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.

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

Thursday, March 26, 2009

Hello Friends,

I guess I am not doing so well in keeping up to date with my updates. Perhaps I will try a new strategy. Maybe I can manage to do shorter updates more often. We shall see.

Morgan has been out of treatment for 3 years, 11 months, 1 week and 4 days. She is 2222 days post transplant. February 20 marked the 6 year anniversary of her transplant. God has blessed us for sure.

Morgan is doing okay. She is still active in dance class and piano. Academically, she is holding her own in school. Socially, she has peaks and valleys. Things have gotten a bit more difficult for her lately. It is hard for me to talk about because my biggest goal for her to be happy and healthy. Sometimes I try to ignore the fact that she has Asperger's Disorder and stick my head in the sand. But, the reality is that she DOES have Asperger's. She will ALWAYS be a bit off socially. Her biggest struggle seems to be dealing with her emotions. I wish there was a magic cure. It can be so frustrating for Jerry and me. Probably more frustrating than it is for Morgan. I know that God has big plans for her. But, in my human ignorance I just see the world as being a very difficult place for her. I don't want her hurt or to have to suffer anymore than she has already suffered.

With that being said, I wanted to share with you a sweet story about Morgan. I am copying an email that her teacher sent to me a few weeks ago.

Hi Mrs. Barnes!

I wanted to share with you about some great things that happened in our science class today.
I was reading aloud a reading selection about our bones and the disease scoliosis was mentioned. Morgan piped up and said, "I have that." I asked her if she would like to share this with the class. She got up from her seat and came to the front of the classroom and proceeded to tell the kids about her diagnosis! I was so proud of her!

I then asked her if she wanted to tell them about her diagnosis when whe was younger and she said yes and told them about her cancer. They were mesmerized by what she had to say. I continued to "feel her out" and asked if she was willing to answer questions they might have. She did beautifully! I wasn't sure if she was comfortable sharing these things with others or even if she had done this type of thing before, but I was beaming for her.
After she was finished, and had answered everyone's questions, I told the class that this information was Morgan's information and that if Morgan wanted others to know, she should be the one to tell them. (I didn't want her to feel like they might run and talk about her to others) The class responded favorably to this request and Morgan seemed pleased. I hope this is pleasing news to you and your husband, and not something that you wanted to keep in your family. The opportunity was there for Morgan to be able to express herself ...and in addition to that, I think she may have made a huge difference in how they might respond to others who have overcome obstacles.
She was able to share with them some of the things that they perhaps did not understand about the "after-affects" of her illness.

Again, I was so proud of her and just wanted to let you know!

I must admit that I always get nervous when I get emails from Morgan's teacher. My first thought is always "What has she done now". It was a blessing to know that she was able to openly talk about her experiences.

Holden is doing great. He is now taking Tae Kwon Do and seems to really enjoy it. I love the fact that there is an emphasis on focus and the instructors really encourage the students to do well in school and in daily life activities. Holden is doing well in school and all of his issues from the beginning of the year have worked themselves out. He improves daily in piano. Eventually, he would like to play the guitar.

Lyndon's behavior has also improved dramatically at school. No real problems since Christmas break except for one day that she was very tired from not sleeping well the night before. We are planning on sending her back to the same school next year. Lyndon is also dancing. The teacher says she talks too much in class, but to me that is not really a problem. I mean, they are dancing not doing calculus. She is three and talkative and if the teacher can't deal with it then I can find another dance studio that will gladly accept the monthly check I give them. Sorry to seem so negative but I have dealt and am dealing with much bigger issues and this is not even on my radar screen.

Next week will be Spring Break for the kids and me. Due to snow, we only get a three day break instead of the whole week. We are blessed that we get to attend a reunion with the Neuroblastoma Team and Patients in New York. We are all very excited. I am excited to see the wonderful doctors and nurses who treated Morgan and the families who were part of the journey with us. Morgan and Holden are excited about returning to New York. Morgan has big plans at the American Girl Store and Holden wants to hit the Pokemom (Nintendo) store. We are going to drive to NY and spend a little bit of time in Washington DC because Morgan is very much into history.

Mom continues to do well. I am very blessed to be the mother and daughter of cancer survivors.

May God bless you all!
Allison

Read Journal History

Hospital Information:

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

Links:

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

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