Urgently In Need Of A Bone Marrow Transplant

[george]

We got this email to the Forum, and I publish it here

Urgently in need of a bone marrow transplant

From: "Vibeke Lyssand Leirvag" <[email protected]>

To: <Forum>

Sent: Friday, September 17, 2004 9:03 AM

The 13-year old daughter of a Bangkok resident and friend has been diagnosed as having Leukaemia Type AML-M3 and urgently needs a bone marrow transplant to survive.

The transplant must take place in Scandinavia / Europe in order to comply with terms of Medical Insurance.

Does any member have knowledge of and/or can recommend a Hospital and Donor Bank ANYWHERE in Scandinavia / Europe.

Please reply to Vibeke Leirvag at [email protected] AND [email protected]

Thank you.

[bkkmadness]

George,

Since it's of urgent importance I'm thinking you might be better putting this up the general topics or news clippings section. I rarely look at this section and if this wasn't the last thing posted I would never have seen this at all, and I expect many others check the other two sections a lot more often as well, so it might get more page views and the help/info might get to the family quicker. It's your call and I don't want to tell you how to do your job, but I think given the urgency and importance of this piece that having it in the 'wrong topic' section might be useful this once. Best of luck to the family.

[george]

Topic moved to "General Topics".

[ka12345]

http://www.tobiasregistret.stockholmcare.se/indexEng.htm

[Spee]

The 13-year old daughter of a Bangkok resident and friend has been diagnosed as having Leukaemia Type AML-M3 and urgently needs a bone marrow transplant to survive.

They might want to start here:

Nordic Society for Pediatric Hematology and Oncology (NOPHO)

http://www.nopho.org

She needs to get her bone marrow tested and typed asap, so that searches for matching donors can begin. Have her parents and/or siblings been tested yet?

As a leukemia survivor, I wish her all the best. If they want to PM me, I can get them in touch with my oncologist, who is based in the states but has contacts all over the world.

[davethailand]

Can't help i'm afraid but i have a twin brother lost through leukemia, so i wish her all the best.

[Bizz]

Cant help either but had sister same age that we lost with leukemia,

Anyone that can help please do you will be rewarded.

My prayers are with the child and the parents.

[nogutsnoapplepie]

Medical treatments

Stockholm Care offers a wide range of services that are successively extended. Examples of conditions we can treat are listed below.

BONE MARROW TRANSPLANTATION

The bone marrow transplant program at Karolinska University Hospital is a complete program with the capacity to perform allogeneic or autologous stem cells transplantations in all currently internationally recognized indications. The program is a cooperative effort between the Departments of Medicine, Pediatrics, Transplantation Surgery, and Clinical Immunology. Approximately 55 allogeneic and 45 autologous transplants are performed each year.

The most common indications are acute and chronic myeloid leukemia, acute lymphoblastic leukemia in children, multiple myeloma, and breast cancer. The latter indications are most commonly performed with autologous stem cells support. We also have a strong interest in metabolic and genetic disorders including thalassemia.

The hospital is a member of the European Group for Blood and Marrow Transplantation (EBMT) and accredited to perform unrelated donor transplants from both the EBMT and the North American Marrow Donor Program.

Results: The results of the Huddinge Bone Marrow Transplant Program have been reported in several articles published in international journals and has also been presented at bone marrow transplant meetings in particular the meetings organized by the EBMT. Our results meet high international standards. Two examples are that 31 out of 35 (88%) of patients with chronic myelomic leukemia (CML) transplanted after January 1, 1990 with HLA-identical sibling donors are alive and currently disease free. We also have a very active transplant program with unrelated donors and our results are comparable to those with HLA-identical (HLA, Human Leucocyte Antigen) sibling donor transplants for CML in chronic phase. Currently 12 out of 14 patients who have received unrelated donor transplants after January 1, 1990 for CML in chronic phase are alive and disease free. However, the follow-up is significantly shorter for these patients than for patients who have received transplants from sibling donors.

Treatment duration: The patients who will receive allogeneic transplants are admitted to the hospital approximately one week to 10 days before the transplant for clinical evaluations and thereafter start of the preparative regimen. The duration of hospital admission after transplantation is approximately three weeks. The patient is thereafter observed in the out-patient clinic twice weakly until three months after transplant. During the latter period, the patient can stay in the Ronald McDonald House situated on the hospital grounds with easy access to all hospital facilities.

The treatment period for autologous stem cell transplantation is first an out-patient period of approximately ten days during which peripheral stem cells are harvested by pheresis at the Huddinge University Hospital blood center. The patients can at this time stay at Ronald McDonald House or at a hotel situated close to the hospital. The patient are thereafter admitted to the hospital for pre-transplant evaluation and chemotherapy. This time varies from two days to a week depending on the diagnosis and the selected preparative therapy. The duration of hospital admission after transplant is approximately two weeks. The need for follow-up of patients after autologous transplantation is varying but is usually significantly shorter than for allogeneic transplant patients.

http://www.stockholmcare.se/medical%20treatments.html

Norway

The Norwegian Bone Marrow Donor Registry

Match code: Norway [N]

Tel: +47-2307-3770

Fax: +47-2307-3780

Email: [email protected]

Dr. T. Egeland

The Norwegian Bone Marrow Donor Registry

Institute of Immunology

Rikshospitalet, The National Hospital

N-0027 Oslo

Norway

Contact Persons:

Torstein Egeland, MD, PhD; Med. Dir.,

Email: [email protected], Tel: +47-2307-1379

Irene Andersen, Head Med. Lab. Techn.,

Email: [email protected], Tel: +47-2307-3772

Sissel Strøm, Donor and Transplant Center Coordinator,

Email: [email protected], Tel: +47-2307-3770

Jenny Smaadal, Donor and Transplant Center Coordinator,

Email: [email protected], Tel: +47-2307-3771

Denmark

The Danish Bone Marrow Donor Registry

Match code: Denmark [DK]

Tel: +45-8949-5310

Fax: +45-8949-5333

E-mail: [email protected]

Prof. Lars Fugger

Bjarne Moeller, MD

Dept. of Clinical Immunology

Skejby Sygehus

Aarhus University Hospital

Brendstrupgaardsvej

DK-8200 Aarhus N

Denmark

--------------------------------------------------------------------------------

Bone Marrow Donors Copenhagen (BMDC)

Match code: Denmark-BMDC [DK2]

Tel: +45-35-457631 (Secretariat)

Tel: +45-35-457638 (Coordinator)

Fax: +45-35-398766

E-mail: [email protected]

Prof. A. Svejgaard

Bodil K. Jakobsen (Coordinator)

Tissue Typing Laboratory

Dept. of Clinical Immunology, Sect. 7631

National University Hospital (Rigshopitalet)

Tagensvej 20

DK-2200 Copenhagen

Denmark

Finland

Finnish Bone Marrow Donor Registry

Match codes: Finland [FI]

Tel: +358-9-580-1389

Tel: +358-9-580-1298

Fax: +358-9-580-1495

E-mail: [email protected]

Mrs. J. Veinio (Registry Office)

Dr. J. Partanen (Head of Department)

Finnish Red Cross Blood Transfusion Service

Kivihaantie 7

FIN-00310 Helsinki

Finland

--------------------------------------------------------------------------------

Finnish Cord Blood Registry

Match codes: Finland CORD [FICB]

Tel: +358-9-580-1396

Fax: +358-9-580-1542

Email: [email protected]

Dr. Riitta Kekomaki, M.D., Ph.D., Director ([email protected])

Ms. Anne Arvola ([email protected])

Finnish Red Cross Blood Transfusion Service

Kivihaantie 7

FIN-00310 Helsinki

Finland

[Wolfie]

Some good information there.

Our thoughts are with her, and her parents.

[bkkmadness]

Please reply to Vibeke Leirvag at [email protected] AND [email protected]

Is George passing the info on? If not make sure you mail these people the info. I'm sure the family will really appreciate it.

[Spee]

I'm sure the family will really appreciate it.

Sounds like they are appreciative. I forwarded some of the feedback via e-mail and the father wrote back to say thanks. Hopefully everything will come together in time, and more importantly, that the BMT will go well. It is a modern procedure but still very risky, and the little girl has a tough form of leukemia and a tough road ahead. Chok dee mahk mahk!!