|
|
Barrett Thomas Harris daughter of Neal and Audrea Harris granddaughter of Wanda Harris & Teddy and Janie McCain Born May 25, 2003 |
|
|
|
|
|
|
|
Barrett was diagnosed with acute lymphoblastic leukemia on Tuesday, September 16, 2003. Blood Drive - Tuesday, December 16, 2003 Update Tuesday, November 25, 2003 (6 months old)
8:00 am - Good Morning Prayer Warriors! Sorry for the late notice, but we came home on Sunday night from the Hospital. Barrett is doing wonderful and we have to go to clinic on Wednesday for our weekly Doctors visit. I was having to give Barrett a shot in her leg once-a-day that would help her start making white blood cells and as of Sunday evening I no longer have to give her that shot. Let me tell you, giving her that shot hurt me more than it did her. It got to where she barely cried when I gave it to her. She is so tough. I hope she never remembers any of this. The only thing that made giving her that shot easy was knowing that I was doing something to help her. Next week will be a really busy week for us, we have to be in Nashville everyday except Thursday, hoping that we do not have another run to the emergency room. Many of you have asked what she thought of the Christmas tree and when she woke Friday afternoon, that is when she started running fever and did not get to enjoy the tree. When we came home Sunday night, I turned it on for her and she just stares at it. I think she really likes it because it catches her attention. I have decorated it mostly with angels because I feel that she has many angels watching over her. This Thanksgiving, remember to be thankful for what you have and not what you do not have. If you have your health and your family, you cannot ask for anything more. Neal, Barrett and me are going to stay home and be thankful that we have this time together. I keep telling myself next year will be better and I will have a lot more to be thankful for. A healthy child and family to share it with. Also, remember families that have loved ones over in Iraq during this Holiday Season. Sometimes I feel ashamed of myself for having a pity party but I pick myself up really quick and get over it. I feel sorry for Barrett and myself because these Holidays are her first and not at all what I had planned for her. I have to remember this is part of God's plan and I should not question it but go along with it. This helps me get through those pity parties. I am human, what can I say. Please continue to pray that Barrett will have a full recovery. Mom
Sunday, November 23, 2003 3:00 pm
- Good Afternoon Prayer
Warriors! What a weekend. Friday night about 6:30 p.m. Barrett started
having fever. Her temperature was 100.9 so we had to go back to Vanderbilt.
When we arrived at the emergency room, this is where we have to go
to be readmitted, it was about 7:30 p.m. The nurses immediately put
her in a room in the e.r. and started taking blood for cultures. So
far, her cultures have not grown anything. Please pray they do not.
As of right now, we should get to go home about dinner time if Barrett
continues to do well. Barrett's fever broke before
they started her on antibiotics and by 9:00 p.m. she was smiling and
cooing again. With Barrett's immune system so low, she can be fine
one minute and running fever the next. It is very important to get
her to the hospital immediately when this happens. Due to the fact
that there were no mylosuppression rooms available, we stayed in the
e.r. until 11:00 a.m. Saturday morning. We were exhausted but the
e.r. staff tried to make us as comfortable as possible. Barrett continues to amaze
me. She is a child that can adapt to any environment. She rested very
well Friday and Saturday night, and as adults, Neal and I were exhausted,
but as long as Barrett was with us, she was perfectly happy. My Mom
and Dad stayed with her Saturday night and she entertained them along
with her nurses on the fifth floor. The nurses were happy to see there
baby and could not get over how good she looked. They said they were
prepared to treat a sick baby and when they took one look at her,
they asked, "What are you still here for?". One of the nurses in the e.r. asked what Barrett's white blood count was when they discovered her cancer and I said, "Have you heard of the baby that had a white blood count of over one million?" and he said, "Yes, we have heard of her. She is very famous in this hospital". I wanted you to know this conversation occurred because, no one, and I mean no one expected Barrett to survive this far. This shows you and me how much the Lord is in control here and how important your prayers are.
Friday, November 21, 2003 3:45 pm - Good Afternoon Prayer Warriors! Sorry that I have not written in such a long time, but as I have had Amie Joye update you, I have been so busy with Barrett. We have been to clinic everyday this week and will probably go everyday next week, except for Thanksgiving. Please pray that Barrett's blood counts will start coming up and that when she has her bone marrow and spinal tap test on December 2, 2003, that she will be in remission. I have seen many sad things this week at clinic and it is a shame that most adults never see these things. I can promise it will give you a new perspective on life, but the most amazing thing is that these children have the best attitudes. There is a lot to learn from this situation and I hope I never forget these lessons. To give you an update with what is going to happen to Barrett over the next couple of weeks, I have outlined that information below: December 2, 2003 December 5, 2003 December 8, 2003 December 9, 2003 December 16, 2003 Barrett's potential donor was scheduled for her physical today and pray that all goes well for her donor. The donor has been given four dates to choose from for transplant and they are December 15, 16, 22, and 23, please pray for all of the above. We have a very long road ahead of us and it is so hard to know that less than a month from now Barrett will be very sick again. We have taken so many steps forward and will take a few steps back. Please pray for my child, I love her with all my heart, and I need my Prayer Warriors now more than ever! As I decorated Barrett's first Christmas tree and placed the ornaments on it that have been given to Barrett during her illness, I thought of each of you and how special you are to me. I will never forget who gave the ornaments to Barrett and I will think of you each year at this time as I hang them on her tree. I have a story to share with you. Today while waiting in the hallway at clinic, I met a man whose daughter might have leukemia. The little girl is 21 months old and she is a very cute and busy child. As this father told me their story through tear filled eyes, he told me he was angry. This man is a Christian and I feel that his faith is very strong but it is hard even for the strongest person not to be angry when their child is sick. Anytime your child hurts you want to take their pain, that is part of being a loving parent. I told him, “Please do not be angry, that God has a plan for us and this is part of his plan”. Please pray for this family. Mom Personal note to Barrett As I decorate your first Christmas tree, I think back one year ago and remember how excited I knew I would be this time this year. Your first Christmas, and how I looked forward to your first expression of all the lights on the Christmas tree. You are sleeping now and when you awake your first tree will be decorated, just for you. As everything I do is just for you. You are such a curious child, you are not my snuggle bunny anymore. Once you started pushing up, while on your tummy, you have not stopped. You make me feel so good, every time I approach you, you just grin and your arms and legs move 90 miles an hour. We have been to clinic everyday this week and I have learned there is so much to be thankful for, even during your illness. Barrett, you are like any other normal baby, by looks and development. You are not a sick child to me, you are perfect and please know one thing, I would not trade you for anything. You are my blessing and I will take you anyway that I can have you. As I have written to you before and as I will continue to write either in your journal or by computer, there are lessons in life that I want you to have. The lessons that I want to teach you, I want to write them down in case one day I am not here to teach them to you. One thing that I have learned through your illness is that “life can change in a split second”. Always remember to live life to its fullest. There is a saying, Love like you have never loved, dance as if no one is watching, and I forget the last line but I promise to get that for you. As I mentioned earlier about being in clinic everyday this week, I have seen so many sad things at clinic. I have seen many children that are very sick, all of them sitting in chairs receiving chemo, and it took my breath away. I have seen children that look normal and others that were very hard to look at and I thought “you think you may have it bad, but someone else has it worse”. Barrett you are so fortunate, everyone that looks at you, says how pretty you are and you just smile and coo! You have such a wonderful personality and you always behave so well. Always remember that children that are different, they may not look normal or they may have a learning problem or they may be different for some other reason, please remember that God made all of us the way we are and we are all special. Those that are different are more special and God made them that way. Please do not disappoint me and make fun of those who are different, take up for those people and remember that they are extra special. Please do not disappoint me on this because you never know what will make you different from everyone else. With Love,
9:30 am - Mom says Good Morning to all the Prayer Warriors! Barrett had another wonderful night at home. Barrett will go back for another clinic visit today to have more bloodwork done. She may have to receive platelets. It is very important that her platelet count stays up due to the fact they don't want it to get below a certain number. If it goes down, they worry she could suffer bleeding of the brain again. One of Audrea's best friends, Stacy, bought Barrett a Christmas tree. Audrea hopes to decorate it this weekend. They can't wait to see her expression when Barrett sees it for the first time. Please continue to pray for a full recovery. Your prayers are greatly appreciated. Amie Joye
Thursday, November 20, 2003 8:45 am - Mom says Good Morning to all the Prayer Warriors! Barrett continues to do well at home. The family is on their way to Nashville this morning for another clinic visit. Barrett needs a blood transfusion because her counts are down. Please pray that her counts will start to go back up. As I was talking to Audrea, I could hear Barrett in the background fussing. Apparently, Barrett has the hiccups this morning and they've made her quite ill. Mom says Hello and hopes to write soon. Amie Joye
Wednesday, November 19, 2003 9:50 am - Mom and Dad had another good night with Barrett. They are scheduled to be in clinic most of the day today. They are doing bloodwork on Barrett and making preparations for her transplant. Please continue to pray that Barrett will not get any infections while she is at home and that she will have a full recovery. Mom asks that I pass along her apologies for not posting updates. Barrett's medicine and feedings have her extremely tied up. She misses writing to all of you and she hopes to drop a line soon. Mom also asks that you be reminded how important your prayers for Barrett are because Barrett continues to need her Prayer Warriors. Amie Joye
Tuesday, November 18, 2003 9:10 am - Good Morning Prayer Warriors! Barrett is good and she's adjusting well to home life. Mom says it's like having a whole new family. Mom has been keeping busy feeding Barrett and keeping up with all of her medicine. Please continue to pray for Barrett to have a full recovery. The donor will have her physical this week. Please pray that she passes her physical and that everything will fall into place with the donor. Amie Joye Monday, November 17, 2003 11:15 am - I just wanted to let everyone know that Barrett, Mom, and Dad got to come home yesterday. All are doing well. Please remember that only healthy grandparents are allowed in the house with Barrett. I'm sure Mom will update us later when they get back from the clinic at Vanderbilt. Please continue to pray for Barrett to have a full recovery. Amie Joye
Sunday, November 16, 2003 10:45 am - Good Morning Prayer Warriors! We had a very busy Saturday getting Barrett ready to go home on Sunday afternoon. If all continues to go well she will not have to come back into the hospital until four weeks from November 10, 2003. She has started feeling better and continues to laugh and talk nonstop.
Please continue to pray
that Barrett will survive transplant, that the transplant will work,
and that she will have a full recovery (without a relapse). Mom
Personnel note to Barrett:
Friday, November 14, 2003 10:00 am - Barrett is very uncomfortable this morning and she is not feeling well. Please pray that she will feel better and that she will have a full recovery. If Barrett feels better later, Mom will try to update us. Amie Joye
Thursday, November 13, 2003 11:00 am - Barrett and her Grandmother had a good night. Barrett is in a good mood this morning. She is playing and helping the nurses when they take her vitals. Her white blood cell count is up. Continue to pray her counts will stay up so that the family can come home this weekend. She will receive another chemo treatment today. Barrett is still continuing to amaze her doctors. Amie Joye
Wednesday, November 12, 2003 7:45 am - Good Morning Prayer Warriors! Sorry that I have not written since Friday. Barrett has been doing very well and has become very "high maintenance". In other words, we are spoiling her by holding her all the time. I mean all of this in a good way. We would not have it any other way. To let you know what has been going on, Barrett is still eating very well and continues to change everyday. We had a wonderful weekend, just like anyone else would have except it was in a hospital room. Barrett started Day 36 of her chemo treatment on Monday and had a spinal fluid chemo treatment also. She had her second day of chemo on Tuesday and so far Barrett is tolerating this chemo treatment well. If Barrett continues to do well, we may get to come home on Saturday. Our family received the "worst case scenario" speech from the Transplant Doctor on Monday. The words were very hard to listen to and we are still recovering from that meeting. Many of you have asked what the process will be so here it is. Three weeks from Monday, November 10, 2003, Barrett will have her bone marrow tested again, along with her spinal fluid, to determine if she is in remission. Barrett will also undergo a series of tests to make sure all her organs are healthy and will be able to tolerate the transplant. Please pray that she will be in remission and Barrett's organs will stay healthy and continue to be healthy throughout her transplant. Four weeks from Monday, November 10, 2003, Barrett will start receiving high dose chemo therapy and radiation to get her ready for transplant. Please pray that Barrett will do well from this chemo and radiation and that she will not suffer any side effects from the radiation for the present and the future. Five weeks from Monday, November 10, 2003, Barrett will have her bone marrow transplant. Please pray that everything will fall into place with her bone marrow donor, that her donor will pass her physical, and that her donor will be able to meet this schedule. Please pray that the transplant will take and will cure Barrett and that Barrett will have very little GVHD (Graft versus Host Disease). And please pray that she will not have to go on a ventilator or back into the ICU. It is my understanding that the donor has not been contacted yet, but that this will start to happen within the week. After our meeting on Monday, we had a hard time dealing with the information we received. Barrett has done so well that we hope this is a sign that she will continue to do well. The Doctors refer to Barrett as their "little fighter". They continue to be amazed by her and I do know that some of them think that she is a miracle. Some of the Doctors will tell you that they did not believe she would make it this far but the Lord has shown us that He has other plans. We still have a very long and hard road ahead of us and your prayers are desperately needed. The Doctors remind us of how sick Barrett is and I tell them, "I do not look at my child and think she is sick, she is perfectly healthy in my eyes". And then I remember that Barrett is fighting for her life everyday. I know I must appear naive but my child is acting like any other normal baby and as a mother she will always be perfect in my eyes. She is my gift from God. The only thing that I ever think I have done right. When I left the meeting on Monday, the wind had been let out of my sails. I knew if I got a good nights sleep, tomorrow would be a new day. I have to remember God is in control here and this is out of my hands. I truly believe this and I continue to give God my worries, just as I have done in this situation. There is nothing that I can do here except pray and spend my time with my precious daughter. If Barrett does not survive this, I will have been blessed with time with her when otherwise, I would have been at work. I thank the Lord for everyday He gives to me to be with her. As we enter the Holiday Season, please do not forget the families at the Ronald McDonald House. If you would like to do something for those families, the number to the RMH is 615-343-4000 and you can call to see how you can help. Neal, Barrett, and I were selected, to be one of the families, to be in a video that is shown at benefit dinners for the new Children's Hospital. That video was taped on Monday and hopefully, we will see a copy of it in the next couple of weeks. We were honored to have been selected to be a part of a wonderful cause. Barrett has also been chosen to be on the calendar for the new Children's Hospital and that photo will probably happen next week. Please continue to pray that Barrett will have a full recovery. Mom Personal Note: As you lay in my arms, as I write to you, I want to let you know how much you are changing everyday. You are pushing up now when you lay on your stomach and you continue to be very nosy. You come by this honest. You have lost all your hair from your chemo treatments and you are as pretty as you have ever been. You have even lost the patch of black hair at the base of your neck. You continue to meet your developmental milestones and you have been an absolute blessing to me. I could watch you 24/7 and never get tired of watching you. Every time you do something for the first time, you would think you just won a marathon. You love playing with your Tigger. He is one of your favorite toys. You are at the age that everything is starting to go to your mouth. Your father and I love you more than we can ever express to you and know that we are always here for you. We will love you no matter what and you should always remember this. No matter what mistakes you make, remember that we have made mistakes also and we are not here to judge you but to guide you and hope that you make the right decisions in life. I would give everything up, that I have worked so hard for, just to have you. I have learned through your illness how unimportant material items are. You cannot measure someone's wealth by there belongings but by their friends and family. As I have said before, "your father and I would be millionaires if we were to measure our wealth by our friends and family". We are so fortunate. Please remember how important family is, not just your immediate family, but your church family also. One of my hopes is to teach you how important your faith is because my faith is what is getting me through your illness. Love,
Tuesday, November 11, 2003 8:45 am - Barrett and Grandmother had a good night. She is playing and smiling this morning. Day 36 chemo started yesterday. Barrett has gotten sick once but other than that, she has been fine. Please continue to pray that Barrett will have a full recovery and that everything will work out with the bone marrow donor. Mom will update us later today. Amie Joye Monday, November 10, 2003 9:00 am - Grandmother and Barrett had a good night. Barrett is eating well and her milk is not seeming to fill her up. This is a good thing that she is eating so well. Day 36 chemo treatment and a spinal fluid treatment will be done today. The Day 36 treatment will be one treatment for the next 5 days. Please pray that Barrett will be able to tolerate this treatment and that she will do so well that the family will get to come home this weekend. Amie Joye 2:55 pm - Day 36 chemo has been postponed until Monday. Please pray that her counts will be up on Monday so that she can start the treatment. They will do a spinal fluid chemo treatment on Monday as well. Please pray that the bone marrow donor will fall into place and that Barrett will have a full recovery. Barrett has been rewarding Mom and Dad with smiles, grins, and coos all day. Amie Joye
8:15 am - Barrett slept through the night so Grandmother and Barrett had a terrific night. Barrett woke smiling and playing and she has been eating well. She is supposed to start Day 36 chemo treatments today. This will be one treatment each day for the next 5 days. Please pray that she will tolerate this chemo very well. Mom and Dad got word that they may get to come home Wednesday or Thursday of next week. Mom asks that you please remember that only healthy grandparents will be allowed inside the house. Please pray that Barrett will get to come home for the short period before she has her bone marrow transplant. Amie Joye
Thursday, November 6, 2003 12:30 pm - Barrett had a good night and is having a good day. She is playing, cooing, and smiling. If her health continues to do well, day 36 chemo will start on Friday. It will be a week series of chemo treatments each day. Pray that Barrett will tolerate the treatments. Mom and Dad will have a meeting with the bone marrow transplant doctor on Monday. Please pray that all goes well with the meeting and everything will fall into place with the bone marrow donor. Amie Joye
Wednesday, November 5, 2003
8:25 am - Mom asked me to tell you that our prayers are being answered. Barrett has gotten no mouth sores with this last chemo treatment she had. Prayer Warriors, keep up the good work! Barrett had a wonderful night last night. She is playing with a bright yellow smiley face balloon this morning and having the time of her life. Amie Joye
8:00 am - Good Morning Prayer Warriors! What a busy day yesterday was. Neal and I had a lot of information to digest. We received information regarding the upcoming bone marrow transplant. We should know within 24 hours if one of the ten of ten matches will work out for Barrett. There is so much involved in this that I cannot go into every detail but I need you all to pray that everything will fall into place with this donor and that Barrett will hopefully start the transplant process early to mid-December. That is what the Doctors are hoping for if everything falls into place. First thing, Barrett has to be in remission, please pray for this. Second, she has to be in good health, nutritionally, physically, and emotionally and cannot have any infections. Please pray that all this will happen for her also. And most important please pray that she will survive the transplant and have no complications following the procedure. If Barrett can get through the first six months, after transplant, she has a good chance of not relapsing. When a year goes by, after transplant, we can breath an even bigger sigh of relief. We have to remember Barrett has a very rare disease at her age. As one of the Doctors stated yesterday, "I have only seen her illness in four or five infants over the last five years at Vanderbilt". This is in the Lords Hands and even though I am human, I still worry to an extent, but I know the Lord is in control here and I am leaning on him now more than ever. I know what ever happens to Barrett she will always be my messenger from God. I have been blessed with these wonderful days with her, when otherwise, I would have been at work and away from my precious child. That is the positive side of the coin. I know the Lord has a plan for all of us and I pray that He will use me to do his Will. Life is a precious gift from God, please remember this. If you are having a bad day or even a bad week, I can promise that things will get better. You will laugh again and even look back on this difficult time and realize that things were not so bad and that things could have been worse. In the beginning of Barrett's illness, as I looked at her and thought how could things be worse and then there would be another child that was even more sick than Barrett. This year as the Holiday Season comes around we are going to be making plans to be in the Hospital. Barrett's first Christmas. I remember last year this time thinking, she will be seven months old at Christmas and how much she was going to enjoy the lights from the Christmas tree. Well, this year there will be no Christmas tree and I am not going to be sad about it because our family is about to really learn what Christmas is all about. I do not mean to mislead you, we know what Christmas is about, but we are all guilty of getting caught up in the Season that we forget. Well not this year, we are going to be blessed with a real Christmas and be happy for us. Please pray for Barrett and that she will have a full recovery. Mom
Tuesday, November 4, 2003 9:30
am
- Good Morning Prayer Warriors! Barrett had a good night after her
long day yesterday. She had a full day of X-Rays due to the fact that
her stomach started swelling. The X-Rays showed everything to be as
it should be and time will take care of the rest. She is rewarding
her Grandmother with many smiles and grins this morning and as always
wrapping her sweet nurses around her little pinky. Barrett weighed 12 pounds 11 ounces yesterday and she is changing so much everyday. We are continually blessed with good news regarding Barrett's improving health and I know all the credit goes to God's Healing Hand and all of your prayers being answered. Thank you from the bottom of my heart for caring about my child. Be sure to check out the photo gallery for additional Halloween pictures of our little pumpkin. Mom
Monday, November 3, 2003
10:00
am
- Good Morning Prayer Warriors! Barrett and her Grandmother had a
very long night last night. It is her third day after her Day 29 chemo
treatment and Barrett is not feeling well. The mouth sores appear
to be coming back and she has started itching again. The Doctors started
giving her "rescue drug" yesterday to remove the Day 29
chemo treatment. We hope that the lab work, that is to be done at
11:00 a.m. this morning, will show that the Day 29 chemo treatment
it out of her system. This is the same procedure that she went through
last week from Day 22 chemo treatment. Barrett weighs 12 pounds and 11 ounces today. I will have pictures posted of Barrett in her pumpkin outfit by tomorrow. Please continue to pray that Barrett's mouth sores will not get worse, that she will start feeling better, and that she will have a full recovery. Mom
Saturday, November 1, 2003 11:20 am - Good Morning Prayer Warriors! Barrett had a very
busy day yesterday. She received Day 29 of her chemo treatment and
she also received a spinal fluid treatment. We have already started
her morphine drip again and she is resting comfortable. September 2003 | October 2003 | November 2003 | December 2003 | January 2004 February 2004 | March 2004 | April 2004 | May 2004 | June 2004 | July 2004 | August 2004 |
|
|
|
|
For questions regarding this website, click here.