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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, April 18, 2008 Hello Friends,
We are busy busy busy at the Barnes house. Busy packing our things because we are MOVING. Praise the Lord. Our house is under contract. The first people who came to look at it after we listed it with a Realtor made an offer. We are scheduled to close on April 29. The renters living in our new home may be out as soon as this weekend. It is all working out in God’s time – not in mine. I have a hard time remembering that this is how it is always supposed to be.
You all know that I am a firm believer in the power of prayer. On Sunday March 16 at church I filled out a prayer request asking for the Lord’s blessing over the sell of our home. On Monday we got a call from one of the associate pastors telling us that our requests were being lifted up to God. That very same day the people who are buying the house came to look at it. It took them awhile to decide that they wanted to make an offer. We received the offer a week later. Please keep praying that all of this goes smoothly. We have packed up so much stuff. We have a POD in our driveway and I would hate to think that I would have to unload it somewhere other than the new house.
Of course, regular old everyday life keeps us pretty busy as well. Morgan seems to be seeing more doctors now than she has in a long time. She isn’t really having any problems; I am just trying to stay on top of everything. On March 20, we went back to the urologist for further testing. This was hard on Morgan. She had to be catharized and have her bladder filled up in order to see if there were any issues with pressure. She made it through the test like a champion and thankfully her bladder seems to be just fine. This is another reason to praise God because the chemo drugs she had have been known to do a number on children’s urinary system.
We were all off of work and school on Good Friday. I love holidays. We celebrated with a cookout at Mike and Ruffin’s house. The kids got to have an Easter egg hunt and we all had a terrific time. Ruffin’s sister, Brooke, has a little boy who was born very premature. It was amazing to witness Vann and Morgan hunting for Easter eggs when both of them are miracles. Of course, every child at the party is a miracle – even those of us who are adults now. But, neither Vann nor Morgan were given a very good prognosis and I am sure there were many doctors who did not think that either child would be with us on Easter of 2008. There surely were two little miracles in the backyard that day. And just from watching them, one could never imagine the struggles that both had endured. God is good – all the time.
We had a fabulous Easter and the kids had Spring Break the week after Easter. They did not get to enjoy it as much as last year’s Spring Break because I had to work. They had to go to daycare at their school on Tuesday, Wednesday and Thursday. Mom kept them on Monday and their daddy stayed home with them on Friday. I had Spring Break the next week while they were in school. It was nice to have some free time at home (especially with the move) but I was somewhat guilty that they were not home with me. That week made me really look forward to summer and having a whole two months to spend at home with my children.
On March 25 I took Morgan to see a doctor who specializes in Autism Spectrum Disorders. Dr. Hines specializes in looking at factors in a child’s environment, such as diet and allergies, to determine if measures can be taken to improve some of the Autistic symptoms. The appointment consisted of an evaluation and lots of blood work to determine what is going on in her body in terms of allergies and heavy metals, etc. Morgan decided prior to the appointment that she was no longer speaking to anyone that she did not already know. So now, I think Dr. Hines thinks that Morgan is more severely autistic than she actually is. She asked me how I communicated with a child who never spoke and I told her that Morgan is completely verbal. She just sort of nodded and gave me a “Yeah, sure she is” kind of look. She must think that I am in total denial about Morgan’s condition. I think she will be very surprised by Morgan when we go back – or she may not be if Morgan is still operating under that no speaking policy. The more I think about it, the less I feel like Morgan’s developmental issues are related to diet. As I have said before, I feel like Morgan’s was born with both Asperger’s and Neuroblastoma. She would have not had one without the other. Therefore, I am really not seeing that diet could really have much to do with it. Morgan will see Dr. Hines again in May and I will decide then whether or not this is something that I want to pursue.
We have changed Morgan’s medications yet again. We have taken her off of Stratera and put her on Concerta. She struggled in school during the time she was on Stratera and had a very hard time focusing. The Concerta seems to be working pretty well. We turned her meds management over to a psychiatrist, Dr. Hoover. Morgan met with her for the first time on April 3. Morgan had decided that she would speak to Dr. Hoover. Dr. Hoover seemed to doubt that Morgan even has Asperger’s disorder. Her impression was very different from that of Dr. Hines. Dr. Hoover believes that Morgan’s Asperger’s is borderline. We have heard this characterization from other psychologists as well. That’s what I love about my girl – she always keeps us guessing.
Morgan has another new doctor. Now she has a dermatologist too. She has always had eczema and is having a really bad flare up right now. It tends to be worse during the changing of the seasons. Those of you who live in NC know that sometimes we can go through all four seasons in one day. She has also developed a strange rash across her trunk and upper arms. It is a viral condition called Molluscum contagiosum.. To me, this sounds like some kind of spell that Harry Potter would try to place on Draco Malfoy. To quote the Mayoclinic.com, “ Molluscum contagiosum is a relatively common viral infection of the skin that most often affects children. It results in firm bumps (papules) that are painless and usually disappear within a year without treatment. If the papules are scratched or injured, the infection can spread to surrounding skin..” Right now we are treating the eczema and will worry about the other after the eczema is better. The doctor said that the medicines that treat molloscum contogiosum will make the eczema worse. The eczema itches and the molloscum does not bother her at all. In case you are wondering, Morgan was speaking the day we went to see the dermatologist and was able to clearly express her symptoms.
We received the results of Morgan’s blood work from the endocrinologist a few weeks ago. Her FSH test came back showing that she will probably have slow ovaries. We pretty much always knew this but now it has been confirmed. It is unlikely that she will be able to have children. We do not know if she will have normal menstruation cycles or not. I hope that if she can’t have children that she doesn’t. All of her other hormone levels were okay. She will see the endocrinologist again in about 6 months.
The kids received their third quarter report cards on April 2. Morgan’s grades were good. I think that she made a B in one subject and the rest A’s. This was the first B she had made in her core areas the entire year. I think this probably has something to do with the medication change. She seems to be back on focus now. Of course, grades really are not that big of a deal to me anyway. You would think that as a school counselor I would be more grade driven. But, I feel like that as long as she is learning then grades is pretty insignificant. Before Morgan was diagnosed with cancer, I used to find more importance in things like that. If a B or a C is the worst thing I have to worry about, then life is good. Morgan also got a D in handwriting. I have told her teacher numerous times that Morgan’s handwriting is what it is and will not get much better but oh well . . . She got an incomplete in Spanish. I would have liked to have known about this prior to report cards going home but again – oh well.
Holden’s report card was his best yet. He has matured so much. He has come a long way from that little boy who was going to yellow and red every day in preschool. We are very proud of him. He helps out so much with both of his sisters. Don’t tell the girls I said this, but he is definitely my easiest child. I have heard lots of mothers with sons say this. I think girls are much more high maintenance. All three of them are truly a gift from God. They are all uniquely and wonderfully made.
Holden is staying busy with soccer. He also loves building with his Legos. He is so excited about getting into the new house and having his own room. He has big plans for all of the Lego construction he is going to do when he does not have to worry about his space being invaded by one of his sisters.
Morgan and Holden have both recently become enamored with Webkinz. We now have some new members of our family that Morgan and Holden are taken care of in cyberspace. Morgan cares for Toffee, Montana, Lovelywillow, Bling Bling Girl, and Midori. (I hope that if Morgan is able to have children that she is picking more reasonable names by then). Holden’s pets are Chocolate Ball, Stripey, Golden, Brownie, and Morris. I am hoping that the kids will learn a little responsibility from taking care of their pets, but I find that on quite a few nights I am the one logging in to make sure all of the work is done. I kind of enjoy it though. Jerry keeps telling me that he is going to get me a Webkinz of my own but I assure him that I already have plenty to take care of. Webkinz may e the closest my kids ever come to owning a pet.
Lyndon is still a complete joy and a holy terror. She is by far the wildest of my three kids. This week her thing has been hitting her friends at school and not listening to the teachers. We have discussed this with her but she just is not taking us seriously but then again she rarely does. She is a neat kid and she make both Jerry and myself very tired by the end of each day. She can tell a lie like no one I have ever seen. It just comes so naturally for her. I think we will always continue to have our hands full with this girl. It was much easier to keep the other two in line. Maybe we are just too old and too tired now.
We are still working on that potty training thing. She will not have a school next year if she doesn’t get on the ball. Neither Jerry nor I can take Family Medical Leave to stay home with a kid who simply refuses to use the potty. You may remember that it took years to get Holden trained. I am expecting the same thing for Lyndon.
We received notice that Morgan and Holden will be able to go to our first choice of schools for next year. They will be at Southwest next year. They are both pretty excited but I think they are looking forward to riding the bus the most. They will ride the bus to Heather's house in the afternoon and I pick them up from there. Please pray that they will have a smooth transition back to public school. Of course, this still a bit up in the air because I am still trying to transfer to a school closer to our home. If that happens, then they will go to the elementary school that is closest to my new location. I am confident that God will put me exactly where he wants me to be. That is how He always operates.
Wow – pretty long update. Thanks so much for continuing to check in on Morgan and the rest of our family.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2)Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
In Him,
Allison
Read Journal History
Hospital Information: Memorial Sloan Kettering Cancer Center
New York, NY
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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