Life proceeds normally. Tuesday is similar to Monday and Wednesday follows in its wake. Then suddenly, without any warning, life explodes. A fifteen-year-old is crossing the street, something he has been doing since he was a youngster under the watchful eyes of his nervous mother. Now at fifteen, his mother no longer worried about his crossing. She knew he was careful and responsible. What she didn’t know about was the van that came hurtling down the street, against the light, hitting her son with full force causing his head to strike the asphalt until he lost consciousness. And life was no longer normal. The tiny hospital room becomes your world. Nothing else matters. Continue reading When Life Explodes and Catapults You into the World of Hospitals
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Often, if a great deal of time has elapsed since registration, the contact info is no longer valid.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!
At Ezer Mizion’s busy office, the phone does not stop ringing. At times, it is the ubiquitous telemarketing call. Other calls may be requesting information about the bone marrow registry. Some calls can be as brief as several sentences but leave the staff member stunned. Like this one received by Chani :
“Where were you 45 years ago? When my son needed a bone marrow transplant? I took my two daughters to be tested at UCLA but they were not a genetic match.” Then her voice faltered, “Before we could try more people, my son— my son—- my son died.” Her voice broke but she tried to continue speaking, “I want to give you a donation. Your organization is so important. I only wish it had been in existence 45 years ago. Perhaps he could have received a bone marrow transplant. Perhaps he could have been saved.” She was overcome by tears and hung up the phone. The pain of losing a child does not disappear, even after 45 yrs. Continue reading 45 Years of Tears: The Bone Marrow Transplant that Never Was
ACTIVITY SUMMARY 22 lifesaving transplants 14 from personalized donor pools 2,657 total transplants 877,315 members in registry Below are the donor pools that saved lives this month, and their total transplants. Continue reading Because of You!
So it goes, until April. The last treatment for the cancer providentially comes out exactly on Yigal’s birthday, the second of Nissan (April). One more little note from Hashem (G-d) showing us that He is holding our hands. Simply and unceremoniously, the old birthday links up with the new birthday, as we plead to live and rejuvenate and truly grow…
Each year, like many organizations, Ezer Mizion holds a golf tournament with proceeds to benefit its major programs. Ezer Mizion’s Eighth Annual Hole In One Tournament took place on November 20 at the Caesaria Golf Course in Israel to benefit its International Bone Marrow Registry which has, thus far, saved the lives of over 2500 patients around the world.
Eight times! For eight years, Ezer Mizion has held its annual Thanksgiving Day Golf Tournament at Caesaria Golf Club in Israel. Golf aficionados gather for a day under the azure skies, each stroke being a strike against cancer. Many travel to Israel from abroad to join in the camaraderie of the event. Continue reading A Hole in One
We’ve landed. We’re now officially residents of the planet called Cancer. For the next few days, we move quickly from one test to the next, trying to obtain a clearer picture. We encounter the state of uncertainty and try to slow down the rapid beating of our heart, the heart that wants to know, to know right now – will he live or will he die? A ton of thoughts are running around inside my head, spinning out of control. Continue reading A Journey We Didn’t Plan Part 2 taken from the diary of Nechama Spielman
$50…it can buy a lunch for two… a nice shirt…a tank of gas…or a child’s life. Yes. For fifty dollars, a tiny toddler with cancer can be genetically matched to a bone marrow donor and his life will be saved.
For many cancer patients, a bone marrow transplant is their sole chance of survival. To be successful, both donor and recipient must share the same DNA. Ezer Mizion, the largest Jewish Bone Marrow Registry in the world, has saved over 2500 lives of people around the world but too many are still waiting for the match that will mean life itself.
Parents of tiny toddlers, whose mischievous giggles have long given way to a pathetic whimper, sit for hours in the pediatric oncology ward. Teenagers refrain from joining their peers who are planning their futures since, for them, there may not be a future. Young mothers and fathers clutch their kids tightly, praying so hard that these precious children will not have to grow up as orphans.
Even the largest registry is not large enough. Your gift of $50 will help expand the registry. And then the phone at the home of one of these families may ring and a triumphant voice will announce: Yes! We have a match!
Click on the links to sharethejoy of families who had despaired of seeing the sun shine again. Donate generously on #GivingTuesday so that other families may share that same joy!