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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 Monday, June 21, 2004 (Day +186)
10:45 am - Good Morning Prayer Warriors! Barrett is doing wonderful. She is teething and biting on everything that goes to her mouth except food. Some days, she will open her mouth and take a couple of spoonfuls and other days she just looks at you and shakes her head "no". We had Baby Dedication yesterday at Church and what a treat that was for Father's Day. My Dad stated, "The best Father's Day gift was my two grandchildren were in Church with me. I could not ask for anything more." I guess the next time we all sit on a church pew together; I will know that it is a blessing that we can all be together. Barrett, along with many things that your Daddy and I will teach you, just the little things that we take for granted can all be gone in a split second.
Neal had a wonderful Father's Day, another Holiday that we got to spend at home and not in the hospital. During Baby Dedication, he held Barrett and I could see the pride in his eyes. It touches me deeply that they are as close.
When I see people out and they ask about Barrett, it touches me deeply. Many of you have stated that you have watched her grow up through the pictures on the website and that makes me feel good. It makes this Mother feel so special with how each of you shows your concern for our daughter. At Church, yesterday, a lady came up to us and she started getting very emotional and she stated to Barrett, "I have spent many a nights on my knees praying for you". All Neal and I could due was cry and thank her for her Prayers. Until you have been in our shoes, you will never know how much you all have done for us by just praying. It has been worth its weight in gold.
My Grandmother also attended yesterday's Baby Dedication and I feel that it should be mentioned that she has not missed one day of Sunday School in 39 years. Our Pastor recognized her and what a wonderful example she has set for all of us.
Barrett is still doing the army crawl and has started putting a lot of weight through her legs. She received a "walker" for her Birthday and she likes to play with the magnets on the refrigerator. She is starting to enjoy some of her independence; unfortunately, I do not have a cuddler any more.
Please continue to pray that Barrett will stay GVH and cancer free.
Mom
8:45 am - Good Morning Prayer Warriors! I was on vacation last week and that was why there were no updates. Barrett is still doing wonderful and she had a great weekend. Hopefully, Audrea will update us later with details of the weekend events. We have a new picture for you from Relay for Life. Enjoy! Amie Joye
Thursday, June 10, 2004 (Day +175)
3:00 pm - Good Afternoon Prayer Warriors! Barrett is doing wonderful. Her surgery on Monday went well; they had to remove the cuff left from her central line. When the Doctor removed her central line, the cuff at the end of the line did not come out and it was starting to cause a problem for Barrett. The fact that the cuff remains inside was not the problem. It will usually dissolve but the cuff was underneath her skin at the original site of her central line and it looked like a large mole. If they had not removed it, Barrett would not have been happy with us in several years.
Something that I have wanted to mention to those of you who have sent cards and emails, I have saved all of those for Barrett so that she can always have them. Everyone's correspondence has meant so much and it is too valuable to me not to keep.
During Friday's clinic visit, her Doctor has given us permission to take her to restaurants and other public places, within reason, except those places where there are a lot of children. She still cannot attend Church Nursery or a Day Care, but with caution we can now go out as a family to have dinner in a public place. One more step closer to normal, the Lord continues to answer our prayers. Please do not be offended if you see us in a public place and I take two steps back with her. She is still very susceptible to germs and the Doctor stressed that she did not need to come into contact with others that normally did not have direct contact with her.
On Friday evening, my Dad, Barrett, Neal, and myself, attended the American Cancer Society's Relay for Life. One of the purposes for us attending was that the "Bikers Who Care" were riding their motorcycles around the track to kick off the Relay for Life before the ceremonies started. Neal was part of that and we wanted to be there for him. I had never considered signing Barrett up for the ceremonies but one of the coordinators insisted that we participate. Before the ceremony, Barrett received a ribbon and the color of ribbon indicated the type of cancer that you have had and also a sticker stating "I am a Cancer Survivor".
As my Dad, Barrett, and I started walking the track, prior to the ceremony, we were looking at the luminaries that lined the tract. Some were "In Memory Of" and others like Barrett's were "In Honor Of". The luminaries were one way to help raise money for the ACS (American Cancer Society). It was a wonderful way to acknowledge a Loved One and the money goes to a wonderful cause. It was then that it all started to sink in about what a long road we had traveled and the emotions started setting in. We have traveled this road and all of you have been a part of it. You know of our ups and our downs but one thing that holds true is Barrett has been a wonderful inspiration to me and after Friday night, once again life was put into perspective.
During the ceremony process, they called out a survivors name and the survivor would go up to receive their metal. As I watched these survivors accept their metals with smiles on their faces, it touched me so deeply. They had fought a tough battle, one that I have never had to fight, they all shared something, and they all handled it graciously. I felt so honored just to be there amongst all of them and then when Barrett's name was called, I walked the short distance carrying my little fighter to accept her metal, my head was hung low and I fought hard to hold back the tears. I did not feel worthy enough to be around this group of people because I look back on all the times and feel as if I have not respected the "gift of life" and how precious it can be. I have never wanted to kill or harm anyone but I am guilty of not appreciating my good health and all that I have been blessed with. These survivors know what a blessing life is, it's shown on their faces. It was very touching and extremely emotional to me.
So to all of you, along with our precious daughter, thank you for letting me see something through your eyes. Once again, another special gift that has been given to me through this terrible disease. Many of you mention what an inspiration Barrett has been to you, I thank you for your kind words, because my daughter has definitely been an inspiration to me.
Please continue to pray that Barrett will remain cancer free and GVH free.
Mom
Personal note to Barrett
To my little fighter, whom I love more than anything in this world. I am so proud of you. You are changing everyday and gaining strength in your little legs. You go backwards, back and forth down the hallway in your walker. You have developed a huge case of Mommy-itis and you are trying to say "Da Da". You are almost six months from transplant and you and I have traveled on a road that feels like a lifetime. I would travel it all over again with you, except this time I do not want you to be sick. I wished I could have traded places with you but I am sorry to say that I could not have been the fighter that you have been. For someone that has endured what you have, at less than one year of age, you have taught many of us strength and courage. You are truly a blessing from God.
With Love, Mom
Monday, June 7, 2004 (Day +172) 8:00 am - Good Morning Prayer Warriors! Barrett had another wonderful weekend and she is doing very well. This morning, she will have minor surgery to correct future scarring at the site where they removed her central line. Please pray that all goes well with this surgery. Amie Joye
Tuesday, June 1, 2004 (Day + 166)
2:30 pm - Hello Prayer Warriors! Barrett is doing wonderful. She got her last central line out last Tuesday, May 25, 2004, on her Birthday and so far everything is going well. The only bad thing about having no more central lines is her veins is that now she will have to be stuck to draw her blood and I so hate that for her. She is changing and doing something new everyday. We placed her on her hands and knees this weekend and she rocked back and forth. I sure hope crawling is right around the corner. As I looked back on her Birthday and thought how I wish she was still little, I still love it when she reaches another developmental milestone. With what all she has been through, it is like winning the lottery every time she does something new.
On Wednesday, May 26, 2004, there was a note under "Tip of the Hat" in the Leaf Chronicle from our family. I hope many of you got a chance to read it but if you did not please try to find a copy. We, as a family, wanted to take the opportunity to thank everyone and our community. Without everyone's support, things would have been more difficult and many of you do not know how much of a burden you lifted from us.
Barrett's Birthday was wonderful, we were joined by family and it was a blessing to have this first occasion at home and not in the hospital. Barrett received many gifts that day but she will never know how many gifts she has given all of us. Many of you have read the journal entry from Easter when I was struggling with my emotions and my Dad was there for me.
After Barrett and I opened her gifts from the Birthday party, I thanked everyone and I thanked our family for everything that they have done for us during our very difficult time. My sweet little Grandmother made a point to come and tell me how much she loved me and how much we meant to her and then she hugged me. And many of you out there who have sweet little Grandmothers may not think much of that but it was the first time I can ever remember her telling me that she loved me. It will forever make Barrett's first Birthday all the more special.
That is one of the special gifts Barrett has given all of us. She has taught all of us how to stop and smell the roses and to be thankful for the little things in life. Something as small as a phrase like "I Love You" will forever make a difference in someone's life. As I look at the inside of my house these days, I just shrug my shoulders and remember the dust will be there tomorrow, but today will not be and I choose to spend that time with my daughter. For those of you who really know me, ignoring my house used to never happen.
Neal and I continue to feel blessed every day by our friends and our family. On Father's Day, Barrett's Doctor has given us permission to participate in Baby Dedication at our church. We are so excited about being able to do this publicly, God has given us this special time with our daughter and Neal and I are committed to raising our child as a Christian.
When we return to clinic this Friday, the Doctor plans to start Barrett on another taper. His intentions are to start tapering her on her Cellcept. This is one of the immune suppression drugs that also helps to fight the Graft Versus Host Disease. We are still on our prednisone taper and will continue to be on that for at least a couple of more months. The Doctor has stated that the nose tube will be in to at least December due to the fact that she will still be on so many medications.
Barrett is still not eating but she continues to taste food. Some of the textures of food make it difficult to swallow and she will have to relearn this, we are hoping to start speech therapy soon. For those of you who are not aware of this, speech therapy can help Barrett in this area and also teach us how to get Barrett to eat again. She continues to gain weight and looks wonderful. Everyday is a blessing and we are so happy to be a normal family at home.
Just a note to let everyone know, if you do not see an update, all is well. I can promise you that if something happens, Amie Joye will immediately update the web page if I cannot. So it is safe to assume, "No news is Good news".
Please continue to pray that Barrett will remain cancer and Graft Versus Host Disease free.
Mom
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