Hi all, we are writing to you with a very special request for help. As some of you know, a few weeks ago our only daughter Raluca Anamaria, who
is now 8 months old, was diagnosed with a rare form of Acute Myelogenous Leukemia. The prognosis is uncertain, partly because AML as a whole is associated with significantly lower rates of remission compared to the more common ALL, and partly because she has a rare subtype of AML for which statistics are basically non-existent in her age group. Raluca has not responded very well to the first course of chemotherapy, so her doctors think that there is very likely that she will need a bone marrow transplant to achieve remission. We are currently in search of potential donors for the transplant, as the existing donor lists have not been able to identify a match yet. Here are a few important aspects of this process that potential donors usually have questions about: - the actual donation can happen in one of two ways: o 1) actual bone marrow donation. Pros: best options for Raluca, short procedure for the donor (15 minutes or so). Cons: more invasive than the alternative (requires a small biopsy usually in the hip bone) and can be somewhat painful for the donor; anesthesia is obviously provided. o 2) stem cell donation. Pros: minimally invasive (requires only access to peripheral veins, like during blood donation), little if any pain for donor. Cons: 2nd best option for Raluca, more time consuming for the donor (they need to be hooked up to a machine which �collects� stem cells from their venous blood for a few hours), might involve a short treatment for a few days to stimulate the production of stem cells in the donors' blood. Note that in both cases the actual �quantity� of specimen (bone marrow or peripheral blood) will be relatively small because Raluca is so young and won�t need the usual quantities for transplant. This is just FYI, since the collection procedures would not change significantly except likely taking shorter than usual. - If you think you would be willing to become a donor, the matching process will have two phases: o 1) an oral swab kit which I will provide in the next few days o 2) ONLY IF we have a preliminary match from the oral swab, a donation of a small quantity of blood for full genetic matching will be required. If this second testing shows a �perfect� match, the actual donation is scheduled. Obviously, we will support all the costs of testing. The full testing and/or will be entirely supported by Raluca�s insurance. We know that this is a very unusual and major request, but these are very trying times for our family and we are trying to do everything that we can for Raluca. Please feel free to email us if you have any further questions before making a decision. If you cannot offer to be a donor, or indeed even if you do, please forward this message to anyone that you think might be able to help. If you or anyone you know would be willing to be a donor please contact Adrian Pop by email [email protected] or by phone (408)884-3760, before Wednesday evening as we try to plan how many test kits will be needed. The actual testing will take place over the next weekend (June 26, 27) and Adrian will provide details to those interested. If you are already enrolled in the National Marrow Donor Program Registry (NMDP) we thank you in advance, but we will not ask you for a test since your data has been made available through the standard search mechanism. Thank you for considering our request and to those of you who had learned already, for your words of encouragement and support. Stefania ([email protected]) Razvan ([email protected]) PS: there are several aspects that go into what makes the best match for transplant, including ethnic (i.e. genetic) background (so the reason we are trying to find a donor within the Romanian community here), sex, family relatedness (if any) to patient. However, at this stage we are interested in learning about anyone who could go through with the donation process and we'll take it from there. Also below is a list of medical restrictions that can prevent somebody from donating. Please read it carefully before answering our request. Eligibility Requirements Donors must be between *18 and 55 years of age*, in *good general health*, and *at least 110 pounds*. Donors must not suffer from any of the following: *AIDS:* If you have HIV or are at risk. *Asthma: *Serious asthma (poorly controlled, or requiring hospitalization). *Autoimmune Disorders* Not have autoimmune disorders (such as lupus, rheumatoid arthritis or multiple sclerosis). *Back (neck or spine) problems: *Back problems (sprains, strains and aches) are common and usually will not interfere with marrow donation. However, serious back problems, particularly those requiring surgery, may be a cause for deferral. If you have significant back problems, consult us. *Blood pressure: *Elevated blood pressure (hypertension) is acceptable if controlled by salt restriction or medication. *Cancer:* Cured local skin cancer (simple basal cell or squamous cell) and cervical cancer is acceptable. Most other forms of cancer may prevent you from becoming a donor. *Diabetes: *Medication-dependent diabetes is not acceptable. Diabetes controlled by diet is acceptable. *Epilepsy: *More than one seizure in the past year or multiple seizures are not acceptable. Epilepsy controlled with medication, when there has been no more than one seizure in the past year, is acceptable. *Heart disease:* Prior heart attack, bypass surgery or other heart disease is not acceptable. Mitral valve prolapse that does not require medication or restrictions is acceptable. Irregular heartbeat not requiring medication is acceptable. *Hepatitis:* Hepatitis B surface antigen is not acceptable. Hepatitis C antibody is not acceptable. Any other hepatitis history must be evaluated early in the actual search process. Hepatitis vaccine is acceptable. You may donate if you have a history of fully-recovered documented Hepatitis A. *Lyme disease: *Asymptomatic Lyme disease is acceptable if the donor has been treated successfully with antibiotics. Chronic Lyme disease is unacceptable. *Malaria:* If you had malaria more than three years ago, you are still eligible to be a marrow donor. If you finished a full course of antimalarial drugs more than six months ago, you are also eligible to donate your marrow. *Obesity:* Body Mass Index is used to evaluate weight. Donors may be deferred if obesity presents donation risk. *Organ or tissue transplant:* Heart, lung, kidney, bone or other organ or tissue transplant recipients are deferred. *Sexually transmitted diseases: *Any history of sexual transmitted diseases must be evaluated early in the actual search process. *Tuberculosis:* If you have had active pulmonary tuberculosis within the last two years, you are not eligible to be a marrow donor. Peripheral blood stem cell donors cannot donate if they have: - A history of inflammatory eye disease (iritis, episcleritis) - A history or risk factors for deep vein thrombosis or pulmonary embolism are taking lithium - A platelet count lower than 150,000 mL The following are temporary reasons a donor may not be able to donate: - Marrow cannot be collected at any time during pregnancy. After giving birth and once you have stopped breastfeeding, you can become a donor. - Anticoagulant or anti-platelet treatments (with aspirin, persatine or similar medicines), depending on the length of these treatments. ------------------------------------ ------------------------------------------------------------- **[RomaniaUSA] "Romani. Pur si Simplu" ------------------------------------------------------------- http://www.romania-usa.ro Yahoo! 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