Since Tami's diagnosis in February of 2009 these are the patients that I have followed through their websites, friends, family members and donor programs. I wanted to do something to honor their memories and created this page so that their bravery fighting their illnesses is not forgotten.
As you can see most are young and they are of all ethnicities. Cancer spares no gender, age, or ethnicity.
At 2:00 AM December 19th, 2011 Natalie Nakatani passed away
Natalie was 9 years old.
She had a little brother, Sean, and lived in the San Francisco Bay Area. After five difficult rounds of chemotherapy last year, Natalie’s leukemia was in remission.
Then it came back and Natalie's family was given just weeks to find the bone marrow donor match that Natalie needed to try to save her life. An international donor was located at the eleventh hour but sadly her transplant failed after just a few months of being in remission for a second time.
When I think about Natalie's story I can't help but to wonder if she could have survived if she had received the transplant sooner. If there had been a marrow match waiting for her in the registry instead of precious weeks and months passing by until one was located, could she have lived? Could the treatment have worked on a cancer that hadn't been allowed to over run her body that was also weakened even further by the intial chemotherapy needed to save her life when no match was available?
Despite receiving a 10/10 transplant, Jennifer passed away May 19, 2010
Jennifer Juanes
Jennifer was diagnosed with ALL (Acute Lymphocytic Leukemia) on September 2, 2006 at the age of 20 and relapsed August 15, 2009 with the same diagnosis.
Jennifer was an amazing young woman. She was born and raised in Sunnyvale, CA and graduated from Fremont High School in 2004. She played softball for many, many years. She made every All-Star team and was an All-League Selection in High School. Her presence on the mound was undeniable and her drop was un-hittable. Jen also loved makeup, shopping and being with her family and friends.
Jen aspired to be a makeup artist but has had a rough road for the last few years of her life battling blood cancer. She was feisty, lovable, smart and insanely funny. She had the heart of a tiger and remained relentless through rain and shine. She was her sister's hero and best friend.
Jennifer loved her family and will be remembered for her courage and her beautiful smile. She will be missed by all who loved her. Read more here.
Jasmina was only 6 years old when she passed away Jan. 27, 2010. Here she is with her beloved kitty Lucky.
In the space of 1 year Jasmina Anema was diagnosed with a rare form of Leukemia (NK) on January 20th, received a mismatched 9/10 marker transplant in June, then relapsed in September 2009. With the help of supportive transfusions, medicine and more chemo by the third week of October her bone marrow biopsies came back as 0% Leukemic cells. At the end of November Jasmina was rushed back to the hospital suffereing from a swelling of her brain caused by a medication she was taking combined with high blood pressure. By the end of the December the Leukemia was back.
On New Years Eve Thea found out that Jasmina's Leukemia had split and had become two different types of Leukemia AML and NK. Less then three weeks later her Leukemia had mutated to AMML which is not treatable in post transplant patients.
Last weekend her online journal said she was having a great time:
"Jasmina had a really nice weekend. She and Isabelle went to see the Tooth Fairy movie on Friday and then Jasmina and Thea ate dinner at a friends house. Saturday Jasmina made delicious strawberry pizza with a friend. On Sunday, Isabelle, Wim and I hung out with her for a few hours. She was happy and in good spirits. Thea's friend brought her adorable puppy, Ruby, over to play with Jasmina and Lucky. Lucky wasn't so thrilled with this arrangement, which Jasmina found hilarious. It was really nice to hear her laugh so hard."
On Monday, just one day later, Jasmina spiked a fever. On Tuesday x-rays confirmed that she had pneumonia in both lungs. In her weakened condition it was just too much for her little body. The pneumonia didn't respond to the antibiotics and as her breathing became more labored she was moved to ICU. As her lungs began to fill with fluid it became apparent that there was to be no miracle for Jasmina, no happy ending. She was held by her mother and surrounded by loved ones who touched and comforted her. On Wednesday at 7:55 CST Jasmina passed away. Rest in peace little angel :( My thoughts and prayers are with you, your family and friends.
Jasmina lived with 3 kinds of Leukemia, shingles, graft vs. host disease, diabetes, posterior reversible encephalopathy syndrome, high blood pressure and a myriad of conditions and complications caused by the leukemia and the treatments that were saving her life. Through it all she smiled, she laughed, she comforted her mother and enjoyed her life as best as she could. She was easily far more courageous then most of us could ever hope to be in the same circumstance.
Jasmina and Thea
It was just a few short weeks ago on December 6th that Jasmina was in the Oval Office of the White House meeting and talking to President Barack Obama thanks to the Make a Wish Foundation. She wanted to talk to the President about helping kids with Leukemia. It was the experience of a life time and in her 6 short years she changed the world. Jasmina helped to raise so much awareness about the need for more people to join the National Marrow Donor Program and received lots of publicity that she put to good use to help spread the word. One of the drives held in her name located a donor for another patient in need. Literally thousands of people joined the registry hoping to help save this precious little girl.
I don't even remember how I found her site but one day last year shortly after Tami became sick I stumbled upon it and immediately began checking back, following news articles, even saw new stories about her on tv by chance. But it was only recently that I found her online journal where all that she endured and conquered was written down for her many friends and supporters to follow her progress as she fought for her life.
Eve, passed away in 2009
Two year old Eve was an adorable little girl. Like any parent, Eve’s mom and dad envisioned a bright and promising future for their daughter. Then disaster struck: Eve was diagnosed with acute leukemia. A bone marrow transplant could have saved Eve’s life, but a well matched donor wasn't located in time.
You can find out if you are a match for countless other children and adults by joining Gift of Life, an affiliate of the National Marrow Donor Program and the worldwide donor registry. Testing is fast and painless, involving only a simple cheek swab. Eligible donors must be between the ages of 18-60 and in general good health. The goal for this drive is 1,000 new donors. Since tissue type is inherited, like eye or hair color, Eve’s best chance of finding a genetic match was from a Jewish donor of Eastern European descent.
I have heard but have not confirmed that Eve did receive a less then perfectly matched transplant of some type that failed. It's so heartbreaking to know that this precious little girl will never grow up, never be healthy and had to leave her loving family behind. It's too late to save Eve but there are so many others looking for a match to save their lives. If you join the Gift of Life Marrow Donor Program you can find out if you are the match that could save a life.
Nick Glasgow Passed Away on October 6th, 2009
This morning I woke up to learn that Nick Glasgow is no longer with us. From his blog:
Nick Glasgow passed away yesterday after a courageous and, in many ways, historic battle with leukemia. His mother Carole, whose loving support for her only son was constant and unwavering since his original diagnosis in March, was with Nick throughout his final days at home.
Here is a video of Nick and his mom Carole from earlier this year while he was in the hospital. To see Nick smiling and even laughing a little may give you a connection to him if you didn't know him in person. I know it did for me.
Following his transplant, about a month after Tami received hers, Nick's experience was similar to hers. He also had a 10/10 anonymous donor match from an altruistic and generous stranger, mucositis and GVHD. But his treatment resistant, acute myeloid leukemia came back just 2 weeks ago and there was nothing left to be done to help him. :(
Diagnosed on March 16th it was on June 16th that two 10/10 donors had been located and passed confirmatory testing as suitable donor matches for Nick. He received his transplant in early August.
For me the question that keeps popping up in my mind is: What if he had received his transplant sooner? What if the day he was diagnosed a match was already in the registry for him, and instead of 4+ months it took 4 weeks to confirm his match and transplant? Would earlier treatment help to save more lives? If all patients could receive their transplants before their cancer or condition has a chance to deteriorate their overall health, could more be saved? If Leukemia patients could avoid the rounds and rounds of chemo to attain remission to buy them time while searching for a match I believe their chances of surviving would increase. That's just my opinion but I'm pretty certain if I asked a doctor they would confirm my suspicion.
So we will continue fighting the fight for Nick and others who, despite their suffering and courage, didn't survive. We'll continue raising awareness of the need for people of mixed ethnicities to join the registry (along with everyone else) in his name. I am already certain that of the thousands of people who registered to help Nick, some of them will go on to help save others
Helping to get more people to join the registry is something we can all do. Do it for Nick. Share his story. Ask your family, friends, co-workers and people you meet to join the registry in Nick's name. We can all help to save others even if we aren't ourselves, a patient's match and donor.
Join at www.BeTheMatch.org
For minorities and those of mixed ethnicities please join at www.AADP.org
Edited to add: I just received a message to the members of Nick's Facebook Group. One bit of it I wanted to share with all of you:
One thing the Leukemia did not rob was Nick’s determination, joyful spirit, and strength. Though he was uncomfortable and in plenty of pain, Nick was still joking around with friends and family and still determined to walk to the bathroom and sit at the dinner table every evening. He also chose to lessen his pain medications, because he preferred to have a clear head than to be pain free. Nick truly was a fighter.
Aram Markosian, 24 years-old, had been diagnosed with Leukemia and needed a marrow match to save his life. Aram was an active Armenian in AYF, Homenetemen & AGBU. He was a fun loving young man who was loved by all who knew him. Aram's need became critical during the summer of 2008l. His cancer had progressed to it's final stage. My understanding is that Aram received a 7/10 marrow transplant, a far cry from the 10/10 that could have saved his life. Instead following his transplant Aram faced numerous complications.
Sadly Aram passed away on September 16, 2009.
My deepest sympathies to Aram's family and friends. It is heartbreaking that he could not be saved.
This is a plea to all of Armenian descent to please attend any "Be The Match" donor drive, join any mail-in test kit campaign or join the Armenian Bone Marrow Donor Registry at www.abmdr.am
DO NOT WAIT until another Aremian person is diagnosed and told they need a transplant to take action. Their window of opportunity to locate a match can be weeks or months after diagnosis so waiting to join could mean waiting until it's too late to help a patient in need.
Michelle and her husband Van just a couple of weeks ago while she was still healthy enough to enjoy a weekend getaway to Carmel.
At 27 years old and after fighting two long, hard, courageous years against her treatment resistant Acute Myeloid Leukemia, Michelle is now at peace.
Even though Project Michelle registered over 18,000 potential donors, no match was ever found for Michelle. But others were saved, and will continue to be saved in her name for decades to come:
As a direct result of Project Michelle's donor drive recruitment efforts with the Asian American Donor Program over the past 2 years since her diagnosis:
• 4 donors have been matches for patients in need and have donated their stem cells!
• 15 others are in the process of being tested to be donors.
• 110 individuals have been identified as possible matches for patients in need.
Michelle and her Mom
On June 29th Michelle's husband Van posted on her blog that the doctor had told Michelle earlier that week that she had 4-6 weeks left. For days after I am certain that hearts broke all around the world for this very special girl, her devoted husband Van, her adoring family, her best friend Mabel and everyone lucky enough to have known her. Three weeks and five days later, surrounded by their love, Michelle passed away and was finally released from all of her pain and suffering.
Michelle's legacy will forever be one of never giving up hope and saving the lives of others. The cancer may have taken her life but it didn't take her spirit. Michelle was fighting to the very end. Her best friend Mabel says in her blog that right up to the end she was cracking jokes, making everyone else laugh.
Several nights ago (July 2, 2009) I learned that Graham Barnell, husband, father and Leukemia patient, had passed away. I met Graham through his Facebook Group after he first joined Tami's FB Group. I was one of many of his online friends who received a message at 2:49 a.m. on July 2nd breaking the sad news that he had "Passed away peacefully, surrounded by family and friends."
In 2009 Graham participated in a clinical trial in Seattle receiving a double cord blood transplant using the stem cells harvested from infant's umbilical cords. Cords used to be disposed of after a delivery but now we know that there are many reasons to save this stem cell rich blood source. Graham suffered through and survived a severe type of Graft vs. Host Disease and was then stricken with a persistent fungal infection for weeks and in the end he succumbed to a chest infection.
Had Graham received a 10/10 adult stem cell marrow match perhaps he's still be here with us. The closer the match the better the odds of a positive outcome.
Carolyn Tam (37 years old) Carolyn was diagnosed with Acute Myeloid Leukemia in November 2006. After her first treatment of chemotherapy, she was in remission for only a year. When her Leukemia relapsed in April 2008, she was told she needed a stem cell transplant to survive.
Her brother had already tested negative as a potential donor. Someone of Asian or even not of Asian decent could have been a perfect match for her. It is a tragedy that her match was not found in time and Carolyn passed away on April 23, 2009.
Her friend Chris sent out this message to Carolyn's Facebook Group:
Hi everyone, it breaks my heart to have to share this news with you but you have been very supportive and I thought you'd want to know.
Carolyn's long, hard fought battle came to a peaceful end, when she passed away on Thursday, her family and closest friend at her side.
I myself started out as a Carolyn supporter, became her friend and it didn't take long for her to become very special to me. She was an amazing person, who always thought of others first and it was impossible not to like her.
Being fiercely independent, accepting help was not something Carolyn did willingly, much less ask for it. She was determined to protect her friends from worrying about her, by keeping the bad news from us. When I was sick with pneumonia in November, she was more worried about me than herself and she was in the hospital while I was at home.
Carolyn moved to Vancouver on Jan 13th, to be closer with family and her best friend. I received a note from her at the end of Jan, telling me her doctor had found a potential match. I was so happy.
In mid Feb, Carolyn was admitted to Vancouver General for a month long chemo session, to ensure she was in remission. In early April, she struggled with various infections at home and was rushed to the hospital on Wed...
I will miss Carolyn immensely and although it feels as if I have a hole in my heart as I write this, she wouldn't want us to be unhappy or stop fighting for her cause.
You have to know how much she appreciated all of your support.
Please take some time to remember Carolyn and share your thoughts on the group page, her personal Facebook page or her website.
And please continue to spread the word, so that our beloved Carolyn didn't fight or die in vain.
I received word from my new Facebook friend Tamu that Laura Cisneros-Rayman (27 years old) who was a mother to a wonderful 2 year old son, passed away in April of 2009. She was diagnosed with Leukemia in 2007 and was desperately searching for a bone marrow donor that was never found.
Since Tami's diagnosis in February of 2009 these are the patients that I have followed through their websites, friends, family members and donor programs. I wanted to do something to honor their memories and created this page so that their bravery fighting their illnesses is not forgotten.
As you can see most are young and they are of all ethnicities. Cancer spares no gender, age, or ethnicity.
Aram Markosian, 24 years-old, had been diagnosed with Leukemia and needed a marrow match to save his life. Aram was an active Armenian in AYF, Homenetemen & AGBU. He was a fun loving young man who was loved by all who knew him. Aram's need became critical during the summer of 2008l. His cancer had progressed to it's final stage. My understanding is that Aram received a 7/10 marrow transplant, a far cry from the 10/10 that could have saved his life. Instead following his transplant Aram faced numerous complications.
