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
December 2017 – BONE MARROW DONOR REGISTRY ACTIVITY SUMMARY
34 lifesaving transplants 21 from personalized donor pools 2,691 total transplants 885,264 members in registry Below are the donor pools that saved lives this month, and their total transplants. Continue reading Because of You!
This post is my platform to scream it out to the entire world – THANK YOU!
On the way home from Tel Hashomer this morning, just when I had finished saying, “Thank you,” and encouraging all the great mitzvahs that this organization does for us, a song started playing on the radio that could not have been more symbolic for me:
Hallelujah – everyone will sing.
With one, lone word,
The heart is full of tons of gratitude.
It, too, pounds – what a wonderful world!
Hallelujah – with the song.
Hallelujah – for each day that dawns
Hallelujah – for what was,
And for what wasn’t yet – Hallelujah.”
Until quite recently, Ezer Mizion was “just another organization,” as far as I was concerned.
I didn’t really know what they did.
I linked up with them via a co-worker, and I was coming from a place of deep frustration.
I explained to them that my father is a cancer patient whose condition is not good, and unfortunately, he cannot get around now, and needs an ambulance to get to Tel Hashomer and back.
On the other end of the line was a nice fellow named Shmulik, with huge patience and a pleasant demeanor –
Even when Abba was hospitalized and we forgot to cancel the transport.
Even when we forget to update some detail.
Even when we cancel at the last minute because our head isn’t on straight due to everything that’s going on.
Even when they have to explain everything to me 80 times over.
Even when it means having to send an ambulance especially for us because we’re not on the route,
And all with full understanding, giving us such a good feeling.
So thank you, dear, special people on the other end of the line and behind the steering wheel. Thank you to Shmulik, Danny, and the wonderful girls at the ambulance call-in center and the message reception center. Thank you for being the entire world for people like us, who lose their way a little at the beginning.
What happens afterwards? The thousands of members of Ezer Mizion’s Linked to Life, a WhatsApp group, routinely answer each beep of their phone to see if they are able to respond to the next emergency. They probably wonder what happens after they pick up vital medication or drive someone to a hospital. Read on to see what happened after one Linked to Life volunteer responded to a request to drive a group of volunteers to Rambam Hospital. Continue reading A Volunteer Wonders What Happens Afterwards
Imagine having an airplane view of the entire world. Not only the world but of generations. What would you see? You’d immediately notice the hubbub in America as Ezer Mizion launches a nationwide campaign to raise funds to sponsor genetic testing for thousands of new potential donors to register at its Bone Marrow Registry. The money pours in. You all give so generously. The funds are transferred to Israel to pay for the cost of the testing. The genetic data of these young men and women is entered to remain on the database for decades.
She’s drowning in the ocean of aloneness, barely able to tread water. She spots a twig – perhaps it will help keep her afloat – and bravely swims toward it. She tries to touch it, only to find that it is attached to a branch, which is attached to a tree trunk which is solidly based in the ground. The branch is compassionate and bends over so that she can grab hold. It wraps itself around her and pulls her to safety. No longer is she alone.
It was just an email address. Tova spotted it in an ad. She knew Ezer Mizion helped people who have cancer and the like. She wasn’t sick but she was desperate. She had long ago given up hope. But her innocent children…the mother in her urged her to try. It was a shot in the dark . Continue reading Just an Email Address But She Was So Alone
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!