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

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So we have some good news and some news that needs prayer. The MRI scans look stable. The one tumor in the spine that is smaller they still don't see however they do you see the other larger tumor but it is stable in size so the cancer has not grow. The main brain tumor is still stable (cancer there but not growing). The area in the cervical spine that they noted on the last scan, they still are watching. It showed up this time as well and they are hoping that it is just what they call artifact but they will continue to keep an eye on it. The ECHO of his heart looked fine.


On the flip side, Nathan's lung function is continuing to decrease so his pulmonary doctor suspects he may be developing fibrosis in his lungs which will definitely affect his ability to stay on this treatment without other measures being taken. We are going to start having to have his lung function checked monthly rather than ever 4-6 months. We really don't want to have to come off treatment so we are praying his lungs stabilize. Please pray for his lung functioning to stop decreasing and level out. Thank you for your continued prayers for our family. "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."(‭Philippians‬ ‭4‬:‭6-7‬ NIV)


Tabitha also saw the rheumatologist while we were at Duke. He does not feel like it is rheumatoid arthritis. He still cannot rule lupus out but said she would be one of his youngest patients with it. We don't have any answers for the fever, rashes or kidney issues/lab work. He feels like the joint pain is coming from her having extreme hyper-mobility in her legs and hips. He wants her to see a physical therapist again to help build some core muscles to see if that will help with joint pain.


Please continue to pray for the Harris family whose little boy went to be with Jesus this week after battling brain cancer. Please continue to pray for others fighting cancer and other serious health issues: Stella, Ella, Cassidy, Micah, Wesley, Yan, Ethan, Jaxson, Nathan T, Caroline, Ezra, Kate, Kaydon B, Jackson T, Jeff H. and so many other kids battling and adults as well.
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8 Comments

Carra Kumpe
By Carra Kumpe — last edited
Saw a very interesting article about Duke Cancer Research on 60 Minutes tonight on using Polio Virus to kill Glioblastoma in clinical trials. I'm sure you know all about this but am praying this can be used on Nathan. We are fighting our own battle with bone cancer. My son (50) was diagnosed last Oct with 4th stage bone cancer caused because they did no treatment after removing a golf ball sized tumor, his right kidney and adrenal gland 3 years ago. He had a lesion removed from his brain by by Cyber knife and 2 large tumors removed from his upper left leg bone. followed by 2 rounds of radiation. He still has one in the lower leg and spots they are watching in his lung. He will be part of a clinical study at Johns Hopkins beginning in May. Drs said he is healthy as a horse except he has cancer. He has a wife and 3 little kids. We feel confident that God will allow him to see his kids grow up and has a real ministry for his life. Feels good most of the time. Just want you to know I still pray for all of your family. Sorry so much is about my family but wanted you to know. Just thought of something. Would your kids like to ride a motorcycle with very competent riders? Let me know if they do. I think he can arrange that and would love to do so.
Michelle Holloway
By The Holloway Family, Liberty, NY
Praying for all~love and gentle hugs.
Laura Rowland
By
Sending Prayers for Nathan and Tabitha and all the other children battling cancer.
Connie Wolkowicz
By Connie
Amazing. I was just praying for Nathan about three hours ago. Will definitely be praying for his lungs to clear so that he can continue meds
vada lyons
By Vada Lyons
Hi Nathan Family, Wow what about all this winter weather. I've enjoyed it all. I'm sorry to hear of this little one leaving his family to go be with our Lord. I'll be praying for his family. I'm also praying Nathan that your lungs will get better and improve soon. We're so thankful to our Lord for the stability of the other tumors. We love you guys and miss seeing you. Enjoy the winter it'll be Spring soon!!!
kim whitmer
By Kim Whitmer
Continued prayers!!
Carol McDonald
By Carol McDonald
I'm glad the tumors are still stable. I'll definitely pray for the lung function and that he can continue the treatments. I also pray that the Lord will totally heal his little body and bless him with a long, healthy life on earth! I'll also pray for the Harris family and all the other children. I wish there was more I could do.
Bonnie Ermilio
By Bonnie Ermilio
I'm sending LOTS of hugs and prayers to Nathan to all the things you asked for. Is Tabitha Nathan's sister and if she is how old is she? I hope things go well for her too!