MAVIN FOUNDATION

MatchMaker Patients

	URGENT!! Chris has been fighting ALL Leukemia almost continuously for six years. Recently he was diagnosed with a new, extremely aggressive form of AML Leukemia. Without a bone marrow transplant, Chris will die. Chris is no stranger to overcoming obstacles. Chris was born with Down's Syndrome, a genetic disorder that causes developmental delay. Despite his handicap, Chris has a wonderful ability to communicate and connect with people. Chris is a wonderful and special person who deserves a chance to live. Because he is biracial (Puerto Rican and European decent), it is very difficult to find a matched bone marrow donor for him. There is not currently a match in the National and International Registries. We are especially hoping that people of mixed backgrounds will sign up to become donors and encourage everyone they know to do so as well! Please help us register Chris’s perfect match! Find out more: here
	Rozlynne Velasco is 26-years-old and has Hawaiian, Chinese, Japanese, Portuguese, Puerto Rican, Italian, Hawaiian and German ancestry. She was diagnosed with Acute myeloid leukemia and continues to search for a matching bone marrow donor. She lives in Keaau on the Big Island of Hawaii. Please pass on her urgent need for a donor!
	Kainoa Kamelamela is 18-years-old and has Hawaiian, Caucasian and Chinese ancestry. He was diagnosed with Aplastic Anemia and has not found a matching donor in the NMDP Registry. He lives in Pahoa on the Big Island of Hawaii. Please spread the word about his urgent need for a donor!
	Tuesday, February 15, 2005 Dear Ones, Day +21 continues... We want you to know that Kailee seems much better this afternoon. In fact, somewhere around noon, Kailee seemed to suddenly "clear up." Her primary nurse, Kim, and I looked at each other with surprised delight...whaaat happened? It was so exciting to see the old Kailee return! She yipped with delight when I reminded her that her brother's plane from Albuquerque was landing at that very moment, and a little later, she beamed when her brother and Dad walked into the room! Dr. Margolis came to examine Kailee and reassured of her improvement, decided to hold off on the MRI and spinal tap. Earlier, Dr. Margolis suggested that Kailee's latest troubles were likely caused by one of the most recent additions to her already complicated list of medicines. However, always vigilant for the safety and well-being of his patients, we watched as he carefully peeled away each layer of Kailee's latest puzzle, cautiously avoiding disruption of that which is working and delicately yet swiftly eliminating that which is not, all the while keeping sight of the forest in spite of the trees. I don't think he would mind if he knew I shared a quote he carries from his medical school graduation. It goes something like "If when you are first faced with a problem and you don't know what to do, 'Do nothing stupid.' If after you have thought and thought about the problem you still don't know what to do, add a comma, and 'Do nothing, Stupid.'" True to his theory, 24 hours after the last dose of the offending agent...Magic! Kailee actually leapt into Mom's arms and exchanged a huge hug, snuggled with her adored and adoring brother Mike, opened her Valentines, and beat her Dad at Checkers....you can see for yourself on the photo updates. We think Dr. Margolis is a genius! What a roller-coaster ride! We are almost hesitant to send more updates. Things change so fast around here, by the time we hit the "send" key, something new is going on. But since you faithfully ask how Kailee is coming along, we think we should share the good and the bad. It is life in a whirlwind, and do we ever appreciate having you to share it with. It feels like I imagine an old Oak tree would feel in its struggle to stand against gale force winds supported by miles and miles of long, sturdy roots. Love - Linda & Owen Find out more : www.kaileegetwells.com/update.htm
	Enrico was diagnosed with leukemia in 1996. After three years of intensive chemotherapy he was doing fine. Last April he relapsed. Without a bone marrow transplant he has a slim chance of survival. The search for a perfectly matched donor is made even more difficult because Enrico is multiracial-both Chinese and Italian. Please keep Enrico in your prayers! Find out more: here
	The good news is that Nicole's cancer remains in remission. She is continuing to use Gleevec, a non-traditional chemotherapy drug to treat her Chronic Myeloid Leukemia. She is no longer in pain and is feeling much better! Her family continues to search for a matched marrow or stem cell donor since a bone marrow transplant is the only known cure for CML. Please pass on information about her need to others who share her Japanese, Native American and Caucasian background! Find out more: www.helpnicole.org
	Sheri is a loving mother of Japanese and Caucasian ancestry who has been looking for a matched donor since she fell out of remission from non-hodgkins lymphoma in 1997. She’s currently using Rituxan which has been keeping her in remission but her only hope for a cure is a bone marrow transplant from someone else. She’s been searching for a donor since 1997. Please consider joining the registry or passing on this information to others who may be interested in being tissue typed to help Sheri and her family!
	10-year-old Shawntae is African American and Caucasian. She has Severe Aplastic Anemia and received a bone marrow transplant from a generous donor last fall. She still requires blood and platelet transfusions, so please remember you may donate them in her honor through Virginia Blood Services (804) 359-5100 by mentioning her number: 6181. Please pass on Shawntae’s need for ongoing blood donations to treat her Anemia and keep her in your thoughts!
	10-year-old David is Jewish (Eastern European) and Colombian (with significant indigenous Colombia blood) and has Myeloid Dysplastic Disorder. Thankfully, he received a haploid bone marrow transplant last fall. Please keep him in your thoughts! .
	Byron Strunk of the San Francisco Bay area was diagnosed with non-Hodgkin’s lymphoma in November, 1999, just one week before his first wedding anniversary. Lymphoma, which affects nearly 500,000 Americans, is the most common blood cancer and the third most common cancer of childhood. Byron and his wife Frances founded the San Francisco Bay Area Chapter of the Lymphoma Research Foundation to help others in the community affected by this devastating disease. Email helpline@lymphoma.org, the website www.lymphoma.org & phone 800-500-9976. Strunk, who is Japanese-Caucasian, passed away on September 23rd 2004 at a very young age of 37. Mavin Foundation dedicates its 5th National Marrow-thon in his honor. Find out more: www.lymphoma.org
	Her Update Friday, December 3, 2004 Chloe continues to do well on her meds. She doesn't have severe side effects from the chemo and the disease appears to be steadily decreasing. We hope to get her to what is called pcr negative soon. She would then go for her transplant. This may all happen by early January. She would enter the hospital for about a week of "conditioning," which would include total body irradiation, scalp radiation (because of the leukemia lesions) and chemotheraphy. She would then receive an infusion of Maya's (her baby sister) cord blood which we saved at birth. Maya is a full tissue match for Chloe, thankfully. We never found any donor in the national registry who came close to matching Chloe. Chloe would then be isolated for perhaps up to a month while the infusion grafts and she rebuilds her immune system. This is a sensitive time, as she will be immune compromised and vulnerable to all sorts of infections. She will also most likely have side effects from the radiation and chemo, some of which might be quite severe. She may also react to the transplant; the reaction can also be very severe and is called "graft versus host disease." The overall procedure is considered high risk and although the doctors are hopeful and do not expect serious consequences, they also counsel us that one can never know about these procedures. If all goes well, she might be able to leave the hospital in about six weeks; she would then be able to return home, though she would have to be severely restricted in her activities and travel. At best, her immune system will be compromised for at least six months afterward. Please pray or meditate for Chloe and send her your love! Find out more: