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I was a teenage mom when I had my eldest child, MARIA KATHRINA (Kcat) Lopez Yarza. Kcat was born on Friday the 13th of May 1983. I was in labor pains for more than 10 hours when my doctor finally decided to go with the Ceasarian Secton. Kcat's heart beats was in zero respiration due to the cord coil and she suffered from meconium stain. She was revived and was in an incubator for 3 days. There was a guilt feeling and I really felt so sorry that my first child had to suffer all the pains. This was the time that I realized that I have an obligation that I need to face. Despite, the trials and humiliations that I’ve gone through during my early years of my married life, I felt I must be strong for an innocent child who depends on me. She is truly a gift from God, to love and cherish.Kcat was a very sickly baby. Until during when she was on her school age. I would always rush her to the Emergency room due to different complaints. She complains about her breathing, headaches, joint pains. She underwent a lot of tests but with different diagnosis. Migraine, Juvenile Rheumatoid Arthritis, Bellspalsy, Thorasic Dextroscoliosis with grade II on her right spine which was seen aggressively curving. She even underwent an EMG in October 1997, and the result showed chronic denervation on her left arm.
Kcat grew up to be a normal girl despite all the medical problems. She was not affected by her physical defect, she would just laugh about it and even make use of it to entertain her friends. We didn't know that there were tumors in her brain that were causing gradual health deterioration.
In August 2004, 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. 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, we rushed her again in PGH, she had an emergency operation, symptoms of hydrocephalus was seen in her CT scan, VP shunting was done immediately. Five days after the surgery, her health started to deteriorate, she developed hospital acquired pneumonia and, her swallowing was affected, her left extremities 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 more months due to unknown cause of her febrile episodes. She went home 5 days before Christmas of 2005 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 solid foods.
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 our 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. 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 , we 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”. “I will do everything that I can despite of my disability, Everything has a reason, LIFE MUST GO ON”. I was really crying thanking God for another miracle. Making us feel that Christ has risen for us that Easter Sunday.
From then on, we just let each day go 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 has developed her skills more and has become a fine artist. But we never lost hope that she would be able to hear again. I also consulted her ENT, Dr. Elmo Lago, who confirmed Kcat’s total deafness in 2006. 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 (there is always hope as long as the ears are there), Miracles happen only God knows” , Kcat and I hold on to what he said. We never lost 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 regained some strength, her facial muscles almost improved, she can swallow solid foods, her left foot has regained 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. So I did. I was referred to Dr. Charlotte Chiong, who pioneered the Cochlear and Auditory Brainstem Implants here in the Philippines. Aside from searching the team who did the ABI here. I was also searching more possible ways to seek for medical assistance and I came across the House Ear Institute, in Los Angeles, California. 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.. Great isn’t it? He honestly told me that they could not extend medical assistance since it is too expensive in the U.S. 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.
Kcat underwent another series of hearing tests, including the Auditory Brainstem Response and the multiple Auditory Steady State Response test. Likewise 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, same response from the previous test. Also to monitor the stability of Kcat’s tumors, she had her regular MRI done and result showed that her tumors are already stable after the two years following the treatment. According to Dr. 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.
According to Kcat "Nasa Diyos ang awa nasa tao ang gawa" so she started her hEAR Campaign (help my EAR hEAR) because she wants to hear the world again. She said we will not beg for money, she will sell shirts for a cause to raise funds for her implant. So she took a photo of her left ear as the design for her shirt. We started with 200 shirts and in a week it was all sold out, in two weeks we were able to sold out PhP 20,000.00 worth of shirts, it was selling like hotcakes then. We really never thought we will be heard. Until, Kcat's campaign in the internet was seen by some people from the Media. Ms. Ann Yusuico of Newscentral who started it all texted Kcat telling her that her story is so inspiring that she wanted to feature it in Newscentral and likewise to be able disseminate our fund drive and this would mean a big help to us. After the airing in Newscentral, came a call from the Probe Team, then followed by a segment in Yspeak, Kapwa Ko Mahal Ko, and a front page article on the Phil. Daily Inquirer featured by Ms. Congee Gomez. And the latest was Kcat’s a segment of her testimonials on Fr. Joey Faller’s documentary story in QTV 11 “Chances Are”. From there, a lot of people were inspired by Kcat’s interview and we were able gain more supporters.
Before we started our fund drive, Kcat asked me “Mommy will we be able to raise PhP1.5M for my implant in one year?”, I told her “In six months anak, we will make it”. We did not raise that 1.5M in six months, but in April 8, 2008 five months since we started our campaign Kcat had her cochlear implantation. We were able to raised money for her hospitalization and doctors’ fee, we were also able to pay the down payment for her CI device. On the sixth month, Kcat’s CI was switched on. She heard the the world again after 2 years of silence. See? We met our goal in six months. We just have to be optimistic about our goals, continuously work hard on this, and I believe God is always here to help us.
Kcat is the first Filipino to benefit from the Cochlear Implant, according to my research, only few NF2 patients in the U.S. and Italy have benefited from the Cochlear Implantation likewise. Now, Kcat could already recognize some sounds, though it’s not that clear yet, but still she so happy and contented with it, since she knows for a fact that she is much different from other CI recipients. We always hold on to our faith that miracles really happen, soon, she will be able to hear us all again, clearly.
Deafness is only one of those complications that NF2 had caused Kcat. The paralysis of her left extremities that cause her partial immobility, her facial muscles problem, her vision that made her left eye almost blind, the tumor in her brain that cause her difficulty in swallowing and the tumors that causes her seizure episodes are those still to be treated and monitored. We still have a long journey to face but we never lost hope that it is through our faith in God that she will be healed. One at a time.
Looking back from the day Kcat when was born and seeing how she has inspired so many of us now. I realized how wonderful my God-given gift is, whom I really took so much care from the very day that God has given her to me. “Whatever God’s purpose for Kcat, inspiring so many people and testifying God’s works on her, she is really doing it great”. Our children are all God’s gift to us, I always believe that one of my purpose in this world is to take care of them. I may not be a perfect Mom but rest assured that I always tried to be the almost perfect mom to my kids. And I owe my strength to Kcat who inspired me so much to move on so with my two kids Talitha and Maro who love their Ate Kcat so much that they are always around to give her morale support. And I finally realized the reasons why we have to go through so many trials. And our secret weapon to keep us moving is the UNCONDITIONAL LOVE that God always wanted us to instill in our lives.
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 all of these.
by: Madge Yarza
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Happiest Pinoy 2010 Awards Night
I got this from my mom's multiply blog.. Check it out!
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