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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's Duke visits

Since last update, Nathan has been doing well. He felt bad a few days last week, with headaches and dizziness, but we think that was due to seasonal allergies. He saw Dr. G yesterday and had labwork to get his next 28 days worth of chemo. That appointment went well, next month is the MRI again before chemo refill. Today's visit to our Pulmonary Dr didn't go quite how we had hoped. Nathan's lungs have seemed to be doing great since last year's medicine change. It has been over a year since he has had pneumonia and had to be on steroids, so we were thinking today would be an easy breezy visit. However, that was not what his testing showed. Parts of his pulmonary functioning tests looked good, but there was one of his numbers (DLCO) which had gone down quite a bit since last visit. Dr. Green believes it is due to the clinical trial. He dropped from 96% to 81%. She said that as long as it does not drop below 75% we will just keep an eye on it. She wants to see him back in 6 months to recheck the numbers. If it drops further or other numbers start to drop she said they would need to order a CT to monitor his airway and check for possible fibrosis. At this point it is too imperative to keep him on the clinical trial since it is keeping his tumors stable and he is tolerating it so we both agree to just monitor his lungs for now. She said if things change between now and the next appointment and he begins to get fatigued often with normal activity then to come back before our next visit. If you would please remember Nathan in your prayers that his lungs would heal and he could continue on his clinical trial. And that if it is God's will that He would remove the cancer from Nathan's body.


Update on Tabitha: we still don't know what is going on. We are suppose to see the doctor again next week. They don't believe it is any sort of cancer we are dealing with but the doctors are still leaning more towards auto immune or rheumatological. Sarah and Matt are doing well. They are so great with all they have to go through with going back and forth to doctors and hospitals. The kids did great for Bobby while Nathan was in his appointment yesterday and they went with Nathan today to see the dr.


We have several friends that are in need of your prayers as well. Please pray for Cullen, Wesley, Cassidy, Ezra, Ethan, Stella, Nathan T, Yan, MC, Gracie, Micah, Kaden, Kaydon, Caroline, Jax, Jackson, Charlotte, Kye, Kate and so many more. Also, pray for my mom, Lisa McCormick. She has had ongoing health problems for over 15 years now. A recent MRI showed several enhancing lesions on her brain which they believe to be MS. She will be going to Duke on Nov 6 when we take Nathan back to see a specialist there.


In John 16:33 Jesus reminds us, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." Also in Joshua 1:9, "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." Nelson Mandela once said, "I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear."
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Comments

16 Comments

Michelle Holloway
By The Holloway Family
Always in our hearts and prayers~never doubt that! Big Hugs and Love for EACH of you!! xxooxxoo
Valerie Keller
By
Continued prays from the Keller Family. Strength and courage for all of you.
Carol McDonald
By Carol McDonald
I'm glad to hear that Nathan is doing well other than the lung issues. He's such a special little boy, I always pray that God will totally heal his little body but I'll specifically pray for the lung issue, for Tabitha, and the others, including Linda.
Cindy Sparrow
By Cindy Sparrow
You all are in my thoughts and prayers.
Laura Rowland
By Laura Rowland
Prayers for Nathan,Tabitha and your family
Lela Marshall
By Lela Marshall
Dear Normans -
We continue in prayer for you. I miss you all.
Num 6:24The Lord bless thee, and keep thee: 25The Lord make his face shine upon thee, and be gracious unto thee: 26The Lord lift up his countenance upon thee, and give thee peace.
Cindy Spear
By Cindy Spear
Thank you for the update. Still praying for Nathan and Tabitha and the entire family…as well as your other prayer requests. I'm believing God, that He will meet your every need. He is with you…with us. May you be blessed and our prayers be lifted up through our great Intercessor, the Lord Jesus Christ, to the throne of grace where our Father will hear from on high. May His loving hands bring healing miracles. In Jesus' name I pray, amen.
Connie Wolkowicz
By
We continue to pray for Tabitha and Nathan. praise the Lord that the tumors are being held at bay and we will pray for his breathing/throat etc that the Lord will keep it all clear so that he can stay on the meds. Anxious to see how the Lord will continue to work and bless with Nathan and Tabitha!
nola watson
By nola watson
Praying for Nathan and his siblings and praying for all those listed, including your mom. Keep the faith!
Thea Jarvis
By Thea Jarvis
Thank you for this uplifting update! You are working so hard for your family and it is an inspiration to read your sharings. We pray for Nathan each day and will be especially mindful of his lungs at this time. May his body continue to strengthen and heal. And may Tabitha heal and strengthen as well. Blessings!