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Nathan Charles’s Story

We have 4 children: Sarah, who is 11; Matthew, who is 8 1/2; Nathan, who is 7 years old; and Tabitha, who is 4 years old. Nathan was born on Dec 28, 2006. He began having seizures just before his 1st birthday on Dec 24, 2007. We have had multiple EEG's and a CT scan that were all normal. The doctors believed he had BPVC (a type of childhood migraine & vertigo disorder). In October 2008, his seizures began to happen more frequently. Where he used to have them once or twice every few months, he began having 10 - 15 a month. The Pediatric Neurologist sent us for a MRI on January 14, 2009. It was suppose to be very routine and they did not expect to find anything. However, just a few hours after his MRI we received the devastating call that Nathan had a tumor on his cerebellum that went over into the peduncle. We were sent to Duke on January 16, 2009 to see a Pediatric Neurosurgeon, Dr. Grant, who said we needed to set up surgery right away. On Tuesday, January 20, 2009, Nathan went into surgery to remove the brain tumor. Dr. Grant was able to remove a portion of the tumor but had to leave about 45% of the tumor. Pathology reports show that the tumor is a low-grade astrocytoma, both grade 2 (Brain Cancer). The tumor started to grow as of an MRI on 3/5/09. So Nathan had an InfusaPort placed in his chest on 3/11/09 and we started chemo on 3/12/09. The chemo is to try and keep the tumor stable for as long as possible. We are still praying for a miracle and that God will remove the tumor. Nathan was off of chemo from Aug 2010 until October 21, 2011 when an MRI revealed a 3 mm increase in growth on the brain as well as a tumor inside of the spinal cord (neuroglial tumor). He had surgery to remove most of the spinal cord tumor on 10/31/2011 and began chemo with Vinblastine on 11/14/2011 and Avastin on 12/14/2011. Both meds had to stop in Spring 2012 because his quality of life had declined. The cancer progressed again in Sept 2012. On 9/4/12 both the brain tumor and spinal cord tumor showed growth. Started chemo with Temodar and Etoposide 9/12/12 and started a third drug Revlimid Oct 2012. These are just to try and stabilize the tumors but will not get rid of the cancer. It is just to try and buy time. January 6, 2014 an MRI showed that the cancer is progressing. The brain tumor is enhancing with more active blood vessels and there appears to be a second lesion in the brain. On Jan 23, 2014 Nathan started off trial Everolimus daily then had to stop 2/8/14 due to complications. February 20, 2014 showed another spinal lesion on the T5-T6. On April 7, 2014 Nathan was able to get into the Phase II clinical trial of AZD6244 through Duke University which he is still on now. While there are many things that cancer does, there are many things that cancer cannot do:Cancer is so limitedYet in all these thingsIt cannot cripple love, it cannot alter hopeWe are more than conquerors through Him who loved us.It cannot corrode faith, it cannot destroy peaceFor I am persuaded that neither death nor life...It cannot kill friendship, it cannot suppress memoriesNor principalities, nor powers, nor things present, nor things to come, nor height or depthIt cannot silence courage, it cannot invade the soulNor any created thing shall be able to separate us from the love of God,It cannot steal eternal life, it cannot conquer the spiritWhich is in Christ Jesus our Lord. - Romans 8:37-39written by: anonymous
View Nathan's video at http://www.youtube.com/watch?v=UHfMIJsdssM

Latest Journal Update

Duke appt today

Home from Duke- ECHO went well. One area is a little abnormal but within what is considered acceptable. Talked to Dr G about the issues Nate is having. He thinks the leg pain and weakness that occurs off and on through the month are from the spinal cord tumors. The wooziness and headaches probably from the brain tumors. The fatigue he thinks is coming from both chemo and lung issues. Rashes and mouth ulcers probably just from the chemo. He was approved for his next 28 days worth of chemo. Next month we will have his MRI. Thank you for your continued prayers and support. Please continue to pray for comfort and healing;) No need to pray for joy because that sweet boy is full of joy that only God can give;)
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Comments

11 Comments

Michael Savage
By Michael Savage
Praying for Nathan and all the children each day. Nathan’s fight of this disease, and all the Normans lives and witness are an incredible example and inspiration to countless others. You are an inspiration to all of us.

I read this morning:

"You see, then, that we must not complain or run away in time of darkness, because out of the darkness is born the light...patience. And we come to learn perfection without even noticing it. We discover that we have become perfect in the midst of storms and temptations. And there is no other way one can ever arrive at the port of perfection.

I don’t want you to yield to weariness or confusion, no matter what may trouble your spirit. No, I want you to keep the good, holy, and true, faithful will that I know God in his mercy has given you...Humility comes from self-knowledge, and this charity from knowledge of God’s goodness. And there the soul becomes drunk and consumed with love.

Be glad, celebrate! Without any slavish fear, take courage. Don’t be afraid, no matter what happened, no matter what you see coming. Take courage, for perfection is very accessible. Answer the devil by telling him it is not my doing that virtue has been at work. It was the doing of God’s infinite compassion and mercy. So in Christ crucified you can do anything. Do everything you so with lively faith. And don’t be surprised at anything that might come along apparently in opposition to what you are doing".

- Caterina Benincasa

Patience, waiting. Waiting is very hard. But I have heard that waiting seems to belong to the heart of the spiritual life, but we want answers, direction, clarity – and we want them now. I desire to know what God is up to; I need my life to make sense – now.

Throughout this season we are waiting, but with active anticipation that God will move. The Psalmist had it right: “Wait for the Lord, take courage; be stouthearted, wait for the Lord!” (Ps 27:14).

I wish all a joyous and blessed Christmas. May the peace and love of the Holy Family be with you and your family for Christmas and each day in 2015.

God Bless

Erin and Mike
vada lyons
By Vada Lyons
Merry Christmas to you all! May God bless you and meet your every need. Love and Prayers, Vada
Kathleen Wilson
By Kathleen Wilson
Prayers for Nate his family and medical team.
Kathleen Wilson
By Kathleen Wilson
Prayers for Nate his family and medical team.
Kathleen Wilson
By Kathleen Wilson
Prayers for Nate his family and medical team.
Carol McDonald
By
I'm always praying for healing for Nathan and comfort for you all.
Connie Wolkowicz
By
keeping you all in our prayers...May the Lord wrap His loving arms around all of you!
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1 person hearted this
Linda Whitmore
By Linda Whitmore
Thinking of you all during the Christmas holidays. Hoping Nathan gets some relief with his ongoing medical issues.
Linda Whitmore
By
Thinking of you all during the Christmas holidays.Hope Nathan will get some relief from his ongoing medical issues.
BRENDA SIMS
By Brenda Sims
Hi Normans! Glad you got back home safely.