September 29, 2001

It's Saturday morning. Everyone is asleep and I am in my "quiet place." I love it here. My thoughts are clear and complete...

Things are pretty much the same with Levi. He is still very heavy and immobile. He is still obsessed with food because of the steroids. He sometimes wakes up in the middle of the night just to ask if it's almost time for breakfast. He still wakes up every hour or two to go to the bathroom. He is such a sweet little man. Last night he tried to go to the bathroom by himself so he wouldn't have to wake us up. I woke up to him crying with frustration because he couldn't do it. He has very little use of his left arm and leg and gets off balance. But what a precious angel he is to try to let us sleep.

We're in a waiting period right now. I liken it to our country. It's an anticipatory time of wondering what tomorrow will bring. Will we attack the enemy or will they attack us again? Will the tumor get bigger or will the treatment work? We're just sitting around waiting. But in this time of "holding on" Jeff and I have been "gettin' with God", enjoying His presence, staying in "The Word." If the chipmunks and squirrels know to store up food in the Summer to prepare for the Winter then shouldn't we do the same? Surely I'm smarter than a chipmunk(?) But it's not food I think we should be storing up, It's His word, His heart, His ways. "Blessed is the man who delights himself in the law (word) of the Lord, and meditates on it day and night. He is like the tree planted by streams of water, which yields its fruit in season and whose leaf does not wither... (Psalm 1:2&3) "I desire to do your will, O my God; your law is within my heart." (Psalm 40:8) "Create in me a pure heart, O God, and renew a steadfast spirit within me." (Psalm 51:10) "O God, you are my God, earnestly I seek you; my soul thirsts for you, my body longs for you, in a dry and weary land where there is no water." (Psalm 63:1) "Find rest, O my soul, in God alone; my hope comes from Him." (Psalm 62:5)

In reading all those scriptures you must think "Wow, she's so strong." Quite the contrary. I find myself peeking around today, looking at tomorrow afraid of it and what might come with it. That is why I so desperately cower in Gods word. I stay there absorbing all I can until I have the strength to come out and "face the day" Christ is my strength. His word is my hope. The Lord is my "calm."

Henry Drummond wrote about Christ's life (of which my life cannot be compared):

"Christ's life outwardly was one of the most troubled lives that was ever lived:
tempest and tumult, tumult and tempest, the waves breaking over it all the time.
But the inner life was a sea of glass. The great calm was always there."

In the stillness, in the time of meditating on Him, His ways, His thoughts… my conclusion is this: Life is not about avoiding the waves, the "tempest", the "tumult". No, It's about finding Him and His calm in them. Because the "storm" will come. There's no question about that. The only question is what will we do with it when it comes.

Oh Lord, do in our lives what you will. Prepare us for what lies ahead… Glory to Him who was and is and is to come.

jeff and jami

September 21, 2001

I just ran across this verse while having my quiet time. WOW! It's a great one for the times. It's a call to pursue The Lord and His truth. His word and His ways should be the priority of our minds and hearts.

"Who have you so dreaded and feared that you have been false to me, and have neither remembered me nor pondered this in your hearts? Is it not because I have long been silent that you do not fear me? I will expose your righteousness and your works, and they will not benefit you. When you cry out for help let your collection of idols (house, jobs, image…anything that is more important to us than HIM) save you! The wind will carry all of them off, a mere breath will blow them away. BUT THE MAN WHO MAKES ME HIS REFUGE WILL INHERIT THE LAND AND POSSESS MY HOLY MOUNTAIN."

Oh Lord, this is my prayer to you, to seek your face and worship you forever that I may know you in the secret place and dwell with you forever. Oh bless us Lord. Put in our hearts a desire to know you and to the fullest. Lord help us in our foolishness to fear you and tremble at your holiness. You have an inheritance for those who do. You have mercy for those who open their hearts to you. You have kindness and peace as a gift for those that lay bare the wickedness hidden within. Lord help us to honor you always. As a family I pray that we will not be only "patriots" for our country but faithful (whatever the cost) servants to our true King. I pray that at this time we will not point our finger of hatred at the religion of Islam but point our fingers back at ourselves. "If my people, who are called by my name will humble themselves and pray and seek my face and turn from their wicked ways, then will I hear from heaven and will forgive their sins and will heal their land. Now my eyes will be open and my ears attentive to the prayers offered…" 2 Chronicles 7:14 &15

We need to confess our own sins before Him. We need to concentrate on what we have done to remove the hands of protection on our country. We have (as a country) allowed abortion, homosexuality, prayerlessness... we don't even acknowledge God/Jesus. If we think we are going to build a bigger, better, stronger country than before without seeing that God is calling us to humble ourselves and see that we have walked away from our protection in Him we are fools.

I know this is a yet another radical letter but I think the times deserve a firm warning to get our own hearts in order before we head out to war. This country pride is just a ploy from the enemy (the devil that is) to keep our focus on anything but our own relationship with Jesus. Ahhhh Jesus. I'm so tired of this pluralistic god thing. Jesus is the one who brought us salvation. In Him our hope is and always will be. Everyone is so afraid to say JESUS. It makes me sick!!!!!!!! …JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS!!!!!!!!!

I hope this letter found your heart and soul open and not closed to Him and His call to stand. Because I think this will separate the "men" from the "boys".

jami

September 19, 2001

Well, we're getting settled in and trying to get used to the extra daily activities. We have to get I.V. bags ready and change catheter tips, change the dressing on Levi's broviac (tube in his chest), give oral medicine.... Sometimes it takes us over an hour just to get the I.V. bags ready. I must say it's quite comical. I'll be cooking dinner, putting football pads in, helping with homework, talking on the phone... priming I.V. bags all at the same time. It's kinda weird to have medical equipment spread out on the kitchen table while I'm doing my other daily duties. Everyone is already used to it. They all help out. They take turns flushing out Levi's tubes. It's an honored position to be able to push the syringe in. Levi has the power to choose who will be "the one." Caleb and Jonah have both asked if they can take Levi to school for show and tell. Their classes have been praying (every day) for him.

Levi is doing okay and only okay. He is so heavy right now he can hardly move. I can't tell if he's having side effects from the steroids or the tumor. I must say that I have developed a deep hatred for decadron (the steroid). I really miss his original little body. He now weighs 52 pounds when just 3 weeks ago he was only 40 pounds. He wakes up every hour and a half to go to the bathroom because of the huge amounts of fluid going into his body. So, Jeff and I rotate nights to sleep. Levi sleeps in our room on a pallet. When he wakes up to go to the bathroom we have him go in a hospital urinal because it's just easier than getting him up and into the bathroom with the I.V. bag. We thought about just letting him wear a pull-up (diaper) but he wouldn't hear of it.

Yesterday was a tearful day for me. Some days are just that way. I can't really control it. I had to go shopping for Levi some new clothes. That is always hard because when I hold the clothes up and look at them they're empty. Just clothes, with no little body in them. My mind goes… and I have to retrieve it before it goes too far… I just found out that Levi's doctor in Houston (Dr. Bestak) died of a massive heart attack on Saturday. I just saw him on Thursday. I am in shock. I also talked to a guy that we met in Houston at the clinic. His father was getting treatment for a brain tumor… he died last Monday. My heart sunk when I heard. My hope took a blow, not to mention my feeling of complete remorse for their loss. But, I must remember that my hope is not in the doctors. My hope is in Christ. So, that brings me back to the daily realization that I depend on Christ for every breath. I must admit fighting depression has been the "battle of the day" lately. I seem to be surrounded by death and impending death. I met so many people in Houston that had been given months or even weeks to live. Sorrow is something I feel every day. I used to not understand what it was. Now I know it well. But Jesus was a "man of sorrows" – He understands and calls us to seek His face in the midst of it, which is easy because where else would I go?

In Psalm 6:6,7 & 9 David wrote: " I am worn out from groaning; all night long I flood my bed with weeping and drench my couch with tears. My eyes grow weak with sorrow… the Lord has heard my cry for mercy, the Lord accepts my prayer."

In Psalm 5:2&3 He wrote: " Listen to my cry for help, my King and my God, for to you I pray. In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation."

I know of a girl (Carole Shultis) that was very sick when she was 5 years old. She had to soak in tubs of ice water to keep her fever down. She had to get countless shots and go through things that no 5 year old should have to go through. She was not expected to live. She is now a grown woman with children of her own. She doesn't remember the physical pain she went through so long ago. She only remembers the pain and anguish she saw in her mothers eyes every time she looked at her. I am trying so hard to "cover up" the pain in my eyes when I look at Levi. But I know he sees it. Last night he was sleeping. I came in the room and just held him. I was crying and a tear fell on him. He woke up and saw me. I tried to smile and cover it up. He turned his head and wouldn't look at me. Lord, help me to be strong and joyful to keep him from any unnecessary pain.

We are so dependent on your prayers and so grateful for the commitment we feel from all of you. Please continue to bring us before HIS throne so that whatever the outcome HE would be glorified in our lives. If "life is but a vapor" Lord, let my vapor be a pleasant one to you.

jeff and jami

September 15 , 2001

We're Home!!!!! It was the longest 3 weeks of our lives. We started our journey home Thursday at about 1:00 pm. We drove for about 7 hours. (Of course we didn't get as far as we would have liked to because we had to stop so often to eat. Levi is on steroids again and can't think about anything but food. He gained 8 pounds in 3 weeks) We finished up our drive on Friday and got home about 3:00 pm. Jeff picked up the boys at school and killed time so that we could get in the house and "hide". We had told Caleb and Jonah that we wouldn't be home until Saturday. Graci, Levi and I hid behind the couch and waited until they came in the door. We jumped out and yelled "SURPRISE!!!" It was the sweetest reunion!!!. Jonah ran and jumped in my arms crying. Caleb just stared with his mouth hanging open. Levi cried with open arms toward Jeff. Graci went from person to person hugging. We were all crying. It was the most wonderful moment!!! I dreamed and cried often while in Houston about holding my boys again. It was even better than I had imagined. We were together FINALLY!!!!! When the attack came to America on Tuesday I had a panicked heart. I felt like I had to get home IMMEDIATELY. It felt as if the world were crumbling around me and I couldn't be with my family. I went to the doctors and told them that I HAD to get home!! But they said NO. I thought I was going to explode!! I just about "lost my testimony" if you know what I mean. I came dangerously close to complete panic!!! As it was it was only partial panic. I had to focus on God's sovereignty. It was the most difficult time of choosing to trust Him I have ever had. I told Him that He was pushing me way too far on this one. "How could you Lord?" I know you are with us but you just stand by and do nothing. I'm so tired of this Lord, I'm exhausted of this walk in the dark. Give us some light here. I can't take it anymore!!! It took me quite a while to see. But the next morning in my time alone He gave me enough light to get me through the day. I have prayed the prayer of Jabez even before Levi was diagnosed: ..."Lord, enlarge my borders (my range of testifying to His faithfulness)"... Well, He did. But here I was, standing on the edge of that border terrified at the vastness of it. It brought me to the next part of the prayer..."let your hand be with me"... because I'm freaking out!!! (that part isn't in the Bible but it's in my heart) I really and truly want to be with you Lord, honoring you always, getting to know the depth of your character, trusting you with each scary step of my new life. I have never known such dependence. I would like to say that I peacefully and willingly surrender to His molding. But let me be painfully honest. I feel myself kicking, screaming and crying all the way to the "anvil" I pray for the strength to surrender to your touch of greatness. It's so much more difficult now.

I know that I am kinda rambling about the "happenings" of my heart… forgive me. Levi's handling his new treatment pretty well. He is extremely tired and emotional. It's kinda hard for him to get around because he's attached to an I.V. bag all day long. He is also having a hard time getting used to his "new" body. It's much larger than it was just 3 weeks ago. He was sitting on the potty the other day and he leaned forward, when he did his belly scraped the toilet seat. He moaned. I said, what is it? He looked up and said. "I'm fat!" Poor little man.

Oh! This is totally off the subject but what a sweet story of his (Levi) love and understanding of Jesus' love for us. One day we were praying and after we said Amen, Graci said, "I don't like Jesus" (my heart sank, but I tried to remain calm) I said, "Why not?" She said, "I just don't, I like the devil" (I was trying to understand where she was coming from, realizing that she is only 3). But right then Levi said "Grace, the devil is sooo bad, he wants to choke you till you die (a bit graphic, I know) and he wants to chase you and scare you. He wants to make it dark and scary for you. But Jesus wants to hug you and scratch your back and play puzzles with you and wrestle with you. He loves you Grace." …I didn't have to say anything, he had said it all. Graci had a new and profound understanding of Jesus and His sweetness… she said "Oh, I do love Jesus, and I don't like the devil." WHEW!!!!!! I also realized that Levi's perception of Jesus is a reflection of Jeff and how he loves on the kids. What a statement!!!!!!

God's word is GOOD.....
"You have set your glory above the heavens, From the lips of children and infants you have ordained praise because of your enemies, to silence the foe and the avenger. When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, the son of man that you care for him? Psalm 8:1b-5

"O righteous God, who searches minds and hearts bring to an end the violence of the wicked and make the righteous secure. Psalm 7:9

I pray that in this time of fear and insecurity that you will seek the heart of your creator. I pray that you would become a more intense student of His character. There is so much change in these times we live in. It's too much for us spoiled Americans to handle. We have had such security in our lives. In the last 6 months I have learned a lot. But the most important thing I have learned is that focus is everything. If we focus on the problem we will crumble. But if we focus on Jesus and His goodness, His perfection, ..... We have Life and security beyond the mind's conception...

"As for God, his way is perfect, the word of the Lord is flawless. He is a shield for all who take refuge in Him. For who is God besides the Lord? And who is the Rock except our God? It is God who arms me with strength and makes my way perfect. He makes my feet like the feet of a deer; He enables me to stand on the heights. He trains my hands for battle...... You give me your shield of victory, and your right hand sustains me; you stoop down to make me great. You broaden the path beneath me, so that my ankles do not turn. Psalm 18: 30-36

Blessings upon blessings,

jeff and jami

September 7 , 2001

Hi,
It's Jeff this time. Jami hasn't had access to the computer for two weeks now. She misses her early morning "ritual" of spending time working out, reading the bible, praying, and journalizing her thoughts on this here computer. I miss her...

She and I, along with Graci and Levi drove to Houston on August 25 to start treatment at Dr. Burzynski's clinic. It was the day after Levi had outpatient surgery at Scottish Rite Children's Hospital, where he had a tube implanted into his main artery near his heart. This was to ready him for immediate IV treatment of the controversial non-toxic "antineoplaston" drug.

Our first appointment with Dr. Burzynski was on Monday the 27th. Levi's treatment actually began on Tuesday and the only side effects he has had is that he is very tired and lethargic, and this was expected. The doctors have been gradually increasing the dosage volume every day so that his body can handle the "peptide fragments" circulating through his bloodstream. They want Levi to be able to attain to the 160cc dosage every 4 hours of the A10-type antineoplaston. Right now he is at 50cc.

We are staying in a hotel room (clean, safe and pleasing to Jami - there is a treadmill in the exercise room), 5 minutes from the clinic. Levi has appointments 7 days a week for about 3 weeks. The first week was very trying because our appointments would last 4-5 hours. The kids would get frustrated because they would have to stay contained with us while we were learning how to administer the IV bags, tubes, flushing, programming the pump, etc. We have learned how to do everything by ourselves now so the remaining visits should not be that difficult. They are regularly checking Levi's blood for any imbalances. We thank the Lord he doesn't have to get the "big bad NEEDLE" anymore. In the last 5 months of this trauma, getting stuck with the needle has been his main battle. What a trooper he is. You gotta meet this guy! God has blessed us with such an awesome little champ. I am so glad we brought Graci. She really keeps things lively and not so boring.

Well, I'm speaking like I'm still there, but I flew back home Sunday night, the 2nd. I have work to do and need to be with Caleb and Jonah. Jami's mom, Judy, met me at the airport in Houston to "relieve" me (tag team effort), and to help Jami with the "load". I thank God our parents are here to help us during this hardship in our lives. We honestly have so much to be grateful for. Jim (my father-in-law), watched and worked for me while I was away. Mom and Dad took the kids to school, watched them for us, and took Caleb to football practice.

Jami would like everyone to especially pray that the doctors would release Levi early; she wants to be a "real" family again. I cancelled my mission trip to Africa this morning after much prayer and counsel. Jim and I were going (he still is) to Zambia to renovate a missionary house in a small village (our part is the plumbing) on September 15. My family comes first, even above ministry - God told me so!

I will probably be flying back to Houston Wednesday the 12th(?) to drive back with the family after Levi's release.

OH! There have been many encouraging emails sent to us from old friends, new friends and even strangers. Thank you. The words that you put down are very real and meaningful to us. One specifically today blessed me from my old friends, Mike and Amy Kelly. "Our hearts ache for you but more importantly God's heart is aching for you too!" That really ministered to me this morning before I went to work. It reminded me that God is very near to us and He is hurting for us too. Thanks. I was just reading Psalm 34, and verse 18 says, "The Lord is near to them that are of a broken heart, and saveth such as be of a contrite spirit. Many are the afflictions of the righteous: but the Lord delivers him out of them all". All I know is that God knows what He is doing with Levi, and we are going to trust Him no matter what happens (Isaiah 55:6-9). His ways are higher than our ways.

Jeff

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