|
||||||||||||
Click here to go back to the main page.
Click here to view older journal entries.
Monday, January 18, 2010
Hello Friends,
Once again I have been very slack about updating Morgan's page, but once again there is not really a lot going on to report. Life is NORMAL, NORMAL, NORMAL. I really should be better about updating the page though just to give hope to all of the families that are still in the fight.
It is so hard to believe that 7 years ago at this time we were gearing up to head to Duke for transplant. Life was so uncertain then. Morgan was so fragile.
We had a wonderful Christmas and quietly rang in the New Year here at home. We enjoyed a huge snowfall (at least for NC standards).
Morgan is still dancing away. She is taking ballet and jazz. She also dances with Children's Dance Theater. Unfortunately, two of their last performances were canceled due to all the snow. She is excelling at piano and even though sometimes it is a struggle to get her to practice I really think she enjoys it.
Holden has recently earned his blue stripe belt in Tae Kwon Do. He especially loves going to sparring class. He is also doing quite well at the piano but it is even harder to get him to practice than it is Morgan.
Lyndon also dances and really enjoys her days with Hannah, my friend who keeps her. Hannah has a daughter the same age as Lyndon and the girls really have a ball together. Next month I will go register Lyndon for kindergarten. It is hard to believe it is already time for that but to be honest I am really looking forward to the savings that having no children in daycare will bring. I think I have been paying someone to care for one or more of my children for the last 11 years. It will be like getting a raise each month.
Once again I can honestly say that Neuroblastoma seldom crosses our minds anymore. In fact, I think it is time for Morgan to visit the oncologist but I will need to check my calendar. It is hard to believe that at one time our lives revolved around making trips to various hospitals to see various oncologists now we are consumed with homework, home improvements, dance class, piano, grocery shopping, and all of the things that I thought would never been able to do in 2002.
God is good, all the time!!
God Bless,
Allison
Tuesday, October 13, 2009
Oh my! Am I slack or what? It has been way too many months since I updated. Life is good, God is good, our family is SO blessed.
Morgan is currently loving school. Her teacher is awesome and Morgan is happy. She has a friend who calls her in the evenings. I have no idea what they talk about but it is so cute when Morgan's phone rings and she takes off to answer it. My girl is really growing up.
Holden also has a wonderful teacher. Thankfully, he has just recently discovered the joys of reading. I used to have to beg him to read but he has finished 3 chapter books in the last 2 days. He recently earned his green belt in Tae Kwon Do.
Lyndon is still a free spirit. So much so that Jerry and I made the decision to pull her out of her preschool. She was just not conforming to their rules. A family friend is now caring for and homeschooling Lyndon. It is the most wonderful arrangement.
Both of the girls are dancing. Morgan and Holden are taking piano. Holden stays busy with Tae Kwon Do. Neuroblastoma rarely crosses our minds anymore. God has brought us to a place that I never thought we would come to back in 2002. How could we ask for more?
Friday, July 17, 2009
Hello Friends,
Can you believe it? Another update in a week. I just wanted to post something to let everyone know that Morgan met with her orthopedist today. They took another x-ray of her spine to check her scoliosis. This time, they took the picture with her using a "lift". A lift is padding that is placed under her foot that compensates for the difference in length between her two legs. The lift really helped to improve the curve in Morgan's spine. So, our next course of action is for Morgan to be fitted with a permanent lift that she will wear in her shoe. The doctor describes this a relatively easy fix for Morgan and Morgan was pleased about the fact that she will not have to wear a brace or need surgery. We go next week to have her fitted for the lift.
After we left that appointment, I took Morgan to the iCan House. This is a gathering place for kids on the autism spectrum. They have a social group that meets once a week. Morgan is going to join the group. After today's visit, Morgan is excited about the prospect of returning. I am excited about the fact that there is another girl in the group. Usually when Morgan does things like this she is the only girl there.
I hope everyone has a good weekend. We will be celebrating this weekend. Lyndon's fourth birthday is Sunday. I can't believe my baby is almost four.
God Bless,
Allison
Tuesday, July 14, 2009
Hello Friends,
I guess from my last update you know that we are all still alive and doing well. But, the truth is that when life is as normal as ours is, then there really is not much to do an update about. But, I am doing this update to provide HOPE for any families that may be out there wondering if it is possible to survive as Stage IV Neuroblastoma diagnosis. Well, it is. God has truly blessed our family and we thank Him everyday for his goodness.
Morgan has been off treatment for 4 years and 3 months. She is 2230 days post transplant. The 7 year anniversary of her diagnosis is quickly approaching. I can't believe it has been that long. I also can't believe that neuroblastoma hardly crosses my mind anymore. God is good -- all the time.
Since my last update, Morgan has:
Holden has:
Lyndon has:
Other highlights:
As you can see, life is good and things are normal. Mom's health is good too, which is another blessing to our family. Thanks for continuing to follow our story.
In Him,
Allison
Sunday, July 12, 2009
Hello Friends,
Apparently some people (Vicky and Heather) are concerned about the fact that there has been no update in a very long time. We are on our way out the door to church right at the moment, but I promise an update is coming soon.
Morgan and her brother and sister are doing great.
More details to follow.
Love,
Allison
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
Sunday, January 18, 2009
Hello Friends,
Happy New Year! I realize that the month of January is almost over so I thought it would be a good time to update the page. Plus, there are a few things going on that I want to share.
Morgan has now been off treatment for 3 years, 9 months, 4 weeks, and 5 days. She is 2155 days post transplant.
We had a wonderful Christmas. In fact, the whole month of December was terrific. We had our fair share of Christmas parties and were able to spend lots of quality time with the people that we love. It is always a blessing to be able to devote time to honoring the birth of our Lord and Savior, Jesus Christ.
This past Wednesday, Morgan had her appointment with Dr. Castellino. Dr. Castellino is the late effects oncologist at Brenner Children's Hospital. Morgan has to see her every six months. She is very thorough and that is a good thing. Morgan had to have a heart studies done and the good news is that her heart is still in really good shape. Morgan's blood counts were also good. Morgan had a bone age study done and her bone growth is 2 years ahead of where it should be. This is not enough of a discrepancy that the endocrinologist will want to do anything different. Morgan will see him again in March. Morgan also had a urine test done. Neuroblastoma can be detected in the urine. We will probably have these results back by the end of this week.
Now for the bad news, Morgan has scoliosis. Scoliosis is not that uncommon in children who have had cancer. It has a lot to do with receiving radiation. Plus, if you recall, Morgan fell and broke her leg back in October 2003. She had a rather insignificant fall and broke her right femur. At that time, her doctors were concerned that he bone may be fragile due to a cancerous lesion. So the decision was made to fix her leg with a steel rod and and do a biopsy of the bone. Well, thankfuly the broken bone was JUST a broken bone. But that steel rod has caused her right leg to be slightly longer than her left leg. I am sure that is also a contributing factor to the scoliosis. Morgan's spinal curve is at about 21 degrees. From the research that I have done, it seems that she will probably need to wear a brace. Of course, we have not yet met with the orthopedist so I am not exactly sure what will happen.
On one hand, this diagnosis is not that big of a deal. I mean, compared to neuroblastoma, scoliosis is rather insignificant. But on the other hand, I am once again wondering when things are going to get easy for her. She is 9 years old and has already faced a very deadly form of cancer, ADHD, Asperger's Disorder, and now scoliosis. I am grateful that she is alive but it is easy to get bogged down in everything about her life that has not been perfect.
Today at chuch was sang “Amazing Grace”. When Morgan was a tiny baby, I would sing that song to her whenever she was fussy. I always felt in my heart that Morgan would be touched by the Grace of God. Well, she has been. But, I must admit that I got a little teary eyed at church because I thought back to the days when Morgan was an infant; before we knew that she was going to have to endure so many issues. I assumed that I had a healthy little girl and now looking back on her life, it makes me sad in many ways.
My main prayer request for this situation is that Morgan's back can be healed without her having to endure any surgeries. She has already had so many that I really hope she does not have to have any more.
Okay enough feeling sorry for myself. And, just in case you are wondering. Morgan is taking all of this in stride. I bet she has not spent more than 30 seconds this week thinking about scoliosis. And, she has not felt sorry for herself. Morgan knows she is blessed and she really does always hold onto that fact.
In other news, Morgan is still doing cheerleading and I am still coaching. I think the season ends in February. Morgan is not that crazy about it so I am not expecting her to want to sign up again next year. Morgan is also dancing and getting excited that they will begin preparing for the recital soon. Of all of her activities, Morgan is probably the most talented in the piano. She has caught on rather quickly and will occasionally compose her own songs. I must say that for a 9 year old, she really does a good job. I hope she will continue with her love of music. She says that she wants to learn to play the guitar and the violin next.
Holden is getting better and better at basketball. In fact, he is much better than either Jerry or I expected. He is enjoying playing and will probably want to play again in the summer. I am not sure what he will ask to do next. Tomorrow night he is planning on going to Tae Kwon Do with his friend so he may come home from that wanting to enroll in classes. We shall see. He is continuing to play the piano even though he hates to practice he does okay.
I finally got the paperwork for Holden's speech evaluation and completed it. However, I have not heard anything about it yet. So obviously, he is not receiving any services. Now I understand why parents get so frustrated with our school system.
Lyndon seems to be calming down some. Since she returned to school after Christmas break, I have not received any notes about her behavior. I figure she has either improved or the teacher just got tired of writing notes. I will take it either way. She is still dancing as well. In fact, she often gets irritated on Fridays because Morgan gets to go to dance and she doesn't. Her dance night is Tuesday.
My mother is doing great. She had a mammogram in December and the results came back in her favor.
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
Wednesday, November 19, 2008
Hello Friends,
YIKES! It is November 18. It has been awhile since my last update. I guess I could give the same old excuses once again. But honestly, life is very normal right now. Sometimes it is hard to sit down and just type about the normalcy of it all. I have to keep reminding myself that occasionally a new neuroblastoma family may come across this website and I think it can provide some hope to those who are simply looking for reaffirmation that it is possible to survive a neuroblastoma diagnosis. So, I will continue to update and once again I will try to promise that I will be more frequent in doing so. Plus, I hope that someday Morgan is able to use all of these journal postings as a great reminder of how great God is.
Morgan has now been totally off treatment for three years, seven months, and four days. She is 2095 days post transplant. We are blessed beyond measure.
Morgan and Holden seem to have made the transition to public school smoothly. In fact, things are going better than I expected. They both are very happy and like their teachers. Report cards were sent home last week and both kids are progressing nicely academically as well. Morgan had all B’s except for one C in writing. The teacher announced at a curriculum night that we could expect to see a C in writing. As a former teacher, I really don’t like that point of view but I decided not to say anything about it. Morgan asked me if it was okay for her to get a C. I asked her if she did her best and she said yes. So I assured her that I was pleased. The last thing in the world I want to do is to become one of those mothers who puts more emphasis on grades than on actually learning. Morgan is a exceptional writer because it is something that she enjoys doing in her spare time. I certainly don’t want to stifle her creativity by making her think that I am not pleased. Morgan also had perfect attendance, although the school messed up and showed that she had one unexcused absence on her report card. I did let them know that I was not happy about that one. I don’t think Morgan has ever had perfect attendance due to having so many health issues and appointments.
Holden is performing at grade level in all areas. First graders are graded on a 1-4 scale with 4 being the highest. He had 3’s across the board. My biggest concern for him right now is that I have been trying to get the school to send me the paperwork regarding a speech evaluation. I emailed his teacher on 11/7 to tell her that Jerry and I have concerns about his speech. He was evaluated at the age of 4 and we were told that he would outgrow say “somefing” instead of “something” and “everysing” instead of “everything”. Well, he has not outgrown that so I mentioned it to his teacher. She had a short evaluation done with him and it was determined that he does need to have a complete speech evaluation. The teacher called me the next day to tell me that she would send me the paperwork. As of today, I have received no paperwork. I have emailed the teacher and not received a reply. I left a message for the speech pathologist and have not heard back from her. I contacted the Exceptional Children’s case manager. She told me that she would check into it and I have not heard anything back from her either. I guess tomorrow I will have to contact the principal. Holden’s teacher is not the best when it comes to communicating with parents. I hate to be the tattletale parent, but if Holden has speech issues they need to be addressed promptly. We have already wasted a whole month waiting for paperwork to be sent. I am not the most patient person in the world so I am actually a bit surprised that I have waited this long.
I am also in the process of having Morgan’s IEP re-evaluated. She did not receive any services while in private school but she was considered OHI during the two years she was in public school. We had our initial meeting on September 16. All of the evaluations have been completed and I will find out the results on December 8.
Lyndon is still full of energy and giving her teachers a fit. She also gives her dance teachers a fit. Listening is just not her thing. She is funny and sweet but I am glad that I don’t have to try to teach her. She is my joy and is so affectionate but she can also test one’s patience.
Morgan had an appointment with Dr. Kerrigan, the endocrinologist, on September 23. She is in the early stages of puberty. It is still believed that her ovaries will be “slow”. I am not sure what this means for her in terms of reproduction but we see this doctor every six months so I am sure we will stay on top of this.
Holden has now been diagnosed with ADHD as well. We were really not surprised by this. But, he is doing well in school now and taking medication so hopefully this will not be a big issue for him. We will have another meeting with the doctor on December 1 to make sure the medication is helping. The way things are going, I guess Lyndon will be going down that road some day as well. But all things considered, it really is not that big of a deal when compared to cancer.
On October 4, Brenner Children’s Hospital had their Fall Fun Day at Camp Victory Junction. This is always a great day. The weather was glorious and the kids had a wonderful time.
Holden’s baseball season came to an end at the end of October. He improved about 1000�ver the course of the season. He may even be interested in playing in the spring. At first, he was saying that he wanted to go back to soccer but I am not sure now. Now he is playing basketball in the Upwards Program. This is a Christian based sports league. He has had two practices so far and seems to be having a good time. Morgan is an Upwards Cheerleader. Unfortunately, I went to the interest meeting and they did not have a coach. So, guess who gets roped into coaching the team? ME! And, guess who has absolutely no experience at all with cheerleading. ME! I am coaching 3rd and 4th graders. So far we have had two practices. It was more fun than I expected. Only one cheerleader gave me a hard time and that was my own daughter. It should be an interesting season.
On October 26, we went to the Make A Wish Reunion at Carowinds. It was another wonderful day.
We took a family vacation over Fall Break. We went to the mountains of NC and it was a wonderful trip. Morgan’s loves history and the early 1900’s is one of her favorite eras. She loved the Biltmore House. Holden liked it too but not as much as Morgan. Lyndon made it out of the place without destroying anything, so it was a great day. We were out of town over Halloween so we took the kids Trick Or Treating in the big city of Highland, NC. The main street through downtown Highlands was closed down and all the businesses give out candy. It was a fabulous Halloween. The kids also went mining for gems. It was one of the most peaceful vacations we have ever had and we would like to do it again sometime.
I can’t believe we are getting ready to celebrate Thanksgiving. Jerry’s birthday is Friday. He will be 39. I am not sure what we are going to do but I am planning on making him a pecan pie, his favorite. Morgan dances on Friday nights and Holden has basketball practice so once again the kids will come first.
Mom is doing great. We have been very blessed to have two cancer survivors in our family.
I will try not to let two months pass before doing another update. But, just in cases I am still being slack I hope everyone has a fabulous Thanksgiving, a terrific Christmas, and a beautiful New Year’s.
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
Monday, September 15, 2008
Hello Friends,
I was not quite as prompt about doing my September update as I was the August. But, I do have an excuse. I am back at work now and fairly busy. Everybody is involved in all sorts of activities and at the end of each day I am way too tired to spend a lot of time on the computer.
Morgan has now been off treatment for 3 years and 5 months. She is 2031 days post-transplant.
We had a few medical appointments in the month of August. Nothing major, just routine stuff. On August 4, Morgan had to have a CT scan done of her leg. This is a result of the fall that she took back in October 2003 when she broke her femur. Her leg was repaired using a rod, and now her right leg (the one she broke) will always be longer than the left. We have to closely monitor this just to make sure that the difference does not become too drastic. We met with the orthopedist on August 15 and the difference between her two legs is still slight enough that we don’t have to do anything about it. In a year, we will go back and do the whole process again.
Holden had a very exciting week August 4-8. He went to Lego Camp at Wake Forest. Holden has a builder’s mentality. He could sit around and work with his Legos for hours on end, especially if it means not cleaning his room. He had a great time at Lego camp and hopes to return next year.
The kids are continuing with their piano lessons and are really doing quite well. It is a major ordeal getting them to practice, but when they do practice I can actually tell what song they are playing. The piano teacher moved to a home quite a distance from us so now she comes to us instead of us having to go to her. This really helps out with not having to find something to do to entertain Lyndon while Morgan and Holden are at piano lessons.
Morgan went to Dream Camp August 18-22. This camp was sponsored by UNCG and was specifically designed for kids with Asperger’s disorder and getting them prepared to return to school. She enjoyed the camp even though it was a bit of a pain getting her back and forth. I had to go back to work that week so it made transportation a bit more difficult. The camp was about an hour away from our house, which further complicated things. But, we managed.
Lyndon had her first day of school on August 20. She loves school but as usual she is keeping her teachers on their toes. I am not proud to say that she has already been to the principal’s office once for not listening. I would like to say that this surprises me, but it doesn’t. I was always such an obedient child (at least that is how I remember it) so I am sure my kids get this rebellious streak from their father.
Morgan had her first orthodontist appoint on August 20. It was a very entertaining appointment because I took Rachel, my niece, with me while Mom kept Holden and Lyndon. Rachel was very inquisitive as to what the orthodontist was doing. I think the two girls kept Dr. Handy quite amused. Dr. Handy recommended that Morgan have four teeth pulled in order to make room for the new teeth that are coming in. I am sorry to say that Morgan will probably need more teeth pulled in the future but I am not sharing this bit of information with her just yet. Morgan had two of those teeth pulled on September 9 and the other two pulled on September 10. Right now, Morgan is enjoying a break from the dental world.
Morgan and Holden started at their new school on August 25. So far, things seem to be going pretty well. Morgan has Mrs. Vaughn and she used to work at Center Grove so this is a perfect arrangement. Holden’s teacher, Ms. Jones, is the same teacher his buddy Madison had last year and there is a boy from Center Grove in his class so he is fairly happy about that. Holden is having a few issues so we are going to have him evaluated for ADHD. I noticed that he has trouble staying focused at lots of different tasks, including playing sports. His evaluation is scheduled for September 30. I think this is something else my kids inherited from Jerry (smile).
Morgan and Holden have been riding the bus home from school, and this is a new experience for them. They actually ride with Madison back to Heather’s house and I pick them up there. I have been there waiting for them everyday so far and I don’t think that makes them too happy because they would love to have some time to play with Madison and Tanner after school. Morgan was very upset when they were assigned seats. She wanted to sit with Madison. I was upset at the beginning of the year because they were staying on the bus for about an hour each afternoon. That seems to have gotten somewhat better. Now they get out of school at 2:40 and get off the bus at 3:30. I still think this is a bit crazy because the school is about 2 miles from Heather’s house. But, it gives Morgan a chance to do her homework on the bus. Holden had an incident on the bus Friday afternoon. I am hoping that get resolved today. I emailed the assistant principal but I have not heard back from him. We shall see what happens.
Morgan and Lyndon both started dance class the first week of September. Lyndon is taking creative dance and I really think she has more fun than any other child in the class. Morgan is taking ballet and hip hop / jazz. Morgan dances for two hours a week. She is very tired when class is over but it is good for her.
Holden has also playing baseball this year. I think he is a bit frustrated because he is very inexperienced and as I mentioned before, he has had some major problems focusing while on the field. He is getting better, but he has a long way to go. I think he will get better.
Mom has finished all of her radiation treatments. She seems to be doing well and is happy to have that part of her treatment behind her. Now she is taking oral meds and we are praying that this is the only type of treatment that she has to have.
September is another good month for us. Holden will be 7 on the 28th. I can’t believe that he is almost 7. I will be 35 on the 30th. 40 is right around the corner for me.
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
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
Friday, July 4, 2008
Hello Friends,
Happy Independence Day!
You would think that since I am out of work I would have time to sit down and do an update. I think I stay busier in the summer than I do during the school year. But it is a relaxing busy if that makes sense. Hanging out at the pool, etc.
First an update on Mom. Her surgery went well and they found that the cancer was contained to a pea sized tumor and had not spread to the lymph nodes. However, they did find precancerous cells in her breast. Therefore, she is going to start radiation mid-July. She will have 33 treatments and should be finished around the end of August. After that, her treatment will involve oral medication and regular follow-up. Please pray that all goes well with the radiation and this whole incident proves to be nothing more than a minor inconvenience to her life.
Morgan has now been off treatment for 3 years, 2 months, 2 weeks, and five days. She is 1959 days post-transplant. July 31 will mark six years since diagnosis. Since my last update, she has had no medical appointments of any time. Praise God!
Jerry's trip to the beach with the kids went well. However, it was cut a bits shorter than I thought it would be. I was having lunch at work and my cell phone rang. Jerry was calling to tell me that Holden wanted to talk to me. When he put Holden on the phone, my precious son says “Mom, I miss you and I want to come home. Every thing I look at reminds me of you. The trees, the shower, the couch.” I must admit that I got a little misty eyed as I told Holden to tell his daddy to pack their things and come home. They returned home on Wednesday afternoon. Of course, when Holden walked into the house he walked right past me without even saying Hello. I am still trying to figure out if his dad paid him to pull that little prank on the phone.
She has been busy though. Holden and Lyndon have too! Let's see . . . what has been going on in the Barnes' home:
**May 30: Last day of school for everyone except Mom
**June 10: Morgan's dance recital. She did a beautiful job.
**June 8-12: Morgan and Holden attended Camp Merriwood. It was a day camp and they both had a great time because lots of friends from their school and Madison McLeod were all there. Morgan got to spend the night on Friday night. Holden is looking forward to being able to stay the night next year. But I am a little worried if he can't even go to the beach with his dad and sisters how he will do at camp.
**June 22- 26: Morgan was at Camp Victory Junction. You may remember that last year she cried when I picked her up because she did not want to leave. This year she confessed to me that she was homesick and cried a little bit because she wanted to come home. I am sure by next summer she will be eager to go again. As a mom, it sort of makes me feel good that she missed me as much as I missed her.
**Lyndon is potty trained. She is doing great aside from a couple of minor accidents. She is my only child that was officially there before the age of 3. This means that everything is set for her to attend the preschool I wanted her in in the fall.
We are really enjoying the new house. All the boxes are unpacked but there is still a lot of work to be done. We have managed to take the pink tulip wallpaper down in Holden's room and paint it blue. That kind of had to be the first priority. No little boy should have pink tulip wallpaper in his room. The next project is to have the master bath fixed. We got a great deal on this house, but we bought it "as is". Two of the bathtubs have cracks in them. We have not been able to use them. It has been a bit of a hassle for all five us to be using one shower. Hopefully, we will get another one up and running soon. I love this house, but it was last redecorated in the 1980's so there is a lot to be done to bring it up to date. Unfortunately, there is not a money tree in the backyard to finance these adventures so things are going to be done very slowly.
We plan on having a great July. Tonight we are getting together with the McLeods for a cook-out and hopefully going to see the fireworks at the town square assuming that the kids manage to stay awake and happy until 9:30. We are going to be spending a week at the beach with my parent and my brother and his family. We are renting a four bedroom duplex. We are all looking forward to it. On July 19, Lyndon will be three. On July 25, Morgan will be nine. On July 26, Jerry and I will have been married for 11 years. God is good – all the time!
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
Tuesday, June 3, 2008
Hello Friends,
My mom has been out of surgery for about an hour. The surgeon reported that there was no lymph node involvement. He did feel some places which he believes are calcification, but they will do pathology on them anyway. If the pathology comes back cancerous for these places they will do a masectomy. She is spending the night in the hospital tonight mainly for pain control.
Jerry and the kids have gone to the beach for the week. He decided to do this so that I can devote all of my attention to my mom. He really is a good guy. My parents were supposed to take the kids to the beach this week but could not do so for obvious reasons. Jerry is winning some major points right now as a dad and a husband.
I will update in a week or so once we have the pathology reports back on Mom and know more about what the next course of treatment will be for her.
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.
3)Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Thursday, May 29, 2008
Hello Friends,
I can't believe how long it has been since my last update. We are still trying to get things settled here in the new house. We love living here and it is so nice for each child to have his or her own bedroom. Moving is a lot of work and I really don't want to have to do it again. I hope that we stay in this house until it is just me and Jerry. We have one bedroom on the main level so we very well could stay here after we are old and gray.
A lot has happened since my last update and I am sorry to say that it has not all been good news. Last Friday, we found out that our family once again has to start the fight against cancer. My mother was diagnosed with breast cancer – invasive ductal adenocarcinoma to be exact. My mother is my best friend. We are extremely close and my kids are all crazy about her. I think if they could choose, they would go live with her and my dad. She is just a good person. The day that Morgan was diagnosed with neuroblastoma my mother walked out on her career and never went back to work. She knew that it was more important for her to take care of Morgan, Holden, and me than it was to deveote more time to USAirways. She gave up all of the retirement benefits that she would have otherwise had.
My parents celebrated 40 years of marriage on May 10. My dad is a great man too. The other day I was with Heather and we had to stop by my parents house. When we got in the car and were ready to leave she told me that she loved to see my parents when they are together because it is obvious that they are still very much in love. They are both staying strong right now because that is just the kind of people they are. I think they are more concerned about protecting me, my brother, and our kids more than anything else. I am very blessed to have the parents that I have. I have never known anything from them except for unconditional love.
Mom had to have an MRI today. She will have surgery on Tuesday. The plan is to perform a lumpectomy and then begin radiation. Everyone, including her doctors, is hopeful that this is totally cureable. Please pray that all goes well and the doctors are correct.
The kids are all doing great. Morgan is now 1923 days post transplant. She has been off treatment for 3 years, 1 month, and 2 weeks. She has been busy getting ready for her dance recital.
Tomorrow is the last day of school. Holden will graduate from kindergarten tomorrow. Lyndon received the class award for “Most Likely to Be an Actress”. No surprises there.
We took the kids to the zoo on Memorial Day. It was nice to have a get away. Lyndon loves animals so she was thrilled. The zoo was very crowded and it was a bit warm but all in all, it was a nice family day. All of the new pictures that I have added are from our day at the zoo.
It looks like I will remain at Southeast Middle School next year. The transfers that I was trying to get did not work out. But, I know that God will put me exactly where He wants me to be. And, I love my school so I will be patient and wait for His plans (as we must do with all things).
I have to work until June 10. It will be interesting to see how we are going to work out childcare over the next few weeks since my mother has always been my primary childcare provider. Praise God for Heather because I know she will step in and help me. I am blessed to have the friends and family that I have.
This update is going to be short because I have some more boxes to unpack tonight. I will do another update after Mom's surgery on Tuesday. Please keep us all in your thoughts and prayers.
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.
3)Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
In Him,
Allison
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
Sunday, March 16, 2008
Hello Friends,
It is almost Easter. Another year is passing us by in the blink of an eye.
Morgan has now been off treatment for 2 years, 11 months, and 1 day. She is now 1849 days post transplant. February 20 was the 5 year anniversary of Morgan's transplant.
After going round and round with Morgan's pediatrician last month, I made the decision to change her to a new one. She had her first appointment with Dr. Trowell on February 3. Morgan has seen Dr. Trowell before because we did not switich practices. We decided to changes Morgan's medication from Ritalin to Straterra. I think we are seeing some improvement. At first, she was having some difficulty focusing but things seem to be better now that the medicine is fully in her system. She takes Straterra at night and it makes her drowsy so it is actually helping her sleep at night. That is a bonus because Morgan is not a very good sleeper and she tends to wake up many other family members during the night.
Morgan finished up her first session of Buddy Group on February 12. She got a week off and then the second session started. This session the group is at full capacity with 8 members. Morgan is still the only girl in the group.
During the last month, Morgan has added two new doctors to her repertorie. On February 21, she saw Dr. McLorie, the urologist. After a battery of tests, it was determined that Morgan's bladder does not completely empty when she goes to the bathroom. She goes back to see him on March 20 for more tests to see if something can be done about this issue. On March14, we had a visit with Dr. Kerrigan, the endocrinologist. It is very typical for pediatric cancer survivors to be followed by an endocrinologist to see what hormonal effects chemo had on their bodies. Morgan only has one adrenal gland due to the cancer. It seems as if the one she has is doing okay at this point. Morgan is in the early stages of puberty but she is not doing things in the correct order. Her adrenal hormones have kicked into gear and her ovarian hormones are still dormant. Dr. Kerrigan said that this is atypical but not abnormal. He did a FSH test to see if her ovaries are normal but we will not have those results back for a few more weeks. Dr. Kerrigan wants to see Morgan again in 6 months, but if there are no major changes then he will start seeing her on an as needed basis. She is in the 25th percentile for height and weight. She is small for her age, but she is height/weight proportionate.
The Barnes Family got to do one of our favorite activities in February. We went to Family Weekend at Camp Victory Junction on February 22-24. It was a terrific way to celebrate Morgan's Five Year Post Transplant Anniversary. We had a great time. All of the pictures that I have posted on the website this month were taken at camp. The one of all of us dressed up was taken on Stage Night. This is a talent show where everyone has a ball and is praised for their performances, regardless of what they do. A totally safe environment for kids who will probably never be the star of a talent show anywhere else. Our family did a Disney Sing Along. Morgan was Ariel from “The Little Mermaid”, Holden was Genie from “Aladdin”, Lyndon was Simba from “The Lion King”, I was Pocahonta, and Jerry was Beast from “Beauty and the Beast”. We had a great time Lyndon stole the show with her aimless wanderings around stage.
On February 26, I enrolled Morgan and Holden in public school for next year. Forsyth County has schools of choice. I selected Southwest Elementary as our first choice, Lewisville Elementary as our second choice, and Moore Elementary as our third choice. I will find out in the next few weeks which school they have been assigned to. I have I trying to get transferred to a school closer to my end of the county. I love the school I work in now, but it is all the way across the county for me. I am looking into positions that may be available at two middle schools in the western part of the county. The best part is that they both have elementary schools right next door to them. Should I get one of those two jobs, then Morgan and Holden will be able to go to those schools and then just walk to my office after school. That would be great. I am praying for things to work out. Morgan has so many issues that I would just feel better being close to her.
We have enrolled Lyndon in a Christian Preschool for next year. However, I am working on a committee that is trying to move the former Center Grove Preschool to a new location. That may be where she ends up. I also have her on the waiting list at one other place. The new preschool requires that she be completely potty trained prior to the start of school. We are working on that and she is doing okay with it. She certianly expresses more interest in it than my other two kids did when they were her age. I fully expect her to have it together by August, but the third school doesn't require this so it is sort of my backup plan.
Morgan has decided that one of her favorite activities is spending the night with Grandma Byrd, her great grandmother. Morgan has done this twice now. She has loved it both times and I think it is very special that she enjoys spending time with my grandmother. I am certain that Grandma likes it just as much as Morgan does. Morgan's cousin, Sarah, is there too so Morgan really has a good time.
Holden's soccer season was supposed to start March 7. It rained all day on the 7th so he ended up starting on the 14th. I signed him up for the wrong thing. I was supposed to sign him up for the Juniors Program but instead I signed him up for the Development Program. Instead of being on a team, it is more like going to a soccer clinic every week. He seems happy with it so I am not going to tell him that I messed up.
Holden's other big news is that he finally has his first loose tooth. It has been loose for several weeks now but I does not seem like it is going to be falling out any time soon. In fact, he has two permanent teeth coming in behind his bottom two baby teeth. It is one of those baby teeth that is loose.
On a sad note, we lost a very courageous Neuroblastoma Warrior on February 17. Harrison Nichols was diagnosed just two months before Morgan. He did most of his treatment at MSKCC. I spent many hours talking to his mother and grandmother in clinic. Harrison was a pioneer because he had just about every treatment available. I feel certain that someday children will be cured of this horrible monster due to everything that Harrison was able to endure. Please keep Harrison's family in your thoughts and prayers.
Still no progress in selling the house. We switched Realtors. We started out using a discount broker hoping to save a little bit of money on a commission. We it didn't sell in six months we switched over to a Realtor with Remax. We were hoping that this would pick up a little on the traffic but so far it has not. We have been with this new Realtor for 2 weeks and no one has come to see the house yet. Friday I received a call that they were going to show it on Saturday. Jerry and I worked like dogs getting the place ready to show. I scrubbed baseboards. Jerry did touch up painting in every room of the house. One hour before the scheduled showing the Realtor called and cancelled. This was very frustrating. It is not a bad house and it is in a very popular neighborhood. I would feel differently if people were actually coming to see the house and giving us feedback. But we have only shown it 8 times since August 1. Very frustrating.
I hope that everyone has a wonderful Easter. May you all feel the love of God during this season of His Son's resurrection.
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
Sunday, February 3, 2008
Can you believe that one of my New Year's resolutions was to be more faithful in updating at the first of the month? Obviously, I am not doing so well in keeping that one. This is the longest I have ever gone between updates. I will try to do the next update sometime around the first of March. I have actually had a few people (Heather McLeod) remind me that I have not done an update yet.
As of today, Morgan has been off treatment for 2 years, 9 months, two weeks and three days. She is now 1779 days post transplant. The five year anniversary of her transplant will be February 20. I can't believe that it has been five years since those dark days at Duke.
We have been very busy around here since December. Christmas was wonderful. I think the part I enjoyed most was just having time off work and spending time with family. The day after Christmas went to Cherry Grove, SC for a winter beach trip. We got home in time to ring in the New Year. I rang it in watching TV on the couch and Jerry was watching the TV upstairs. All three kids were in bed asleep when it became 2008. We are really party animals.
Morgan is continuing with her buddy group for kids with autism spectrum disorders. I have had some people ask me about Morgan's Asperger's diagnosis and if it is at all related to cancer. Based on my research, autism can be caused by anything that inhibits proper development of the central nervous system. Neuroblastoma is a cancer of the central nervous system. So, it stands to reason that neuroblastoma could be the underlying cause of her Asperger's. Morgan loves buddy group and she is doing well there. She has a boyfriend in the group. It is quite cute to watch them together. They sit at the table and eat snacks together but they don't talk to each other and very rarely even look at each other. This is very typical behavior for autistic kids. Every now and then they will look up at each other and giggle.
Holden's last basketball game was on January 12. Right now we are taking a break from all sports. He will play soccer in the spring, but for now we are enjoying sleeping in on Saturday mornings. Soccer is his favorite sport. I gave him the choice of playing soccer or t-ball and he quickly chose soccer.
Morgan had an appointment with Dr. Castellino at Brenner Children's Hospital on January 16. Dr. Castellino is the late effects specialist. Morgan's check-up went well. Her urine markers were tested and she had a CBC done. I have not heard from either test so I am assuming that all was well. Dr. Castellino has concerns about the possibility of Morgan being in the early phases of puberty. Therefore, she has an appointment with an endocrinologist next month.
Morgan and Holden received their report cards on January 18. They both did very well. Morgan once again made all A's in her core classes. I think she still had a C in handwriting and a B in Spanish. She does well in school. Most kids with Asperger's are very bright. Most of her problems are in the social realm. She loves school but I am afraid that could change if she is not in the right environment. I have a feeling the middle school years will be somewhat difficult for her.
Holden's report card was also good. He does not receive grades in kindergarten, but he had “excellent”, “good”, or “satisfactory” in everything. Last quarter he received an N (needs improvement) in self control but he improved in that area. His teacher even wrote a comment that he was doing much better.
Lyndon had to have her first experience with a dentist on January 23. She was climbing on an end table when she fell and hit her mouth on it. She injured her lip and her gum. The area just above her front teeth was very bruised. I took her to the dentist just to make sure that she did not do any real damage. The x-ray looked okay, but the the tooth was slightly loose. The dentist wants to x-ray it again at the end of this month just to make sure that it has healed properly. As you can see, Lyndon is just as wild as every. This incident has not slowed her down in the slightest.
Morgan had some sort of stomach virus last week. She got sick on Monday and was able to go back to school on Wednesday. I can honestly say that this is the first time I can remember that she got sick and I did not even think about it being cancer related. Holden had some minor tummy issues the week before. He did not get sick, but he did complain that his stomach was hurting and had to leave school early one day. Lyndon also got sick later that week, but I just assumed hers was due to a lot of congestion due to having a cold. When Morgan got sick, I knew it was a stomach virus and did not worry in the slightest. Man how I have changed.
As soon as Morgan got over her stomach virus, Lyndon started complaining that her ears hurt. I pulled her out of the tub one night and she told me that I needed to take her ears to the doctor. Jerry took her to the pediatrician the next day and she has a double ear infection. She finishes her last dose of antibiotic today. She still has a bad cough so I am hoping that her ears are now clear. This is only the second ear infection that she has had. She had one other one when she was 7 months old.
The very next day I had to take Morgan to the doctor's office because she was having some bladder issues. I felt like her pediatrician was totally dismissing everything I was saying so I demanded that he refer her to a urologist. Morgan will be seeing the urologist on February 21. I have spoken with other NB parents who say their children have had similar symptoms. I also wanted to discuss changing Morgan's meds with the pediatrician. She currently takes ritalin for ADHD. I believe that Morgan does not have ADHD. I believe that the signs of ADHD that we have seen are really just part of her Asperger's diagnosis. Her father and I both feel like we are seeing more obsessive compulsive and mood issues than attention issues. Her doctor simply told me that we are not seeing attention issues because she is on medication. I believe that if a child has obsessive compulsive issues then ritalin and exacerbate those symptoms. The more I thought about this the more angry I became. I called the office and requested that Morgan be changed to the one of the other pediatricians in the practice. I like Morgan's doctor, but he was my pediatrician when I was a child and I think that perhaps she needs someone a little more proactive and progressive. Morgan will be seeing her new pediatrician on Tuesday to discuss my issues with her medications. I considered totally switching practices but with Morgan's health history, I thought it would be easier to stay within the same practice. The new doctor, Dr. Trowell, knows Morgan and she also has an oncology background. And I know that she has one other neuroblastoma patient right now. I hope that this works out and we don't have to change practices altoget her I may even have to find a psychiatrist who can manage Morgan's meds. For now, I am going to leave Holden and Lyndon with the other doctor.
The leaders of Center Grove Baptist Church made the decision to close the academy. Jerry and I were both very hurt by this decision. I don't want to get into church politics here, but we really do not feel as if it was handled in an appropriate manner. As a result, we have stopped going to church there. To be honest, Morgan and Holden never really liked going to church at Center Grove. When I told them that the school was closing, they both cried and Morgan said that she did not want to go back to church there. They loved the academy. For the last two Sundays we have gone back to our old church, River Oaks. It was like we never left. We were welcomed back with love and friendship. Morgan and Holden were also thrilled with our return. They are getting to an age where it is very important that they enjoy being at church because I don't want them to ever feel like the only reason they go is because Mom and Dad force them to. I want them to love going to church and love what goes on there.
This has also left Jerry and I with the very difficult decision of where to send the kids to school next year. We were almost positive we were going to put Morgan and Holden back in public school prior to this decision even being made. However, I really liked the idea of having Center Grove to fall back on if Morgan had difficulty in public school. We have good public schools in our area, but it may be difficult for her to be in a large class. This also leaves us without daycare for Lyndon. I have visited two places recently and did not care for either one of them. I have one more school that I want to look at. I am hoping and praying that this one is a match for us. It is so hard to find good daycare and very upsetting when you have one that you love and then it closes.
We are still trying to sell our house. I keep thinking that things will pick up in the spring, but they are still pretty slow right now. We are hoping that everything comes together so that we can be in the new house by June.
Please pray for our friends Harrison and Brandon. Harrison was diagnosed around the same time as Morgan. He has had stable disease for many years, but has recently been dealing with disease progression. Brandon is a local boy who has relapsed and is currently in the hospital with an unidentifiable infection.
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
Monday, December 17, 2007
Hello Friends,
I think that my Christmas shopping is finally finished so I can now sit down and take the opportunity to do an update. My goal is always to do these updates on the first of the month, but I think it has been many months since I was able to meet my deadline.
Morgan has now been off treatment for 2 years, 8 months, and 2 days. She is 1759 days post transplant. Each day is truly a blessing from God.
We have had quite a bit of dealings with the medical community since my last update. I had to have a “surprise” mammogram on November 16 due to some strange findings, but everything turned out to be fine. I still have a few years before I hit 40 and have to start having yearly mammograms. I must admit that this was a very stressful time for me. I assumed that after having a child endure cancer treatment that I would be able to take it if I ever had a doctor mention the C word to me as a possibility. But, I was incredibly scared. It made me appreciate everything that Morgan and the rest of these cancer kids are forced to go through. Morgan is truly my hero!
We had a terrific Thanksgiving. It was so nice to have a few days off work and be able to spend time with family. We had lunch with Grandma Penny and Jerry’s side of the family and dinner with my family. The kids were all worn out by the end of the day. Jerry got up for his annual shopping trip on the day after Thanksgiving long before the rest of us even rolled over. I heard him come in and thought that he was just getting up to leave. We put our Christmas tree up the day after Thanksgiving as well. It looks kind of funny because we have to put all the fragile ornaments at the top (thanks to Lyndon). I must say that it is a bit top heavy. Lyndon has also enjoyed taking all the bows off of the presents that are under the tree. That is why I have completely stopped wrapping any presents and as of right now, there are very few presents under our tree. She has also enjoyed pulling all of the gifts that are in gifts bags out of their packaging and giving them a trial run.
On November 27, Morgan started a Buddy Group for kids with Autism Spectrum Disorders. She is doing well and is having a lot of fun. Hopefully, she will gain some social skills that will carry over to her life at school. Right now her individual goals deal with communication and socially appropriate behaviors. Morgan speaks very quietly and has a difficult time beginning a conversation with others. She also tends to be a bit immature. I think the group is wonderful for her and she is having a blast. Holden is jealous that he is not participating. My only complaint about the group is that Morgan is the only girl, which is not unusual because there are a lot more boys with Autism Spectrum Disorders than there are girls.
Holden’s basketball season was in full swing until this past Saturday. We are now on break for the holidays. No games or practice until January 3. He is still happy playing, but I have no hopes for my son being the next Michael Jordan. He is very athletic but he just does not seem to have a real feel for the game. I still think soccer is his thing.
Hannah Montana came to town on November 25. Morgan asked a long time ago if she could go. I gave her the standard answer “We’ll see”. When I said this I fully intended to check on tickets and perhaps buy them if they were reasonably priced. Obviously, I had no idea how popular these tickets were. When I heard about how fast they sold out and how much scalpers were selling them for I knew that Hanna Montana would not be in Morgan’s future. But, once again my good friend Heather came through for me. She won tickets to the concert. Since the McLeods were going to be at Disney World on the day of the concert, Morgan and I got her tickets. This was a very memorable day for Morgan. It was for me too – I don’t think I can ever forget the sound of so many little girls all screaming at one time.
The Holiday season is now in full swing and the kids are enjoying going to lots of parties and being able to stay with Grandma and Pawpaw when we have adults only parties. On December 1, we had two parties in one day. That afternoon we had our annual party for the Oncology Department at Brenner Children’s Hospital. We got to visit our friends, the Cains. The kids also had the opportunity to visit with Santa and tell him what they want for Christmas. Lyndon is still in that phase where she does not care for Santa at all. The evening of December 1, we had Jerry’s office Christmas party. It was held at Sciworks and it was for the entire family. Sciworks is one of Morgan and Holden’s favorite places so they had an excellent time.
On December 2, Lyndon woke up with a case of pink eye. This meant a trip to the convenience care clinic at the pediatrician’s office since it was a Sunday. Fortunately, we got in and out of there pretty quick. Dr. Franklin told us that it would probably turn into an ear infection because most of the time colds that cause pink eye also cause ear infections. Thankfully, her ears never started bothering her. She was given permission to return to school on Monday and other than hating the eye drops, she has experienced no other problems.
The Byrd family got together on December 8. We had a surprise party for my Grandma. Her birthday is December 23 so we wanted everyone to be able to get together. This is the first time in a very long time that all of my grandmother’s children, grandchildren, spouses, and great grandchildren were all assembled together. It was a wonderful party and I think that everyone had a terrific time.
Yesterday was another wonderful day. Heather and I took Morgan and Madison to see the Nutcracker performed by the High Point Ballet. Morgan was mesmerized. Morgan danced around all evening. It was absolutely lovely.
The only negative this month is that Morgan has done a little complaining about her stomach hurting. She told me on December 5th that her stomach hurt every time she ate. I made an appointment with the pediatrician just to have things checked out. The next day she told me that her stomach had stopped hurting and I should cancel the appointment. I waited throughout that day and no more complaints, so I did cancel the appointment. About a week later, she started acting a bit lethargic, but seemed to snap out of it fairly quickly. Both of the girls have been dealing with colds. I honestly think that the stomach issues could have something to do with sinus drainage. But, there is always that lingering fear in the back of my mind that it could be something more serious. This fear can only be truly appreciated by other parents of cancer survivors. Morgan seems to be feeling much better but I am still constantly praying that the symptoms don’t return. I used to think that I would be thankful when Morgan was not doing routine scans anymore but it is almost more stressful because when she was scanning at least I felt like I knew what was going on in her body. Morgan will see Dr. Castellino, her late effects specialist, in January. I am sure they will do urine and blood tests at the time. Until that time, I will try to stay sane.
The house selling is still going very slow. It is an incredibly slow time of year in an incredibly slow market. People keep telling me that things will pick up in the spring. I certainly hope so.
Just in case you have not yet had a chance to donate to Lunch for Life, I am copying the info from the previous journal entry:
The Lunch for Life Campaign officially started on November 1. I must admit that I have been a little slack about getting the word out. Children's Neuroblastoma Cancer Foundation for the fifth year is doing Lunch for Life. It is to help raise funds for neuroblastoma. All they are asking is for you to "give up" one lunch and donate that money to Lunch for Life. As you may remember the premise of this campaign is that one person donates $5.00 (the cost of a lunch) and then asks five friends to donate $5.00. Those five friends ask five friends, and it just keeps going. This campaign has been very successful in raising money to fight neuroblastoma, a very deadly yet under funded childhood cancer. This is basically a grassroots effort by parents of neuroblastoma children to raise money. If you would like to donate, go to www.lunchforlife.org. Click on the icon that says “Donate Now”. That will take you to a donation page, you can find Morgan's name in the pull down menu. Her giving tree code is 26796.
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
I hope that everyone has a Merry Christmas and a terrific New Year!
God Bless,
Allison
Saturday, November 17, 2007
Hello Friends,
I can't believe that it is almost Thanksgiving. Where has 2007 gone? I love this time of year. We have so much to thank God for and I love the season that is devoted to doing that. We are thankful that Morgan has now been off treatment for 2 years, 7 months, and 2 days. She is now 1729 days post transplant.
The Lunch for Life Campaign officially started on November 1. I must admit that I have been a little slack about getting the word out. Children's Neuroblastoma Cancer Foundation for the fifth year is doing Lunch for Life. It is to help raise funds for neuroblastoma. All they are asking is for you to "give up" one lunch and donate that money to Lunch for Life. As you may remember the premise of this campaign is that one person donates $5.00 (the cost of a lunch) and then asks five friends to donate $5.00. Those five friends ask five friends, and it just keeps going. This campaign has been very successful in raising money to fight neuroblastoma, a very deadly yet under funded childhood cancer. This is basically a grassroots effort by parents of neuroblastoma children to raise money. If you would like to donate, go to www.lunchforlife.org. Click on the icon that says “Donate Now”. That will take you to a donation page, you can find Morgan's name in the pull down menu. Her giving tree code is 26796.
Every little bit helps when fighting this nasty disease. Childhood cancer does not get nearly as much publicity as breast cancer. Remember how you see pink ribbons EVERYWHERE in the month of October. September is Childhood Cancer Awareness month. I don't think I have ever seen a gold childhood cancer awareness ribbon anywhere except on the cars and clothes of those of us who have been directly affected by it.
Occasionally, I like to look back in the archives of this web page and see what was going on in the past. In November 2002, we just found out that a mysterious spot that appeared on Morgan's lung during a CT scan miraculously disappeared. I am sure that this was a direct result of the prayers of lots of people. It was also back in November 2002 that we initially made contact with Dr. Brian Kushner at Memorial Sloan Kettering Cancer Center. I firmly believe that God led us to this institution and this was the treatment that He used to save Morgan's life. She had her second major surgery in November 2002. The surgery was a complete success and Morgan recovered from it very quickly. Another example of God playing an active role in Morgan's life.
By November 2003, Morgan was ending another phase of her treatment – Accutane. She was also recovering from a nasty broken femur that occurred in October 2003 during one of our many trips to New York for antibodies. At that time we were going to NY every eight weeks and staying two weeks at a time.
In November 2004, Morgan was going to kindergarten and having a difficult time behaving. She did her 11th cycle of antibodies during that month. We were actually in NY over the Thanksgiving Holiday in 2004. It was hard being away from Jerry and Holden, but Morgan did get the opportunity to see the Macy's Thanksgiving Day Parade live and in person.
In November 2005, we were still making trips to NY but she had finally finished antibodies. We were still doing scans every three months. In November 2006, she was still scanning. But now she had been released for scans every six months rather than every three.
Wow! It is hard to believe that this journey started so long ago. We have been through so much. But, I can honestly say that our family was very blessed through it all. It is not a journey that I would have chosen, but being able to watch the Lord perform a miracle in our lives is something that not everyone gets to be a part of. God is good – all the time.
Over the last month, we have been just as busy as ever here at the Barnes house. Holden finished up with his soccer season on October 29 and started playing basketball on November 1. He seems to enjoy it most of the time. I took him to practice for the first time the other night and I think he spent more time twirling around with his hands in his pockets and sliding around on the floor than he did concentrating on what the coach was saying.
Morgan is still dancing away. I can't believe this, but the studio has already started sending out information about the recital that will take place in June.
The kids all had flu shots on October 27. I had something I had to do on that day so Jerry had to take all three kids. I like it when he gets to handle the medical stuff. All three kids did well. Holden had some anxiety prior to the shot, but got over it pretty quickly once it was over. Morgan is so used to being poked and prodded that she did not have much of a reaction. Lyndon just did not know what hit her.
On October 28, we had the privilege of once again going to the Make A Wish Reunion at Carowinds. It was a beautiful day even if is was slightly chilly. The kids had a blast and it was a good day for making family memories. Make a Wish is truly a wonderful organization. They do such a good job of helping sick kids have special experiences.
The kids got their report cards on October 30. We were very pleased with the progress of both Morgan and Holden. Holden does not get letter grades yet. He was mainly graded on conduct, effort, attitude, etc. The only thing he needs to improve on in self control. Apparently, he has a little bit of trouble tolerating it when he doesn't win all of the games in class. You would never know he has such a competitive edge when watching him play organized sports. He also does not take being reprimanded very well and has been known to have an emotional outburst or two. However, he is doing much better than last year and it is obvious that he has matured a lot. We talk about this a lot and he always does better for awhile after our conversations. Sometimes he reverts, but that is what learning is all about.
Morgan made all A's in her main academic areas. She made a C in handwriting and a B in Spanish. We are very proud of her. At one time, she struggled in math but the teacher told me the other day that Morgan is frequently the classroom champion when they play math games.
Jerry and I are praying about what to do about school for next year. We love Center Grove but we are beginning to feel as if it may be time to put the kids back in public school. If we do that, we have some options in terms of which school to send them to. We are certain that the Lord will let us know exactly where to send the kids next year.
Lyndon is still as wild as ever. I think I say that a lot. She is so different from the other two children. She is way more hard to handle but she is also very witty. It is like she has already developed a dry sense of humor. I will ask her things and she will come back with cute and funny answers. We have gotten to where we call her “Nut Ball' for a nickname. It fits her to a tee. I think she will always continue to keep us on our toes.
Please be in prayer for Brandon Koontz and his family. Brandon lives in a neighboring county. He is a student at the elementary school where my brother used to be an assistant principal. He was diagnosed with neuroblastoma three years ago. His family with to Philadelphia for routine scans and it was discovered that he relapsed and the disease was fairly widespread throughout his body. I can only imagine how difficult it must be to have to restart this horrible journey.
We are still not having any luck at all selling the house. We have only shown it 5 times since we put it on the market. I just have to keep telling myself that God is in control of this situation just like He is in control of everything else.
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
Thursday, October 17, 2007
Hello Friends,
It seems like every month I get slower and slower about doing this update. I guess I should take that as a good sign. Our lives are so incredibly normal right now that it is hard to remember to sit down and type this update. I vividly remember a time when there was so much going on in our world that I felt compelled to share with everyone on a frequent basis. Keep in mind that no news is good news. I am thankful for each and every day the Lord has given us since July 31, 2002.
Morgan has now been off treatment for 2 years, 6 months and 2 days. She is 1698 days post transplant.
Holden’s soccer season is winding down. He is doing great and having a blast. The season will end at the end of the month. I love the fact that he is playing and practicing on the same night. It makes such a difference being able to sleep in on Saturday mornings. Who am I kidding? We never get to sleep in. The kids who are always so hard to wake up Monday through Friday are up at the crack of dawn on Saturday.
Morgan is loving dance just as much as always. She outgrew her tap shoes and we had to get another pair. She is growing up so quickly. Sometimes I look at her expecting to see a baby and am surprised when a young lady comes into view. She is maturing as well. I am seeing fewer temper tantrums and it is becoming easy to relate to her. I guess these are the sweet years. Once they hit middle school, the temper tantrums return and relating to middle school kids is next to impossible.
We were blessed on September 22 with the oncology department at Brenner’s Fall Fun Day. The event is always held at Camp Victory Junction. I think this was the best one so far. The kids did the usual events – riding horses, bowling, arts and crafts. Morgan, in particular, enjoyed a new event hosted by a sorority from Wake Forest. They had a “Princess for the Day” booth complete with tiaras and feather boas. The girls got to be pampered by these fabulous young ladies. Holden also enjoyed being a “Hero for the Day”. He got some nice new firefighter toys and the chance to play with some neat cars and trucks. The highlight of the day for me was spending a little bit of time with Grace Cain’s family. Grace was the first neuroblastoma warrior that our family met and she and her family have always been an inspiration to us. Morgan enjoyed talking to the Cain girls. In fact, I think she talked precious Laura’s ear off.
Holden turned 6 on September 28. His birthday was on a Friday so we spent the whole weekend celebrating. Jerry and I both took half a day off work and went to school and had lunch with Holden and Morgan. Friday night my nephew, Smith, spent the night with Holden. Jerry took the boys to see the Transformers movie. On Saturday, we had a small family party for Holden. After the party, he went home with his other cousin, Seth, to spend the night. On Sunday, we went to the Dixie Classic fair with Seth and his parents, Dana and Jody. It was a fabulous weekend. I had yet another birthday that same weekend but it is easy not to think too much about that when we were so busy celebrating Holden’s birthday.
Holden had his 6 year check-up on October 2. He is in good health, praise God.
Lyndon is still managing to keep her Mom and Dad on their toes. She contracted some mysterious virus and did not feel well for the entire first weekend of October. The symptoms of the virus were a fever that would come and go and intense stomach pain. You may remember that these were the same symptoms that Morgan displayed back in July 2002, just prior to diagnosis. We took her to the doctor that Friday after they called us from school to come pick her up. Of course, we could they would not tell us anything definitive. The only information we got was “She has a virus”. This was the same thing that Morgan’s doctors told us for three solid weeks before we finally insisted on taking her to the emergency room and received the horrible diagnosis of neuroblastoma. We comforted Lyndon through the weekend with lots of hugs and kisses and quite a bit of Tylenol. Jerry stayed home with her that Monday and by Tuesday she seemed to be all better. Of course, I am still watching her closely and if I start feeling nervous about things again I will be taking her back to the doctor and insisting upon a CBC a the very least.
We have not sold our home yet. The market is just so slow right now. We have only shown it four times. No one seems to be out there looking for homes right now. We still have plenty of time – over 7 months, to be exact. I am expecting (and praying for) things to pick up in the spring. The bright side of this is that if we do sell our house, then we would be homeless and forced to temporarily rent something for awhile. So I guess it is really in our best interest to stay in our current home as long as possible.
Thanks so much for continuing to check on our family and pray that Morgan's remission will be permanent.
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
Saturday, September 15, 2007
Hello Friends,
I guess I am late again. It seems as if I get later and later in the next month before doing another update. I guess that is a good sign that our lives are more normal than ever, which is truly a blessing from God.
Morgan has now been off treatment for 2 years and 5 months. She is 1666 days post-transplant. God is good – all the time.
Morgan's new psychologist pretty much confirmed that she does have “borderline” Asperger's characteristics. Therefore, we are treating it as if she does. Jerry and I are continuing to meet with Dr. Edwards to get suggestions on how to help Morgan. It is going well and we are very impressed by him. Morgan seems to be doing a lot better in many ways and we are thrilled for her.
All three kids started a new school year on August 22. All of the new pictures are from their first day of school. Morgan is loving second grade. Some of the kids in her class last year did not return to Center Grove so her class is even smaller. There are only nine kids in her class. Morgan seems to be getting along just fine socially and is doing great academically. She does have some difficulty with handwriting. But, this is pretty typical for kids with Asperger's, ADHD, and Neuroblastoma. Therefore, Morgan has three factors working against her when it comes to having good handwriting. This is certainly something that we can deal with. Organization is also not something that comes easily for Morgan. We seem to be going back to school a lot in the afternoons to retrieve forgotten books, lunch boxes, etc. Again, this is something that we can deal with and seems small in contrast to all she has been through in the last five years.
Holden is doing an amazing job in kindergarten. He has matured so much in the last year. His behavior has improved and he has only been to “yellow” once. He is holding his own academically and does an exceptional job with coloring and all of the artistic tasks he has to complete. He seems to be much more artistic than either of his parents. He pays so much attention to detail, which is completely opposite of Morgan.
Lyndon is having a good time in school too. She never cries or gets upset when Jerry drops her off. I don't think she is quite as wild at school as she at home because we always get good reports on her. She did causes some excitement a few weeks ago when she got her hand stuck in the elevator at school. Fortunately, it was not a major accident and her hand only turned pink for a few hours after then incident. Hopefully, she has learned not to put her hand in the elevator doors anymore.
Morgan had an appointment with Dr. Koman, her orthopedist, on August 20. He confirmed that her right leg is a bit longer than the left but he does not feel as if any intervention is necessary at this time. He wants to do a CT scanogram (I don't even know what that is) of her leg in August of next year and then see her again in two years.
Our September started off in a magical way. We took advantage of the great prices and took the kids to Disney World. It was a fabulous vacation and a very nice get-away since the parks were not very crowded at all.
Holden started another soccer season on September 9. He is playing in a new league and so far we are very pleased. The best part about it is that he has practices and games on the same night. His team is called the Winston Salem Dynamo. He seems to be having a great time. His first game will be this Monday night.
Morgan had to pay a visit to her dentist on September. Amazingly, her teeth are still in pretty great shape. She did not have a cavity on this visit either. Normally, kids who have been through a lot of chemo have problems with their teeth. So far, all of her problems have been fairly minor. Her dentist did decide to pull four of Morgan's baby teeth. Her adult teeth are coming in and those baby teeth were loose, but not really ready to come out. Morgan has pretty compacted teeth anyway, so it will help her adult teeth to get those baby teeth out of the way. She also had to have a small piece of root removed from her bottom gum. Apparently, when one of her bottom teeth came out part of the root stayed behind. Morgan endured these dental procedures very well and the Tooth Fairy was good to her.
Morgan has resumed her dance classes. Once again she is taking tap, ballet and jazz. She loves her dance class spends a lot of time practicing dance.
The sell of our home is proceeding very slowly. Anyone who has watched the news knows that the national real estate market has taken a real dive in the last few months. I am trying to be patient, which is not one of my best virtues. I know that it will happen in God's time, but sometimes I lose sight of that. Plus, we are not supposed to close on the new house until June so it is not like we are really running out of time.
August was a very sad month in the neuroblastoma community. Our friends, Carter Finger and Lillie Boyte, both became angels. Carter was diagnosed within a few months of Morgan and we spent many days at Memorial Sloan Kettering with his family while Morgan and Carter received antibodies. Lillie lived here in Winston Salem. I never met her or or family personally, but I did speak with her mother on the phone quite a bit in the early days of Lillie's diagnosis. Please keep both of these families in your thoughts and prayers. Also, our friend, James, has been placed on Hospice care. Please pray for James and his 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
God Bless,
Allison
Wednesday, August 8, 2007
Hello Friends,
I guess I am way overdue for an update. Things have been sort of busy and hectic around here and I have not had much of a chance to sit down and compose an update. Well, here it is (finally).
As of today Morgan has been off treatment for 2 years, 3 months, 3 weeks, and 3 days. She is now 1620 days post-transplant. Praise God!
July is a great month for us because we have so much to celebrate. The last time I updated I was in the process of recovering from gall bladder surgery. I am happy to say that I have fully recovered. It was a pretty easy recovery, which is a good thing considering my children did not understand the fact that I had to be so inactive – especially Lyndon. I saw my surgeon on July 13 and got a clean bill of health and permission to resume all activities.
Morgan, Holden, and Lyndon enjoyed a week of Vacation Bible School at Center Grove from July 15-20. It was a wonderful experience. I got to see first hand how awesome it was because I volunteered as a tour guide. I had a group of 20 kids that I took from place to place. It was amazing to see what was being done to teach young children about the Lord.
Lyndon has now officially entered the “Terrible Two's”. She turned 2 on July 19. We celebrated with her father coming home for lunch and bringing Happy Meals and cupcakes for the kids. Lyndie is certainly a wild child. She does things that my other two never dreamed of. For example, she took my cell phone and forwarded my calls to a foreign country. Like an idiot, I discovered this after I called Verizon to find out why my phone would not ring. I have come to the conclusion that the third child begins life being quiet and passive because they realize they are the low person on the totem pole. But, they quickly learn that they need to be seen and heard in order to get attention. Lyndon certainly does that. She is very sweet, but she is hard to handle at times.
Grandma Vicky took Lyndon in for her two-year checkup. She only had to get one shot and she got a clean bill of health.
Morgan turned 8 on July 25. It is hard to believe that she is already two years away from double digits. We celebrated her birthday spending the day at the pool with the McLeod children (and Heather) and then going to Chuck E Cheese that evening with the entire McLeod family. My kids had a blast and Morgan really enjoyed her special day.
Jerry and I flew to Las Vegas on July 26, which was our 10 year anniversary. We had a great time, but we missed the kids a lot more than we thought we would. Our favorite parts of the trip were the Grand Canyon and Hoover Dam. We are just a little too old for hard partying these days, so we were in bed pretty early most nights. Not to mention the fact that our bodies stayed on East Coast time. It was nice to spend some time alone together and we are very appreciative to my parents for keeping the kids for us. We did decide that when we go somewhere for our 15th anniversary that we will probably want to take the kids with us.
We came home from Vegas on the 31st. We did not talk much about it, but that was the 5 year anniversary of Morgan's cancer diagnosis. I remember so vividly those days in early August of 2002. We were not sure if Morgan would even make it to her fourth birthday. The Lord has blessed us with 5 wonderful years of beating cancer. Unfortunately, Morgan is an exception in the world of neuroblastoma and not the rule. There has been a lot of sadness recently in our community of cancer fighting families. Please say a few extra prayers for Lillie, James, Carter and so many other families.
Morgan had an appointment with Dr. Castellino on August 1. Dr. Castellino is the late effects specialist at Brenner. I like her a lot and she has a great rapport with Morgan as well. Morgan had a great check-up and Dr. Castellino's greatest concern was that Morgan right leg is quite a bit longer than her left leg. You may remember that back in October 2003 Morgan fell at the Ronald McDonald House in NYC and broke her right femur. Since Morgan was a cancer patient, the orthopedist in NY decided that it would be best to operate on Morgan's leg rather than put her in a cast. At the time, it was suspected that the break was caused by a cancerous legion on the bone so surgery allowed the doctor to biopsy the bone and it meant that a cast would not interfere with radiation if Morgan needed it. Fortunately, Morgan did not need radiation because the broken leg was nothing more than a broken leg. However, we were told at the time that putting a pin in the leg could cause the right leg to be longer than the left. But, we both assumed that it would be a rather insignificant difference. Well, it is more significant than we thought. Morgan has a regular check-up with her orthopedic surgeon here in NC next month. I guess we will have to discuss what needs to be done about this leg issue.
Morgan also had a hearing test done on August 1. The good news is that her hearing has remained stable over the last year. She does have high frequency hearing loss but she does not need hearing aids at this point. She will have another hearing next next year just to make sure that her hearing does not change significantly.
We spent the first week in August trying to get all of Morgan's medical appointments in prior to school starting. On August 2, she had her 8 year check-up. Everything checked out well there as well. I found out that she is in the 35th percentile for both height and weight. This is good because her weight is perfect for her height. However, this is just another one of those side effects of having cancer. Morgan was always in the 95th percentile for height and weight prior to receiving cancer treatment. But we are just happy that she is with us, even if she is a little shorter than most. Sometimes it is hard to get past all of the things that affected Morgan in a negative way. But, I quickly forget about that when I think about all of the children who became angels because of neuroblastoma.
I went back to work on August 6. The kids were happy to get back to summer camp at Center Grove. Their school starts on August 22. We have had a great summer, but I think we all enjoy getting back to the routines of school and work.
Holden does not get much press during the August update because the girls have July birthdays. But, Holden is doing just great. He is looking forward to kindergarten. Holden has matured a lot in the last few months and he has actually attained the status of my “easy child” I think that all three of my kids are terrific, but Holden has so much patience with both of his sisters. He is a very kind child and he sincerely tries to help out in any way he can. He is fascinated by math and loves to solve problems that I write out for him. He also loves coloring and playing with his army men. He is still “all boy” but I noticed when Morgan was away at camp in June that he is actually a lot quieter than he gets credit for being.
Tomorrow Morgan is going to start seeing a new psychologist. Jerry and I met with him once and we were both very impressed. He specializes in kids with ADHD so we are hoping that he can help Morgan be more socially adequate. To be honest, the older she gets the more I wonder whether or not she has Asperger's Syndrome. Morgan had a neuropsychological evaluation done in early 2006 and it was suggested in that report. I am seeing more and more of those characteristics in her and am anxious to see what Dr. Edwards, the psychologist, has to say about that.
The other big piece of Barnes family news is that we have officially put our house on the market. On July 6, a house 3/10 of a mile from our house had a “For Sale By Owner” sign in the yard. This is a house that Jerry and I have always admired. To make a long story short, we inquired about the house and found out that the man who owns it has actually rented it until April 2008. So he wants to sell it, but they will not be able to close on it until around June 1. We decided that this was a perfect arrangement for us because it gives us time to sell our house. We made an offer and it was accepted. Now all we have to do is sell this house. We are trying to sell it ourselves for a few months before we list it with a realtor. I am not the most patient of people so I have to keep telling myself that it will all work out in God's time.
I guess that is all for now. I am not sure how many people still follow Morgan's page but I still really enjoy writing it. It is a good exercise for me to sit down and review the last month's activities and I hope that someday this will be a nice gift for my children to read about their lives. For those of you who are still with us, thank you for your continued love, prayers and support. It has been a very tumultuous 5 years. There have been lots of tears and worries, but I would be more likely to define this road and being filled and hope and faith in our Lord, Jesus Christ. May He bless you all.
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
God Bless,
Allison
Tuesday, July 3, 2007 7:38 PM CDT
Hello Friends,
Happy Independence Day!
June was a rather eventful month. I would like to say that I hope that July will be a bit quieter for us. But, we have two birthdays and an anniversary this month so it does not look like it will be a very quiet month.
Morgan has now been off treatment for two years, two months, two weeks, and four days. She is now 1592 days post-transplant. God has been so good to our family.
The kids enjoyed their two weeks of summer camp at Center Grove. My last day of work was June 14. Since then, we have all been enjoying our summer vacations. I return to work on August 6 so they will get about two more weeks of summer camp before they return to school on August 22.
We have been dealing with a few summer time viruses here in the Barnes home. At this point, I can’t even remember which kid got sick first. I think it was Holden. He started with a stomach virus, which lasted through the night, but he was fine the next morning. A few days later, I got the same stomach virus. Unfortunately, I was much sicker than Holden. It took me a whole weekend to get over it. It started with stomach pains on a Wednesday night. The following Saturday, I went to the doctor. The doctor suspected it was related to my gall bladder and recommended that I schedule an ultrasound to have it checked out. (More of that story to follow). I was not able to get off the couch until Monday morning and was not able to eat until about Tuesday. It was horrid. Lyndon was next in line and finally it hit Morgan. All three of the kids were just sick for one night and had none of the same problems that I did. They all recovered fairly quickly.
Then, all three of the kids got upper respiratory infections, which are just now clearing up. It seems like they have been coughing forever. The only child who had to go to the doctor was Lyndon because her cough was accompanied by a fever so I wanted to make sure that her ears were okay. Her ears were fine, but it took her forever to get over it.
Holden’s t-ball season ended on June 9. Unfortunately, he was not feeling well during that game so he did not attend the end-of-season celebration that followed the game. But, he did get a nice trophy that he is proud of. We are enjoying the down time right now because he is between sports. He has asked to play soccer again and I think he will start playing in August.
Morgan’s dance season also came to an end. She had her recital on June 15. She did an amazing job. We were very proud of her. She is not taking any classes this summer so it is nice that she gets to have a short break. Her classes will resume after Labor Day. Again, the break is very nice.
I took Morgan to Camp Victory Junction on June 18. She was so excited and I was so nervous. She kept telling me not to worry about her that she would be fine. I tried explaining to her that I had never left one of my babies anywhere before, but she kept telling me that she would be okay. So, I composed myself and left her in the loving hands of the staff at camp. Well, Morgan was right. She had a terrific time and did not miss us at all. The picture at the top of this page was taken of her the day we picked her up. She did not have any episodes of homesickness the entire time she as at camp. However, she did cry in the van after we picked her up because she missed her favorite counselor, Anna Kate. Camp was very good for Morgan and I am very proud of the fact that she went and handled herself so well. Camp Victory Junction is an amazing place and our family is very thankful for the work that they do.
During the week Morgan was gone, I had to have an ultrasound of my gall bladder done. This was done on June 20. On June 22, I met with my doctor who suggested that I see a surgeon. Apparently, I had some gallstones and my gall bladder did not look that great on the scan. I scheduled an appointment with the surgeon on June 28. However, we had a trip to the beach planned and I had to pick up a child from camp so I put this out of my mind.
On June 23 we picked Morgan up from camp and kept driving to the beach. We enjoyed a nice vacation at the beach from the 23rd until the 27th. We spent a lot of time by the pool and by the sea. We relaxed a lot. It was always wonderful spending quality family time together on vacations.
We came home from the beach and quickly resumed our busy routines. I met with Dr. Koontz, the surgeon, on June 28. He confirmed that my gall bladder did indeed need to come out and it needed to come out quickly. Therefore, I was scheduled for surgery the following day. So I had surgery on June 29, was released from the hospital on June 30 and have been recovering at home ever since. I am feeling a little better with each day that passes. I am in less pain today that I have been in and I am hoping to be in even less pain tomorrow. Today was the first day that I had to stay home with the kids alone because my mom took care of me yesterday. I managed but I am thankful that Jerry has tomorrow off since it is a holiday. Hopefully by Thursday I will be totally recovered and I can resume my daily schedule of taking the kids to the pool. As of right now, I can’t drive because of the pain meds. I meet with the surgeon in two weeks, but I don’t expect any problems since I have been recovering fairly quickly.
July is a busy month for us. Lyndon will be 2 on July 19. Morgan will be 8 on July 25. On July 26, Jerry and I will have been married for 10 years. We are taking an anniversary trip to Las Vegas and are excited but I know we will miss the kids. My parents have graciously agreed to take care of our kids for us. That is a very nice anniversary gift for us. We were planning on taking a trip for our 5th anniversary, but of course, neuroblastoma cancelled that one for us. July 31 will mark 5 years since Morgan’s cancer diagnosis. Time is really flying by.
The new pictures are from the day we picked Morgan up at camp and from the beach.
Thanks for all the love and support you have given our family for the last five years. Look for another update in a month or so. Until then, may God bless you all.
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
God Bless,
Allison
Monday, June 4, 2007
Hello Friends,
I hope everyone’s summer has gotten off to a terrific start. We are very blessed in the Barnes household and rejoicing in the fact that Morgan is finished with scans. As of today, Morgan has been off treatment for 2 years, 1 month, 2 weeks, and 6 days. She is now 1563 days post-transplant.
May was a good month for us. Morgan had her last dance class on May 22. The rest of the class had the last day on May 29, but she was out of town. Morgan is really looking forward to her recital, which is June 15. I am going to make sure that I take lots of tissues. One of her dances is to a song about being Daddy’s little girl or something like that. I think it is a country song by Tim McGraw. I saw the rehearsal and I completely lost it. It did not help my emotions that I watched her do this the night before we left for our most recent NY trip. Whenever I go to one of her recitals, I am amazed to see her up on stage with those other little girls. She is truly a miracle. I hope she is able to understand and comprehend someday that God gave her a gift and that she has a responsibility to use her life as a testimony to Him.
Poor Holden had to have two cavities filled this month. This was his first negative dental experience. He always does a very thorough job of brushing his teeth so Jerry and I were a bit surprised that he had two cavities. His dentist did not want to do them both on the same day since so he had to have three appointments this month. His first was on May 2, and then we went back on May 16 and May 22 for the fillings. Holden is happy to be finished with the dentist for 6 months.
Holden is still in the midst of his t-ball season. It is amazing to see how much he has improved since the beginning. He has his last game this Saturday. He does not know it but he is getting a trophy. I am sure that will thrill him.
Morgan and Holden finished their school years on May 23. Morgan had her field day on May 1 and Holden had his on May 16. I was able to take the day off from work on both days to spend these special days with them. They also had an awards assembly on May 23. Morgan won two awards. She received a reading award and she was also recognized for maintaining A’s and B’s the entire year. Jerry and I were very proud of her.
Unfortunately, my last day of work is not until June 14. Last week, Morgan and Holden occupied their time with a trip to the beach with Grandma and Pawpaw. They had a terrific time and came home very tanned and rested. This week and next week they are going to the summer program at Center Grove. I have made it a point to call it camp instead of school because I did not want to confuse them. I think they will get to go on a few special field trips this summer.
Lyndon is also attending the summer program at Center Grove. She started on May 29. This is the first week of having all three children there. I am sure Lyndon will get a kick out of seeing her brother and sister. Lyndon’s weekly report stated that she was a joy and she really enjoyed music class.
Morgan is two weeks away from her big trip to Camp Victory Junction. She is very excited and I am still very nervous. I missed the kids terribly last week when they were at the beach with my parents and I know I will miss
Morgan even more when she is at camp. I know that she needs this in order to develop some skills, but I worry about her so much. Making friends is not always the easiest thing in the world for her, but she does tend to do better when she is around other kids who have had cancer. They just seem to understand each other. Please say a few extra prayers for Morgan from June 18-22. I hope she has a good experience at camp.
As always, thanks so much for your faithful prayers and support. This has been a long, hard journey but your prayers brought us so much comfort. May God bless you all.
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
Thursday, May 3, 2007
ANOTHER UPDATE MAY 18
Morgan's bone marrows were perfectly clean. We are praising God and thanking Him for the healing that He blessed our daughter with. More good news -- NO MORE SCANS! We received word from Dr. Kushner yesterday that scans are no longer necessary on a regular basis. He would like to do a yearly physical exam and urine tests and only scan if there is reason to suspect something. It is hard to believe that this long journey has finally come to an end. God is good -- all the time!
UPDATE MAY 14
We are home and have resumed our usual busy lifestyles. This trip to NY was one of those hectic ones full of schedule changes and delays. Morgan even had not one, but two, MIBG scanning machines stop working while she was in the process of being scanned. We have the results of the CT and MIBG and they both look great. We are still waiting to hear from the bone marrows. They were not biopsied until Friday, so it is not unusual that the results are not back yet. Keep praying for good news and I will let you know something as soon as I hear from Dr. Kushner.
Thanks for your continued prayer and support!
Hello Friends!
Happy May! The weather has finally gotten warm again and we are enjoying North Carolina sunshine.
Morgan has now been off treatment for 2 years, 2 weeks, and 3 days. She is 1531 days post-transplant.
Morgan is staying busy with all of her usual activities. She has added play practice to her already busy lifestyle. She is going to be in a play at church on May 20 so practice is in full swing. I think she is an “extra” for this show, but she is just as thrilled as if she had the lead. She is also getting ready for her dance recital, which is June 15. They got their costumes a few weeks ago. Morgan was not very happy about the fact that the outfits are yellow, but she looks beautiful in it just the same. In fact, I think it looks a lot like Belle’s dress in Beauty and the Beast. I am sure I will be posting pictures of it in the very near future.
Speaking of pictures, I have posted new ones in the photo albums. These are the kids’ Easter pictures. I thought they were lovely, but I am a bit biased.
Holden is still really enjoying t-ball. Sometimes he loses focus and ends up playing in the dirt, but for the most part he is doing well. The games are about 1 hour and 30 minutes, which I think is a little long for 5 year olds. His indoor soccer season ended on a good note, and he played really well the last few games. I must admit that I was happy to see the season end because it was very hectic having him play two sports.
Morgan was baptized on April 15, which was the two year anniversary of her last 3F8 treatment. It was so touching. Morgan is a very spiritual child and she really took her baptism very seriously. Jerry and I are very proud of the fine, Christian young lady that she is becoming.
This past weekend was absolutely wonderful for our family. We went to Family Weekend at Camp Victory Junction. It was such a great weekend. The kids had a ball and Jerry and I always enjoy seeing our kids be so happy. Morgan has been accepted to attend Victory Junction in June. I am a bit nervous about sending her off to camp all by herself, but she is very excited about it. Plus, on some level I think it will be very good for her. Morgan is very independent in some ways, but very dependent in others. She missed out on a lot of developmental milestones due to the timing of her cancer diagnosis. There were things that she simply did not learn to do because at the time she was too sick to do them. Jerry and I have spoiled her a bit and have always been willing to step in and make up for her deficits. We think that it will be good for her to be on her own in a controlled environment and perhaps she will become a little more independent. Plus, the camp is very close to our home so it is not like I am sending her a million miles away. She will only be about an hour away and even though we can’t have contact with the campers while they are at camp, it will still be nice knowing that she is not that far away. Holden is a bit jealous that he is not going to camp, but I have told him that he may bet the opportunity to go when he is 7. Victory Junction has a sibling week, but campers must be 7 to attend camp.
Lyndon is just a wonderful as ever. She is such an energetic little girl, but she is also very happy. We have decided to move up her enrollment at Center Grove. Her last day in her current daycare will be May 25. Morgan and Holden get out of school on May 22. Center Grove has a summer program which starts May 29. Lyndon will start the summer program on that day. We love Ms. Irene and have been thrilled with the care that Lyndie received while there, but it is just going to be more convenient for us to have all three children in the same building.
We are preparing ourselves for our upcoming trip to NY. We will be flying out of Charlotte in the afternoon on Wednesday, May 9. We should arrive in NYC just after 3:00. Morgan is having bone marrow biopsies and aspirates done on Thursday morning, a CT scan on Friday, and the MIBG scan on Saturday. We should arrive back in Charlotte Saturday evening. Please pray for travel mercies and for all tests and scans to come back in Morgan’s favor. Also pray that Lyndon will take it easy on Grandma and Pawpaw since she is not traveling with us.
I will do a quick update after all the test results are back. Thanks for lifting our entire family in prayer.
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
God Bless,
Allison
Thursday, April 5, 2007
Hello Friends,
HAPPY EASTER! I hope this latest update finds everyone doing well. We have been enjoying the beautiful spring weather here in North Carolina, but unfortunately a cold front has caught up with us and it looks like we have to endure a few more days of winter. This always happens after I switch out everyone’s spring and summer clothes. Now that the winter clothes are tucked away in boxes in the attic, the weather decides to cool down.
Morgan has now been off treatment for 1 year, 11 months, and 3 weeks. She is 1502 days post-transplant. We are so very blessed by the healing that God provided for Morgan.
Holden is staying very busy playing both indoor soccer and t-ball. T-ball seems to be his favorite sport so far. He is playing for the Royals and he is looking forward to his first game on April 10. He seems to be enjoying soccer as well. He scored a goal in the last game and was very excited about that.
Morgan is keeping herself busy with dance class. They are preparing for their big recital in June. She keeps telling me that it is going to make me cry when she dances. Little does she know, I cry every time she has a recital. Back in July 2002, when I learned that my little girl had cancer, I honestly did not think that dance recitals would ever be in her future. I remember sitting in a room at Brenner Children’s Hospital and making a call to her dance studio to tell them that Morgan would not be able to attend her classes. But, here we are almost 5 years later and her fourth dance recital is right around the corner. God is good – all the time.
Morgan did have one doctor’s appointment in March. She had to see the eye doctor. Dr. Castellino, Morgan’s late effects specialist, recommends that Morgan see an ophthalmologist once a year because chemo can cause some damage to the eyes. Morgan has 20/20 vision and her eyes are in perfect shape. We will do it again next year and pray for the same great results that we had this year.
On March 11, Jerry and I officially became members of Center Grove Baptist Church when we were baptized by immersion. We are very happy in our new church home and are particularly thrilled with the spiritual growth that has taken place in our children. They are developing a very strong foundation of faith. Center Grove has been a blessing to us in so many ways. The academy has been very good for both Morgan and Holden. We are looking forward to having all three children enrolled there next year.
Morgan is scheduled for baptism on April 15. I did not realized it when we set this date, but that is the two year anniversary of Morgan’s final 3F8 treatment. She has now survived for two years with no treatment at all. Another example of just how wonderful the Lord is. This date was not selected randomly, but it is a wonderful testimony to what He has done in Morgan’s life.
Lyndon is as busy as ever. She had her first haircut on March 14. She did it with absolutely no tears. It did not faze her in the slightest. My other two children were not very happy about getting their first haircuts. Lyndon handled it like a champion. Lyndon has also begun to express some interest in using the potty. When I went up in the attic last weekend to bring down those summer clothes, I also brought down the toddler potties that were up there. Lyndon immediately declared that she needed to potty. We stripped her down, and sure enough she did it. She has used it a few more times since then. We are not getting our hopes up. If you have been following our story from the beginning, you will remember what a challenge it was to train Holden. I do not plan to push Lyndie in anyway. I am letting her call the shots on this one because potty training Holden was such a disaster.
On March 27, I took Holden to Lewisville School for a speech assessment. His speech just does not sound quite right to me and I wanted to stay on top of this since he is going to private kindergarten next year and private school generally to not offer this type of services to their students. The biggest issues that I was noticing were that he says “to-gever” rather than together and “every-sing” instead of everything. It turns out that his speech is perfectly normal and the sounds that he is having difficult with are seven year sounds which means he should have them mastered by his seventh birthday. I did find it humorous when I took him back to preschool and told his teacher where we had been she said, “Yes, his speech is normal. He just has a northern accent”. Well, Jerry and I (as well as our parents and all of our grandparents) are North Carolina born and bred. Holden has not spent any significant amount of time from anyone from north of the Mason Dixon line. When I pointed this out to his teacher she told me that she just noticed that I did not have that same accent. She said that she could have sworn that we were from Michigan based on the way Holden talks. I have always assumed that you get your accent based on the way you hear others speak. Apparently, Holden has been spending quite a bit of time with a family from Detroit that I not am yet to meet.
On March 22, Morgan took the stage in yet another theatrical performance. In kindergarten, she had the roll of a clown fish in the school play. At Christmas, she was a shepherd. Well, recently she had the part of a squirrel in Center Grove’s rendition of Little Red Riding Hood. She did a smashing job. And thanks to my co-worker, Lisa Roberts, she had a fantastic costume. There is nothing about me that is crafty. Had it been up to me, I would have put Morgan in a gray sweat suit and declared her a squirrel. I mentioned to Lisa that Morgan was in a play and she made a very realistic looking squirrel costume. Morgan was so proud of the costume and Jerry and I were very proud of her. Thanks again Lisa for making Morgan so happy!
The kid and I are in the midst of enjoying our Spring Break. I have this week off from work and the kids are out of school until April 10. I took the kids to see the new Disney movie, “Meet the Robinsons”. Grandma Vicky decided to go along with us. The kids loved the movie, Grandma Vicky – not so much. It was not one of my favorite Disney movies, but it made the kids happy.
We are just over a month away from our next New York trip. We are flying up on May 9. Morgan is having bone marrow biopsies on May 10, a CT scan on May 11, and an MIBG scan on May 12. We are flying home after the MIBG scan. Please keep us in your prayers. Please pray for safe travel for me, Jerry, Morgan and Holden. Also pray that all of Morgan’s test results come back in her favor. And, keep my parents in your prayers. They will be keeping Lyndie while we are gone and she can be quite a handful.
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
God Bless,
Allison
Monday, March 5, 2007
Hello Friends,
March already! Life has been crazy busy around our house.
Morgan has now been off treatment for 1 year, 10 months, 2 weeks and 4 days. She is 1471 days post transplant. On February 20, we quietly remembered that Morgan was celebrating her four year transplant anniversary. I am thinking that we should do something pretty big next year when she hits the five year mark. Maybe we should do a blood drive in her honor. If anyone has any suggestions, please feel free to list them in the guest book or email me.
Morgan had a few doctor’s appointments in February. On February 7, she had a routine appointment at Brenner Children’s Hospital. She had to have pulmonary studies, an echocardiogram, and then an appointment with Dr. Castellino, the late effects specialists. I am assuming that everything was normal with her pulmonary studies and the echo. No one has informed me otherwise. Her appointment with Dr. Catellino went well. The doctor had no concerns so we were in and out of there pretty quickly. She had blood counts done as well and everything came back looking good.
The children had a good month filled with lots of birthday parties. On February 2, Grandma Vicky celebrated a birthday. We had Grandma and Pawpaw over for dinner on February 3. The kids always love spending time with Grandma and Pawpaw. Their cousin, Rachel, turned 4 on February 7. Her birthday is always special to me because she was born just prior to Morgan going into the hospital for transplant. I remember taking Morgan to see her in the hospital just after her birth and wondering if Morgan would live long enough to develop a relationship with her “Girl Cousin”. I must say that Morgan and Rachel are big buddies now despite the almost four year age difference between them. Rachel at a party at the gym and the kids had a ball. Our buddy, Tanner McLeod, turned 2 on the 11th so the kids got to go to another party. We had another party yesterday at my parent’s house to celebrate my father (Pawpaw) turning the BIG 60. Today is his birthday and today, March 5, is also the four year anniversary of Morgan being released from Duke Hospital following her transplant. That was really the last major hospitalization that Morgan has had, with the exception of when she fell and broke her leg.
Morgan also had an appointment with her pediatrician this month. I made the appointment because it was one year ago that she was diagnosed with ADHD. Since she has been taking Ritalin for a year, I wanted to check out her growth and discuss whether or not she needs a change in her dosage. Morgan has grown over the last year, but it has been rather slow. She is in the 50th percentile for weight and the 25th for height. But, she has grown enough that Dr. Franklin does not see the need to take her off her meds, which can sometimes slow growth. We did decide to leave her on the same dosage, but we change her prescription to an extended release.
Holden played his first indoor soccer game this past Saturday. He did really well and his father and I were both very proud of him. I have made a bit of a scheduling faux pas. I signed Holden up for little league t-ball thinking that it would start in the last spring / early summer, after indoor soccer ends. It actually starts closer to NOW. It is going to be very interesting to see how we pull off having Holden involved in two sports, plus Awanas, plus Morgan’s dance class.
Holden is very excited about being a kindergartener next year. They had kindergarten assessments at his school last week and he has told me several times just how great he did. He told me that he answered all the questions, and he answered all of them very fast.
Lyndon is doing great as well. I have filled out all of the paperwork to get her enrolled in Center Grove Preschool for next fall. I can’t wait to have all three of my children in the same school. Although, we will really miss Mrs. Irene. She has been so good to Lyndon and Lyndon just loves her.
Lyndon is just as wild as ever. Her favorite activity is throwing a ball. She loves to throw them, especially when you are not looking which sometimes causes pain (especially when she finds a ball that is not age appropriate for her). She also loves climbing. She is my only child who is not interested at all in anything on TV, except for football games. Since it is not football season, the TV does not catch her eye. She is a very happy baby.
As you know, we are headed back to NY in May for scans and tests. Please remember us in your prayers. We will be leaving on May 9th and coming home on May 12th. Holden is going with us, but Lyndon will have her first overnight adventure at Grandma and Pawpaw’s.
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
God Bless,
Allison
Saturday, February 3, 2007
Hello Friends,
It is hard to believe that the first month of 2007 has already passed us by. I guess this year is going to fly by just as quickly as 2006 did.
As of today, Morgan is 1 year, 9 months, 2 weeks, and 5 days off-treatment. She is 1442 days post-transplant. On the 20th of this month, we will celebrate the four-year anniversary of Morgan’s stem cell transplant. There is no doubt about it; the Lord has certainly blessed our family. We praise Him everyday for restoring Morgan’s health and giving us each and every precious day.
January got off to a scary start for the Barnes Family. On the morning of January 3, Morgan told Jerry that her leg hurt. She was acting like she felt fine, so Jerry did not really think much else of it. Later that evening, she told me that her leg hurt and the one that hurt had a bump on it. Of course, this sent me into panic mode. I jerked up her pants leg and started searching furiously for the lump. The only thing I could find was that her entire muscle on the sore leg seemed to be swollen. I was tempted to rush her off to the emergency room at that very moment. But, I managed to collect my composure and just see what happened. When I picked her up from school the next day, she told me that her leg was still hurting her “sometimes”. I immediately called her pediatrician and they told me I could bring her in. I dropped the other two kids off with my mother and called Jerry. He was not as panicked as me, but I think he was concerned because he offered to meet us at the doctor’s office. In a nice coincidence, we ran into Susan Cain in the office. Grace Cain is a fellow neuroblastoma warrior and her parents have been so supportive of us since Morgan was diagnosed. Just seeing Susan helped to calm me down a bit because I knew that she comprehended fully everything I was experiencing. She understands that this monster never really gives us a moment’s rest because it was always looming in our subconscious. Susan and her younger daughter, Laura, were seeing another doctor in our practice.
I knew full well that there was really not much that the pediatrician could tell me. It is not like you can simply look at a child and confirm or disprove a relapse of neuroblastoma. But for my sake, Dr. Franklin examined her leg and asked Morgan lots of questions. He did not feel any types of bumps or lumps. I also asked him to run a CBC to give us some idea if something strange was going on in her bone marrow. Her counts came back great. I decided at this point that I would give Morgan another week and if she was still complaining after that time, I would get her oncologists involved. Morgan really has not complained since. I am thinking that since she had dance class the night before, perhaps she pulled a muscle or something.
Jerry and I officially made the decision last month to join Center Grove Baptist Church. As you may remember, we have been members of River Oaks Community Church for over 7 years. River Oaks is a great church and we dearly love all of our friends who are there. But, we decided that we wanted to go to a church that had traditional Sunday school classes for adults. We visited Center Grove back in May when we were trying to decide if we wanted the kids to attend school there. We enjoyed it so much that we just kept going. Neither Jerry nor I have been baptized by immersion, so that is the last thing that we have to do to make our membership at Center Grove complete.
Holden’s basketball season wrapped up on January 11. I think he was happy that it was over. He kept asking when he could start playing soccer again. We are anxiously awaiting a phone call from his soccer coach to let us know that the indoor season is officially underway. It should be a lot of fun for him because Heather and I have requested that he and Madison be on the same team.
Lyndon turned 18 months old on January 19. She had a check-up on that same day. She is still tall and skinny. She is in the 95th percentile for height and the 50th for weight. The PA said that she is the size of the average 2 year old. She had to have one shot, which made her very unhappy. She got a clean bill of health, which is always nice to hear. Of course, two days after our visit she came down with a nasty cold and cough. I suspected that she would get an ear infection, but she never did. It took her awhile to beat it but she seems to be feeling better now. Of course, she passed it along to her brother and sister but they tolerated it much better than she did.
Other than that, January was a rather routine month for us. It seemed like the kids had lots of birthday parties to attend. February will be a bit busier. Morgan has a few routine medical appointments and we have a few more birthday parties too.
We have already scheduled Morgan’s next set of scans. We are heading back to New York on May 9. Morgan will have bone marrow biopsies done on May 10. A CT scan on May 11 and an MIBG scan on May 12. I am assuming that if all goes well with these scans that Morgan will be put on a yearly scanning schedule. Holden loves New York and the spring is such a nice time to go. Therefore, we have decided that he can go with us. Lyndon will stay behind with Grandma and Pawpaw. She is at a very difficult age so traveling with her is no longer really easy.
Please keep Lillie Boyte in your prayers. She is another little girl from Winston-Salem with neuroblastoma. She is having a rather difficult time getting her bone marrow to clear. Also, pray for Carter Finger. Carter is our buddy from Pennsylvania. He was diagnosed within a few month of Morgan and he is having a very difficult time right now, as are his parents. And pray for James Runde. James is our friend from Greensboro who is getting ready to head back to MSKCC for scans. Pray that this family receives wonderful news.
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
God Bless,
Allison
Monday, January 1, 2007
Hello Friends,
BE SURE TO CHECK OUT THE NEW PICTURES IN THE PHOTO ALBUM!
Happy New Year! We hope that everyone has a 2007 that is abundant with blessings from the Lord.
December was a fabulous month for our family. It was wonderful to be able to take time out of our busy lives to reflect on the birth of our Savior, Jesus Christ. But, I think that we are all ready to get back in the swing of things and back on our normal routines. The kids had a fabulous Christmas. Morgan and Holden love school and I think they are looking forward to going back in the morning.
As of today, Morgan has been off treatment for one year, eight months, two weeks, three days. She is now 1409 days post transplant.
Lunch for Life was a tremendous success. Thanks so much to all of you who contributed. Morgan finished with 580 ornaments on her tree. She had more ornaments this year than last year. Thanks so much to her contributors:
Teresa Alexander, Robert Amoroso, Lyndon Barnes, Holden Barnes, John Beal, Elease Bostic, Penni Bradshaw, Ann Callicutt, Judy Childress, Kelley Cox, Mark Espeland, Melanie Franks, James Freetly, Monica Gattshal, Johnny Gibson, Ken Gibson, Heather Helton, Leora Henkin, John Hepler, Melinda Hire, Dewey Hylton, Mary Beth Hylton, Karen Jarvis, Wayne & Lisa Kennedy, Pam Kins, Pam and Scott Kins, Michael L., Juli Lamberth, Neoma Lane, Christy Litaker, Andrea McGuire, Steve and Michelle Minnich, Ruffin Morgan, Pete & Vicky Morgan, Rebecca Neiberg, Seth Pitts, Eva Saxon, Sidney Shadley, Jerry Shadley, April Smith, Amy Smith, Michael & Tammy Snow, Jill Stone, Rebecca Briles Tuttle, Vickie Whetzel, Wendi White, Mike & Billy Willis, Terri Windham, and Penny Woods
The campaign has raised approximately $248,210.00 to help fund neuroblastoma research. Thanks again for your help. This money will go directly to finding a cure for this horrible disease.
The most exciting non-Christmas activity that happened to our family in December was Morgan’s accident on the playground. On December 20, she was happily playing with her classmates after lunch when she collided with another student. Morgan fell into a piece of playground equipment and knocked her upper front teeth loose. She was in a lot of pain and very upset by the whole ordeal. We took her to the dentist just to make sure that there was no nerve damage or anything. The dentist ended up pulling those teeth. Therefore, Morgan was officially able to sing the song “All I Want for Christmas is My Two Front Teeth”. I noticed today that one of the permanent teeth is already starting to come in. This kind of surprised me because that lower tooth that she lost back in October is still not showing signs of being replaced by a permanent tooth. Morgan looked really rough for a few days because the accident caused her to bust her lip. Her mouth was quite swollen for a while. Fortunately, she healed rather quickly. If you look at the photo album, you can see a picture of Morgan’s new toothless look.
Morgan has also made a very important decision recently. She told us that she is ready to ask Jesus into her heart. It was one of the sweetest, most touching moments that I have ever experienced as a mother. She is now asking to be baptized so I guess we will make arrangements to do that very soon.
Holden is doing great. Santa brought him a new bike and he is riding like a champion. We will probably be removing the training wheels by the end of summer. His behavior at school seems to have improved but I think that may have been in an effort to make sure he was on the “Good List”. The real test will be ahead of us now that Christmas is over and Santa is not watching him quite as closely.
Lyndon has officially made the transition into the Wild Child category. She is into everything now. She loves to climb and I am afraid that we will be taking her to emergency room very soon if things continue at their current pace. She tries very hard to keep up with her brother and sister, which is quite challenging for her.
Thanks to all of you who are continuing to check on Morgan and the rest of our family. Please sign the guestbook and let us know that you were here.
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
God Bless,
Allison
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |