ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
From: "Dr. J, MD" Date: November 29, 2010 12:52:36 PM EST To: "undisclosed-recipients:"
Subject: A personal message from Dr. and Mrs. J regarding our daughter Jordan
November 29, 2010
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 1/2 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 [email protected]. As before, regular updates will be posted to www.caringbridge.org under keyword jordanjemsek.
God Bless,
Dr. and Mrs. J
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!
Confirm you meet basic registry guidelines. (Must be between the ages of 18 and 60. Please pay special attention to the medical guidelines) 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. 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.
posted
I am feeling so bad for Dr J and his family. That man has been through so much and has done a lot for the lyme community. Before I became ill, my husband and I both joined the registry to become donors. My thoughts and prayers are with the family.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying that a match will be found for Jordan and she will be cured.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Connie,
Thanks so much for convey this sad news as hope does still flicker and we may be able to bring that to a full bright light for Jordan.
For those of us who cannot donate, we can pass this note on to friends and family, and key acquaintances. There have to be several good matches come out of this, somehow.
"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." (end quote)
I wonder if anyone knows people in Ireland, Scotland or the Ukraine, too? Or such communities here so that the likelihood of a match might be better by going right to those of those backgrounds.
Who ever heads up the St. Patrick's Day Parades in any city might have a good sense of where to start with this. Other ethnic festivals - or even restaurants with ethnic cuisine may hold some keys.
But I'm all out of steam. Just brainstorming. I just passed this on to a friend in an Irish language study group. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Terrible that she will still need more treatment. Most of the people who read this forum cannot donate, but maybe there are others who could be contacted. Very many Irish and Scottish descendants in the U.S. Don't know about Ukrainian.
Posts: 8430 | From Not available | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Universities often have ethnic organizations. If anyone has lots of energy, one might find really energetic college students to circulate this search. And, even outside of ethnic organizations, colleges and religious centers may be good uh --- can't think of the right closing word. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Just thinking - maybe general consulates for these countries could put out a request -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
FYI I just looked into this and any Canadians can join the registry as well...the systems are connected. If you happen to be a match for Jordan, they will find you.
[email protected] is the email address for onematch...company that does it here in Canada.
I really hope people step up for this. Imagine the stress his family went through for us Lyme patients. Anger, financial troubles, etc...He is not an LLMD that does this for money. He fought the power because he knew many would suffer if he didn't and he couldn't turn his back. The least people can do for a real life hero is give a little blood sample and/or encourage family members to do the same.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When passing on this letter to your friends and acquaintances, you may want to add a little personal detail so that they know just who this fine doctor is. It will add credibility, especially if they can SEE him in this film: ---------
As one lyme specialist who is featured in the lyme documentary, "Under Our Skin" - 3/4 of the way down, see short detail for Dr. J.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I have passed this on and just say he is a great LLMD who has done a lot for our community. I've posted on Facebook and shared it for prayers.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
How do I post this on Facebook?
I tried to post it as a status update and I got a message that it exceeded the max amt of characters allowed (by over 4000!)
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Write it as a fb note... PM me if you need help finding notes on fb. I can walk you through it. It's easy.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks for your help momlyme!
I searched and found notes and posted it.
I didn't even know that notes existed on fb...lol.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Glad you found it!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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