Lyme doctor in desperate need of help

Discussion in 'Lyme Disease Archives' started by maps1, Dec 2, 2010.

  1. maps1

    maps1 Member

    I don't see this posted here so thought I would add it:

    Here is a plea from Dr. Jemsek regarding his daughter, please pass this through all facebook and other social media... this is so much simpler than I thought ... just an inside cheek scrape and send it in.

    He dedicated his career to helping Lyme patients bringing them from the brink of death back to the land of the living, now it is our turn to help him and his family. He continues to help us.




    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.
  2. Nanie46

    Nanie46 Moderator

    Hi maps,

    Thanks for posting this.

    I saw it on lymenet.

    I tried to post it on facebook but I got a message that said the max # of characters for a status update was something like 430 and this message has over 4500 characters.

    I wonder how I can post it there....anyone know??

    I sure hope they find a donor match soon.

    Hope you are doing well, maps.

    Take care!
  3. maps1

    maps1 Member

    What I did was go to lymnet and the page that displays the letter (under medical) and then I posted that link on facebook, there are a few messages attached but it is better than not posting it at all but I am sure there is a better way. I just go around and post it anywhere I can and as a reminder to facebook friends am going to post the link to Jordan's progress on a regular basis.

    I hope they find the right donor too I can't imagine what it would feel like to have a child so sick. There is also a story on his website under newsletter that gives the link to a newspaper to which his wife sent in a mothers day story, it is really moving.

    Not only did her mother die of cancer but a week later she was diagnosed with breast cancer and only three days later thier daughter was diagnosed with leukemia, it is just so unbelievable one family can be given so much hardship.

    Take care
  4. Nanie46

    Nanie46 Moderator

    Hi,

    I will have to go read that link with the Mother's Day story.

    I found out how to post this on Facebook. Someone on lymenet told me.

    On my FB page I entered "notes" in the search box.

    The first result that came up was the Notes application.

    I clicked on it and a "notes" screen came up where I could post the entire thing with no problem.

    I did edit his name and posted it as Dr J. Some say to do that and others say that he has been in the spotlight alot so it doesn't matter.

    I'll be gone from the boards for a few days.

    Going on a little trip.

    Should be back Tues, Dec 7.

    Take care!
  5. victoria

    victoria New Member

    Thanks for posting this here... I should've thought of it, I am so grateful to Dr. J myself on behalf of my son, as is my whole family.

    Nanie, it is on FB, many people have posted it/shared it, including me. Let me see if I can find it.

    OK here it is:
    http://www.facebook.com/home.php?#!/pages/Lyme-Friends/59168970883