If you’d like to get tested in person, please use the following link to locate a nearby donor drive or recruitment center.
 •  http://www.marrow.org/JOIN/Join_in_Person/index.html
 
For more information, please visit: http://www.marrow.org.