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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.
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
Friday, August 1, 2008 Hello Friends,
August 1. I vividly remember waking up on August 1, 2002. I opened my eyes and realized I was in a strange place. I remember being very tired because sleep did not come easy for me the night before. The thought crossed my mind that I had had a terrible dream the night before and I was relieved that it was over. As I gathered my bearings, I realized that I was in a hospital room. The words rushed into my brain “Is she going to die.?” Suddenly I remembered it all and I felt nauseated. My precious daughter who had just celebrated her third birthday a week before had cancer. Not only did she have cancer, but I would soon learn that she had one of the most horrible types of childhood cancer. Her prognosis was not good. In the back of my mind I tried to prepare myself for that horrible realization that yes she was probably going to die.
By the Lord's miracle, she did not die. God showed favor to our family and allowed Morgan to be here with me on August 1, 2008. I think back to all of those families that I have met along the way who no longer have their children with them. I know that I am blessed, but survivor's guilt is a real thing. God has a plan for Morgan. I think now about Carl, Jake, Harrison, Anthony, Sophia, Carter, Jonathan, Jessica, James, Christi, Lillie, and so many others who were taken from this world by a monster called neuroblastoma. Morgan truly beat the odds. Sometimes it overwhelms me to think of just how high the statistics were stacked against her. Of course, we did not know that on August 1, 2002. But we sure do know it now. Someone sent me a link to a segment that was on the Australian 60 Minutes about neuroblastoma. If you want to watch it, copy and paste this link into your browser: http://www.sixtyminutes.ninemsn.com.au/article.aspx?id=598911 There will be a commercial on first and then the segment will start. Listen carefully to the statistics on neuroblastoma. After you watch it say a prayer for all of the families whose lives have been devastated by this diagnosis.
Okay, back to the present. I am in shock that it is the first day of the month and I am actually doing an update. But, this is a rather poignant day for our family so I wanted to make sure I posted today. Six years ago yesterday, Morgan was diagnosed with cancer. She has now been off treatment for 3 years, 3 months, 2 weeks, and 3 days. She is 1987 days post transplant. On August 14, she will be 2000 days post transplant.
Summer is winding down for us. I can't believe that in 17 days I will be back at work. I love summer but it is always kind of nice when the real world resumes and everyone gets back on normal schedules. July was a terrific month for us. Her are some of the highlights:
On July 5, we headed out to Ocean Isle, NC for a family vacation. It was one of the most wonderful vacations we have ever had. My parents, my brother and his family, and us shared a four bedroom home for one week. It was so relaxing and so nice to get away. To be honest, when we headed out I was not sure how it would go but about three days into the trip we started discussing doing it again next year. The kids particularly enjoyed it because they got to spend some quality time with their cousins, Smith and Rachel.
On July 16, Morgan had an appointment with Dr. Casetellino, the late effects specialist at Brenner. It was a fairly routine visit. Labs were drawn and her urine was checked. No news is good news so I am assuming that everything was fine. Dr. Castellino wants Morgan to participate in a clinical trial for cancer survivors who exhibit ADHD characteristics. There is a non-stimulant medication that has been used with a lot of success in brain tumor kids and now they want to try it in kids who have had other types of cancer.
On July 19, we celebrated Lyndon's third birthday. We had a party here at the house with our families and the McLeods, who may as well be family. The McLeods brought a big inflatable water slide that kept the kids entertained for hours.
Morgan had an appointment with the dermatologist on July 24. She has always had eczema and she has recently developed another viral skin condition. Her eczema is not really that bad this time of year and the virus has improved dramatically. This was a blessing because we were told that it would be painful for Morgan to treat those spots. Therefore, she no longer needs to be seen by the dermatologist on a regular basis.
On July 24, Morgan and Holden started piano lessons. I have found a great teacher close by. Her younger brother has Asperger's disorder so she works really well with Morgan. They have gone twice and both kids seem to really be enjoying it.
Morgan's 9th birthday was July 25. On July 26, we had a very small party at Build a Bear.
July 26 was also our 11th anniversary. We had a nice dinner at one of our favorite restaurants and then went to Target to look around. I love Target but usually it is no fun to go there with the kids in tow so we took of advantage of the fact they were with Grandma and Papa.
On July 29, I took all three kids to the dentist. Morgan had no cavities but she has been referred to the orthodontist due to her mouth being very crowded. Holden had a cavity that had to be filled the next day. It has been a big month for him in the dental department because he recently lost one of his top front teeth and the other one is lose and will probably come out soon. Lyndon's teeth were fine.
Today Morgan had her annual hearing test. Once again her hearing has not changed over the last year. This is great news because it means the Morgan no longer needs annual hearing tests. If is very unlikely that the chemo can cause any further damage to her ears because it has been so long since she has had chemo. So we have gotten rid of two regular doctors this month.
And now for an update on my mom. She goes to radiation 5 days a week for total breast radiation. Right now she doesn't report too many side effects from the radiation but she has been told that she will feel increasingly tired the more cycles of radiation she has. She should be finished with radiation around the end of August. Please pray that this will continue to go well for her and these radiation treatments will be the last type of treatment she ever has to have for her cancer.
The work on the bathroom is now complete. It is nice to have that shower up and running. Now we have to save our pennies until we can get the other bathroom redone. My next immediate project is to have some updating done in the kitchen and to paint Lyndon's room. Jerry wants to wait until football season to paint because he wants to watch games while he paints. I guess we can do that since football season is right around the corner.
I wanted to say a big thank you to those of you who have stuck by us for the last 6 years. We would never have made it without your love, support and prayers. May God bless you all!
Prayer Requests:
1)Ask the Lord to never again allow cancer to grow in Morgan’s body.
2)Pray for healing for my mother, Vicky Morgan, to beat breast cancer.
3)Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
In Him,
Allison
Read Journal History
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
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