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In Honor of Nathan Charles

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Nathan Charles’s Story

We have 4 children: Sarah, who is 12; Matthew, who is 9; Nathan, who is 8 years old; and Tabitha, who is 5 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

Nathan had several appointments today and results were mixed. He had labs and got his next 28 days worth of chemo. Last month they had increased his night time chemo by 5 mg and since he has done so well they are leaving the increase as is. So now he takes the same dosage in the morning and evening. Next month he will have his MRI of the brain and spine to check on the cancer as well as an ECHO to make sure his heart is not being affected by his trial medicine.




Then he had pulmonary functioning tests, which showed mixed results on his lungs. Some results which had been low have improved but other results that were great have now decreased. They have increased one of Nathan's preventative inhalers and will continue to keep and eye on his numbers.




Since last update we have really been enjoying our summer. Our family had the opportunity to serve through a missions trip in our church in the inner city where we live. It was so neat to see all of the kids serving and loving others as we ministered in the community by practically serving and showing the love of Jesus Christ. Sarah, Matthew, Nathan and Tabitha really enjoying being able to serve others.




The kids also had fun participating in horse camp (Sarah was a leader, but the others were participants). We have enjoyed spending time with old friends and making new friends this summer and just enjoying the moments.




Last week we had the privilege to go to Lighthouse Family Retreat in Emerald Isle, NC which is a retreat for pediatric cancer families. It was so great meeting such amazing families and volunteers. To see all the hope and strength that these families have is wonderful.




Today we ended our summer vacation and started back to school. Since we homeschool our schedule is pretty flexible so we like to end school the first part of Spring. It is great though because we have the flexibility to switch our work around if we have any end of the summer fun we want to do before Fall gets here. We just try and find joy in as many moments as we can, even the mundane.




As you continue to pray for Nathan, please continue to pray for these children battling cancer or other serious illnesses: Stella, Ella, Cassidy, Micah, Wesley, Yan, Ethan, Jaxson, Nathan T, Noel, Caroline, Ezra, Kate, Kaydon B, Layla, Jackson T, Hudson, Melanie, Vera, Ryan, Harwood family, Ayla, Reese, Tristen, Annika, Baylee and so many other kids battling and Karla, Jeff, Andy, Lori, Grant, Tyler, Amber, my mom (Lisa), my Dad (Bobby) and other adults battling cancer and serious diseases as well.




Hope in Jesus is what has gotten us this far in our journey and what gets us through each day. This morning's devotion from Jesus Calling by Sarah Young was all about our hope.




July 27




Hope is a golden cord connecting you to heaven. This cord helps you hold your head up high, even when multiple trials are buffeting you. I never leave your side, and I never let go of your hand. But without the cord of hope, your head may slump and your feet may shuffle as you journey uphill with Me. Hope lifts your perspective from your weary feet to the glorious view you can see from the high road. You are reminded that the road we’re traveling together is ultimately a highway to heaven. When you consider this radiant destination, the roughness or smoothness of the road ahead becomes much less significant. I am training you to hold in your heart a dual focus: My continual Presence and the hope of heaven.




Be joyful in hope, patient in affliction, faithful in prayer.


—Romans 12:12




But since we belong to the day, let us be self-controlled, putting on faith and love as a breastplate, and the hope of salvation as a helmet.


—1 Thessalonians 5:8




God did this so that, by two unchangeable things in which it is impossible for God to lie, we who have fled to take hold of the hope offered to us may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain.


—Hebrews 6:18–19
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Comments

4 Comments

Bonnie West
By Bonnie West
Keeping Nathan and your family in my thoughts and prayers!
Linda Snead
By
Will continue to pray for Nathan as well as the family and others, including the medical teams. May GOD continue to bless you and yours.
Thea Jarvis
By Thea Jarvis
Grateful for the good news and trust that additional meds will straighten out Nathan's pulmonary issues. Praising God for healing and blessing Nathan and your beautiful family.
Valerie Keller
By Valerie Keller
I love you post! Thank you and blessings