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Barrett Thomas Harris daughter of Neal and Audrea Harris granddaughter of Wanda Harris & Teddy and Janie McCain Born May 25, 2003 |
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Barrett was diagnosed with acute lymphoblastic leukemia on Tuesday, September 16, 2003. Send Molly (the donor) a Message Tuesday, December 8, 2009 4:15 pm - Hello Prayer Warriors! Many of you comment that you have missed seeing updates and pictures of Barrett, so I thought I would share with you how much Barrett has changed and how much we have to be thankful for. She is doing wonderful. She is a healthy six year old little girl who many say is just like me. As much as I hope that is not true, honestly I would be a much better person if I were more like her. Barrett is in Kindergarten this year and has many friends. Her favorite things to do are color and draw pictures for all her loved ones, play Barbies and eat chocolate. She is petite for her age and she struggles with that because so many kids either baby her or tell her she is too little to play with them. All I can do is re-enforce that she is the way God made her and she is the way He wants her to be. We still have a very special relationship with Molly, Barrett’s bone marrow donor, Molly and her family are now part of our family and what a blessing that has been. Barrett goes for her six year post-transplant test in December and it is so hard to believe that our journey has been going on for this long. This time of the year is always filled with emotion for everyone, we are so busy with our schedules and counting down the days for Christmas, I know for me the season is gone as quick as it came. With all the lessons I learned through Barrett’s illness, I am ashamed to say that most are just a memory. I have forgotten who should come first in my life and it is during this time of the year that all those emotions and memories come flowing back. The laundry that has to be done, the chores, and dinner and then you here that tiny sweet voice say, “Mommy can you come play school with me, or Mommy can you read to me”. Barrett was always my teacher and I have forgotten some of the most precious lessons she ever taught me, we forget that yesterday is just a memory and tomorrow will soon come, our future is what we make of it and then time continues until tomorrow becomes a memory too. Every year as the Christmas Season approaches I face an emotion that I do not think words will ever be able to describe. Barrett was given a second chance at life just six years ago, by a stranger. That person was unselfish to their holiday plans because of the healing process after donation. The gift that Barrett received and the gift the donor gave to us was worth more than the entire world’s gold. I will never forget the feeling of thinking about not having Barrett here for her first Christmas and all “the first” that I was robbed of with Barrett, but all that goes away when you know someone cared enough to want to save your daughter. I remember wanting to take her pain away and all I felt was helpless and useless. What a horrible feeling that was for me and all of our family, but we stayed strong and she fought the battle. As Barrett’s mom, I will never be able to give back all that was given to us, but the “giving season” and this time of the year is so full of emotions, both happy and sad. Happy knowing that we have traveled through the good times and bad and Barrett is healthy. Sad knowing that many families are traveling down the same path that we once traveled and emotionally I feel that helplessness and useless feeling again. Remembering all the sweet little soles that have passed on and I will never forget their strength and courage and how they smiled as they fought their battle. How much I take for granted yet I seem to forget those who have given more in their short lives then I will ever give in mine. Happy knowing that Barrett has eye sight, balance and all her other motor skills and received no brain damage from the strokes, knowing that God created our bodies to overcome some of the challenges our bodies have to go through. Knowing that I have a special memory of Barrett’s baby dedication in that small hospital room when we were given little hope of her making it though this hurdle. Sad remembering me and my Dad discussing Pallbearers and funeral arrangements and thinking how could life get any harder than this, all along knowing that she and I were not ready to give up when everyone else was, medically speaking. Happy knowing Barrett started making white blood cells six days after her transplant, what a gift our family received that day, an answered prayer. Our second enemy conquered and many more to follow in her battle for life. Sad knowing that the patient in the next room still was not making blood cells after his transplant and yet his optimism was still there as the snow flakes fell from the winter sky that Christmas Day and he stated, “look at all the white blood cells falling from the sky”. There will never be a snow fall that our family will witness and not think of how special he was in our lives. Happy knowing that Christmas represents God’s gift of His only Son, and that we should always remember that Christmas is a time for giving, just as God did for us. So as I could list many more examples of why this time of year is so full of emotion for me, I can honestly say I know the true meaning of what is feels like to have been blessed. Mom
Update Thursday, December 6, 2007 3:30 pm - Merry Christmas Prayer Warriors! All is well with Barrett. Can you believe we are going on four years from transplant? There truly is light at the end of our continuous journey. Molly, Ben and Baby Edie are doing well and getting ready to celebrate their first Christmas. In a couple of weeks we will go to Clinic for our four year post transplant tests, it is amazing what I have seen and learned in four short years. I have witnessed God’s Healing Hand, the power of Prayer, learned the blessing of every breath that is taken and met many courageous little souls. As we fast approach our Christmas Season, I look back on four years and reminisce of the gift my child received from a total stranger. I remember writing the following letter to someone that I did not know and thinking what better gift to receive from someone, “selfless and giving”, so appropriate for the Christmas Season. Of the many lessons that I have learned from our journey one is I would rather give than receive, because the gift Molly gave Barrett can never be topped. December 17, 2003 When Dr. Frangoul has me speak to other families and they ask me a question about what they are experiencing with their situation, I realize right then how much I have chosen to bury deep within my memory. If would be a waste of energy to dwell on the worst of times when there is so much to live for in the present. I hope everyone will remember during this Holiday Season to be grateful for all the little things we have been blessed with. I for one know that life can change in a split second. Even with what I have experienced I still find myself doing that load of laundry and telling my child, “just a minute” when all she wants me to do is show me a rainbow that she has drawn. By the way, one of her favorite things to do is draw and color. One day those opportunities for my undivided attention will be gone, like a dandelion in the wind. I will forget what it smells like to rub baby lotion on my sweet Barrett, and to clean up a mess from her many artworks, and most of all I will miss her saying, “Mommy, give me a hug”. Life at a young age is so innocent and beautiful, especially when you remember to see things through a child’s eyes. Remember to watch fireworks in all their glory and try not to think that it is just another Fourth of July. Remember the smell of fall when tobacco is being fired in the barns. Always allow your child to help decorate the Christmas tree and when they place the ornaments to close together, remember how beautiful it is, instead of how gaudy it may look. It is their own little masterpiece and one day the help with decorating the Christmas tree will be gone out the door as she waves goodbye to go shopping with her friends. We have to remember to stop and give our children hugs as well as all our loved ones because the most endearing and memorable gestures can be the ones that did not cost a single cent and truly came from the heart. Barrett continues to be my little teacher and even I am guilty of forgetting to stop and smell the roses, so as I write this in our journal it is to help me remember that time continues on and what was yesterday is just a memory. We have a Santa in the house and 25 candy canes hang from it, one candy cane gets removed each day and I ask Barrett, “what happens when all the candy canes are gone”, and she replies, “Santa Claus comes to visit and brings me surprises”, and then I ask, “whose Birthday is it” and she replies, “Baby Jesus”. Barrett recently went with us to the funeral home, one of my best friend's father had passed away. As Barrett and my friend discussed why her father was sleeping, Barrett mentioned to my friend, “He has gone to be with Baby Jesus”, just another sweet memory that may one day be forgotten. Children can keep us young at heart but make us feel old at the same time but the sweetest things to the most unbearable stunts Barrett may do, I never want to forget, so I will write them and know that she will forever have my thoughts.
My dearest Barrett, You are my whole world and sometimes the end of the line with my patience; if I was not honest about that I would not be human but Super Mom. You are amazing, you have this ability to make me smile, laugh and cry all at the same time. I love the way you crinkle your nose when you smile, I love the way you continually tell me you are my best friend, I love it when your big blue eyes look at me in a way that says, “Mommy I need you” and know that it is a privilege to have been blessed as your Mother. Today we hold hands when we walk down the street or in a public place and you look so proud to be with me, how many more years will I have that luxury? When will it just be a memory that when I see you in the morning, you take both your hands and place them on my cheeks and give me a big wet kiss, I never want to forget feeling that special. You will forever be my hero, you have endured things so that other children may live, and yes you have sacrificed but know whatever we face we will face together, as a family, and the decisions that we made about your health four years ago were to save you. There will come a day that you may possibly be angry for what you had to endure and how it may affect you, but our decisions at the time were for your best interest. We were told of the consequences of our choices but we wanted you to live. We love you and if I teach you anything, I hope to teach you that we can overcome any obstacle with faith and trust in God. I love you my sweet little Barrett,
10:15 am - Barrett's story is on the Vanderbilt website. You can view her story by clicking here. Once you have opened the site, drag to the second page and click on Barrett's picture. Enjoy! Amie Joye
Wednesday, August 1, 2007 3:30 pm - Hello Prayer Warriors,
Congratulations to Molly and Ben! Today a new life took its first breath and according to her Daddy, “she is perfect”. I think he says that because in the picture she looks just like Ben. Our new addition will be named Edith “Edie” Cynthia, she weighed 7 pounds and 14 ounces and is 19.5 inches long. The only way that I know how to express how excited I am for both Molly and Ben is to put in it words, and that is “you have met the love of your life”. Elizabeth Stone stated, “Making the decision to have a child - it's momentous. It is to decide forever to have your heart go walking around outside your body”. The feelings that I have that I would like to share so that I never forget this special day is that I have cried tears of joy. I wish somehow I could bottle all this excitement that I have feeling in my heart and save it for days when the sun does not shine so bright. I asked my Mom, “I wonder if this is what it feels like when your sister has a baby?” I guess Molly is the closest that I will ever have to a sister, next to Amie Joye. I remember when my nephew Trey was born and how excited we all were, but I guess somewhere through our journey I have grown to realize how special life really is and what a blessing from God life is and every breath that we take, from our first to our last. I know in my heart that I have always known life is a blessing, but when your child is so close to dying, trust me you have a new reality on life. I have stated many times that Molly is our “hero”; I have stated that a hero in my opinion is, “someone who gives selflessly and does not think of themselves”. Molly's gift of bone marrow saved Barrett's life and when that someone who has given so selflessly to your child, something that you as a parent cannot give to your own child, it can be more emotional than words will ever be able to express. Now that Molly has experienced motherhood, I hope she can understand what her “gift of life” has meant to me and Neal. God bless our little Edie, Molly and Ben. Audrea
Thursday, July 26, 2007 1:00 pm - Hello Prayer Warriors! I know much time has passed since our last update. Barrett is doing wonderful and I hope many of you continue to pray for our little messenger from God. Barrett is a vibrant, sassy little handful. Don't get me wrong, she minds and is very considerate of others. She has a lot of her father's personality when it comes to other people's feelings and she has my trait of “I want to pull one over on you”. I have always said God must teach a class for all us little girls in heaven called, “Twist me around your finger 101”. Barrett is 31 inches tall and weighs about 31 pounds, she is petite but she is the way God wanted her to be. She is perfect because she is mine and Neal's child and the only thing we would have done different is change places with her when she was so sick. Now she is our free entertainment, no cost, just sit back and see what comes out of her mouth next. She is big into numbers and letters and will start Pre-K this fall. I know many of you, as you read this, will be shocked how much time has flown by, but we are so blessed to be here. Some exciting news, Molly is pregnant. She and her mother came to Clarksville for a Baby Shower and both Molly and the future bundle are doing well. Molly and Ben are expecting a little girl. I feel as if my sister is fixing to have her first baby. We all have an amazing connection and feel blessed to know that our family has increased in size. I laugh at some of Barrett's funniest sayings and when she sees a Car Wash, she always asks, “Mommy are we going to that dishwasher, because I do not want to”; she opens a pack of lifesavers and says, “look zeroes”; and then the best, one night she is getting ready for dance, she places her hand on her hips and starts dancing, when asked what she is doing she replies, “Daddy, I am shaking my booty”. I have attached several new pictures just so you can see how much she has changed. She loves to swim, she loves walking around the block with MeMac and Pops, and she loves her Kim and Jordan. She is an amazing little girl and she continues to be my teacher in life. I have stumped my toe several times lately by making bad personal decisions, but I am trying to see life through a child's eyes and get my perspective back and remind myself of the lessons I learned during Barrett's illness. Her favorite foods are Doritos, Chicken nuggets, macaroni, tomatoes, grapes, and oranges just to name a few. She eats and that is still all that matters. We will take one step everyday to a better diet for her. Please continue to email me. Love,
Wednesday, January 11, 2006 8:00 pm - New pictures in the Photo Gallery. 11:15 am - Merry Christmas Prayer Warriors! Thanks for the many requests for an update. Barrett is doing wonderful. I tell everyone, “she is two and sassy”. What a blessing! We have completed our two year anniversary tests from the transplant and all the diagnosis shows that Barrett is still in remission. Can you believe it has been two years since her transplant? The two year anniversary date was a huge milestone (12/18/2005). Dr. Frangoul stated that the chances of having a relapse from leukemia drop significantly if Barrett did not relapse within the two years from her transplant. HAPPY TWO YEAR ANNIVERSARY to Barrett and Molly. Everyone asks if we keep in touch with Molly and the answer is “YES”! I asked her the other day if it felt like two years ago that she was undergoing procedures to prepare her for the donation of her bone marrow to Barrett. Even she was surprised how quickly it has passed. So much has gone on since I last updated. Barrett has changed, continues to meet developmental milestones, and I think the pictures speak for themselves. We look at pictures and cannot believe how much she has changed. Even from getting off of all her immune suppression medications have changed her looks. Her appetite continues to improve and everyday there is another new word coming from her mouth. As any parent can tell you, it is amazing when you can start having a conversation with your child. They become a whole new individual, another phase of their life. Barrett visits clinic once every eight weeks now and it has been a hard adjustment to me the further our visits get. The clinic visits were always a “safety net” for me. Dr. Frangoul always assured me that I would notice if Barrett relapsed before the lab results indicated anything. Who would ever have guessed that I would care to read blood work or even understand what it meant. But anyone who has walked in our shoes knows that when your child has a serious illness you do more than you knew you were ever capable of learning or doing. Barrett and I are planning a trip to see Molly and meet all her family and friends. I am so excited and cannot wait to see how Barrett interacts with Molly during this visit. She had just started walking and becoming very busy when Molly and Ben came to Tennessee for their first visit. I think Molly will be the most surprised in all her changes. There are pictures of Molly and Ben all over our house so her face is no stranger to Barrett and of course she says, “Molly” ever so cute. God truly blessed us with a very special donor. It is like we have known her all our lives, and Molly's and Barrett's personality match so well. I carried Barrett for nine months and gave her life; Molly's selfless gift gave Barrett a second chance at life. How many Mothers are blessed to have someone in their life that gives such a selfless gift to a total stranger? Knowing that there will be nothing in return, hoping that you some how made a difference in someone else's life. There is no way to ever thank someone enough or to show them your appreciation. Any Mother will tell you that your children mean more to you than anything else on earth; you would die for them, protect them and always love them no matter what. Please continue to pray for Barrett to remain cancer free. Prayer is a powerful thing; all of you have made a difference in Barrett's life. Without God's healing hand, Barrett's Prayer Warriors and all her Doctor's and Nurse's, Barrett may not be here today. So just like Molly's gift, every one of you have played a role in Barrett being where she is today and I will truly never be able to say “Thank You” enough. Love,
Wednesday, June 30, 2005
1:45 pm - Hi everyone – greetings from Dallas. I just wanted to take a second to let everyone know what a great time Ben and I had this past weekend in Clarksville. We felt welcomed and accepted by Audrea and Neal’s family and circle of friends. It was a weekend I will surely never forget. Getting to hold Barrett for the first time was such a special feeling, the conclusion to a year and a half of waiting. It is still hard for me to grasp the idea that donating my bone marrow saved her life, but hearing stories about Barrett’s illness and recovery, and getting to see life overflowing from her little body really helped make it all more real. I now feel that through her, my little blood sister, Ben and I have gained a second family in the Harrises and McCains. Thank you to everyone who so openly welcomed us with kind words, hugs, and gifts.
Sunday, June 26, 2005
9:00 pm - Good Evening Prayer Warriors! If you've been keeping up with the website, then you know we finally got to meet Molly this weekend. Of course, Ben too. Both are wonderful people and Barrett could not have had a sweeter, kinder donor. Audrea will fill us in on all the details later but we wanted to go ahead and share some pictures on the website of Molly and Barrett. They had a photo session while she was in town. We hope you enjoy! Amie Joye
Wednesday, June 22, 2005 10:00 am - Good Morning Prayer Warriors! Barrett continues to do well. She is even walking. There's no stopping her now.
Thursday, June 9, 2005
1:00 pm - Hello Prayer Warriors! There are new pictures of Barrett in the photo gallery. Barrett is doing wonderful and as her pediatrician stated, “she acts just like a normal two year old”, she threw one of her temper tantrums during her two year check-up. Well, I know I have kept you in suspense about Barrett’s Donor for long enough.
Her name is Molly and she is 28 years old, she was 26 when she donated her bone marrow to Barrett. We have talked and will soon meet her and her husband Ben; they are coming to visit the weekend of June 24, 2005. It goes without saying how excited we are! I have received many emails from her friends and they say how lucky we are to have her in our lives, they comment on her wonderful personality and how she lights up a room when she enters. All I can say is, “Barrett definitely has those qualities and I can already see things that people describe about Molly in Barrett”.
Please feel free to email Molly; she would love to hear from you. Amie Joye has set up an account for anyone to email her through this website. Be sure to check out the picture of Molly and her husband and their two boxers. When I talk with Molly, I feel as if I have known her for a long time, her personality is so exciting, and I feel so blessed that my daughter has a part of this wonderful person inside of her. I carried Barrett for nine months and gave her life; Molly gave a wonderful gift and gave Barrett a second chance at life. How can anyone not want to be a donor?
I do not think anyone can understand my emotions when I think of Molly. We are such a close family, and the fact that our family continues to get bigger is just one of the blessings in life. Molly and Ben and of course the two boxers will forever be part of our family. I look forward to walking through my house and seeing pictures of her and my daughter together. I know only good things have and will continue to come from this precious relationship.
Through our journey I have met many people, and I have met many heroes. On Tuesday, I had the wonderful opportunity to ride with Vanderbilt Life Flight. I have enclosed a letter below that describes my feelings about the people I met and about my exciting day, please feel free to read and be a part of my experience with Life Flight.
Please continue to pray for Molly and for Barrett and that she will remain cancer free.
Mom
Dear Jeanne,
On Tuesday, June 7, 2005, I had the opportunity to participate in the ride-along program with Vanderbilt Life Flight. I met three very special individuals and had one of the most wonderful experiences of my life. Marsha, Steve, and Mike Taylor were wonderful to work with and I commend them on a job well done.
Mike, Marsha and Steve’s job not only consist of being a medical and flight team but also public relations for Vanderbilt. I was amazed to watch how they work together as a team and the respect they showed for not only each other but for others that they came into contact with throughout the day, regardless of the position that person held. Vanderbilt Life Flight is very fortunate to have been blessed with these “Angels in the Sky”.
In case, you are not aware of my interest in Life Flight, on September 16, 2003, my four month old daughter was flown from Gateway Hospital to Vanderbilt. My daughter Barrett’s flight nurses that day were Sandy and Michael Gooch.
I will always believe that Sandy and Michael played a large role in the fact that my daughter is still here today. Yesterday, I had the privilege of meeting Sandy one of my Life Flight Heroes. I can only say that it was very emotional for me to meet her and I will never be able to express in words how truly thankful I am to Sandy, Michael, and Vanderbilt Life Flight.
Along with my experience yesterday, I was able to visit with Brad and Robert of the Flight Communications Center at Vanderbilt. This provided for a much larger perspective as to how everything comes together, from when a call comes in to Life Flight to the arrival on the Helipad. It is very obvious that Life Flight is not just the medical personnel, but a much larger team that has made Vanderbilt Life Flight one of the best in this Country.
We are so fortunate to live in an area that has this outstanding service available to us, along with a group of professionals dedicated to making it what it has become and where it will go from this day forward.
So few of us can go home at the end of the day and say, “I made a difference today, I helped save someone’s life”, but every member of your team played some role in that outcome, whether they were hands on or not, and that has to be one of the most rewarding jobs anyone can have.
I look forward to meeting you on the night of June 20, at the Life Flight Fund Raiser Dinner and hope somehow that our participation in the video will have helped in some small way. “Our family is committed to making others aware that this does not just happen to other families”.
Sincerely, Audrea McCain Harris
Thursday, May 26, 2005 8:00 pm - Hello Prayer Warriors! Sorry it has been so long but Barrett is doing wonderful. As you probably know, we celebrated her 2nd Birthday yesterday, and thanks to her donor that was possible. To catch you up, Barrett is now off all her medications except for Phenobarbital, her anti-seizure medicine. We had a case of Pneumonia last week and she is doing fine, she continues to be a fighter. The pediatrician stated that you would not even know she was sick. She takes a few steps on her own, but has yet built up the courage to hit the ground running. I know with your prayers for encouragement she will walk or start running soon. She talks some and her favorite words are “Da Da” and “Dog”. Her appetite continues to improve and her clinic visits continue to go well. Another surprise, we have started Day Care and she loves it, little Miss Personality. I will have new pictures posted soon from her Birthday. Please continue to pray that Barrett remains cancer free and that she will build up her encouragement to walk on her own soon and continue to pray for Barrett’s donor. I invite you to read a very special note to Barrett,
I would like to mention there is a surprise in the following note
that I do not think you will want to miss. To my Precious Barrett, I have been blessed with my second Mother’s Day, your second Birthday, and everyday in between. You are my whole world and there is not a day that goes by that I do not say to myself, “That I have been truly blessed”. Regardless of your illness, I would not change a moment of your life and the time that you and I have spent together, the one thing that I would change is to have been able to trade places with you so that you did not have to suffer. As I look at other Mothers doing things with their baby’s, things that you and I did not get to do, I do not pity myself but trust that every thing that we have gone through was God’s plan and I find comfort in that. So instead of feeling robbed, I choose to find trust and faith in our journey. I hope that I can teach you to find that same comfort, during the worst times of your life. As I drop you off everyday for School, I leave there praying that you will not be cold or hungry. I think that is one of the things that no Mother can bear to think of when it comes to their child. Even though I know you are in good hands, I still cannot be there to take care of your every need. You are such a happy child and everyone always talks about how beautiful you are both inside and out. I never knew what it was like to love until the day the Lord blessed me with you. The one thing everyone always comments on is your hair. They say how beautiful it is, it is such a different color that it is hard to describe, even for me, it almost has the color of honey, but regardless you have the most beautiful curls. I respond to their comments by saying, “I do not know if we are to thank chemo or the donor”. Barrett, on December 17, 2004, I signed a release form to allow the National Bone Marrow Donor Program to release our information to your donor. It is now May 26, 2005, and up to today I had not heard from anyone, even after several follow up phone calls. All I can say is that the Lord continues to work in our lives, not only was I blessed with your second Birthday; I was blessed to have heard from the Donor program today that your donor wanted to get in contact with us. An unfortunate thing happened, our paper work got lost at the National Bone Marrow Donor Program, and even though I was doing follow up phone calls, your donor was never contacted. Instead of being upset for having to wait these several months, I choose to look at it as a very special Birthday present. How blessed are we? Your donor contacted the program and asked to meet her recipient, and here we are. It is impossible to describe the excitement I feel, no one can, unless you have walked in my shoes. Your donor is why you are here today; she has given a selfless gift. She gave you a second chance and she gave me my daughter. As I type with tear filled eyes I cannot imagine a better example of a “Hero”. A Hero is one who saves others and thinks nothing of themselves, that is what best describes her in my opinion. I have not contacted her, but will do so before the sunsets today. We have sent her a bouquet of flowers with a note thanking her for her selfless gift and telling her she will forever be our hero. Barrett, if you ever get down and pity what life has thrown at you, I hope that you will find something “good” and realize how truly blessed you are. Just a hint, something “good” can even be watching another child laugh or smile, there is no way but up never down, and remember always “Use your Irish blood and fight for me”, I cannot count how many times I whispered that into your ear! Love, Tuesday,
March 29, 2005
8:00 pm - Hello Prayer Warriors! Do you notice anything different in the picture to the right? My mommy says, "I am a bottomless pit and that she can't seem to fill me up". Once again God heard all of our prayers and He continues to answer them. Barrett is a walking testimony that God does answer prayers. There is not a day that goes by that I do not realize that and I thank God for all of Barrett's Prayer Warriors. We removed the nose tube the day of the fashion show for Vanderbilt Children's Hospital, February 19, 2005. She did wonderful during the show and waved at the audience as they shouted her name. I have to wonder will she ever grow out of this adorable personality, I hope not. Her personality is a part of what makes Barrett a fighter and trust me it shows. I know many of you are curious as to what her favorite foods are, so here are just a few to mention: tomatoes with guacamole, chicken, mini M & M's, hash browns, curly fries, white beans, chocolate ice cream and to drink her favorites are milk and water. I almost forgot we found out she prefers the delicatessen "worms". When we were playing outside Saturday, she found a worm and started to put it in her mouth. You can only imagine how horrified we were but we have found it to be quite amusing, we are just blessed that she is eating. She is only on two medicines and doing very well. She is gaining weight on her own but she is still not walking. We figure she will go from crawling to running just like she went from not eating to not being able to fill her up. I am not complaining, just rejoicing, we look forward to chasing her. We still have not heard from the donor and we will have to accept that we might not ever hear from her. This is disappointing because I want so much to thank her for her selfless gift but I have to find comfort that if we are meant to meet her, then we will. Just like Barrett's illness, God has a plan and I have to assume that part of His plan is that if we are meant to have a relationship with the donor it will happen and this is not in my control. I have shared my joys and heartaches with you through our journal for over a year now. One of the battles that I continue to face everyday is when I broke a promise to God. I feel that I have kept my promise to God that I have not questioned Him as to why my daughter has had to endure this horrible disease, but I still find myself haunted that almost one year ago I broke a promise to Him that I would never get angry. My Grandfather used to say, "A man is only as good as his word", and I so believe that, although I am human, it still hurts that I broke my word. Through our journey we have met many families that have walked down the same road as we have, and many of them have lost their little angels. I find myself no longer being able to shed a tear when death has come knocking, I live with the concern that my heart has hardened. I know that I can still love the same and with all my heart but what makes a person feel no emotion towards death? I would like to share with you how some of the children left a huge impression on us. For example, my mom and I were shopping the other day and we found a kit to make jewelry, our first thought was of Tora, she had made Barrett a necklace during one of their hospital stays; second, every time I hear about Alabama University, I think of Whitney, who was going to be a freshman and then got sick, and all I can think about is how she was missing out on the best time of her life; third, I will never see a head full of golden locks again and not think of Kelsey; fourth, every time I see an I.V. pole I think of Rae Rae and how she used to wrap her legs around the pole and set on the legs and have someone push her around; and last Justin, one of my greatest inspirations, I can only hope to have his faith, and be as mature as he was if I am ever faced with any disease. I have been blessed to have met these wonderful young people, I know what reminds me of each one of them but they all shared something in common at that was, "they fought hard to live, and made the most of their lives". Some of them participated in studies so that they may help other children in the future with these illnesses but they all were an inspiration and left their "mark". Please continue to pray for Barrett and that she will remain in remission. Mom Thursday, February 3, 2005
1:30 pm - Hello Prayer Warriors! I know that I have not updated in a long time but I assure you "no news is good news". Barrett is doing wonderful. She is so active and has started entering the "terrible two phase". But I am not going to complain, well almost not, they do have the ability to try ones patience. All I can do is thank the Lord that she is trying mine.
My future Olympian is no longer a baby; she walks around furniture, climbs stairs, and has found "Barney and Winnie the Pooh" and one would never know a little over one year ago she was fighting the battle of her life. She still continues to be my teacher; Barrett is a walking testimony that God does answer our Prayers. That is why I am so grateful to Barrett's Prayer Warriors; I will always know in my heart that you all played a large role in her life.
We continue to work with Speech, Occupational, and Physical Therapy and Barrett continues to meet her developmental milestones. She is gaining weight, growing, and eating a little better. There have been times that we have left the nose tube out for two days but unfortunately it has to be put back in, we still cannot risk her getting dehydrated. We are still taking baby steps in some areas, but we have come so far in our journey.
In 10 days Barrett will be off all her medicines, including immune suppression, except for Bactrim (anti-pneumonia) and Phenobarbital. Everyone is so excited, and on the selfish side, no one can be more excited than me. I have gone from preparing 12 containers that included multiple medicines per day to just four containers and in less than two weeks I will have less than that. Of course, Barrett is the one that was really affected by all the medicines, we just administered them and did what was necessary to keep her healthy, but a child's memory is short compared to an adult.
On December 10, 2004, I signed the consent form to begin the process of notifying the donor. As of this date, we still have not heard anything. The Donor Program has stated that they have forwarded the information so all we can do is be patient. "What is meant to happen will happen". I would be dishonest if I said that "I am not disappointed", because I am. I so want to thank her for her selfless gift, if I never meet her, I hope she will know what an impact she has made in our lives and I will forever be grateful for her role in saving my daughters life.
As I have mentioned, Barrett has participated in three videos that were used as fund raisers for Vanderbilt Children's Hospital. On February 19, 2005, she will have another opportunity to help in raising money for the Hospital. There is going to be a fashion show at the Richland Country Club, all models are former patients of Vanderbilt, and all the proceeds will go to the Children's Hospital. We are so excited, we just want to do our part to help give back to an establishment that has been so good to us. I will provide pictures of our models debut as I have them.
Please continue to pray that Barrett stays in remission and that she will start to eat better.
Mom
Thursday, December 30, 2004
9:00 pm - Hello Prayer Warriors! Barrett is doing wonderful. I am sorry that I have not updated for some time but the good news is "our prayers are still being answered". Her one year bone marrow test confirmed that she is still in remission, that her blood DNA is 100% donor, and that the 4/11 chromosome that was in her leukemia was not present. We are continuing to taper her off the cyclosporine and we are at the halfway point on that taper. In eight weeks, she will go from taking six different types of medicines a day to only taking two different medicines a day. That is a long way from the twelve different medicines that she started after her transplant. What a difference a year makes! Once Barrett is off the cyclosporine, we can remove the nose tube. Every time I have to replace the tape on her face or put the nose tube back in, I just tell myself that this is one more time closer to hopefully never having to do this again. I never thought I could put a nose tube in, but once I tried it, it seemed like no big deal. I am not worried about the inconvenience to me as I am to how it upsets Barrett every time we have to do this. I guess the old saying, "what doesn't kill us only makes us stronger", is true. Barrett continues to meet her developmental milestones. She is still behind but the fact that she is developing proves to us that she will eventually catch up. Her mind is so far ahead of her physical strength. She is saying, "da da" and "that" and she continues to entertain us with her dancing and precious personality. She has figured out how to work her Daddy and when he is around, I take third seat. I have signed the consent form to release our information to the donor and if she agrees to sign her portion of the consent form, we will be allowed to exchange information. Please pray that the donor will sign her release and that she will be allowed to meet Barrett. We met with Barrett's neurologist a while back and he stated to us that Barrett would not have any motor dysfunction from her stroke, but that she would possibly have some vision loss in one of her eyes. The neurologist stated that until Barrett was old enough to communicate, we would probably not know if there has been any damage; we will schedule our first visit with a Vanderbilt eye doctor within the next several months. We will also schedule a visit to a pediatric dentist and start investigating to see if there has been any damage to her permanent teeth from the radiation that she received. That was one of the side effects from the radiation but also is a fixable side effect if there has been any damage. Please pray that there has not been any damage to Barrett's vision and permanent teeth. If there has been, we will cross those bridges when we have too. I will have new pictures soon, we have all been so busy during the last several weeks and I apologize for that, but I can assure you that you will see a big change in her. Thank you all for your continued concern and for your prayers. Mom Note:
Mom may not have had pictures but Cousin Amie did so check out the
Photo Gallery. Tuesday, December 14, 2004 (Day +362) 10:30 am - Good Morning Prayer Warriors! Great news! Barrett is still in remission. Also, the 4/11 chromosome has disappeared. This is the chromosome that made her cancer so aggressive. We still do not have the results of the test to know if she is 100% donor. Mom will update us when she receives the results from that test. Mom wants to thank everyone who has continued to pray for Barrett. God continues to work in all our lives everyday. Let us all remember him during this holiday season and the wonderful gifts he has blessed us with. Amie Joye
Friday, December 10, 2004 (Day +358) 8:00 am - Good Morning Prayer Warriors! Today is a big day for Barrett. The Doctors will be performing tests this morning to see if Barrett is still in remission. Audrea will let us know as soon as she finds out anything. However, it may be next week before all of the results are back. Barrett is doing wonderful. She has started blowing kisses. Please pray that Barrett's test results show that she is still cancer-free. Amie Joye
Thursday, December 2, 2004 (Day +350) 10:45 am - Hello Prayer Warriors! Barrett continues to be doing well and we are still tapering her off the cyclosporine. She has started pulling up and cruising around the furniture. Her eating has not improved, but she continues to eat and drink. We had a wonderful Thanksgiving; we were blessed to have relatives from three sides of the family together along with our new neighbors. We have been blessed and had a lot to be thankful for. We started a portion of our one year tests last Friday at clinic and we are scheduled to have another bone marrow test on Friday, December 10, 2004. Please pray that the test will reveal that Barrett is still in remission and that she is cancer free. I have written the donor asking that she consider signing the consent form that would allow us to contact her. Please continue to keep the donor in your prayers.
I have had the pleasure of meeting many of Barrett's Prayer Warriors lately and we still continue to receive emails from many of you letting us know that Barrett is still in your prayers. Many of you have mentioned what an inspiration Barrett has been, I agree, she is my little teacher. Thank you all so much for your introductions and continued emails. They mean more to me than I will ever be able to express.
I will post new pictures soon and please continue to pray that Barrett will remain cancer free and she will start to develop a more healthy appetite.
As I have stated many times before, this journal is for Barrett, the lessons that I have learned through her illness, and a way for me to express my feelings. It is amazing how quick we forget things and the best way to keep that from happening is to write them down and treasure them. I invite you to continue to read, for I have been taught that a mature Christian comes in all ages.
As I have wrote about two special young individuals in the past, they are not the only ones who have touched our lives through our journey, but they have definitely made an impact in my life. As I have gotten back to a more normal life, one outside of the hospital walls, sickness and tragedy still are part of our everyday lives.
I have learned that a mature Christian comes in all ages, shapes and sizes. Whether you are an angry adult, stricken with terminal cancer, who has attended church every Sunday or a 17 year old young man who has witnessed too many, or a nine year old young lady that had the courage to fight, a mature Christian does not reflect the number of years you have lived on this earth but what you have done with your time here on earth. I hope that I will be as strong, faithful, and at peace as the later two that I spoke of were.
The 17 year old young man, whom I quoted from his own journal, passed away in September. His Mother wrote in his journal that as he took his last breath he had a smile on his face. The young man never appeared angry; he used his illness to witness to many people and made a huge impact in all the lives that he touched. Perhaps that was part of God's plan for this young man, I do not know, but what I do know is that he left this earth making his mark, and he kept his faith to the end. He was 20 years younger than me and definitely a mature Christian.
The nine year old young lady that I have spoken of passed away last night. She was the one that knew the consequences of attempting an experimental procedure but stated that she would not have made it this far if others had not tried experiments in the past and she wanted to try to help other children in the future. What a courageous fighter she was, not only did she have an amazing faith, but had suffered from two relapses and was continuing to fight. She also left her mark on this earth, nine years old and wise beyond her years, what an impact she made on me.
When Barrett was diagnosed with leukemia, I made two promises to God, one that I would not get angry and two, "I would never ask the question, Why?" This world has lost two of God's Messenger's; I pray that I will have the same mature faith that these two amazing individuals had. I broke one of my promises to God before Easter. We had to spend Easter in the hospital, Barrett had an infection, I was tired emotionally, physically, and mentally and very angry. I think I punished myself more that I was not strong enough to keep my promise, it was a promise that I did not take lightly.
As I know these two families are suffering from their loss, I still have my sweet child, my own little Messenger from God, so I will try to be a more mature Christian in the future and over look the inconveniences that are placed on me and hopefully see the bigger picture! LIFE and hopefully one day make a difference and leave my own mark here on earth.
Remember the reason for Christmas; it is a time for giving. We received the gift of life last year, how can that be topped except to have many Christmas's to come with our precious daughter.
Mom
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