tressiegirl1999 Tue 22-Jul-14 15:41:31
Hello everyone. I am new to this website and hope that the information I can offer will help you and your child. I have a daughter, Tressie. She was born on 4/22/99 and after genetic testing, was found to have a deletion of the 14th chromosome, on the long arm, band 23. We were told by the doctors then that they were unable to find any documented cases of this deletion, so we would have to just take it day by day and see how she progressed. She was born with a heart murmur, low body tone, re-flux to her kidneys, a large floppy bladder, hypothyroidism. When she was about 3, we discovered that she suffered from seizures. At the age of 5 she weighed only 26 pounds and a g-tube was placed for failure to thrive and aspiration problems. She had her first bowel obstruction with surgery in 2006 with the possibility of another sometime in her future, they said that 1 in 3 people will have another obstruction again in their lifetime. And she was developmentally and physically delayed. She could not walk, although she could scoot very fast. She could not talk, but was able to yell out and babble like a baby. Before her feeding tube was placed, she was always ill with something, her immunity was just so low. She had chronic ear infections with 3 sets of tubes placed. And always got pneumonia 2-3 times a year. In 2004, she had a fundleplication done to help prevent re-flux and that wrap lasted until 2009. In 2009, we noticed that she was having the re-flux symptoms again and a second surgery was done. With that surgery, she ended up in the hospital for 5 months, pancreatitis and pneumonia. Now, I know it is overwhelming, but please just read my entire entry before you get overwhelmed and just stop. On 8/15/2011, what we thought was a second bowel obstruction ended up being diagnosed as Rhabdomyosarcoma of the uterus (cancer). That was like a kick in my gut, after all we had gone through and over come, cancer!!! They are pretty sure that the Rhabdomyosarcoma is related to her genetic disorder. This type of cancer starts in the embryo stage before the child is even born. It is a soft tissue cancer and grows in the skeletal muscle. We started chemo immediately and the tumor showed good signs of shrinkage. She had a second bowel obstruction a couple months into chemo and had to have surgery, which delayed the treatments. About 4 months after the surgery, she had been on the chemo for about 3 months and had liver failure from the chemo, she almost died, but in her always genuine strength and will to live, pulled out of it. She could no longer have treatments, so we went home just to be together and hope for time. A month later, she had a third bowel obstruction and this time it cut off the blood supply to almost the entire bowel, so they had to remove most of it. She had to have a colostomy, yuck!!! And since there was very little bowel, she had to be fed with TPN through her veins. This was not a good thing for her liver, because the TPN causes more damage to the liver. She was in the hospital for 2 months and finally we decided that we needed to take her home and be together for whatever time we had left with her. We knew she was getting so tired and weak and that her little 70 pound body would not last very long. We were told that they thought her cancer had spread and we would have to wait for a few weeks to confirm it. I took her home and started hospice so that she would not be in any pain. My main thought was just to do whatever we had to for my child. She would be in charge and tell us what she wanted to do, whether it was to live or leave us and go to Heaven, it would be up to her. We would just love her and do what we needed to so that she was happy and comfortable. I had to deal with the fear and anxiety of watching my child die, and not make her see me upset. On 7/23/2012 the MRI showed that she had more than 10 small tumors in her liver, and they thought she had a tumor in the bladder/uterus area that they could not see. On 8/6/2012, Tressie passed away at 3:35 am with my husband and I by her side. It was the worst time of my life and I will never be the same again. She was 13 years old and she and I had a bond that evolved even what a normal child has with a parent. I know that you know the bond between a parent and a special needs child. Now, I know you are probably thinking how terrible for this child and mother. I have to say that going through the experience of having her and loving her was worth every second. I learned something from her everyday of her life. And, in this crazy day and time most people do not get to see or experience unconditional love. Everyone wants something. Tressie, she only wanted to be loved, and cared for and to watch her Sponge Bob shows, and go to school with her friends. And, even when I thought I could not change one more diaper, I got up and changed it. And when the diaper was changed, Tressie, in her usual fashion, would wrap her arms around my neck and give me a big hug and kiss. It made it all alright. Tressie needed me for everything, and we molded our lives around her and her needs. But, in the end of her life, I realized that I was the one who needed her more. In her 13 short years of life, she taught me many lessons, but the lesson that I learned in the last days of her life was to see the beauty, even in her death. I am dreading the 2 year mark of her passing next month, but I would not change one minute of our time together and I would walk every minute again with her if given the chance. Stay strong, I know how hard it can be at times, but our children with special needs are a blessing.
A very lucky mamma.