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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 today



We went to Duke today for Nathan's port access, labs, and next round of clinical trial. His appointment went well. Our doctor thought he looked good. His labs were a little low, a little anemic and slightly low neutrophils. But otherwise he looked good. Nathan has been having a few issues over the past month with more tics and possibly some simple partial seizure activity again. We are not sure if the auras of light that he has been having are coming from seizure activity or our doctor said that there are migraines that have auras without having a headache so that may be it as well. Nathan was approved for his next 28 days of his clinical trial.


With each month he is on it we are one month closer to the trial being over. We started the trial in April 2014 and we have only 10 more cycles left so he should finish around April of 2016. The doctor said that once the trial is over if the current tumors start to grow more that Nathan can go back on the trial but he would have to wait at least 6 months after coming off treatment. Usually his cancer progresses within 4-6 months so we are praying it will stay stable for as long as possible. It is also uncertain whether he would respond as well a second time to the same medicine. So while all this thoughts can't help but to pop into my mind, I have resigned to focus on the fact that right now he feels good most days. Right now the cancer is there but not growing or spreading. Right now he talks about one day growing up to be a dad and a husband. Right now he tells me plans of his future to rescue animals and take care of them. God does not promise any one of us tomorrow but His gift to us is today so we laugh, play, and talk about the future and enjoy each moment. We continue to pray for a miracle for Nathan and all our friends and family battling. We remember that each day is a miracle and a gift. The Lord says in Joshua 1:9, "This is my command - be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go." God has given Nathan strength and courage, faith and generosity, love and joy that is immeasurable. God has given Sarah, Matthew, and Tabitha such loving, nurturing, compassionate spirits. They are Nathan's #1 fans and provide so much love and encouragement for their brother. Don't get me wrong, they are like any siblings, they laugh together and fight together but one thing never changes - their love for each other! We are so blessed to have each one of them.


As you 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, and so many other kids battling and Karla, Jeff, Andy, Lori, Grant, Tyler, my mom (Lisa), my Dad (Bobby) and other adults battling as well.
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Comments

6 Comments

Bonnie Ermilio
By Bonnie Ermilio
I'm praying that the trial will help Nathan and keep on helping him!. He such a sweet, adorable boy!!!! Nathan has a great family support group. You are all so wonderful! I hope Nathan has a good summer. He'll be getting something from me this month.
Lauren Lindgren
By Lauren Lindgren
Prayers for Nathan to do well on this trial and God to heal him completely from Cancer. I would like to suggest that Nathan visit an animal rescue. I am involved in rescue and I am sure any rescue would be honored for him to attend an adoption event. There are many rescues nationwide, and there should be one local to you.
Linda Whitmore
By Linda Whitmore
Thanks for the update. Glad Nathan is doing okay for now. Thinking of you guys
Carol McDonald
By Carol McDonald
I'm glad to hear the appointment went well and Nathan is still feeling fairly well and can continue the trial. Nathan and your family are an inspiration to so many. I'm continuing to pray that God will totally heal him.
Cindy Spear
By Cindy Spear
I love reading your posts. You are so honest and your faith shines through as a beacon of light. Love the pix with the post. God's miracles are new each day, and I'm praying for His healing touch for Nathan and your loved ones. May you be blessed and encouraged. You must certainly grow weary at times, but keep looking up to Jesus and rest in His promises. In Christ's love,
Chele C
By
Thank you for your faithful testimony, the faithful testimony of your whole family, and for sharing with all of us the goodness of the Lord and what it is like to trust Him wholly. I pray that each day He proves to be your Strength, your Joy, your Hope just as He always has been. Give Nathan, Sarah, Matthew and Tabitha hugs from this South Asian side of the world for me.