You don’t know me and I don’t know you, but that is what makes everything so much more amazing.
Some time ago, I received the most thrilling phone call, informing me that I was found to be a match for a stem cell donation to someone who needed my cells to live. I was beyond words, in the clouds.
Two years ago, I had received a similar call to save the life of a 23 year old man. But unfortunately, the patient weakened and he was in no condition to undergo the transplant. I had been devastated. “This cannot be!” I thought to myself.
To my great joy, I received another call and this time it was about you. Today, I had the opportunity to donate my stem cells to you. For this privilege, I am forever grateful!!!
Throughout this process, I didn’t stop thinking about you for a moment.
I thought all the time: How are you feeling? Are you happy that a matching donor was found for you? Are you optimistic, in spite of the great difficulty involved in such a daunting challenge?
When, occasionally, there was pain or fears at some stage of the process, I immediately thought of you and instantly knew that I had no right to complain, when it was you who are fighting for your life. It had been insanely important to me, and I stubbornly had insisted that they pass on to you and your family that you should not be worried about the donation; I was willing to donate, no matter what would be involved.
To everyone involved, I want to send you tons of “likes” for the ability to accept and deal with this, each in his own way, and to embrace me with a big hug from afar.
I intentionally chose to write to you by hand, so that you could become familiar with at least one personal aspect of me in this long and discreet process.
I pray and hope that my stem cells will be absorbed in your body in the best possible way and that, with G-d’s help, you should recover and regain your strength so that you will once more stand on your own two feet, raise your head, and, above all, be proud of yourself for emerging victorious, in a big way.
Your anonymous donor
The letter writer is just one of over three thousand caring Jews who cannot believe their good fortune to have been chosen to save a life. In a year or two, donor and patient will be permitted to meet. Can you imagine the joy as they embrace…brothers in blood, their souls entwined!
There are close to a million potential donors in Ezer Mizion’s International Bone Marrow Registry, the largest Jewish registry in the world. But even the largest is not large enough. Our goal is to expand so that virtually every request is met with the exhilarating words: Yes! We have a match!
She played matching games when she was a child. True, she wanted very much to win but losing wasn’t the end of the world. Now she is thirty. And losing this ‘matching game’ would be the end of her world… the end of her life.
She had been experiencing strong back pains for several months. When the pain intensified, she visited her doctor. Tests revealed that she had lymphocytic leukemia. Radiation and chemotherapy were not enough. Due to the aggressive character of the illness, she would have to have a stem cell transplant asap. Within a few, short weeks! “We are in a race against time,” explained Dr. Itai Levy, head of the Hematology Department in Soroka Hospital.
Some people buy lottery tickets every week and sit by the phone waiting for Arela to call. I didn’t buy any ticket but I got the call anyway. Or so it seemed. In fact, it was even better. Better than winning the lottery. I got a call saying I was the only one in the world that can save the life of a thirteen-year-old boy with leukemia. Can you imagine what that felt like? Saving a life. That’s the ultimate in goodness, in honor. And it was awarded to me! Continue reading Yair Wins the Lottery and Saves a Life
This was number five. We were experienced. My husband had the bris (circumcision) details taken care of within 24 hours of the birth while I lay in my hospital bed dreaming of his first day of school, his first two-wheeler… We did not know yet what the doctors already suspected. That he is not expected to live long enough to ride a two-wheeler.
Preparing to feed him on his very first day of life, I noticed a rash on his head and groin. I assumed it was nothing but thought I would point it out to the nurse on duty.
It wasn’t nothing. It was a big something. By the time he was five months, we had learned that the ‘something’ had a name: Wiscott-Aldrich – a hereditary disorder that attacks one out of every million children and affects platelets and immune system cells. The average life expectancy was no more than five years. Unless…we held tight to our chairs. There was an ‘unless’, a ‘maybe’, perhaps some hope in this black, black nightmare we found ourselves in. Continue reading Like Magnet to Metal
A potential donor’s initial contact with Ezer Mizion’s Bone Marrow Registry begins with a cheek swab sample. This will enable the registry to make a preliminary determination regarding the compatibility between the donor and a patient in need of a bone marrow transplant. His genetic information will remain on the database for decades, available for any patient whose DNA matches his. Some potential donors are contacted for further testing within a year of registration, others not for 10-20 years or not at all.
Once it had been determined that a donor is a possible genetic match, things move quickly. When a patient is in need of a bone marrow transplant, time is of essence. Further testing must be done and it cannot wait. Should the patient’s condition deteriorate, the transplant, his last chance to survive, may no longer be medically feasible.
Often, if a great deal of time has elapsed since registration, the contact info is no longer valid. The internet is then surfed until the donor is located. No effort is too much when a human life is involved.
The donor is then asked if he would like to donate. The procedure is entirely voluntary and the donor has the right to refuse at the outset or at any time. No persuasion is used leaving the decision completely up to the potential donor.
In most cases, it is a stem cell transplant rather than a bone marrow transplant that takes place. This is a much simpler procedure which results in a higher percentage of potential donors agreeing to go ahead.
What do we mean by genetic match?
Human leukocyte antigens (HLA) are proteins that are present in most body cells. These antigens help identify tissue types. The immune system utilizes HLAantigens in order to identify the cells that belong in your body and the cells that do not belong in your body. If the immune system detects cells that do not belong on your body, it will reject them, thus resulting in a failed transplant.
HLA proteins are important in determining the compatibility of donors and patients for a stem cell transplant. In order to match tissue types for a transplant, the compatibility of ten of the donor and patient antigens are checked (generally, A, DR, C, B, and DQ).
Usually, a compatibility of at least 8 out of 10 antigens is necessary in order to approve a donor for a transplant.
In addition to the basic testing, Ezer Mizion’s Bone Marrow Registry is committed to supporting research to enhance results of transplants and the donor may be asked to participate in this research as part of the donation process. The decision whether to participate in the research is up to the donor.
Three weeks to several months may elapse until the patient’s attending doctor will come to a decision. The Registry staff will call the donor to inform him of the results of the compatibility confirmatory testing.
The donor may be asked to donate immediately or to wait until the patient is ready. Each case is different; the timing of the donation will be based upon what is best for the donor and for the patient. After a date has been set, the preparatory stage will continue.
At the preparatory stage before the donation, the donor will speak with the Registry staff in order to learn about the process and the risks and side effects involved in giving a donation. If he chooses to donate, he will undergo blood tests and a physical examination by a physician. A detailed questionnaire is also required in addition to a signed consent form.
Increasing Stem Cells in the Donor
On the day of the transplant, blood is taken from the donor, much the same as if he were donating blood. The stem cells are harvested from the whole blood and the remainder returned to the donor through the second arm. The process is repeated for several hours until the required amount of stem cells (depending on the size of the patient) is obtained. So that a large amount of stem cells be available, the donor receives neupogen injections several days before the transplant to stimulate the release of stem cells from the bone marrow into the blood stream.
When the required amount has been accumulated, the stem cells are then infused into the body of the patient through a central line, a painless procedure. Within 2 days to several weeks, the new cells will begin to produce red cells, white cells and platelets in place of the defective ones, thus producing a cure for many life-threatening diseases.
Bone Marrow Registry Anonymity
By international law, a registry must maintain confidentiality and strict non-disclosure of donor and patient information. This policy is for the protection of both the donor and the patient.
In order to maintain confidentiality of information, donors and patients receive an identification number. These ID numbers enable doctors to share important medical information without using names or addresses. This high level of privacy is maintained throughout the stages of the process.
Patients are informed only of the age and gender of their donor. Donors are told only of the age, gender, and disease of the recipient patient.
The patient’s identity may be revealed only after at least a year has elapsed from the date of donation and the patient has expressed his agreement to disclosure and a meeting. This meeting understandably will be highly emotional with the patient and his family trying to express the unexpressable: You saved my life!