In 2011 Mercy was diagnosed with OMS, which stands for Opsoclonus Myoclonus Syndrome affecting only 1 in 10 million children. Her illness includes permanent damage to the cerebellum of the brain. She is unable to walk unassisted, has a constant left foot tremor, and daily seizures. The disease is an autoimmune deficiency. Therefore, Mercy has undergone a trial of various immune suppressant treatments, none of which have been successful.
There have been quite a few changes in Mercy’s body since last summer of 2012 when we finally made the decision to go against what the doctors strongly suggested and begin her medication weaning process in spite of all the risks. It took us many months of prayer and seeking medical counsel with Mercy’s specialists before coming to this very difficult and important decision. Mercy’s top neurologist explained to us that taking Mercy off her meds could potentially be life threatening. However, we felt that keeping her on the meds were also just as high of a risk not just physically but mentally, emotionally, and psychologically. The entire family was suffering right along side of Mercy day after day as her symptoms seemed to worsen no matter how high her doses of medications increased.
The side effects of Mercy’s medicines became so unbearable to the point where the doctor wanted to increase Mercy’s med doses yet again at which Camie (Mercy’s mom) broke down in the office and began to cry and explain how truly difficult it has been. Some of the more severe side effects included rapid weight gain, “moon face”, insomnia, high blood pressure, uncontrollable temper tantrums, emotional instability and hair loss just to name a few. In addition, Mercy continued to have daily seizures as well as very limited and challenging diet restrictions. All of this seemed to be more than our family could cope with at times, especially Camie as she is Mercy’s primary care giver during any given workday.
Just before the summer of 2012, we began weaning Mercy off of the steroids. In addition, after Mercy endured 4 rounds of unsuccessful chemotherapy trials over the course of many months, we finally decided to discontinue her chemotherapy treatments in August. We felt a mixture of relief and anxiety all at the same time, as we had no choice but to put our trust in God for His divine wisdom and, of course, for Mercy’s health and life.
The weaning process seemed to be going rather well until the night before her 7th birthday (July 21st) when she had 9 seizures in about a 3-hour period of time. Then again in mid-October, Mercy had an 80-minute, full-body seizure that nearly took her life and left her in the ICU at Loma Linda Children’s Hospital, CA for two days. The days following that seizure were unknown as the doctors thought that Mercy may have further brain damage due to the severity and length of her seizing. Not only were the doctors surprised that she survived such a physical tragedy, but they were equally amazed that she was not a “vegetable” as a result. With every passing day after that seizure, Mercy’s physical and mental abilities grew stronger and stronger. She was even able to return to school only one week later. This was amazing and miraculous to say the least!!!
The week before Christmas 2012, Mercy was completely weaned from the steroids. This, in itself, was an answer to prayer as we had told the Lord, at the beginning of that year, that our desire was to have Mercy free of steroids by Christmas Day. It was a celebration of two miracles: Jesus’ birth AND another answer to our prayers. It was a wonderful time being with our families in CA.
Since Christmas 2012, Mercy has been weaned from all the other prescription meds that were counteracting the side effects of the steroids. Currently, the only prescription med that she is taking is a newly prescribed anti-seizure drug that has very minimal side effects. Unfortunately, it doesn’t seem to be working as Mercy has been having (almost) nightly grand mal seizures in her sleep for a few weeks now.
In spite of it all, we are so thankful to the Lord for all His many provisions. He has given us emotional provisions with His peace that comforts like none other. He has given us spiritual provisions as people continually tell us they are praying and believing with us for a complete miracle in Mercy. He has given us physical provisions as people have donated their time, efforts, and resources to ease the burden of caring for a sick child. And He has given us financial provisions through so many of you who have participated in helping raise money for Mercy’s ongoing medical expenses.
[As Mercy’s family continues on their journey, they shared this update with friends & family in April.]
“Our fragile Mercy girl has been having some pretty bad bouts of insomnia this past week accompanied by grand mal seizures late at night and early in the morning, interrupting the little sleep that her body is trying to get. Her seizing has been getting more and more frequent than usual. In the last 24 hours alone, she has had 4 seizures (1 full body convulsive last night, one facial focal leaving her unable to talk afterwards, another full body convulsive this morning, and one silent at church this morning.) Please pray for her body to find relief from the seizing and nightly insomnia.”
We continue on this journey taking only 1 day at a time and sometimes taking only 1 hour at a time. We continue to believe God everyday for Mercy’s complete healing. We continue to trust in our Lord for His perfect plan to be fulfilled in Mercy’s life. Philippians 1:6 says, “Being confident of this, that He who began a good work in you will carry it on to completions until the day of Christ Jesus.” Amen!