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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

Nathan and Tabitha's test results

We finally got test results on Nathan and Tabitha. Nathan's MRI looked great! Dr G said the brain tumor enhancement has gone down even just since the July scan. The size of the tumor is the same but less blood supply means there is less feeding the tumor. The spine actually looks less enhanced as well as a little bit smaller. Praise the Lord!!! "Let us hold unswervingly to the hope we profess, for He who promised is faithful." - Hebrews 10:23 God has blessed us with wonderful caregivers at Duke, we are so thankful for Dr G and his staff and nurses. Nathan's nurses that work on him during his MRI's are amazing as well. We have a great team of people who work together for all these children. Please continue to pray that one day God would just remove the cancer completely or allow it to stay stable forever!!


Tabitha's appointment was mixed. On a positive note, we believe that it is not some sort of cancer that is causing her symptoms of fever and leg pains/headaches. On the other hand, we are back to the drawing board trying to figure out what is going on. We hate having to give her pain meds every day to function so we are working with the doctors to find out what is going on. We had a few issues with one of the doctors working with us today for Tabitha but Dr. Linardic is back working on what it could be and what the best treatment would be rather then constant pain killers. A few different doctors are still wondering if it is rheumatological or auto immune. She is suppose to contact us later this week with some different ideas. Our family doctor gave us a few ideas to try in the meantime to try and not have to constantly treat with ibuprofen.


We had a great weekend. We had the honor of going to DC for Curefest, which is put together by close to 100 pediatric cancer organizations where we all stand together with one voice to try and bring awareness and funding for pediatric cancer research. Our family, along with several other pediatric cancer families and organizers were able to tour the White House. We had a candlelight vigil Saturday night in front of the White House to Light Up the Night Gold in memory of those taken, honoring those battling and fighting for the kids yet to be diagnosed. Sunday was an honor to have Hope for Tomorrow (www.hope4tomorrow.org) stand with 76 other organizations at the National Mall to raise awareness for pediatric cancer. We won't stop fighting until there is a cure and treatments with less long term side effects.


Thank you for your continued prayers for our family. Please continue to pray for all of our other friends who are battling. We especially lift up Kaden, Cullen, Stella, Ethan, Nathan T, Cassidy, Kate, Yan, and all of the others that we name.
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Comments

15 Comments

Linda Whitmore
By Linda Whitmore
Glad Nathan is staying stable at this point. Glad you are trying to find out what is going on with Tabitha. Hope they find out what is going on. Thinking of you guys.
vada lyons
By Vada Lyons
Hi Nathan and family, So glad to hear the good reports. I'll be praying for the Dr.'s to identify the cause of Tabitha's pain and find a good treatment plan. I continue to pray that God will bring total healing and a cure. Enjoy this beautiful Fall weather. Love to you all, Miss Vada
Michelle Holloway
By The Holloway Family
Very happy for the great news for Mr. Nathan!!
Many continued prayers for Miss. Tabitha to get a firm answer to her pain.
Michael Savage
By Michael Savage
Psalm 17 (18)
Thanksgiving

(The word of the Lord is a shield for all who make him their refuge).

The Lord’s ways are pure;

  the words of the Lord are refined in the furnace;

  the Lord protects all who hope in him.

For what God is there, but our Lord?

  What help, but in the Lord our God?

God, who has wrapped me in his strength

  and set me on the perfect path,

who has made my feet like those of the deer,

  who has set me firm upon the heights,

who trains my hands for battle,

  teaches my arms to bend a bow of bronze.
(The word of the Lord is a shield for all who make him their refuge).
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Linda Snead
By Linda Snead
PRAISE GOD! Continuing to pray for your entire family!
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Ruth Gervat
By Ruth Gervat
PTL
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Bonnie Ermilio
By Bonnie Ermilio
I'm praying that everything stays stable with Nathan, but actually I'm praying for it all to go away! I'm sending LOTS of hugs and prayers to adorable Nathan.
I'm praying that the doctors will find out what's wrong with sweet Tabitha quickly and set a plan in motion for her.
I sending lots of love to all of you!
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Carol McDonald
By
I'm SO happy to hear about Nathan's MRI results. To God Be The Glory! I always pray that God will decide to totally heal his little body but I'm happy that the tumors are stable. I know it must be frustrating trying to figure out what's going on with Tabitha but I pray God will give the doctors wisdom in that also. So glad you had a good weekend! Praying for all the children with childhood cancer and for a cure!

Prayers always,
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Sarah Hamilton
By Sarah Hamilton
Great news for Nathan! May answers, a plan and relief for Miss Tabitha come soon!
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