A family’s journey of faith and activism, bringing awareness to bone marrow donation
By Darlene J.M. Dela Cruz
Hawaii Catholic Herald
Luke Kaahaaina is freshman at Moanalua High School and a parishioner at the Co-Cathedral of St. Theresa. He is a great swimmer. Luke likes movies and the performing arts. He enjoys traveling, particularly to the West Coast and the awesome theme parks there, or to New York to visit Broadway, historic sites and museums.
Luke wants to be a Zumba dance instructor when he grows up. He has a fantastic smile, and loves his faith, friends and family.
During Christmas week 2016, Luke was diagnosed with acute lymphoblastic leukemia. Since then, Luke and his family have gone through a life-changing journey of prayer and activism to help find a bone marrow donor for him and others in need.
They started the “Kahie Project,” a far-reaching initiative that has brought together faith-based groups, community organizations and volunteers to raise awareness for the National Bone Marrow Donor Program and registry.
The Kahie Project had netted more than 400 new registrants as of mid-April. That number could run up to 500 soon, as the Kaahaaina family and supporters continue the cause at upcoming events around the Islands.
David Kaahaaina, Luke’s father, corresponded with the Hawaii Catholic Herald by email during the very busy Holy Week to share their story.
Luke is scheduled to have his bone marrow transplant near the end of April. David said prayers and support would “mean so much” to his family.
Acute lymphoblastic leukemia
“There are many levels that this illness has affected us,” David said. “We as parents were initially grief-stricken and paralyzed. But the new normal of the initial hospital stay and the outpatient chemotherapy has been supported by close friends and trusted family members, by our faith and church family, and through taking the adversity.”
David, his wife Edna and daughters Emma and Victoria have been close-knit at Luke’s side. The youngest in the Kaahaaina family, Luke also has had to overcome academic and physical delay challenges as a special needs student.
Luke’s initial diagnosis of acute lymphoblastic leukemia was complicated after additional tests were done during his first round of chemotherapy. According to David, it was determined that the leukemia cells had developed a chromosomal deficiency called “hypodiploidy.”
This meant that a particular chromosome is missing, which normally would assist in protecting Luke from various conditions. Hypodiploidy also could lead to chemo-resistive leukemia cells surviving and becoming more virulent. A bone marrow transplant reduces by half the chances of these cancer cells multiplying again.
David reports that Luke had earlier experienced some weight loss and discomfort from the illness and treatments. However, Luke has had few side effects from chemotherapy and has adopted a healthier diet and moderate activity level.
“His health and spirit have returned to his normal self,” David said. “He has been a great trooper with the numerous spinal taps, marrow extractions and blood tests.”
Luke is finishing his third month of chemo. He has not yet returned to school, but the Department of Education has been providing him with several hours of tutoring a week.
David noted that Luke’s tests from the last week of January have shown that “the leukemia is not detectable and has entered and been maintained in remission.” Doctors have determined that David would be the “leading candidate” to be a bone marrow donor for his son.
In the meanwhile, the Kaa- haaina family was inspired to start a campaign to bring awareness to the growing need for bone mar- row donors. David said this was sparked by three major influences. First, they were inspired by the outpouring of grace in the bone marrow donation campaign orga- nized in the 1990s by the family of Alana Dung, who battled leukemia before dying at the age of 3.
Second, David said he was moved by a homily he heard on the first Sunday the family attend- ed church after Luke had been re- leased from the hospital.
“It focused on taking the gifts and blessings and saving graces,” David said, “and … using the re- sources you already have to save yourself, rescue and help others.”
Third, the family traveled around the diocese during the Hawaii visit of the International Pilgrim Virgin Statue of Our Lady of Fatima in late January and early February. Our Lady’s influence, David said, is a beautiful call “to empower and inspire good works.”
Strength and stewardship
The Kaahaaina family decided to name their bone marrow registry campaign the “Kahie Project.” Kahie is Luke’s middle name, which means “elegant” or “lofty;” David explains that it refers to a “tree in the forest that is the strongest, sturdiest, most durable.”
The Kahie Project has spread the word of the bone marrow registry at parishes, expos and local events, as well as on social media.
Mark Clark, diocesan director of stewardship and development, invited the Kahie Project to the diocese’s annual Stewardship Day event in January. He and David Kaahaaina are both alums of the University of Notre Dame. Clark said the Kahie Project exemplifies time, talent and treasure in action. “Of course, it tugs at the heart when a friend is in need,” Clark said. “People give to people, when asked — stewardship, live it!”
Easter Almuena of the diocesan Office of Worship met David during the Hawaii visit of the International Pilgrim Virgin statue of Our Lady of Fatima.
“What touched me the most is that he persevered and never gave up,” Almuena said. “Each time I spoke with him he’d relate to me how good God was to him and his family, especially to Luke.”
David said he and his family have turned to their faith throughout this journey. Bishop Larry Silva has provided blessings for Luke, and their home parish ohana at the Co-Cathedral of St. Theresa have showed him much grace. The family also has been leaning on the saints — especially St. Damien and St. Marianne — and finding guidance and comfort in Our Lady of Fatima.
“We feel strongly that our pilgrimage resulted in healing,” David said. “We also believe it is no coincidence that (Luke’s) transplant comes during Eastertide, where the goal of the Resurrection and miraculous new life is exemplified in the transplant process.”
“The blessings of God cannot be understated,” David said.
How to save a life
Some key facts from Bethematch.org about joining the bone marrow donor registry:
- Every three minutes, some- one is diagnosed with blood cancer
- 70 percent of patients needing a marrow transplant do not have a fully matched donor in their family
- 14,000 patients each year require a transplant from someone outside their family for a cure
- Registrants for the bone marrow donor registry must be between ages 18-44
- You are prohibited from joining the registry if you have any of the following conditions:
- Hepatitis B or C
- Are the recipient of an organ, marrow or stem cell transplant
- Have had a stroke or transient ischemic attack
- These conditions require further evaluation before joining the registry:
- Autoimmune illness
- Brain injury or surgery
- Blood cancer or disorder
- Chronic neck, back, hip or spine pain
- Heart diseases, a heart attack or other heart- related issues
- Currently taking certain prescribed medications regularly for pain, heart issues, cancer or other diseases
- There are surgical and non- surgical options for bone marrow transplantation and donation; the patient’s doctor will choose the best method for the patient
- Registrants remain in the database until age 61, or until a request is made to be removed
For more info on the Kahie Project, visit the following websites:
- https://join.bethematch. org/kahie