More Bone Marrow and Stem Cell Donors Needed: Patient Updates

Two years ago my cousin Tami was unexpectedly diagnosed with a blood cancer called Myelodysplasia (MDS). It is similar to Acute Myeloid Leukemia and her only hope of surviving was to receive a bone marrow/stem cell transplant. Against the rapid progression of the disease and despite the daunting odds locating a marrow match, she received a stem cell transplant just a few months after her diagnosis.

Since then I have befriended and come to care about other patients battling cancer and anemia. Below are updates on many of the patients I have blogged about over the past two years.

Regarding many of the patients below: Graft vs. Host Disease (GVHD) is caused when the donor stem cells don't realize they are now in a new body so they attack the transplant recipient's cells because they they think the recipient's cells are invading their donor's body. It is an expected complication of the transplant process and can be a short or long term problem post transplant.

Tami - My cousin continues to deal with a mild case of GVHD but is back to work full time and making the most of her new lease on life. Not only did she meet her donor, Scott who lives in Hawaii, over the phone this past summer, she also recently traveled to NYC to watch the Macy's Thanksgiving Day Parade. Most recently she had her first hair cut since losing all of her hair during chemotherapy. Even while we all felt a huge sense of relief that Tami has progressed so well post transplant, there was plenty of heartache in 2010. First Tami's dad passed away early in the summer and a few months later one of her Uncle's passed away. It was a tough year losing two family members and I hope and pray that this year will be one of continued good health and happiness for Tami.

Roger Contreras - My dear friend Roger, who I met online almost immediately following Tami's diagnosis in early 2009, continues to recover from the stem cell transplant he received almost 2 years ago to treat his MDS (the same condition Tami had). Unfortunately Roger suffered a major setback last year and continues to battle with a bone necrosis condition caused by the steroids used to treat his Graft vs. Host Disease post transplant. Basically the medication damaged the marrow in his hip bones causing fluid to build up in his bones which is an excruciatingly painful condition. He recently had a hip replacement surgery and will need his other hip to be replaced in the near future. He has also battled with Diabetes and infections. The good news? Roger has been in remission since receiving his stem cell transplant. Through it all he has inspired me by his continuous efforts to "give back" by hosting blood drives (to replenish for all of the blood and platelet transfusions he received) and fundraising for the Leukemia & Lymphoma Society.

Matthew - ETA: Heartbreakingly, Matthew has passed away due to significant post transplant complications.

Matthew continues to recover from the stem cell transplant he received in September of 2009. In early December 2010 he was still taking 18 different medications and battles with Chronic Graft vs. Host Disease. The GVHD is causing severe and constant dryness in his eyes for which he has to use eye drops, he has had persistent sores in his mouth and suffers from a severe case of scleroderma around his waist and on his arms. Despite the GVHD Matthew had some great highlights last year. Not only did he get to meet his stem cell donor, 26 year old medical student Diep Dao, who lives in Arizona, He finished the Be The Match 5k run/walk and went to a Lakers game and got to meet Dr. Jerry Buss, owner of the Lakers.

Jonathan Haupt - After receiving a transplant form his sister, Jonathan is recovering well and has endeavored to start his own non-profit to help recruit more new members to join the "Be The Match" bone marrow donor registry. Team Haupt is creating a new non-profit organization named 30K Friends Foundation dedicated to providing support to leukemia and other blood cancer patients. Their mission is to recruit more potential bone marrow donors and to educate the public about the critical role of bone marrow stem cell transplants in saving the lives of patients with no other option for a cure. For Caucasians the chance of finding a matching donor is 1 in 30,000. (For ethnic minorities and people of mixed ethnicities the odds are 1 in 200,000 or more). Because 70% of patients in need don't find a match in time the need for more willing donors is critical.

Janet Liang - ETA: Janet later suffered a relapse and died a week after receiving a long awaited marrow transplant. What angers me most is that had a transplant been available sooner her disease would not have progressed as far as it did and she would have had a better chance to beat the odds.

I am very happy to report that Janet has been in remission since early summer after receiving almost a year of intense chemotherapy to attack her Acute Lymphoblastic Leukemia. Some problems with her liver and a frightening episode of congestive heart failure, caused by toxic side effects from two of the chemotherapy medications she had been on, caused a set back from which she continues to recover. Thanks to her network of family and friends who helped her to maintain her "Team Janet" efforts, 5,232 donors were added to the National Marrow Donor Program registry! Janet's goal is 15,000 so she's dedicated to continuing her recruitment efforts advocating for "Be The Match" as she continues in her recovery.

If Janet were to relapse in the future a stem cell transplant would be needed to treat her. Currently she has no match in the registry. Please consider joining so that if you are her match you can be there ready and waiting and she can receive treatment immediately which would improve her chances of a successful recovery instead of having to wait months or years as many patients do before they run out of time.

Zyreal - Following a failed cord blood transplant for Sickle Cell Anemia, Zyreal battled against many setbacks to his health all year long. Currently he is back home and trying to be a kid, going to school, playing, all of the things 8 year old kids do. When a malady (particularly persistent vomiting has been a problem) comes up his dads help him deal with it. His doctors aren't sure if they will try a second marrow transplant if a better match can be located. Even if they do it won't be right away because Zyreal is still recovering from the last one. A lot is up in the air right now and Zyreal is holding his own. This is a photo of him playing Santa in his school play. Turns out he loves acting so much his dads may arrange some acting classes for him.

Natalie Nakatani - After undergoing a bone marrow transplant in May it soon became obvious that her recovery was not going to be as smooth as everyone had hoped. Her bone marrow biopsies began showing very small Leukemic cell counts, 1%, 2%... By fall it was official that Natalie had relapsed :( She is now back home and goes into the hospital as needed for what so far have been minor complications. Suffering from Acute Myeloid Leukemia she will need to undergo either another bone marrow transplant or other forms of treatment to attain full remission. Some good news from her donor drives is that two people who registered with the marrow registry in the hopes of being Natalie's match have gone on to donate their marrow to two other patients in need. A small silver lining as we wait and worry about Natalie. At 9 years old she has what should be her entire lifetime ahead of her. I hope and pray for a miracle for her each day.

Michelle Maykin - Though Michelle passed away in the summer of 2009 her legacy lives on in new legislation that will help all future transplant patients and their marrow and stem cell donors. With her mother Megan’s continued efforts, the support of Project Michelle, and the marrow registry advocate community, California Governor Arnold Schwarzenegger signed and passed SB 1304, also known as the Michelle Maykin Memorial Donation Protection Act in the fall of 2010. This legislation now requires all California employers to allow paid leave to anybody who voluntarily donates their marrow or stem cells to a patient in need. Before the signing of this bill employers did not have to give employees paid leave or the time off they would need to be a life saving bone marrow or stem cell donor. I read it was one of the largest obstacles causing willing donors to decline to donate when they were told they were a patient's match.

The legislation includes the following provisions:

• All California employers will be required to grant an employee a leave of absence up to five days to donate their marrow to another person

• Any period of time taken from work to donate marrow will not be considered as a break in continuous service for the purpose of his or her right to salary adjustments, sick leave, vacation, annual leave, or seniority.

• During any period an employee takes leave to donate, the employer shall maintain and pay for coverage under a group health plan for the full duration of leave

• An employer may require an employee to take up to five days of earned but unused sick or vacation leave for bone marrow donations, unless doing so would violate the provisions of any applicable collective bargaining agreement.

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And Some Basic Donor Information about Marrow Donation:

• Registering is pain free. It takes a few cotton swabs rubbed on the inside of your cheeks and a short registration form to join the National Marrow Donor Program registry.

• Donating is now often almost pain free. Bone marrow was never taken from the spine. It was always harvested from the back of the hip/pelvic bone but now 75% of all donations are given through a blood harvesting method similar to donating platelets.

• Only 30% of patients find donors within their own families. The rest rely on anonymous strangers to give them the live saving marrow and stem cells they need to survive.

• Marrow matches are made through chromosomes called leukocytes. While typically they are found within ethnic groups, occasionally donors and patients will be from different ethnic backgrounds.

•  Being from any ethnic minority group or mixture of more than one ethnic group means the odds of finding a matching marrow donor are far less likely than if you are of Caucasian descent. Though many of the patients I now know and care about have received transplants, some have yet to find a match and some may need a better match

• 70% of patients in need do not find a match in time. Many of their deaths could be prevented if more people would be willing to donate their marrow or stem cells.

If you want to help, please visit BeTheMatch.org or the site I built my cousin, HelpingTami.org, to learn more about becoming a marrow or stem cell donor. And feel free to contact me if you have any questions at all. As a certified volunteer advocate for Be The Match I will either know the answer or do my best to find the information you need to answer any questions you have about being a donor.  You may not realize it but you could be the life saving match a patient in need is waiting for.