God prepares the way - On Tuesday, February 12, I (Christy - the mom), woke up thinking, "God, I just want to be strong and courageous." When the radio alarm went off, I heard a man speaking about the book of Joshua. Needing encouragement later in the day I read in the Bible (Joshua 3:3-4): "When you see the ark of the covenant of the Lord you God, and the priests, who are the Levites, carrying it, you are to move out from your positions and follow it. Then you will know which way to go, since you have never been this way before." Somehow I knew that God would be with me during the day and would lead me through.
I decided to call my mom and share the assurance that I had received and to our surprise the very Scripture I had shared with her went with the events of her life a few days prior. She had taken a bus trip with my dad and some of their friends from church to Holy Land Experience in Orlando, Florida. When they finished with a lecture, they were released to browse the gift shop. My parents were moved by a beautiful replica of the Arc of the Covenant, the symbol of God's presence, and decided to purchase it. I was encouraged that God had gone before me and confirmed his leading through my parents.
To the doctor we went - Tuesday afternoon, the same day as above, Danni and I headed out in the snow to Sturgis, Michigan, to see an ophthalmologist because Danni was having severe headaches and double vision. He was very thorough, checking and rechecking her eyes. Then the moment came when he turned to me and said, "You don't have time for an MRI. She needs to be in the hospital immediately. She has swelling in both her optic nerves which is an indication of swelling in the brain." At that point, I knew it was serious. Within an hour's time we were slipping through the snow again headed for an MRI at the hospital in Lagrange, Indiana.
The blessing in this was that the MRI machine on a semi truck miraculously was there, ready, and waiting. It is only in Lagrange on certain days and on certain weekends. God was going before us as the word above had indicated he would do so. When the MRI was completed, they were read by a radiologist in Ft. Wayne. Within a couple hours time, we had the results. Our family doctor, Doc Egli, was there to read them to us, because he just happened to be at that hospital delivering a baby.
The MRI - Like a punch in the stomach, the images appeared before our eyes. One, two, three spots, and oh my, another spot in the back on the other side of her brain. How could what I was seeing be real? Danni sat beside the screens on a stool closing one eye to stabilize her vision enough to see the screens. We stood in silence as Doc explained what we were seeing. How can this be possible; she's only 19?
What could be done? - We were told the hospitals were full - no beds available - but we could make an appointment with the neurosurgeon the next morning. We called the elders of our church as the Bible instructs. They and a few others came over before bedtime, and we laid hands on Danni anointing her with oil as we prayed for peace and healing. I tossed and turned all night struggling to lay the burden at the foot of the cross.
The next morning - We headed for Ft. Wayne to see the neurosurgeon. Barely making the appointment time, we were ushered to a small room where Danni was examined and told her options. The family opted to have the biopsy to see what we were dealing with. Again, God went before us with getting us quickly into surgery prep. The doctor’s appointment was at 9 a.m., and she had the biopsy at 4 p.m. What a brave soldier – I was very proud of her. I know she was afraid but she kept a strong face for us.
The results - The doctor was done sooner than we had anticipated (or was it that time just passed more quickly in my mind?). The procedure had taken three hours or so. I could feel the prayers as thick as a warm blanket covering us all. The lady in charge of surgical waiting led us to a small room where the doctor would brief us. My what a small room when you’re waiting to see what would become of your oldest "baby." The doctor appeared at the door and said the words we were hoping not to hear - cancer, tumor, stage three. That was his opinion but we wanted to wait for the exact pathology report to confirm. Maybe he was wrong. Maybe by some miracle the test would say something different. What a blow when the next evening the test did confirm the doctor's fears, only worse, stage four.
The long night - Danni was taken to a private room in the pediatrics and teens unit. The praise here was the wonderful care given us by the nurses who informed us about the Ronald McDonald facilities on the floor above, the free snack basket on the counter, the free meal ticket given once a day, the fresh coffee in the morning and the nice recliner and blankets for me to stay the night. God had thought of everything, even a nice big bathroom for Danni. Every need met over and above! My God is the god of more than enough! She did wonderfully during the night, having a popsicle at 3 a.m. We shared a lot of laughter (as you can imagine would happen with Danni). She kept me in stitches, so brave!
Decision time - Do nothing, take the tumor out with wafer implants, or take the tumor out with no wafer implants. Those were the choices. How does it happen that a 19-year-old girl finds herself in such a position, fighting for her life and making a decision that would cause even the most mature adult to tremble? "I don't want to anything," she said. "What's the point? It will just grow back." Those are not the words a fighter mom wants to hear. We (her father, stepmother, stepfather and I) decided to call the doctor in again to help her see clearly what she was facing. Man, talk about high stress. My chest hurt all day. "I guess I'm selfish," I told her. "I want to spend as much time with you as I can." Don't give up! I screamed inside, don't give up! We all decided to take a break. It was lunchtime.
As we headed to the cafeteria, we decided she had to hear the doctor for herself, and he must be frank with her. I wandered half-dazed in the cafeteria, people moving about filling their trays, it seemed surreal. I wasn't hungry, but I knew I had to take care of me so I could take care of her. "What are you doing here?" I heard a familiar voice. It was my friend from work. She was there taking a break too. Her husband had been ill. As I explained the situation she began to tell me about how God had miraculously healed her of a brain tumor. "I stood at my kitchen sink and the next thing I knew I felt this bolt of heat hit my head and go straight through me to my feet," she explained. "I knew something was going on. The next day, I went to have my MRI and the doctor said, "You are kidding right? You don't have anything, there's nothing here!" What an encouragement! Just at the time I needed it. God has a way of bring people to your path just when you need them. It was a beautiful thing. "I will be praying" she said.
God going before us, the Ark of his Presence on the shoulders of the priests moving out from their position heading for the Jordon at flood stage. - The doctor came to the room and explained things to her, suggesting things about her decision she had not thought through. "If I can call within the next twenty minutes for the wafers to be delivered, we could possibly do the surgery tomorrow," he said. "I don't want to put added pressure on you, but you have to know the possibilities, or I can do surgery next Tuesday." Next Tuesday! I thought, that's an eternity away! My stomach aches at the remembrance of these few hours. With that the doctor left her to her thoughts, her dad on one side of the bed and I on the other. She snuggled the stuffed dog her friends had brought her the night before. She didn't want to talk, but a decision had to be made. "Ok," she said, "I have peace about Tuesday but not about tomorrow." "Are you sure?" I said jumping up and down inside. "Once the decision is made there is no turning back.” Her father and I went to the nurse’s station and told the doctor's assistant to schedule for Tuesday. What a relief! I was so glad that portion of the story had been written.
Going home - Danni was so relieved to be heading home, and with some apprehension, so was I. What would the next few days be like waiting? "What can we do?" two of my best buds in the world said. The "tragedy coordinators" I now call them, not because they make tragedies but because they make them bearable for all involved. God going before us again. “Have you eaten? Are you tired? Go and rest, eat something,” they say to me. The phone rang, it was the doctor's office telling me what time to be in surgery, and also saying Danni will need to get a buzz cut so they can put markers on her head for surgery. They could work around the hair but it would be better to cut it all one length so it grows out evenly. Now, she will lose her hair, I thought. Not that she's stuck on her appearance, she has more depth than that, but she is a teenager and those things are important to her. What am I saying? I can't imagine having to give myself a buzz cut for brain surgery.
The Blessed Weekend- We had so many laughs and fun! That seems so strange to say “fun,” but God’s yolk is easy and His burden is light, right? (Matt: 11:30). Food, food, and more food was delivered to our home!!!! Wow! These people can cook! Gifts and hugs and scriptures and love and support and laughter! Man, this is what being a Christian is all about! How do people make it without Him?
Danni got a “magic light-up wand” and proceeded to make it light up and swing it around every time she wanted something from her “slave-suited family.” She’s so funny! The Tragedy Coordinators got her a special box with hats, hairstyle magazines, Marti Gras beads (for handing out at the hospital after surgery), and other various little things. We were going to have a haircutting party, but Danni didn’t feel up to it. We understood completely.
Monday- was a little stressful as we worked on legal documents. Danni didn’t want to talk about things. I told her that I didn’t want to talk about these things either. Why should you ever have to talk to your children about them signing a power of attorney so you can take care of them? Danni couldn’t bring herself to cut her hair so she didn’t. She had hoped that she could keep her hair but I knew that wouldn’t be possible. I also talked with her about her spirit. How was she doing? She didn’t feel like having any company, understandably so. She cried when we had to turn people away, but she just wanted to rest.
The Surgery Day- The alarm went off at three a.m. and we were headed to the shower. By four a.m., we were headed for Ft. Wayne. At five, we arrived at the “sharky” hospital for “sharky” surgery. If you haven’t guessed, Sharky is my name for Miss Danni. In no time, we were in the SAU room awaiting the doctor to come and prep her for surgery. He had to shave her hair off and put little “life saver” looking markers on her head for the MRI. The purpose of the markers was to make a “map” for the doctor to follow during surgery.
Every hour and a half the nurse would come out and give us an update. As soon as I would get information I would run to the laptop and update all of the people praying. It was a great thing to keep people informed and to take my mind off of the circumstances. How blessed and encouraged I was to read all of the little “love letters” to Danni and the family. People will never know how the words they left for us on the blog encouraged not only the family but all that were there waiting patiently with us. Every so often we’d have to check and see who had written in and what was said. What a God-send.
Danni was done with surgery faster than expected and once again we were ushered to a small room to talk with the doctor. As we sat there, we had some light discussion and even a few laughs. It was good because waiting was murder! The doctor came in and said that he had taken out a tumor about the size of his hand. He couldn’t give us many details because he said Danni would have to wake up before he knew more. He would check her for signs of stroke and other neurological problems. He said that she could have a “lights on and no one home” outcome for a few days. Well, we got people praying about that and two hours later she was awake and the doctor’s assistant told us that she had smiled and waved at her! When we were told this we expressed ourselves loudly for joy. PRAISE GOD!
Seeing her for the first time was incredibly moving for all of us. Grandma and Grandpa Frain, Uncle Kevin Frain, her dad, Matt, and I were the ones to see her first. What a relief! She seemed a bit unsettled and I asked her what was wrong, “I just had brain surgery!” was her answer and she rolled her eyes. I could have jumped for joy! It was Danni for sure! I never thought I’d be so glad to see attitude in my life! All of us were overwhelmed as we witnessed the Glory of God before our very eyes. He had been there, gone before us, and sustained us during one of the most stressful storms we’ve ever faced. So faithful is our God, he never fails!!!
Crash time- With Danni safely in the hands of the nurses in ICU, I could finally rest. Some people came to visit us and we went for dinner in the cafeteria. Matt left soon after we were back and I bedded down for the night. Alicia, Danni’s stepmom, gave me a blanket she had bought for Danni and she said I could use it for the night. I was grateful for the blanket - it made a good pillow. It wasn’t long until I was out!
Fast morning! - I awoke about 4 a.m. and freshened up. I called to see if I could go into see Danni and the nurse said it was ok. She was awake. She looked beautiful as usual. As I touched her feet and arms and hands, I was moved to tears thanking God for his mercy and loving kindness to her. He has truly done a work here! The God of Redemption, the God of Healing, the God of Provision, every name the Bible gives him is so true. So many people think that being a Christian is dos and don’ts. So NOT true! It’s so much more than that.
Ok down off the soapbox. Anyway, I went to the gift shop to get some toothpaste and there again was God’s provision. Just as I was making my way back to the lobby, I caught up with the doctor in the hallway. He gave me very encouraging words, “We will remove some of the tubes today and move her to her own room. She’s doing very well and may be able to go home in a few days.” I was stunned; I had to ask him to repeat a few things he said to me. I was dumbfounded, speechless.
Matt came a short time after and we went for some breakfast. As soon as we came back, as we walked into the lobby, the attendant said, “There’s a call for you.” It was the nurse back in the ICU unit. She said that Danni would be moving to her new room and that we could walk along with her. I expected to see Danni in a bed but NO to my surprise she was in a wheelchair, sitting up and holding her balloons that her college friends had brought her the night before. (Don’t worry kids, Matt took the lovely flowers home with him last night because she couldn’t have them in there.)
Mom has a meltdown- I had a nap, but apparently I’m a bit sleep deprived, or maybe everything is just catching up to me. I guess I’m not superwoman but a sinner in need of grace. It all came about when the oncologist stopped for a visit. “You’ll need to take this pill an hour before radiation and she’ll have full brain radiation...” Pretty soon all the drug names and procedures ran together. I tried to get my notebook but I couldn’t keep up. “…Then maybe you can go to Angola and you really don’t have time to start all over if you want to take her to Goshen…” It sounded like this, “…Yadda, yadda, yadda, I really don’t care about her as a patient. I do this every day and you are supposed to understand everything I’m saying.” I broke. How am I supposed to know what to do when? And what about this doctor prescribing meds and that doctor prescribing meds? And none of them care about her like I do! I have to help her! I was overwhelmed. I yelled at the doctor.
Alicia (Danni's stepmom) was great. She just took my hand and said, “That’s why we’re here to help you. We’ll do this together. Why don’t you go home tonight and I’ll stay with her?” I love her. I’m so grateful for her. “You should take her home and take care of her,” Kent (Danni's dad) said to Matt (Danni's stepdad) (not, by any means, in an accusing sort of way, but with genuine concern).
Later, I ate a whole box of chocolate-covered Pokys (yummy stick cookies), there that’s better. Don’t ever get between a stressed woman and her chocolate!
This is how we all know that the sustaining power I had yesterday did not come from me. I’m not capable, BUT HE IS ABLE! MAN, HE IS REAL!
Days of instruction and procedure- Today I spoke with Danni's nurse. She has a lot of cancer experience. She believes Danni is going to be permanently disabled. I think I'll take one day at a time. Danni is very compliant. "Thank you," she says. "That's nice." she says. I asked the nurse about this too and she said that it is all part of the area that was disturbed. She also said that Danni will go through phases of grief. She must be in the stunned or numb portion of the cycle. You will be the one to get the brunt of whatever comes from her because you are the mom. "I love her no matter what, you mean." I said. "That's right," was her reply.
The nurse didn't seem to think that these small alterations in her personality would be permanent. I hope not. The portion that was removed controlled personality, movement, behavior, memory, intelligence, and reasoning. It will take a while for Danni to get back to full speed, BUT GOD. That's what I have to say to that! I was kind of down after I talked with the nurse. Cancer appears to be an all-consuming thing. Almost as if we're standing on the edge of a precipice ready to fall over. Good thing I serve a Living God who is an ALL CONSUMING FIRE! I'd much rather be consumed by him. That is what I choose.
I talked with one of my tragedy coordinators, and she gave me hope. I love her. Later in the afternoon, I knew she was praying. I witnessed Danni's demeanor change. She began to talk and laugh and joke with her stepdad and me. MORE MIRACLES, BABY! AMEN!
Thoughts about going home- I'm sitting in a small lobby on the 5th floor. Just me and my laptop and someone who just came out of the restroom. He's gone now. It’s dimly lit and the game is on TV. The nurses are chattering happily in the background as the pop machine is whirring. Can I do it? How can I take care of her? One could get overwhelmed, but I've chosen to be consumed by the fire of my God. So what do I do? I must turn to him, he's my only hope.
Matty prayed for me before he left. He reminded me of the scripture where Jesus says, "Don't worry about tomorrow, today has enough worry of its own." It's so true, ya know? When you're in this type of situation, you barely know what day or time of day it is and you can't plan your life beyond the next hour. The scripture, I can do all things through him who strengthens me comes to mind. I love hearing His voice. Small and still, loving and kind. It brings tears to my eyes. His word is so rich. I feel like I've actually been living it for the last few days. It’s sad that it’s a tragedy that brings me to this point. I get so busy with the worldly stuff. Lord, help me embrace these circumstances and make me a real Christian. I've spent so much time running from circumstances, begging you to get me out or through quickly. I trust you, God, and I pray this with great fear and trembling. Make me more like you. Amen.
A song comes to mind... Refiners Fire, my heart’s one desire is to be holy, set apart for you Lord. I choose to be holy, set apart for you, my master, ready to do your will. Beautiful song I think I've sang it a million times, but today I really mean it. Amazing how when you begin to focus on Him everything else grows dim. I'll hold my peace. The peace that Jesus leaves me. I think I'll go rest now.
February 24, 2008
Breaking out of the hospital takes a lot of work! The process began at 8 am when the doctor came in and wanted to remove the bandage wound around her head. Danni was very apprehensive about letting the nurse take it off. The nurse assured her and began to cut the place it was fastened. Around and around Danni's head the bandage went, finally we were down to a layer of cotton. Ouch! I thought, that has got to hurt. I asked Danni if it did and she said it didn't. I was so amazed. The doctor was pleased with her progress and the nurse allowed Danni to take a break from the bandage removal, she could tell Danni was stressed.
We waited for the chemo person to come, then we waited for her lunch to come. The nurse came in with page after page of instruction and doses of medicines and prescriptions and appointments, so much to keep track! I was overwhelmed before we left! We waited for the nurse to clean her head and then the loading process began. Matt carried the blankets and bags and other presents she had received and loaded them onto the cart. The big smiley balloon on top that her brother thought she just had to have! That was one trip.
The nurse sent a volunteer with a wheelchair, Danni climbed in and away we went. I took the last two plants and we piled into the elevator. Driving down the road was nerve-wracking, I thought about what would happen if we had a wreck. But we made it home safely. She was exhausted and dropped into bed. I helped Matt move the stuff in from the van and up to her room.
I've got to get organized before 5 o'clock pills, I tried and tried to get in my head how this should go. When to take what pill when and how many to take a day. Sorting through 9 different perscriptions trying to use as much as we could of what we had already purchased. I'll have to cut this one in half on the third week and so I'll just have to buy the 3mg portion of this pill. I'll give her 2 of these to make the 1000mg they have prescribed. I'll have to buy these next Thursday to get them in time and the insurance won't pay for the chemo pills so here is another thing to fill out and fax to this number, have to check on that Monday. These were all thoughts that ran through my mind. I had to go take a nap. Just figuring out the pill therepy wore me out.
When I woke up I went out into the kitchen and on the card table was a pill organizer. I grabbed it and said, "Oh, thank you, God." Little did I know that without knowing what I was going through, my tragedy coordinator had prayed and asked God for one practical thing she could get me on her way to Wal-Mart. A pill organizer!! Of course! God went before me again. She dropped it off as I was sleeping. I love how God thinks of everything. I gave her a huge hug later. Amazing how a small plastic box thing could be God's provision. Little things mean a lot to someone going through this valley.
Saturday breakfast with friends to start the day- I just wanted to do something normal. It was so good to laugh and joke with my friends. Things I took for granted, I now realized how special they were to me. One of my close friends came to the house after breakfast. She filed some paperwork with the State for me and then researched college loan things and got a new W-2 for Danni and we could not find hers. She has Danni's taxes covered for me. She said, "I'll check into disability and medicare for her just in case you get a fight from the insurance company and they drop her. What a load off my heart to have such an intelligent, trusted friend on the case.
God had once more gone before me, holding back the Jordan at flood stage in order for me to write and share with you the testimony he's building in me!
Sunday morning church in my jammies! I could get used to this. I didn't want to leave Danni and I wanted my mom to get out for a while with her friend so Matt and I decided to have church at home in the hopes that Danni would join us. She just wanted to stay in bed. She did get dressed this morning, bless her heart, she's trying. Pray for her please, those of you who pray. This mountain has got to be huge!
It was Matt and I and two of my closest friends. We had a wonderful time. It lasted for 2 hours and it seemed like just a few moments. We had cinnamon rolls and fruit and coffee as we discussed the scriptures and reflected about who God was to us individually. Matt led us to Matt 16:13-17 & John 15:7. We shared our thoughts and scriptures as they came to mind. We cried and encouraged one another. Man! what a blessing. I felt uplifted and cleansed. How wonderful to dwell in unity and speak about the deep things of Christ. How wonderful to be in the presence of those I love and have built trust in sharing the deep things in my heart. It felt like the book of Acts all over again! What a beautiful, positive experience.
My one friend had not set foot in a church for quite some time but the love of God that was in her heart rolled down her cheeks. She appologized but I told her let them go. We were all amazed at how God brings unexpected good out of such dark circumstances.
I battled fear over the swelling in Danni's eyelid and her vision problem today but as we spoke and Matt read to us the fear lifted and once again peace filled my heart. "Hide yourself in him," Matt read, "and do not fear for when we fear it reveals to the enemy where we are hiding in God." Wow! the light went on, what a powerful and so true statement. We can resist fear and we must if we want to stay hidden in Christ. Safe and secure within the folds of his robes. I'm so stunned by the body of Christ and the workings of it. Surely, this is what God intends the bride to be and I feel I've only seen a glimps. There's more to come!
That’s all I have for now the story is still being written. I’ll write as I can.
Praises Along the Way Archive through February 26
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