blood stem cell transplant, bone marrow, bone marrow donors, Bone Marrow Donors Worldwide, BRCA gene, cheek swab, Dr. Saul Yanovit, Gift Of Life, Gift of Life.org, health, medicine, transplant, www.bmdw.org
GIFT OF LIFE; http://www.giftoflife.org
I got an email from my cousin Florence this morning. Several years ago she decided that she would like to be a bone marrow donor. When you start on this path, you have no idea if you will be a match or not. Incredibly, she was. But first here is some background and then her story.
The website for Gift of Life reports that one in 200 Americans will receive a stem cell transplant in their lifetime. One in 400 will receive their transplant with bone marrow or blood stem cells from a related or unrelated donor.
Life-threatening disease such as leukemia or lymphoma can be emotionally devastating, but there is always hope. A good first step is an organization like Gift of Life.org
Once the physician has determined that their patient would benefit from a bone marrow or blood stem cell transplant a donor must be found.
This process can take a very long time since it will include testing family members as well as looking at a database of strangers. There is a 25 percent chance that a sibling will be a match, and maybe a donor will be found in a parent or extended family member.
Frequently, the family is not a match and it is necessary to go to a national or worldwide database. One of the worldwide database registries, Bone Marrow Donors Worldwide (www.bmdw.org), is a collaborative effort of 51 registries in 37 countries.
Patients and their families can’t go looking for potential bone marrow or stem cell donors on their own. They must start with a transplant center, since they are the ones who can start the search.When a match is found, the potential donors attend an information session so that they are fully aware of what will happen to them and the patient. They then go through a thorough physical exam, including a health history screening, blood work, electrocardiogram, chest x-ray and repeat Infectious Disease Markers. This is performed to protect the donor as well as the potential recipient. If the volunteer is cleared, the donation is scheduled.
But lets start back at the beginning if you are someone who is interested in becoming a donor; you start with a cheek swab. If you match the patient, you will be asked to donate a blood sample to confirm the match. Then the process will follow as above with education and a physical.
Eligible donors save a life either through blood stem cell or bone marrow donation.
This is my cousin Florence’s story. She thought that it was a nice idea to volunteer to be a donor. But you never really think that you will be a match.
Florence went ahead with the cheek swab a few years prior to being called as a potential donor. In fact, she forgot that she done this, so when Hildy Bell at Gift of Life called her to say that she might be a match to an 11-year-old girl, Florence was very surprised.
Hildy asked if she could send a blood kit to a lab here in the area to get more blood samples. Florence also needed to get a pregnancy test. Her first reaction was “I do not want to be a match”
A few weeks later Florence got a call from Hildy saying she was a match and Gift of Life would like to do a group interview with her for about 45 minutes. The group was told that Florence carried the BRCA gene (mutations in two genes which produce a hereditary breast-ovarian cancer syndrome) and was a breast cancer survivor.
They ran this by their medical team and figured 30-40 years of life with a possible 50% chance of getting the BRCA gene/breast cancer was worth the risk. At this point, Florence thought about the 11 year old and how the mother must be feeling. She knew that she couldn’t possibly refuse. She was told that after the first year both parties could sign a consent form to exchange personal information. This appealed very much to her.
As I mentioned, there is always a liaison between the donor and the patient and the transplant hospital. The liaison was Hildy Bell. Florence was summoned to Maryland for a complete physical on January 19, 2010. Her doctor would be Dr. Saul Yanovitch. Gift of Life paid for all of the expenses associated with Florence being a donor.
Florence passed the physical with flying colors. She also realized that this was a big deal. If she backed out now, the family would be devastated. So the harvest was scheduled for February 12th, 2010.
Eight days before the procedure, the patient would have to go through a complicated conditioning process. She would have extensive chemotherapy and possibly, total body radiation to allow her body to accept the foreign bone marrow..
Florence felt that at this point there was no way that she could change her mind. She bought about what she was doing all the time. She was torn between wanting to do the right thing and thinking, “What have I gotten myself into.” But this little girl was so courageous, so potentially saving a child’s life was an easy decision.
Florence and her husband Steve were to be flown the day before the procedure to Baltimore since she had to be at the hospital by 6 AM on the 12th. But the weather was really bad that February. There were terrible winter storms and the East Coast was closed down on February 10th. No flights were going in or out. Here this little girl had compromised herself and Florence and Steve couldn’t reach Baltimore. Gift of Life worked hard to find alternatives to get them to their destination.
My cousin and her husband were able get to Maryland via Florida. They arrived in Baltimore at 1:30 AM. At 5:40 AM – February 12th – they met Hildy in the lobby of their hotel. The cab couldn’t drive up to the hotel to take them to the transplant center, due to the snow so they walked to get a cab.
In pre-surgery, the doctors told Florence that they were going to remove 1 ½-2 liters of marrow from her hip. Florence said; “It was a good thing I had no clue how much a liter is.”
After the procedure she and Steve went back to their hotel and watched the opening of the Canadian Olympics. Florence remarked; “Thank goodness the Olympics were on. The pain was not bad. The games were great.”
The hardest part for her was the lack of contact with the patient or her family. We always want to be kept in the loop but patient confidentially comes first. Florence was told that if the procedure was a success, in about 2 years time they would tell her more about the child.
Two years have passed and the patient, Maria, is now 13 years old. Maria has been leukemia free for the past 2 years. I doubt very much that Florence and Steve will meet Maria since she lives in Russia. But knowing them, they may be planning a trip.
Miracles happen when ordinary people put themselves in unusual situations. Think about getting your cheek swabbed. You could start your own miracle.