My Story
1/20/09 - surgery to resect part of the tumor (55%)
March 2009 - Aug 2010 chemo with Carboplatin
Oct 21, 2011 brain tumor progressed and one inside of the spinal cord (neuroglial)
10/31/11 Surgery to resect part of spinal cord tumor
Nov/Dec 2011 - March/April 2011 chemo with Vinblastine & biweekly Avastin
9/4/12 - brain and spinal cord tumor progresses
9/12/12 - started new chemo Temodar and Etoposide
10/11/12 - started Revlimid
http://www.youtube.com/watch?v=UHfMIJsdssM
We have 4 children: Sarah, who is 10 ; Matthew, who is 7; Nathan, who is 6 years old; and Tabitha, who is 3 year 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. While there are many things that cancer does, there are many things that cancer cannot do:
Cancer is so limited
Yet in all these things
It cannot cripple love, it cannot alter hope
We are more than conquerors through Him who loved us.
It cannot corrode faith, it cannot destroy peace
For I am persuaded that neither death nor life...
It cannot kill friendship, it cannot suppress memories
Nor principalities, nor powers, nor things present, nor things to come, nor height or depth
It cannot silence courage, it cannot invade the soul
Nor any created thing shall be able to separate us from the love of God,
It cannot steal eternal life, it cannot conquer the spirit
Which is in Christ Jesus our Lord. - Romans 8:37-39
written by: anonymous
Journal
June 13, 2013 9:20am
Since last update Nathan is healing very well from surgery. He had surgery on Friday and Nathan, Sarah, Matthew, and Tabitha got up early Saturday morning and helped Bobby and I go to our church and help out with clean up day for a few hours with everyone else who had come to help. We told Nathan just to sit back and rest but next thing you know he had Windex and paper towels scrubbing down the windows of the church bus with all the other kiddos.
Nathan’s rash finally went away on Saturday and so we started his 21 day course of his Revlimid. He had been doing really well with it but has been more fatigued since yesterday, still play but just a little more tired.
Sarah, Matthew and Tabitha are doing well. Sarah and Matt are enjoying the summer and most days getting along really well. Sarah is turning into quite an amazing young lady, so responsible and such a leader. Matthew is growing into such a smart, loving and funny young man. Tabitha is busy telling me she is not my baby but my big girl now. She is still having some unresolved health issues but we took her for more bloodwork this week and have ruled out several things and waiting for a few more tests to come back looking at tick borne illnesses. Glad for all the negative results on test but also hoping to find some answers.
All the kids are super excited because we leave Saturday for a week in Maine at Camp Sunshine (an oncology camp that we go to each year – www. Campsunshine.org). It is so great their because the kids are around other families who have a child with cancer and their siblings. There is such a bond that is formed with other families who have or are going through the same things you are.
Well our non-profit, Hope for Tomorrow, officially has a website: www.hope4tomorrow.org and a facebook page: www.facebook.com/hope4tomorrownow
We are so excited to be able to reach out to other families in need of support and also help in funding cutting edge research to help find treatments with less severe side effects and one day find a cure. We need lots of help and volunteers for various events. If interested in helping please visit our website and pass the information on to others.
1 Corinthians 1:3-5 “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.”
Please pray for other children that are struggling with cancer right now: Hannah I, Dylan F, Mary Catherine B, Ethan, Ella, Charlotte, Stella, Maci, Sarah N, Emaleigh, Ezra, Jackson, Cassidy, Kate, Hannah, Campbell, Momo, Issy, Marcello, Nathan T, Bayleigh, Tyler, Wesley, Edie, Noah, Tate, and many more. Please pray for the Bulich and Barcus family as they have two children battling cancer and the dad suddenly passed away this week. Please also pray for other children who are struggling with other health issues: MacKenzie, Harwoods, Jackson, Aaron, Holden, Corrine, Keira, Cayden, etc. Please also pray for Missy, battling Melanoma, and Stacy, as she is healing from surgery. Please also keep our friends the Sims in your prayers as they lost their daughter, Amaya. Please also pray for my mom, Lisa, who is home but still healing from being in the hospital as well as my stepmom, Susan, as she was in a car accident last week.
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