On March 11th 2006, I put my 6yo daughter upstairs for a nap. She had slept for about an hour when her step-father, Tommy, said I should go check on her. It wasn’t unusual for her to nap for 1 ½ to 2 hours but he said he had a bad feeling so I went up. When I opened her door I saw her lying with her feet tangled in the blanket on the bed, head on the floor in a pool of blood, she was gray and having a seizure. I called out for Tommy to dial 911; it took 45 minutes for them to get to our home. She was in what is called status epilepticus for 10 hours. She bit the tip of her tongue off. After the doctors had gotten her out of status during her week long stay in the hospital one of the MRI’s showed a mass in the left side of her brain. We received the worst news any parent could ever hear, cancer, inoperable and terminal.
During this time I begged the Lord to spare Rachel’s life. My husband was not a Christian so I felt very alone in my pleas to the Lord. He would sit with me as I prayed but would not join me. I felt led by the Lord to take her from the hospital, a world renowned children’s hospital, so we made an appointment with a neurologist at Kennedy Krieger Institute for a second opinion.
I took Rachel before to our Pastor, Harold, and the elders and requested prayer. They anointed her with oil and prayed over her with the entire congregation. During the prayer I heard God speak into my spirit “I will heal her and I will be glorified.”. So, I knew that God would heal my daughter, although at the time I had no idea the path we would walk or the way He would chose to heal her. He is sovereign!
The neurologist at Kennedy Krieger told me that the “cancer” the first hospital diagnosed was not cancer. It was a mass, either causing the seizure or it was the result of it. This was music to my ears! NOT CANCER! An answer I had asked for so we began trying to control the seizures with medication. She failed over a dozen drugs. By August 2006 our neurologist referred us to Johns Hopkins Pediatric Epilepsy Center because she failed to respond to medication and the seizures increased in frequency and intensity. She was hospitalized in the PICU 4 times during this time when her rescue meds didn’t work either. I found myself turning to the scriptures more than ever.
The Hopkins team did many tests, tried newer drugs, older drugs, different combinations and with no result. She grew continually worse, until December 2006 she began seizing and wouldn’t stop. This time she coded on the table and almost died. The doctors told me that there was only so much her little body could handle. If they didn’t get the seizures to quiet soon, she might not make it.
When we took her home from that stay, I was unable to return to work due to her medical condition. It was then that God began to really make Himself known. Rachel’s medication co-pay was over 900.00 a month. With me not working and her father not paying child support things were more than tight, they were impossible financially. My husband, Tom, got to see first hand how The Living God can provide! Once, the day prior to needing refills on the medicine we knew we would be unable to buy them. Even going with only one weeks supply at a time it was more than we could scrape together. How would we provide her lifesaving medication? I told Tommy that my God would supply all our needs according to His riches. I knew God would come through and I asked Tommy to pray with me. The next day a check arrived in the mail for the exact amount of her medicine for the whole month! The family from my church who sent it said they felt led by God to send it. It was the exact amount down to the penny! God provided all the finances for Rachel’s healthcare either through fundraisers that others had for us or just laying it on His people’s hearts to give. God also provided people to drive us to appointments, give an encouraging word, meals, and one sweet woman even offered to sit with Rachel in our living room so Tommy and I could have a few hours alone in the other room! Tommy asked why do these people want to help us, I don’t understand. I just told him that is what God’s family does. Tom was quiet during this time, but God was certainly speaking! Rachel’s health was not improving though; it was actually deteriorating at a frightening pace. The doctors said surgery was her only hope.
We met with the neurosurgeons and surgery was scheduled for February 22, 2007. In the meantime Rachel was seizing 30-40 times a day. Tommy and I were constantly watching her because we couldn’t even leave the room for fear we’d come back and she would be gone. I tacked pieces of paper with encouraging scripture all over the house to remind me that He was with me and we were in His care. All in all, before the surgery, Rachel died and came back to me 3 times. It was the darkest time I had ever faced and it tested my faith as nothing ever had, but I knew what I felt God say to me during the prayer the prior year, “I will heal her and I will be glorified.” So I kept God’s promises all over the house, promises when I opened the cabinets, closets, everywhere! They were there not only to remind me but they were working on Tommy’s heart as well, even though I was not aware of that at the time.
On February 21, 2007 my sister flew in from Mississippi to help me at the hospital. We got a room at the Children’s House, a true blessing from the Lord, and we took Rachel to Hopkins early on the 22nd.
When Dr. Jallo, the neurosurgeon came in we took her into the surgical suite and Dr. Jallo prayed with us and the nurses and other doctors. I felt such peace and calmness I can’t explain it other than the peace that passes understanding. Our associate pastor, Dennis came and waited with us along with my close friend and sister in Christ, Susan. It went well; she was in surgery for about 8 ½ hours then went to ICU to await her room in the EMU. They took the skull off and placed grids of electrodes on the brain along with 2 rods of electrodes through her brain, replaced the skull and threaded the wires out of a hole bored in the skull. In the EMU they attached the wires to a pack that connected to the EEG machine. She was like that for 7 days, during which they would stimulate various areas of the grid to see if it affected vital functions. After the 7th day she returned to surgery again for a resection of the Left Temporal lobe. It went well, but they couldn’t to remove all the damaged area because she was unable to tolerate anesthesia much longer, they called it a success. She came home and was seizure free for 10 days. Then the seizures came back. However, later that month my husband put his faith and trust in Jesus Christ as his personal savior! I began to see how God was using Rachel’s suffering for His glory and although I wanted nothing more than for her to be well; I understood and accepted His idea of Him being glorified might not match mine. And His ways are always the best.
On May 1, 2007 she went back for the 3rd surgery. This time we had not only Dr. Jallo’s team but Dr. Ben Carson’s team as well. There were 27 people in her OR suite. This time before surgery Dr. Carson led the prayer. He asked God to use the doctors and nurses as His vessels of healing and to guide their hands. I will never forget the presence of the Holy Spirit in that room! God showed up and they went to work!
This time she was seizure free for 6 weeks! But they returned again. By the summer of 2007 Rachel was having frequent seizures again, although they were lesser in intensity because of the surgery.
Our epilepsy specialist told us he would like us to put Rachel on the Ketogenic Diet. The Ketogenic diet, which is very high in fats and low in carbohydrates, makes the body burn fat for energy instead of glucose. It was first developed around 1912 although its roots go back much farther. Howland and Gamble of Johns Hopkins Department of Pediatrics observed that "prayer and a water diet" for three to four weeks reduced "fits" in the nephew of a professor of pediatrics. Matthew 17 refers to a young boy who Jesus healed from fits, now known as epilepsy. Prayer and fasting, this was something I could certainly understand. The diet is so high in fat it causes the body to be tricked into thinking it’s in a constant state of fasting, or ketosis. God is so awesome that He provided us with this medical diet right in the Bible. He is omniscient.
So in November 2007 Rachel went into the hospital yet again, but this time to begin the Ketogenic diet. Dr. Kossoff, the director of the diet program told me not to expect much. They were just putting her on it to give her time to heal before going back for more surgery. He reminded me there was still damaged area in the brain they were unable to remove because of an unusual grouping of blood vessels so the diet might help but it was really a long shot, she was not a good candidate. I clung to the promise God made me, He would heal her and I felt certain it would be through this diet which was based on the Biblical teachings of Jesus. The induction was very hard on Rachel; she began seizing nonstop in the hospital. On the day we went home, she had 27 seizures by noon when we were discharged. The diet was a bit overwhelming because her portions are weighed to the gram, and I was nervous she wouldn’t like the food or I would measure it wrong but God calmed my fears and by the end of the first month on the diet she was down to only 1-2 seizures a month! After the first couple of months on it I noticed she only seized while she was ill. Then, on March 15, 2008 Rachel had a very bad seizure. She wasn’t sick either…
It was during the Easter program at church and I was in it so Rachel was staying with my friend a few miles from the church building. Halfway through the program, my friend’s husband came to find me and said Rachel is seizing, I’ll take you to her now. So off we went. I brought her back to the church building, and we sat in one of the Sunday school rooms designated as a ladies dressing room. I told those who came in to check on us not to go get my husband, he was watching the program with some of our unsaved friends and I didn’t want anything to hinder the Holy Spirit’s work through the program. As I sat in the dressing room praying over Rachel, several women came in with us and we prayed fervently. I reminded God of His promise and I told Him no matter what I would love Him, I begged Him to take the seizures from Rachel so she would be a living testimony of His Power and Healing. People were saved by Jesus that night! And I received the promise God made over a year before. That was the last seizure Rachel has had and it’s been almost two years ago this March! Praise God! In February 2010 Rachel was weaned off the diet completely and is still seizure free! She is completely cured of the seizures although she still struggles with the aftermath of 3 brain surgeries and damage that was done during that time. She is such an inspiration to countless people and has been instrumental in building God’s Kingdom! What more could a mom ask for?
I have been asked by Dr. Kossoff to come to Hopkins and speak as a parent educator to others about our experience and I have been doing this on a regular basis for almost 2 years now. I have had the opportunity to share the origins of the diet and in the process tell what Jesus has done in our lives with so many people I couldn’t count. There are families I am blessed to be able to counsel all over this country as well as Portugal, France and England, Africa, United Kingdom, Italy, New Zealand, Holland, Nova Scotia, Canada, Turkey, Israel and honestly I’m not sure but I think there are more. God is using Rachel’s experience to spread His love to countless people and He is not done! I am so thankful that He is in control and that when He makes a promise, He always keeps it!