Monday, February 25, 2008

My mo's letter for my surgery on march 10

this is the updated version of this..

I am writing in behalf of my 24-year old daughter Maria Kathrina Yarza (Kcat).Almost four years have past after Kcat was diagnosed with Neurofibromatosis Type 2 (NF2)a very rare genetic disease. Neurofibromatosis Type II) is an inherited disease. The main manifestation of the disease is the development of symmetric, non-malignant brain tumours in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Most people with this condition also experience problems in their eyes. NF II is caused by mutations of the "Merlin" gene which probably influences the form and movement of cells. The principal treatments consist of neurosurgical removal of the tumors and surgical treatment of the eye lesions. There is no therapy for the underlying disorder of cell function caused by the genetic mutation.

Kcat had undergone multiple surgeries related to her NF2. On January 2005, she underwent suboccipital craniectomy for the excision of her left craniovertebral junction tumor, but operation was aborted due to unsafe opening of the dura. In June 2005 Stereotactic Radiosurgery (SRS) was done for her right craniovertebral junction meningioma and symptomatic vestibular schwannoma on the left. A month after the SRS, kcat started to suffer from the swelling of the treated tumors. We have been in and out of the hospital due to severe headache. In October 2005 she had an emergency operation, symptom of hydrocephalus was seen in her CT scan, VP shunting was done. Five days after the surgery, her health started to deteriorate, she developed hospital acquired pneumonia and, her swallowing was affected, her left extremeties were paralyzed, her hearing likewise was starting to deteriorate. She was supposed to undergo thorasic surgery for the insertion of tube to drain out the pus in her lungs caused by pneumonia. But God is great, Kcat was already in the operating room when her doctor broke the news to us that they are declining the surgery, the pus was already gone. I believe this is a miracle. She stayed in the hospital for two months due to unknown cause of her febrile episodes. She went home 5 days before Christmas with the tube in her nose (NGT) for her food and fluid intake. In March 2006, she underwent another surgery for the insertion of gastrostomy tube since she still had difficulty in swallowing fluids and food.
In January 2006, Kcat totally lost her hearing. She could not hear us anymore. It was like a nightmare for us. We were already told about this during the initial consultation with her Neurosurgeon and I myself could not believe it would happen. It was so hard to break the news to Kcat that she can no longer hear us, this was the hardest part in our life. She was so anxious, that she could not sleep, and had sort of hallucinations. That was Holy Week of 2006, I brought her to a psychiatrist to help her calm down and gave her medicines to put her to sleep. Monday after Easter Sunday, a miracle happened again. When she woke up for breakfast, she told me,” Mommy, We will get well” since I too has a chronic disease (Systemic Lupus Erythematus). “I will do everything that I can despite of my disability, LIFE MUST GO ON”. I was really crying thanking God for another miracle.
From then on, we just let each day goes by. Kcat started to have her regular rehabilitation at the Phil. Orthopedic Center to regain her strength. She started practicing her artworks in the computer again, explore and do self study thru the internet. And now, she developed more being a fine artist. But we never lose hope that she would be able to hear again. I also consulted her ENT, Dr. Elmo Lago, who confirmed us about Kcat’s total deafness two years ago. I asked if Cochlear Implant would help her, he said it would be impossible since both the nerves in her ears were affected, but he said “Never lose hope, keep on praying, hanggang may tenga may pag-asa (theres’s always hope as long as you have your ears). Miracles happen, only God knows” Kcat and I hold on to what he said. We never lose hope we kept praying. “His Will be Done”
In August 2007, I told her to do some research on the net about Vertigo since after almost two years of rehabilitation, she has already regain some strength, her facial muscles almost improved, she can swallow solid foods, her left foot has regain strength but still could not walk by herself due to her poor body balance with continuous tinnitus in her ears. More than what she was searching, she came across the Auditory Brainstem Implant (ABI), this device was designed to help NF2 patients to hear sounds again. GOD IS GREAT! She was up til 6 am and broke the news to me. I was so ecstatic about the news, I immediately called her neurosurgeon, Dr. Willy Lopez, he confirmed to me about the ABI and told me that there was already one recipient of ABI done here in the Philippines. He told me to do thorough research and meet with the doctors who did the procedure here. So I did. I searched on the net more about ABI and I came across the House Ear Institute, in Los Angeles, California. I sought help for medical assistance since I read in an article that The House is doing another set of study for ABI. I immediately got response from them that my concern was already forwarded to the proper professional. To my great surprise, I was able to get a response from Dr. Derald Brackmann, one of the principal author of ABI and also manages NF patients. His expertise in the field of neurology is highly respected in the U.S. with numerous awards he has received. Great isn’t it? He honestly told me that they could not extend medical assistance since it is too expensive in the U.S and I was already two years late, the article I read was posted in 2005 which I did not noticed.. But he was so kind to offer his free services to review Kcat’s case and give medical opinions. I sent all Kcat’s medical data to the U.S. and he communicated with me immediately upon reviewing the case. His opinion was to have Kcat undergo the Promontory Stimulation Test, this is a clinical assessment whether the patient could benefit from a Cochlear Implant (CI). CI is a less invasive surgery for Kcat to be able to hear again. According to him, Kcat’s tumors are already stable following the radio-surgery treatment and could see possible viable nerves in her medical data. If the promontory stimulation test turns out to be positive, CI could be considered.
I was not alone communicating with Dr. Brackmann, Dr. Willy Lopez was my super generous consultant who helped me with my communication, he was always on my side helping me with the medical data and gives me moral support, so with Dr.Charlotte Chiong, Kcat’s neuro otologist. Dr. Chiong is one of the country’s Most Outstanding Physician who pioneered in Cochlear and Auditory Brainstem Implantation here in the Philippines. She referred Kcat for another series of hearing tests, including the Auditory Brainstem Response and the multiple Auditory Steady State Response test. She also consulted Kcat’s case with other experts from the US and Austria. Last January 30, Kcat underwent the electro audiometry test (promontory stimulation test), to everybody’s great surprise, the test resulted to positive response. Kcat was able to recognize the electricity in her left ear. Meaning, there are still viable auditory nerves that were preserved. Kcat could benefit from Cochlear Implant. This is really very rare, neurofibromas could cause initial deafness and following treatment could cause total deafness. To confirm the viability of Kcat’s auditory nerve, Kcat underwent another Auditory Brainstem response test last Feb. 20, same response from the previous test. Also to monitor the stability of Kcat’s tumors, she had her MRI done last Feb 14 and result showed that her tumors are already stable after the two years following the treatment. According to Dr. Charlotte Chiong, Cochlear Implantation could be considered in Kcat. This is really great, and I claim that this is God’s work on Kcat. Miracles do happen if we hold to Him.
I always believe that we don’t have to be illiterate to be considered poor and pity ourselves, we just have to be resourceful in seeking solutions to our needs and most importantly, we MUST hold on to our faith that God is always with us, PERSEVERANCE never cease praying and TRUST IN HIM. Prayers can move mountains and it really did. This is the most important thing that I learned from this journey of our life. And I thanked God for this. And I want to hold on to this for the rest of my life.
In this regard, may I appeal to your generosity for financial assistance to make Kcat’s wish possible. The device alone would cost a lot. And we really could not afford it. I am jobless and could not go back to work anymore, aside from being a full-time caregiver to my daughter, I too am suffering from a chronic disease which prevents me from getting a job but never prevented me from helping my daughter regain her strength. My husband is a government employee and we still have two kids to support. Your little help would mean so much to us, this would give a chance for Kcat to realize her dreams and aspirations and help hEAR the world again. Her Cochlear implantation is tentatively scheduled on March 10, 2008 at the Manila Doctors Hospital.
Thank you so much. May the goodness of the Lord be always with you and your family.

You may use the following to donate. Any amount is much appreciated.
Account Number: Savings Acct. 1-060-03568-4
Rizal Commercial Banking Corporation Savings Bank RCBC
Kalentong Branch, Mandaluyong City

Bank details
Intermediary Bank : PNBPUS3NNYC
Wachovia Bank, N.A.
New York, New York
Account Bank with : 2000191133208
RCBC Savings Bank
Account Number : 8060-00386-8
Dollar Savings Account
Sender to Receiver info: Kalentong Branch
CHIPS UID 382399

Or contact: Madge Yarza
Landline: 533-6976
Mobile Phone: 0927-2459400
Address: 451-M M.Vasquez Street,
Mandaluyong City, Philippines 1550

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