Lillian is a sweet and brave girl with a vibrant personality. She loves skating, swimming, drawing, and most of all, snuggling with her mom every night. Her favorite thing is probably going to the beach on a sunny day. However, Lillian was diagnosed with AML (Acute Myeloid Leukemia) in September 2020. She has gone through four rounds of intensive chemotherapy. Even when receiving treatment at the hospital, Lillian shows her brave and hilarious nature. She digs up jokes to tell doctors and nurses to make them laugh. To us, Lillian means love, joy, and hope. Lillian's dream is to become a child-life support worker when she grows up.
Because Lillian's brother Jerry was also diagnosed with AML in 2012 at age 3, the hospital found that both siblings have carried a rare familiar germline mutation that caused this rare AML Leukemia for children. Lillian needs to have a bone marrow transplant. However, Lillian hasn't found a matching donor yet in the U.S.A. marrow registry. Actually, minorities have a much smaller probability of finding matching donors. 77% of White Americans can find matching donors, but only 40% of Asian Americans and 25% of African Americans can.
From March to June, with the help from Be-the-match, DKMS, AADP, A3M, and many churches and institutes, we have hosted 6 donor drives and successfully recruited over 1000 volunteers to register in the national marrow donor registry. We have heard that some of the registered donors have matched with some patients in the U.S.A. which greatly inspired us. however, Lillian still has not been matched so far. Please help us to keep up and host more donor drives.
2020 has been extremely difficult for everyone, but especially difficult for families with cancer patients. For our family, COVID has made onsite donor drives more difficult and less efficient for obvious reasons. COVID has also made our hospital stay more difficult and risky. Staying in the hospital for several months in 2020 has been a true risk to us, as exposure to the virus would be fatal for immune system-compromised patients.
Additionally, COVID has made international bone marrow donation almost impossible. Lillian has not found matching donor in the USA registry, and she has found many matching donors in the Chinese bone marrow registry. But because of COVID19, the registries between the two countries have not performed any international donor stem cell transportation for more than one years. We are working with many officials as well as social charity groups to push for the reopening of international marrow stem cell transportation again.
We have also received great help from many media groups. Chauncy Glover from ABC 13 and Robin Roberts from Good Morning America reported our cases and attracted close to 1000 donors in the first few days alone after being aired. KTSF 26 and many other Asian media groups also showed great passion and support for us by reporting our case and request in Asian communities. All these add up to encourage more Americans, especially minorities, to register in the national marrow donor registry.
Donor education and fundraising have been critical to recruiting more volunteers for the donor registry as well as supporting families like us with cancer kids or patients. We have been invited by the Leukemia and Lymphoma Society, Texas Leukemia, and other charity groups to join the advocacy activities. There is an urgent and continuous demand for having more donors in the national marrow donor registry. Every patient and every donor drive contribute to the 14,000+ patients waiting for bone marrow transplant in the U.S.A. each year alone.
We also joined Leukemia and Lymphoma Society and gave presentations on Childhood Cancer Action Day 2021 to meet online with congresspeople and ask them to support STAR act (cancer support, treatment, access, research) . We also worked with LLS to push for TX House Bill 780 relating to the establishment of a bone marrow donor recruitment program, which is the first of its kind in the whole country. We are working more on donor education and recruitment and hope one day every people, regardless of race and color and political and financial status, can have fair opportunity of finding the matching donors. We wish every kids like my son and daughter can have a 2nd chance of life.
Lillian started her youtube channel after she started 1st round of chemotherapy. Her YouTube channel contains jokes and poems she wrote while staying in the hospital and chatting with nurses. When feeling well enough, she likes to walk around the Oncology floor telling jokes and playing hide-and-seek. Lillian is a believer in God. She trusts that God loves her and will heal her eventually. Please click here to subscribe to Lillian's youtube channel LillianChannel6
If you love video gaming like Minecraft or AmongUs, please also consider subscribing to Lillian's brother, Jerry's youtube channel JerryCraft12. When Lillian is in hospital for her chemotherapy, the brother will play with the sister remotely in the same iPad game and record it to post on his Youtube channel JerryCraft12.