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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.
Update
Thursday, April 29, 2004 (Day +133) 4:15 pm - Good Afternoon Prayer Warriors! Barrett is doing wonderful. She has been making up in the last month for what she has been limited to for the past six months. She surprises us with something new everyday. She is our little joy in a great big way! I am constantly amazed at how she lights up when she sees her father. To all the Dads out there, I cannot imagine the feeling that comes over you when your child sees you and you know they light up like the brightest star in a clear summer sky, what a memory you should never forget. Barrett is doing so many wonderful things that I never want to forget and as I write them down my heart feels with emotion.
More often than not, I hum Barrett to sleep and if I stop humming, she will start humming. When I lay her down in her crib, she still continues to hum. It is the sweetest sound to me. I so hope that my child will be musically talented. This is my hope! When I was expecting Barrett, I would play music for her with the hope that she would find it calming after she was born. I feel that when she hums to herself, she is finding comfort and it warms me all over to know that I may have played a part in that.
I love watching her on the baby monitor and sometimes catching her waking in the mornings, leaning up from the prone position, trying to look over her crib and wondering, "I am up now, when is someone going to come and get me. Don't make me cry". I always want to keep these precious sounds and images in my mind and I never want to lose them. Bby writing them down, they will forever be here for me and Barrett.
Neal and I had our first taste of normal life with Barrett this week. We had to leave Barrett with a care giver. As the week has progressed, Barrett is starting to warm up to this lady but Neal and I still had to deal with the guilt that all parents deal with when you return back to work. Neal and I have wished for normal for a long time, it is just this type of normal that we wish we could have avoided. This experience will only make the three of us stronger and like all families, "This too will pass".
Please continue to pray that Barrett will remain cancer free.
Mom
Monday, April 26, 2004 (Day +130) 9:00 am - Good Morning Prayer Warriors! Sorry it has been so long since we updated you. Barrett is doing absolutely wonderful. She is making up in 2 weeks what she has not been doing the past 4 months. She has discovered her tongue and sticks it out all the time and she has the drive to crawl but is not going anywhere. Barrett is still entertaining food but not yet eating. Please pray that Barrett will start eating soon and that she will continue to get better everyday. Amie Joye
Wednesday, April 21, 2004 (Day +125) 2:45 pm - Good Morning Prayer Warriors! Barrett is still doing wonderful. Everyday she does something new and she has become a very busy baby. She had a clinic visit yesterday and she has gained another 6 ounces from last Friday and all her lab work is normal. Please continue to pray that she will regain her appetite soon and that she will remain cancer free for the rest of her life.
Mom
Friday, April 16, 2004 (Day +120)
10:15 am - Good Morning Prayer Warriors! Sorry that I have not written in a while, we have been so busy with Barrett. She is doing wonderful; she continues to surprise us with something new every day. We left for work this morning and she was chewing on a Cheetos. She is still not eating but sometimes will entertain something salty. As you already know, we had to go back into the hospital last Thursday for an infection in her central line. They were treating the infection with two wide range antibiotics on Thursday, Friday and Saturday, hoping they were killing the infection and then the lab work came back and showed she had a bacterial infection that these two antibiotics will not cure. So Saturday evening, they started her on two new antibiotics and we finally got a negative culture on Monday and we were discharged on Tuesday. They could not believe how happy and active Barrett was to have this infection. They stated that normally with this type of infection, you are very tired and lifeless. Originally, I was concerned that I could have caused this infection by flushing her central line daily but it was explained to me that this type of infection can only be caught in a health care environment. It would be complicated if I explained it any further but it was such a relief to know that I did not cause it, I never want to cause Barrett any harm. I have not mentioned lately but we chose to leave the Omaya Reservoir in Barrett. For those of you who do not remember, this is in Barrett's head and was used instead of having to do so many spinal taps on her. As you can see in her pictures, you can no longer see it because her hair covers it up but Neal and I did not want it removed because it was surgery and we risked the chance of infection. That was our choice but the Doctors stated that they do not remove them for cosmetic purposes because when the catheter is removed it could cause a bleed to the brain. I cannot express how thankful I am to all of Barrett's Prayer Warriors! We continue to need your prayers. She still has a long road ahead of her. We have to pray that the chemo and radiation side effects will not affect her and that she will have a normal healthy life. Please keep this in the back of your mind when you say prayers for her. I have been so busy that I have gotten away from my therapy, this journal, and as you continue to check on Barrett's progress you may start to see some personal entries. Please feel free to read them and continue to be a part of mine and Barrett's life. When we were called on Thursday to have Barrett readmitted into the hospital, I had this huge feeling of dread. Only a mother can understand what I am about to write but my heart feels heavy to write this wonderful experience down so that I never forget it. You see, Barrett was scheduled to have Easter pictures made that afternoon, on Thursday, and all I could think about was another "first" that I was going to miss out on with Barrett and how I did not want to spend her first Easter in the hospital. I had to spend her first Halloween, first Christmas, and now her first Easter there. Needless to say I was having a huge pity-party. Everyone kept on saying, "we are so lucky to still have her here, so look at the blessing", but that is not what I wanted to hear. Yes, I know my daughter is a blessing and God's Will has kept her here and I do not want that to change, I just wanted "normal". As the weekend came about and her blood cultures were still positive, my attitude continued to get worse, by Saturday morning I was very depressed. If any on you know me, I am a product of my father, and very much a daddy's girl myself. My father has raised me on what I call, "tough love". Before Barrett's illness, I could count how many times on both hands that my dad told me he loved me, but even though I was not told often, I knew. I always will say, "My brother and I may not have had everything we wanted but we had everything we needed" and we are also blessed that we are still together as a family. So for those of you who have lost parents or have divorced parents, I do not want to feel ungrateful, I know how lucky I am, but sometimes we all lose sight of the forest. My Dad will never know how much his thoughtfulness meant to me on Saturday when he came to me and said, "cry on your Daddy's shoulder". For as long as I remember, I have never done that, and I never want to forget that special moment for the rest of my life. For once, someone else had to pick up the pieces; I could not do it anymore. I remember crying and saying, "I am so tired and I am so angry, and that I promised God in the beginning of all this, that I would not get angry and that I broke my promise". I have always felt better after a good cry and when I was finished my Dad prayed and like all daddy's he made it all better. I Love You Dad, you have always known what is best for me. On Sunday, Easter, a young man who has bone cancer, stopped by Barrett's room and was talking and passing the time. He was such a help to me because he explained to me some of the things that Barrett is going through, things that she cannot tell me. He explained to me how bad food taste and what it tasted like for him until he got his taste buds back and then he said something that really hit home, "things could always be worse". And he was so right, right then and there, I stated that yes he was right and that he and Barrett could not be here but we were blessed because they were. Children are much wiser than adults and I look forward to continuing to learn through Barrett. Mom
Thursday, April 15, 2004 (Day +119)
9:15 am - Good Morning Prayer Warriors! Sorry it has taken so long to update you. Barrett came home Tuesday and she is doing wonderful. Hopefully by tomorrow, we will have some Easter pictures on the website for you. Amie Joye
Monday, April 12, 2004 (Day +116) 9:00 am - Good Morning Prayer Warriors! Barrett is still in the hospital but she is doing fine. They are still treating her for the infection. Please pray for negative cultures and Barrett to return home soon. Mom will try to update us later today or tomorrow. Amie Joye
Thursday, April 8, 2004 (Day +112) 2:30 pm -Good afternoon Prayer Warriors! Mom and Dad are taking Barrett to be readmitted to the hospital. She has an infection in her central line. Hopefully, they can be discharged Saturday or Sunday. Please pray for Barrett's infection to go away. Amie Joye
Tuesday, April 6, 2004 (Day +110) 11:00 am - Good Morning Prayer Warriors! Barrett continues to be doing well. She is making new sounds and talking all the time. Wonder where she gets that from? Her strength continues to grow every day and we are still trying very hard to entertain her with eating again. She is having trouble handling the volume of milk she receives through her feeding tube and that is the issue we are dealing with now and a difficult one at that. Barrett needs to receive at least 23 ounces a day, actually it should be 25 ounces but she cannot handle receiving that much volume, even the way it is spaced throughout the day. I am constantly trying to come up with a solution on how to balance her rate and volume so that we can find a happy medium. Bless her heart, she gets so full and miserable from this feeding tube and then when she is off the milk, she feels fine and acts and plays like a normal baby. It is so unfair for her and that is what breaks my heart. She deserves so much more and the Doctors continue to tell us that one day she will start eating again, it will not be soon enough for me. Please continue to pray that Barrett will regain her appetite soon and that she will remain cancer free. Mom
Monday, April 5, 2004 (Day +109)
9:00 am - Good Morning Prayer Warriors! We have had another blessed and wonderful weekend. Barrett had a fever yesterday but has been fine since. Sometimes she will run a little fever and then it is gone. Thank you all for your emails this weekend. I cannot tell you how it felt when the Doctor gave us the news on Friday.
I knew in my heart that the news was going to be good but just hearing those words to confirm it had a much larger impact. I remember when Barrett's Pediatrician told me he thought Barrett had leukemia. I just pushed the tears back and refused to let them flow. On Friday, when we received the news, as my eyes filled with tears, I knew then it was alright to cry. This day has come so quick and I remember a time when I did not know if it would ever get here.
The Lord taught me to be patient and that he was in control, I sure hope I do not forget the lessons that I have learned through this experience. Barrett still has a long road ahead of her, she still receives many medications a day and she is still not eating. Many of you have asked if she were to start eating would we be able to remove the feeding tube and the answer is, "not until she gets off some of these medicines". The last count of how many times a day she receives medicines was 28 times a day. Without the nose tube, we would just create more aversions to the mouth.
Barrett has started putting toys to her mouth and sometimes crackers. She prefers to drink from a glass and not a bottle or sippy cup. Please pray that Barrett will regain her appetite soon. I know we are getting closer to the day that she will eat again.
Please continue to pray that Barrett will have a full recovery and that she will remain cancer free for the rest of her life.
Mom
Friday, April 2, 2004 (Day +106)
2:00 pm - Good Afternoon Prayer Warriors and what a wonderful afternoon it is! Barrett has gotten her test results and everything looks great. All tests show she is still in remission. Her bone marrow, spinal tap, and skin biopsy all came back negative. Her heart test that she had last Friday is normal and her liver and kidney tests came back normal. There are no signs of chronic GVH which can happen after Day +100. Over the past couple of days, Barrett appeared to have blood in her stool and there was concern her GVH was acting up again. After testing the stool, the blood is not in her stool but coming from a area that will heal over time and go away. The Doctors are not concerned about this. The next milestone will be one year from transplant. Please pray that Barrett will continue to stay in remission. Thank you for all of your prayers and keep up the good work! Amie Joye
Thursday, April 1, 2004 (Day +105)
10:45 am - Good Morning Prayer Warriors! Things continue to be going well and I have some new pictures regarding Barrett's procedure from Tuesday. We shared the radiation and bone marrow transplant with you and if you would like to see them we are providing the skin biopsy, bone marrow, and spinal tap pictures for you. Please remember that Barrett is asleep and has received numbing medication before these procedures are performed.
We hope to have all these results by Friday afternoon so be sure to check the website before you leave to go home on Friday. Please continue to pray that Barrett will remain free of GVHD and that she will have a full recovery and remain cancer free for the rest of her life.
Mom
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