Morgan Barnes
Morgan Grace Barnes was born July 25, 1999 in Winston-Salem, North Carolina. She was always a very happy and independent child. Morgan never crawled; sometime around the age of nine months, she stood up and started walking. Morgan was talking well before she was a year old and had an incredible memory. Morgan is very strong-willed and is very quick to let everyone know her opinions, and has been this way since the day she was born.
Morgan's most favorite thing in the world is books. She used to sleep with books, not dolls or animals, piled up around her. She is very prissy and girlie. Right now, she is very much into the Disney Princesses, and Ariel, the Little Mermaid, is her favorite.
When It All Started
Our family was doing wonderful in July of 2002. Morgan would be turning three at the end of the month and our son, Holden, was a happy nine month old who had just learned to walk. Our only concern was that Morgan kept having these fevers that would come and go. She would feel terrible for about an hour or so, and then she would be fine. During the first three weeks of July, Morgan went to the doctor about five times and we were told that she simply had a virus.
On July 26, Morgan had her three year check-up and was given a clean bill of help. Her fevers had subsided so we were back to life as normal. On July 29, Morgan began limping. The next day, we kept her home from preschool and the pain only seemed to get more intense. She stopped walking altogether. On Wednesday, July 31, I took her back to the pediatrician and was told once again that she simply had a virus and was constipated. I took her home and watched her continue to get worse and worse. I called the pediatrician and told them that I thought she had an appendicitis and I would feel much better if I took her to the emergency room. We arrived in the ER around 5:00 pm on July 31 and were told that some of her symptoms were like an appendicitis, but not all of them. They wanted to do a CT scan just to check things out. I will never forget what the resident on call told us after the CT scan was perfored. He called us out of the exam room and said, "I've got good news -- Morgan does not have an appendicitis . . . there is a mass in her abdomen and someone will be here to talk with you about that in a little while."
Obviously, we did not view this with the same joy that he did and we knew that a mass in the abdomen was probably much worse than a simple appendicitis.
By 10:00 that evening, we received the final diagnosis. Morgan had Stage IV neuroblastoma, a very deadly childhood cancer. We were released from the hospital twelve days later. This first stay included surgery to remove the main tumor mass, various scans and tests, and the first of seven rounds of chemotherapy.
Our lives changed dramatically on July 31, 2002. We begin helping our daughter fight for her life. We began praying like we had never prayed before and giving glory to the Lord for every small and large miracle that occured in our lives.
On November 22, Morgan 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.
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Status: April 20, 2008
"...and pray for each other so that you may be healed.
The prayer of a righteous person is powerful and effective." James 5:16.
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.
God Bless,
The Barnes Family
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