| August Updates | ||||
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Updates Archive (2001) |
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August
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It's early in the morning on Saturday the 25th. We'll be leaving in a few hours, if I can get it all together. Yesterday Levi had a broviac put in his chest. A broviac is a tube that goes directly into his artery so that giving him his medicine is easier. It's kinda gross looking. There's a little bloody hole in his shoulder and then out comes a tube in the center of his chest. The tube has two more tubes that fork out of the main tube and sorta "flop" around when he moves. At first he was not liking it. The whole way home from the hospital he was asking questions about his "new existence". "How will I go down the stairs now?" "How will I eat now?" Then he said, "Mom, I can't breathe, I can't breathe" in a panicked voice. (Inside I was afraid it was some strange reaction to the tube or the tumor was swelling and causing trouble for him) but on the outside I acted calm and said, yes you can, you're fine, just breathe. He relaxed and said, "Oh, okay." And he was fine. He's so funny.
Yesterday before the surgery he was with Aunt Lori all day. In the car on the way to the hospital he said, from the back seat,"God is Jesus' Father and Jesus is God's son and He's the one who is gonna heal me." I'm such a faithless dud lately, it really helps to know that he still believes. I still know the Lord is with us. I still trust His plan is perfect. However, I have allowed my mind and heart to wander ahead to the "what ifs." And if I've learned anything through this it's that you can't do that. It will paralyze you.
I find myself "making" memories. I am sometimes afraid that is all I will have soon. I have been struggling with my thoughts. I look at him sleeping and see his chest move up and down with each breath. My thought is, I should enjoy watching this, someday soon, his chest might not move up and down with life. When I touch him and his body is so warm, my thought is, soon his body might not be warm. What will I do if I touch him and his body is cold. Then I can't function the rest of the day. I just cry all day. I know these are morbid and horrible thoughts but that is where my mind has been lately. Our pain level is contingent on Levi and his symptoms. When he is somewhat "normal" we are okay. But when his symptoms worsen, we fall into desperate thoughts. The truth is that those things will happen, maybe now, maybe when Levi is 80. Only God knows. So, now, we must look to Him to get us out of the sin of "looking too far ahead" and let me tell you He knew what He was talking about when He said "Don't worry about tomorrow, tomorrow has enough trouble of its own." –Matthew 6:34.
TODAY Oh TODAY, what a beautiful thing. We have NOW and TODAY. That's it!! It's all we've ever had. C. S. Lewis said, "The greatest thing is to be found at one's post as a child of God, living each day as though it were our last, but planning as though our world might last a hundred years." That's a lot easier said than done. But I am asking the Lord to help me get back in step with HIM.
I imagine me and my heavenly father dancing. Our hearts are one and we are beautiful together. We move to the music perfectly, we are the music. But then let my heart wander into tomorrow, I fall to fear. The dancing, the music, the beauty... it stops. Then, I focus my thoughts on Him. His love, His mercy, His power, His goodness… Ahh, I can dance again, together our hearts are getting in step again. He was waiting on the dance floor. He was the same, He was patient. His arms were open… and today we dance, we twirl, we laugh, our hearts are becoming one again… Help me Lord to choose the comfort of your arms, the beauty of your song… A little dramatic I know but it's the picture He gave me and I like it.
Love, blessings, joy and lots of dancing to you all!!!!!!!!!!!!
~jeff and jami~
August 22, 2001
Unfortunately we don't have good news this time. With a heavy heart I must tell you that, according to today's MRI report, Levi's tumor has taken on renewed vigor. The doctor says it is 20-30% larger now than compared to the original MRI back on March 23rd, even though we all know it was shrinking as of the MRI in June, as well as by all outward evidence until just a few weeks ago.
Plans are proceeding to go to the Burzynski Research Institute Clinic in Houston, Texas on Saturday where a new round of special treatments will start.
Updates will be provided as soon as we know more. Please renew your prayer efforts on Levi's behalf! And don't forget to intercede for Jeff and Jami. This is naturally a heavy blow.
Thanks so much,
Mel Guinn
Yesterday was Graci's 3rd birthday. Where does the time go? She adds so much to our family. She's like the exclaimation point at the end of our sentence. I will never look at my childrens' birthdays the same again. He gave us another year with her and we are so grateful. Today is Caleb's football jamboree game. He loves playing and we love to see him play (of course, I cringe everytime a big guy comes close to him and his skinny little body). Jonah is not playing football but enjoying watching and cheering for Caleb. The first week of school was great, both the boys LOVE their teachers, they argue over which one has the nicest teacher (I realize that will not last long). Levi is doing the same. Which is not that great. He is still favoring his left side a lot. He barely uses his left hand and even holds it up with his right hand so that it doesn't flop around. He gets very emotional at times and cries randomly. We have an MRI scheduled for the 22nd of August. If the results show that the tumor is bigger or even the same then we will be leaving for Houston, TX. Our tentative plans are to leave on the 25th. Caleb and Jonah will stay behind for school. I can't stand the thought of leaving them. Jeff will come back after 4 or 5 days and Levi, Graci and I will stay for 2 more weeks. I must say I look ahead with dread. I know God has some great plan for us. I know because He has proven Himself over and over again. But my flesh is weak and faithless. I would just prefer to stay home and do normal, everyday things. This is where the Lord has us right now and I am trying to embrace the refining process. I was talking to my brother (Dicky) last night about "the process". With everything in life the process is the most difficult. The end result is the easy part. (The only exception is eating sunflower seeds in which the process of breaking open the seed is more fun than actually eating the seed.) Smile.
In my distress I think of Isaiah 40:1, "Comfort, comfort my people, says our God." He continues to draw us close to Him by allowing us to go through the most difficult of times and then speaking tenderly to us, calling us to nestle in His arms. Then He pushes us out "on the limb" (again) allowing us to fail, helping us up, comforting us and then letting us try again... All this goes on and on until we get it right. Then when we get it right we find out that He did it all just to reward us in the end. The reward: A deeper knowledge and understanding of our Creator. A "romance" with Him, An eye-opening realization that life is all about investigating and uncovering the evidence of a God "in love" with His people. We are allowed to go through the valley not because God is mean but because He is good and wants desperately for us to know Him and not just a little but to the fullest.
Lord, help us to never forget. Give us the strength to carry on. Give us the wisdom to choose you, daily. As the world comes crumbling down around us please hold us up. We're so weary. Amen.
~jeff and jami~
It's been a while since I've updated you because we've just been so incredibly busy. I wish I could bring good news this update but it's not that great. You remember the virus that Levi had 2 weeks ago? Well, he's gotten over the virus however, he still throws up his medicine everytime we give it to him. So, that means he is not getting what he needs to de-toxify his body. He is still favoring his left side, he gets really tired and is extremely emotional. I know that the Lord is not surprised by this bump in the road. There is a good reason for this. We just can't see it (yet). We are looking into a nutritionist right now. I have been cooking foods that increase the ph in the body (which is what Levi needs) but it's really hard to think up new things. The kids are soooo sick of steamed asparagus. They used to love it but 3 nights a week is a bit much I must admit.
Spirits in the house are pretty good right now. Caleb and Jonah begin school tomorrow. That will be really strange to have them gone when I'm so used to having them around all day. They are excited and very ready to go! Graci will turn 3 years old on the 17th. She acts like she's 33. What a hoot she is, she used to be such a tomboy but she is coming into such a "girly" stage. Dolls, dolls, dolls and pink, and pretty dresses. The boys think it's great!!!!! Levi, is tired a lot. But when he does have evergy he is playing mommy and daddy with Graci or Superman with a towel strapped to his back. smile. He has lost (almost) all of his weight. He looks great and is so much more comfortable now. When he is feeling emotional he constantly tells me how much he loves me. He puts his chubby hand on my face and looks into my eyes and says "I love you mommy, and I like you too" It's one of those moments that I wish I could put on hold but can't. Jeff is doing well, he is planning a trip to Africa in September. He and my dad will be going on a construction trip with 3 other guys to renovate a missionary house. There will be time to witness to the villagers at night. I'm so excited for them. I hope their relationship with HIM will be forever deeper because of it. Jeff does have moments when he wants to back out of the trip because he's afraid to leave us. But, it's a chance of a lifetime!
We will be having an MRI scheduled probably next week. I'm kinda scared though. Since he hasn't been able to take his medicine I wonder what that means for the size of the tumor. Sometimes I get really tired of this whole thing. I wish I didn't have to always be afraid. Afraid that he will take a turn for the worse. Afraid that I haven't done enough to fight this. The stress level in the house has been high lately. Levi's fluxuating emotions take their toll on all of us. One minute he's laughing and the next he's crying for some unknown reason. My patience runs out often and I get onto him but then I remember (usually after I've "shown myself") the changes in his little body. Then I feel so guilty for not having more patience. I have to say "I'm sorry" to all the kids a lot lately. I've always wanted to be one of those soft-spoken, sweet spirited Christian women. You know the ones that speak softly and never raise their voice. They always seem to be thinking kind thoughts and saying kind words, constantly giving of themselves and never complaining... But I'm not!!!!!!! I'm one of those overbearing, loud women that make the sweet spirited women feel really uncomfortable. But, I'm working on letting the Lord radiate His sweetness through me. I'm praying that He will be patient through me. I'm praying that His mercy would be evident through me so that in my loud, obnoxious, mind-speaking foolishness my children will see a loving, forgiving, kind and merciful God who has incredible plans for them. Here's a great verse I pray the Lord will work in my heart to benefit those around me. (I've changed it to speak to me) "The mouth of the righteous (woman) utters wisdom and (her) tongue speaks what is just. The law of (her) God is in (her) heart; (her) feet do not slip." Psalm 37:30,31 Glory to Him!!
~jeff and jami~
This past weekend we went to Birmingham to see Dicky and Betsy. Levi was not feeling well the whole weekend. The other children had had a virus (24 hour) and he had the same symptoms. But he started favoring his left side again. I hoped it was just my imagination. Sunday night he had a bad headache. He woke up several times in the night crying. Monday morning we called Jan (our Dr./friend) to schedule an MRI. She called the neurologist at Egleston and he said we needed to take him to the emergency room. My belly turned to mud and steel. It has not gone back to normal as of yet. The I.V. process was just like it was the first day. He was screaming out of control, he couldn't be reasoned with. They had to wrap him up in a sheet. It was miserable. I wondered what I would hear come from the doctor's mouth this time. The emergency CT scan was to rule out two possibilities, #1 metastasizing of the tumor, meaning, has it multiplied? or #2 has the tumor blocked the cerebral fluid which would mean he would need a shunt ( a tube that would open the flow to his brain) put in his head. The Dr. came in at about 4:30 and told us that it was neither of those things. PRAISE THE LORD! So, the final word is that it is just the virus that his body is having a hard time fighting.
My heart is still pounding from that one. The whole way to the hospital I was wondering if this was " it." I couldn't help it. I know a positive attitude would have been more desirable but I just couldn't work one up. I couldn't help but envision what it would be like to leave the hospital without him. How do you do that? The practical side of a brain tumor and the real possibility of death hit me right between the eyes. I thought I had considered all the implications. But I hadn't even scratched the surface of the torment, pain, and just plain old broken heartedness that goes with it. My cruel mind was taking me to the funeral home purchasing a casket and flowers… since we're at the 4 1/2 month mark and the doctor's said he would live 4 to 6 months it seemed "right on schedule" to have him digress. I lost so much hope during that "waiting period." I must admit that I was asking God, wouldn't it be so much better if we all just died in a car accident or something quick? Lord, I could handle it so much better if you could just take us ALL right now. I could embrace death as long as we were all together, but the thought of having to separate was so gut wrenching. I was totally unprepared for it. When my children complain about things not being fair I always say "life isn't fair, it's hard and it only gets harder as you get older, so get used to it." I usually say that half kidding, half hoping they will grasp the truth in the statement. But as we were driving to the hospital on Monday I was thinking about that and thinking life isn't only hard and unfair it's absolutely unbearable today. I'm still emotionally recovering and I'm not sure if I ever will fully.
The good news is once again the Lord was with us. We were more afraid than ever. We were forced to search even deeper for the everlasting spring of life. It wasn't a "feel good" thing. It was a desperate dig into the inner life of Christ. The "suffering along with him" part of the journey. The valley. The part you know will come in life but you hope doesn't come any time soon. The searching part. The "is my heart really a place that welcomes Him?" part. I must say that I prefer the warm fuzzy part of "the walk", the part where you go to church all dressed up and sing about His faithfulness… No, I take that back. I realize that it's the desperate moments that bring depth to the "warm fuzzy" moments. So, once again (still), we are declaring the Lords faithfulness, his gentle hand holding us along the way . His tender pull toward understanding Him in a new way. The world is growing more and more dim and I think that is the ultimate goal, isn't it?
still shaking,
~jami~