Thursday, November 19, 2009
Random Acts of Loving Kindness and Perfection
This past Tuesday, November 17th, Barbara Ramsey-Duke called a meeting of your senior warden, Gail Connolly, your vestry Outreach chairperson, Susan Mulledy-DeFrank, and me to set up a bone marrow donation drive in honor of Maya Chamberlin. Maya has been our prayer list for several months (September 9th) because she contracted “a rare form of a blood disease, called hemophagocytic lymphohistiocytosis, or HLH for short. This disease involves the histiocyte cells eating up normal blood cells which are then stored in the liver and spleen. This results in an enlarged liver & spleen which then compromises breathing by pushing on the lungs. The disease is so rare that there is not even a body of data on which a prognosis (survival odds) can be based.”
The rest of Maya's background story can be found at the conclusion of this reflection on my Gospel Reflection blog. Barbara Ramsey-Duke had contacted a woman named Anna Marie Cruz from Be The Match. This organization helps set up bone marrow drives in the Los Angeles area. Anna Marie told us about the work of her organization and she helped separate fact from fiction about the process of donation. All of us felt that offering this opportunity to our parish and the community beyond our parish was of utmost importance.
Anna Marie also shared stories of matches between those in need of a donor and the donors whose gift saved lives. She had one such story chronicled on a Dvd. Christine Pechera was dying of cancer, but a bone marrow donation saved her life. All of us were moved by Chistine’s story.
And so we will offer the parish, their friends, family, and our surrounding community an opportunity to register to be donors. The word donors literally means “one who gives.” And the gift that is given is hope and life for those who sit “in the valley of the shadow of death.” (Psalm 23) As Christians we profess faith in God who is THE donor of all life of which we are stewards. We give thanks for :”our creation, preservation, and for all the blessings of this life” by sharing the life that God gives to us. In John’s Gospel, we read that “God so loved the world that he gave his only begotten Son…” (John 3:16)
To be clear, those who sign up to be donors are promising to donate to whomever they match, making their gift a “random act of loving kindness.” This is important for us to know because it makes our decision to be a donor an act of godly generosity.
Gifts that are given only to those whom we know, love, and care about are good gifts, but when we offer to give to those whom we don’t know, might not find lovable or even likable, we offer a godly gift. It is a godly gift because God gives to us without regard to how we feel about God. As it is written in Matthew 5:43-48:
43“You have heard that it was said, ‘Love your neighbor and hate your enemy.’ 44But I tell you: Love your enemies and pray for those who persecute you, 45that you may be children of your Father in heaven. He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous. 46If you love those who love you, what reward will you get? Are not even the tax collectors doing that? 47And if you greet only your brothers, what are you doing more than others? Do not even pagans do that? 48Be perfect, therefore, as your heavenly Father is perfect.
I urge you and encourage you to enter into the joy and love of God’s perfect giving.
WHAT and WHEN: Bone Marrow Testing will be offered on Sunday December 13, 2009 immediately following the Holy Eucharist at 10am until 3pm
WHERE: In the sanctuary of Christ Episcopal Church
408 South Broadway
WHY: For the love of God and God’s Children who are in need
Maya’s Background Story
Maya became sick with flu-like symptoms on Sep 9. As has been the case so many times in the past 3 years, her symptoms worsened. We brought her to the doctor Sep 10 and after a blood test Maya was admitted Sep 11 since all the blood cells, including white blood cells, platelets, and the hemoglobin level were quite low (pancytopenia) and her liver and spleen were enlarged.
The levels kept dropping so she was transferred Sep 12 from Torrance Memorial to the Pediatric Intensive Care Unit at Millers Children Hospital in Long Beach. In the ICU Maya's breathing became labored and her belly became distended. We had no idea what was happening and the doctors worked furiously to find an answer. Several specialists were consulted and many tests were performed.
On Sep 13, chest x-ray's showed large amounts of fluid in her chest cavity and the doctor decided to perform a lung tap: insert a tube into the chest cavity to release fluid. Nearly 400 ml was removed and Maya's breathing and heart rate improved dramatically. We were relieved and Maya got some good rest...for 4 hours. She then became uncomfortable and her breathing became more labored. The doctor decided it was time to take over the breathing for her via a tube and ventilator. Right before she was sedated and the tube was inserted, Maya asked for Jaden. We were quite happy to hear her alert response and Sam asked her who Jaden was. When she didn't respond Sam asked if Jaden was her sister. Maya spoke right up and said, "No. He is my brother. He is naughty some times and you and mommy put him in time out." We were relieved to know our Maya was still alert and mentally active.
Maya's heart rate was averaging 180 beats per minute since being admitted. After the lung tap the heart rate went down to 140 but went back up. After the ventilator her heart rate went down to 150. Meanwhile specialist after specialist visited and assessed Maya and ran off to check their literature and consult with other experts. We were quite impressed with the responsiveness, extremely high level of competence, professionalism, sacrifice and ability to explain in detail their thoughts. The team narrowed on several suspects, every single doctor contributed to connecting the dots and astonishingly made the diagnosis in a matter of hours. The Oncologist confirmed the diagnosis through analysis of a bone marrow biopsy. We are very lucky the diagnosis was made so quickly.
Unfortunately the diagnosis is a rare form of a blood disease, called hemophagocytic lymphohistiocytosis, or HLH for short. This disease involves the histiocyte cells eating up normal blood cells which are then stored in the liver and spleen. This results in an enlarged liver & spleen which then compromises breathing by pushing on the lungs. The disease is so rare that there is not even a body of data on which a prognosis (survival odds) can be based. The treatment is a form of chemotherapy and was started the same day of the diagnosis (Sep 14). Maya's heart rate went lower to 140 as she became more comfortable and on the 2nd day got all the way down to 105. It is currently in the low 90's.
We have a long, bumpy, uncertain road ahead of us. Maya has already responded well to the treatment but it is very early. Maya is still on the ventilator and has about a thousand tubes stuck in her. We are now preparing to move her off the ventilator but need her to "wake up" from the sedation and paralytics that she has been under in order to proceed.
We are DEEPLY grateful to all of our friends and family who have made incredible sacrifices and steady support through this initial phase. We very much look forward to updating you on Maya's progress through this web site. Our thumbs are about to fall off from all the texting! Thank you again and God bless.