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In Honor of Maya
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Maya's life was
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Welcome - This web site updates Maya's progress. Please write us a note in our guestbook. Thank you!
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.