Monday, August 13, 2012

Tumors, Scoliosis, and Chemo ... What Gives

This post is going to be a little message to God ....
This post is going to be a little raw about my feelings
This post is going to be a little about not understanding
This post is going to be a little about what Bee's situation is doing to me

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To the left is a picture of my fighter - Bethany. This picture was taken by my wonderful wife on her first chemotherapy day. Each chemotherapy patient at the hospital receives a gift bag filled with multiple goodies. It is to help them begin their journey. For Bee, this journey is 70 weeks, but this is not her first fight.

God, I really have no clue what is going on and what is happening. I know that you are big enough to handle it; so I will tell you that THIS SUCKS and I have no clue why Bee has to go through this or any of the other children in this world. I mean, come on; have you truly strolled the halls of the Children's hospitals and truly looked into their eyes and see the hurt and pain in their eyes and their families eyes. Many of them are struggling and do not know what is going to happen. These are kids.

As, I look at Bee, we found out that she had tumors at a very young age and have continued to monitor her. For information sake, from the time she was one till now; we had 14 MRI's or so to monitor the situation. Thankfully, we received the "no change" message until recently. For me, all the no changes may have given me false hope that she was going to fly through this and everything as going to be "fine".

Of course, monitoring the tumors and keeping a close eye on that was not enough. She also had severe scoliosis and it kept getting worse and worse. So, at 7, yes, 7 she had to have growing rods in her back and had to limit her activity for a year; yup; just what every 7 year old wants to hear. But, she came through it and even has gone through 2 procedures of lengthening the rods.

But, then came the news that we dreaded. Yes, there had been a false hope but at the same time; knowing the words could eventually come and they came. There is a change and we believe that we need to start a 70 week chemotherapy treatment. Yikes.

God, maybe you did not realize, but I resigned from my ministry position and am not making much money stocking shelves; especially when we are paying $419 a month to keep her insured. However, to shift from her a bit and to my wife; my wife needs insurance as well and we cannot get it. So, Ii am in a midst of a job search; we have some promising leads, but with Bee beginning the treatment; this makes the journey even more adventurous.

So, Bee had the first chemotherapy session on Thursday and the first 36 hours were good. Then the side effects took place. God, I am sure you know how much Bee loves food and how much she loves the tradition of eating donuts on Saturday. She was in so much pain (jaw) that she could not eat. Then on Sunday, Grandma took her to the buffet (oh her love) and she could not eat; tears strolled down her face.

I definitely do not understand and comprehend why this is occurring. Why does a girl so young have to have tumors, scoliosis and be in a 70 week chemotherapy treatment program ?

I am a little jaded and numerous emotions run through my mind. It is extremely tough for me as her dad to go through this. I am sure ANY parent would say the same thing that watches their child struggle. If I am honest, I am also aching because she has the tumors, scoliosis and going through the treatment process because of NF. It is genetic disorder and I am the one that passed it on to her.

It was interesting and not by mistake (led by the Holy Spirit, I am sure) that the sermon we listened to on Sunday morning was from John 9. John 9 is about the blind man from birth. Disciples were arguing and Jesus answer is troubling - especially in some translations. Here are some of them:

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. (NIV)

It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him. (NASV)

Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him. (KJV)

Looking at those, it could almost be read - may needs to be read (yikes) that this was part of God's plan to bring Glory to Him. Hmm, that is just odd to me and if I may be real blunt: God, that is warped to think that you may have purposely created people for that ??

I know that many do not like the message version but, I like it a little better and it is easier to swallow. Here is the Message:

Walking down the street, Jesus saw a man blind from birth. His disciples asked, "Rabbi, who sinned: this man or his parents, causing him to be born blind?" 3-5Jesus said, "You're asking the wrong question. You're looking for someone to blame. There is no such cause-effect here. Look instead for what God can do. We need to be energetically at work for the One who sent me here, working while the sun shines. When night falls, the workday is over.

I can swallow this. Things happen. We do not need to research or debate things. Life occurs. However, within life, we can look at it through the lens of what God can do. I think this is precious. I fully believe that God has an amazing story. He has a story of restoration and redemption. We are part of this story.

I have no clue why Bethany is going through what she is going through. But, I can tell you that she is teaching me a lot. I can tell you that she is an amazing young girl with a tenacious spirit and she is willing and able to share her story. God will touch her, lead her and give her strength and she will share that. I will continue to scream that THIS IS NOT FAIR. But, I know deep down that God is with us and I know that we can see God working it miraculous ways. I can point to numerous things and go there is no way to explain what is happening; it has to be God.

In the next few days, weeks, or months, I may be receiving a job offer and that job offer  may not be in Indiana and we will be looking at being separated for the school year / treatment process. If we do that, I am sure many will not understand and maybe question us and that is okay. We are navigating these potholes as we come to them. There is no road map on how to do it. I am so thankful for friends and family members that have gave sacrilegiously for us to keep our head above water till we (I) have a job that can provide finances and insurance for my family.

David in Psalms 40 says the following

I waited and waited and waited for God. At last he looked; finally he listened. He lifted me out of the ditch, pulled me from deep mud. He stood me up on a solid rock

I think we are still in the mud, but are slowly being pulled out of the mud. I am looking forward to the solid rock and being hosed down and cleaned as we give thanks to God. To follow Bee's story / updates / leave comments / give financially; you can visit us here: Beating The Brain Tumor

4 comments:

willowelephant said...

Jeff, please know that you're in my prayers, as is precious Bee .. and your whole family.

I wish I had some wonderful words of encouragement for you ... but finding myself in the mud with Don's scoliosis and prognosis ..and currently facing that 'someday is now' I'm out of those ...

I have come to despise the word 'scoliosis' ... and fighting anger at this point.

your words are beautiful and encouraging ... and filled with grace.

Thank you for sharing your journey, NF isn't our problem.. polio and scoliosis is ... but today, in this moment I feel just slightly less alone than I did a few minutes ago.

Much love. Peggikaye

Crystal said...

As I read this, tears are streaming down my face. I pray Bethany continues to be strong. I pray the whole family is able to continue to be strong thru this whole journey. Not just fighting the tumors, but the continued search for employment as well. I know this next 70 weeks is going to be very tiresome, and trying on you and the family's faith. I hope you truly do know that you all are loved and thought of so very much. You all are in my prayers daily. Bethany is truly a fighter, and I suppose after reading you're post it makes sense "why her". She is great at sharing her story. She is amazing at making others smile, and seeing the bright side of things. She is lucky to have such an amazing family to love and support her thru all of this. I love you all, and pray these next 70 weeks fly by.

Craig LaSuer said...

Thank you Jeff. Through your words and spirit. I do see the Lord's presence. I pray that the crucified and risen Jesus hold and bless Bethany and you all

Abdul Basit said...

scoliosis latihan is very painful situation ! Be aware ! keep healthy you just need to avoid from this.