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Morgan Grace Barnes


Morgan was born July 25, 1999. She has always been a very happy and independent child.
A few days after her third birthday, she started having difficulty walking. On July 31, 2002, she was taken to the emergency room because we thought she had an appendicitis. Later that evening, we were informed that she has Stage IV Neuroblastoma, a cancer that strikes young children.
She had her first surgery on August 2 and the main tumor was successfully removed. On November 22, she had a second surgery to remove the residual lymph node involvement and the surgeon was able to remove 99% of what he set out to get.
On January 9, 2003 Morgan completed the last of seven rounds of highly intensive chemotherapy.
On February 20, 2003 Morgan underwent an autologous stem cell (bone marrow) transplant at Duke University Medical Center.
Morgan's treatment protocol required that she receive twelve doses of radiation to the site of the main tumor mass. She completed her radiation treatments on May 13, 2003.
Morgan started receiving treatment at Memorial Sloan-Kettering Cancer Center in New York City on April 14, 2003. She is participating in a Clinical Trial (3F8 Monoclonal Antibody Treatment with GM-CSF) in hopes of ridding her body of this horrible disease forever.
Morgan completed her final cycle of 3F8 on April 15, 2005. Morgan was in active treatment for 2 years, 8 months, and 15 days.

Once the cancer treatment ended, we learned that Morgan has Asperger's Syndrome, a form of autism. She also has scoliosis.

This page has two purposes. The first is for our friends and family to get regular updates on Morgan's progress. The second is to give glory to the Lord for healing that He has performed in Morgan's body.

Journal

Monday, May 17, 2010

Well, it has only been four months since my last update. Yes, I am still slack. But you must also keep in mind that I have three very active children. I am blessed beyond measure.

It has been awhile since I have put in one of my timelines so here we go:

  • 7 years, 9 months, 18 days since Morgan was diagosed.
  • 7 years, 2 months, 28 days since Morgan's stem cell transplant
  • 7 years, 1 month, 9 days since we found out that Morgan still had disease in her bone marrow and we thought we were at the beginning of the end.
  • 7 years, 1 month, 4 days from her first 3F8 treatment at Memorial Sloan Kettering Cancer Center.
  • 7 years and 23 days since we found out that 3F8 cleared her bone marrow. Declared "No Evidence of Disease".
  • 5 years, 1 month, 3 days since her last 3F8 treatment.


      Morgan is gearing up for EOG's. They start tomorrow. I am certain she will blow the reading test away. She loves reading and can be entertained by even the most boring articles. Most kids complain that the EOG reading selections are boring. Morgan actually likes them and in the past has done pretty well on the reading test.

      Math is another story. Unfortunately, she gets her math skills from me and not her father. She can actually do the math, but she prefers to rush through as if there is some sort of prize for being the first person finished. I have told her that the only prize she could get for that is a trip to summer school. Last year, she did fine on both tests but I am nervous. We shall see.

      Holden is doing awesome in school. He made Honor Roll last quarter and is reading the 5th Harry Potter book. He started reading the series in November so he definitely has the same love of reading that I once had before I had three kids, a dog, a husband, a full time job and all of the other things that keep me from reading. If I try to sit down and read now I am asleep before I get to the end of the first page.

      Holden earned his blue belt in tae kwon do two months ago. He will probably be testing again soon. With the next belt, he will be halfway to black belt.

      Lyndon is all signed up for kindergarten. I can't believe it. I must admit that I am excited by the benefit it will bring to my pocketbook. She sang at church yesterday with preschool choir. It was kind of bittersweet for me because that will be the last time one of my kids sings with the preschool choir. The next time they perfom, Lyndon will be in kindergarten. I guess I can no longer categorize myself as a mother of young children. I guess that makes me no longer young as well.

      I felt compelled to update again because it seems that neuroblastoma is rearing its ugly head in our community once again. It seems like I go for months without hearing of any new diagnoses and then kids will just start popping up. Just today I received an email from an old friend. A friend of a friend has a daughter with NB. I also met another NB mother at the Brenner Spring Fling about a month ago. It has always been my goal to keep Morgan's story out there to provide hope for other families. It sometimes hard to find survivor stories when talking about neuroblastoma. I know of lots of survivors. But, I also know that these families move on with their lives and updating Caringbridge pages takes a backseat to the normal routines of daily life.

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      Hospital Information:

      Brenner Childrens Hospital
      Wake Forest University Baptist Medical Center
      Winston Salen NC

      Links:

      http://quiltsoflove.com/quilt/morganB/morganB.html   Morgan's Quilt
      http://www.geocities.com/jerry_m_barnes   More Pictures
      http://www.patswebgraphics.com/   Personalized borders


 
 

E-mail Author: allisonbarnes@triad.rr.com

 
 

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