ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Dr. Jemsek's wife and 5 yr old daughter are both very ill. This comes in the middle of his move to Washington DC.
Dr. Jemsek is one of the best LLMDs out there and he has endured so much while fighting for what he thinks is right. Fighting for us and our right to treatment.
I am looking for ideas from the Lyme community .. how can we support this wonderful family during their time of need?
His daughter has a caringbridge.org site. To follow her status and progress, log in and go to the site jordanjemsek
I checked with Dr. Jemsek before posting this and he has indicated that he and his wife have decided to be open about what is going on.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Those of us who won't give out our email address can't get into the carigbridge site.
Would you mind telling us what the illness is?
Posts: 9931 | From Maryland | Registered: Dec 2007
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
From caringbridge.org....
Jordan was diagnosed with having Leukemia on September 16th, 2009. The type of Leukemia Jordan has is Acute Myeloblastic Leukemia with Maturation, or AML, subtype M2. Jordan celebrated her 5th birthday just recently in July and her mother, Kay, was diagnosed with Breast Cancer just a week prior to Jordan's diagnosis.
posted
Just FYI- the incident a couple of months ago seemed to be an isolated incident and MOST of us lyme patients have gone back to "open" caringbridge sites!
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Betty, I do not think that the family is moving at this time. Dr. Jemsek was due to start in DC in a couple of weeks, and I am not sure he can still go then given the illnesses of his family members.
However, even if he does go on up, I feel his family will remain in Charlotte for the time being. His beautiful daughter is all situated with her treatment and doctors and does not need the stress of a move. Her treatment involves immune supression and a stressful move is probably not in the picture right now.
I am told that Jordan will be in the hospital at least 3 months for the first round of treatment.
I also saw where there is a meal sign up on the caringbridge site. In the links section.
I was not aware there was a problem at the caringbridge site. How can someone put hateful messages out to those who are ill? Amazing. That must be why the family chooses to make the site private. All it takes to get in is an email address and it is not necessary to disclose lots of info or anything.
Also, my box could not be full as I only have about 10 messages in there. Total in and out boxes. There must be a glitch in the system. I have had many more at other times.
Thanks for your help.
ConnieMc
Posts: 2275 | From NC | Registered: Oct 2000
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Such a shame that this wonderful family is experiencing so many serious problems.
I am praying for all of them.
-------------------- 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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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Breaks my heart. Dr. Jemsek is a brave and determined man. I am sure that his wife and daughter have these qualities as well. In faith that welllness will come to both his wife and child.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Wow, so sorry to hear this. They will be in my prayers.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I just watched my DVD of UNDER OUR SKIN and was so impressed with him in that documentary.
How sad for his whole family. I hope some miracles come their way. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Life is just so unfair. This news makes me so sad, but I pray they both come through as survivors and live long healthy lives.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I owe so much to Dr Jemsek and was shocked and saddened at this news.
I hope everyone visits Jordan's website and supports this family any way they can. Dr. Jemsek has done so much for so many; now it is our turn to do what we can for them.
My prayers go out to him and his family.
Posts: 962 | From Charleston | Registered: Jan 2002
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
This is terrible. How much stress can one person endure? This man faces loss of everything dear to him. He is on my prayer list for sure.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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bettyg
Unregistered
posted
connie,
thx for the followup of news.
i got you and melanie reber mixed up; it was HER pm box full; sorry about that.
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posted
I am just about speechless. Dr. J must be a very evolved soul for God to send him such challenges. I adore the man. Feeling inadequate to help.......but will pray. I am in very ill state, from the treatment which is good, but also from the bacteria which has replicated to attack most of my organs. Dr. J has given me hope though. How can we give him some?
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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bettyg
Unregistered
posted
i will be posting some more info on HOW TO HELP FAMILY in near future after i get PJ langhoff's permission.
she's got a secret project started, and she sent a bunch of into to me this afternoon with MORE to come later.
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
I will be praying for all of them also.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I can not even imagine their grief.
My prayers are with the Jemsek family.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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i've been busy on my end, and completely forgot; my apologies....so sorry.
connie, can you edit top and show FUNDRAISER info at bottom so everything is in the SAME post? thanks so much kiss/hug
*********************************************
on pj's allegorypress site, you can see the front cover of the book, and also read her FLYER of more details galore ok !!
******************************
to all receiving this from me,
PLEASE forward to all your lyme list friends by email asking them to forward too ok! hugs
I will post this on LYMENET/MDJUNCTION boards on Friday, Oct. 2...NOT sooner per PJ's request.
If you belong to other lyme boards, you can post there on Fri., Oct. 2, too; huge thanks! *******************************************
BettyG, Iowa lyme activist
And Betty, this is the link for where to get the books......it will be updated to order from the printer after 10/15. OK to put the link there too.
(Just for your info, I am making Tshirt designs too and will post a separate notice on those items next week).
In the meantime, people can send checks in to donate to the address on the web page, and very soon within a couple of days to a week hopefully I will have a non-profit link so people can do the credit card thing.
I wish for this to go around the world my friend, do your best and ask everyone else to do the same.
This family deserves special attention for all they have given to the lyme community.
please read and act on .... thanks xox
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bettyg
Unregistered
posted
latest on jordan from her journal ...
Sunday, October 4, 2009 8:15 PM, EDT
While Jordan is continuing to do well with her treatment and her doctors are happy with her progress, we came to find out some difficult news a couple of days ago.
Unfortunately, Jordan is high risk with her Leukemia, which means that she will have to receive a stem cell transplant.
The family is following the counsel of her team of doctors, who have been wonderful during this process.
Regarding specifics, the procedure is set to occur after Jordan has been in the hospital for about 3 months, one the Intensification 1 stage and resting period are completed.
As for location, that has not been decided but I will inform you all when that is chosen.
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
What are the monetary donations going towards? Is insurance not covering his daughter's stem cell transplant? Are there high copays?
Otherwise, it might be better to just donate it to a Lyme research organization in her name, and send a nice card saying that.
I guess what I'm asking is, are we sure they even need monetary donations?
I would understand if people got together to send some kind of care package, but I feel like normally you give money to cancer patients when they don't have insurance, or they have lots of out of pocket expenses.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I'm not seeing a link to donate either.....am I just missing it? I scanned through this discussion multiple times.
Posts: 4590 | From Midwest | Registered: Jun 2008
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
The donations are being handled through Allegory Press.
When you click on this, you will see the link to the Jemsek family page. PJ Langhoff made a really cool coloring book for Jordan and it is for sale. There is also a link for donations. Also addresses, etc.
Also, "a non-profit link and a credit card link will be established shortly for those who desire a tax deduction". I am waiting for that to be posted myself.
Be sure to go the allegorypress.com to see the cool coloring book PJ designed and wrote.
I don't know about insurance covering all of this. Even so, there will be lots of other expenses associated with something like this. Stem cell transplants are experimental and I hope this will be covered by insurance. But we all know that insurance companies aren't too keen on paying for experimental treatment.
Thanks to anyone who can help. Even $5 times 10 people is $50. Every little bit will help I am sure.
Posts: 2275 | From NC | Registered: Oct 2000
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posted
The latest Caring Bridge update says Jordan will not need a stem cell transplant.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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bettyg
Unregistered
posted
yes, just was sent this ... quoting the site ...
But today, a miracle happened! The family received a phone call from her doctors.
This almost never happens, it seems there had been a mistake in reading Jordan's results!
She does in fact have FLT3, however it is only present in lower quantities. This qualifies her as an ``intermediate risk'' rather than ``high risk.''
She will not need a stem cell transplant!
The family would like to think this was an act of divine intervention : ) We truly believe this resulted from all of the prayers Jordan and the Jemseks have received. There is no one to blame for what happened.
Rather, we are all giddy and refreshed with new hope for Jordan. The next two rounds of planned chemotherapy treatment will continue as scheduled and there is even a small chance that Jordan can spend Christmas at home.
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by bettyg: But today, a miracle happened!
Praying for many more miracles for this family.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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bettyg
Unregistered
posted
be sure to read the fundraising info towards the bottom of this post; thx all
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I'm with Hoosiers. I will sure say a prayer for his family, it is just so sad what they are going through. But I don't get the money part.
I think right now prayers would be way more necessary!
posted
Wow this is so horrific, I had no idea what his family had been goin through and ive been a patient of his for 20 months. My brother is in remission right now after just 8 months of treatment and severe neuro lyme because of this man. Hes selfless and will call you at midnight if you need to talk to him.
I wish I could help him the way hes helped so many people. He is a great person and I wondered why my visit in early septe,ber was brief and he was somber. He is strong and I am sure his family will get to this.
Lindz
[ 10-08-2009, 07:51 AM: Message edited by: Lou B ]
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thank you, P.J.!!!!!!!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Why was the doctor moving to D.C.? Was he moving his practice again?
I can't get over how much tragedy this man must endure.
God bless him. My family were patients of his before his practice in N.C. was "eradicated." I would go back to him in a heart beat. Living in Switzerland makes it hard to return.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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bettyg
Unregistered
posted
good news!! daughter jordan was dismissed from hospital for ONE WEEK until her bone marrow event again.
mom had a lumpectomy and doing pretty good; all 4 will be home together for 1 wk. before jordan goes back to hospital.
lots of interesting stuff on jordan's CB site..
yes, dr. j. is moving his practice to dc and dealing with ALL of this...
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bettyg
Unregistered
posted
up with some good news in it for those who didn't see it
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Why is Dr. Jemsek moving his practice to D.C. Was North Carolina giving him trouble as well?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I tried to go to that website and used my email to create a "membership" but still could not figure out how to view jordon's page. Help please?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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quote:Originally posted by lymewreck36: I tried to go to that website and used my email to create a "membership" but still could not figure out how to view jordon's page. Help please?
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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bettyg
Unregistered
posted
a note today from PJ LANGHOFF, who has created the coloring books and t-shirts as FUNDRAISERS FOR THE JEMSEK FAMILY ...
Hi Betty,
I can't post on lymenet because I was banned all those years ago and although I was asked to come back I don't have the time, literally.
I am working day and night to get the book "God Science" out along with other projects for the lyme cause.
BUT the collection of funds is to help them,
.. yes, because Dr. Jemsek has already lost his multi-million dollar clinic in NC when he was forced to close it for treating lyme patients,
.. not because he did anything "wrong",
.. then he moved to SC and treated patients there and they are once again making him move,
.. again simply for treating patients, not because he has done anything wrong!
He is constantly paying legal representatives to help keep him in business, and without our LLMDs, we have NO ONE to treat us! **********************************
This man and his family have given so much to the lyme community, people simply DO NOT KNOW THE TRUTH about him or what he has sacrificed.
Doctors don't necessarily have the world's best insurance, contrary to popular belief, and with two members of his family in therapy for cancers, you can imagine what those medical bills will come to! (Millions).... ******************************
It is the decent thing to do to give back to a doctor who has given up so much of his life for thousands of patients all over the world and who is leading the way with treatment protocols that are helping the sickest of patients.
Even if we can only give a small amount, it lifts him up financially and also in support of his willingness to continue to fight despire the opposition who will take down any and all LLMDs if they possibly can!
However you wish to post this, I appreciate it.
Thanks Betty for all you do!
PJ
**********
to those who were asking earlier WHY we should be making donations to dr. jemsek & his family, i hope pj's explanation above will answer your questions. hugs
**********
pj's coloring books are DONE & ready to sell to raise money for the jemsek family.
if YOU are unable to buy, have about telling family, friends, your kid's teachers, sunday school teachers, etc. about this??
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Does anyone here know anything at all about how Dr. Jemsek's wife and daughter are doing with their cancer treatment?
I was following his daughter Jordan's caringbridge.com site but there have not been any updates since Thanksgiving.
Maybe I am assuming too much, but it does worry me. I worry that it means things are not going well.
I am reluctant to email Dr. Jemsek to ask ... he has so much on his plate already.
Does anyone here know how things are going for his family?
Thanks!
ConnieMc
Posts: 2275 | From NC | Registered: Oct 2000
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I had the same concern Connie, but was thrilled to read a Dec. 22 update on Caring Bridge.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
quote:Originally posted by hshbmom: I had the same concern Connie, but was thrilled to read a Dec. 22 update on Caring Bridge.
Yes, finally! I was sooo worried. Can you believe that Jordan's mom (who is currently being treated for breast cancer) broke her leg? Good grief, haven't these folks been through enough?
Posts: 2275 | From NC | Registered: Oct 2000
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