Monday, February 1. 2010
No News IS Good News!!!
Hello to all of you lovely Taylor supporters out there! Sorry I have been neglecting you so! I actually feel really guilty for not writing more. I will try to do it more frequently moving forward.
Here is a little recap of how Taylor is doing....
Here is a little recap of how Taylor is doing....
First and foremost…December 22nd, 2009 was her last chemotherapy!!! Due to some low counts she was able to finish chemotherapy 4 days early!!! Whew Whoo!!! We could not have made it to there without every single one of you out there sending us your prayers, good thoughts, and “twinkles”. Thanks! You Rock!
In addition to going off chemotherapy…- Taylor started first grade in September 2009
- Played outdoor soccer this past fall with fellow first grade girls
- Broker her arm in September after falling off her bike! (Ouch!)
- She started to take dance class again…and loves it even more then when she stopped the fall when she was diagnosed!
- Overall, Taylor is just trying to be a normal little girl and loves it!
A few things that are going on related to her Leukemia:
- She still has the Leukoencephalopathy, which is the white matter disease…where the chemotherapies damage the white matter in her brain. So far, it seems to be stable, but with that time will only tell.
- She still has partial complex seizures (which we formerly referred to as her “episodes”). She has to take anti-seizure medication daily to help keep the seizures to a minimum. She had been doing pretty well about not having any for about 6-9 months. Around Thanksgiving, they started to happen a few times a week, so the doctors switched her medication. So far…she is doing well with the new medication….so keep your fingers crossed there!
- We go in once a month for IVIG (antibody transfusion) and blood tests to monitor her blood counts. As she remains off chemotherapy, her antibody levels should begin to go up again, but continuing with the IVIG through Flu season will help her stay a little healthier and ahead of the game. You can think about the IVIG as super-vitamins.
Yes…we made it off chemotherapy! That was a day I was very nervous about. Now it is the true test for Taylor. Leukemia is unlike almost all other forms of cancer. Taylor has technically been in remission since the first month of her treatment. She had to be…that is how Leukemia treatment works. If the doctors cannot get a Leukemia patient in remission by the end of the first month, the likelihood of ever achieving remission drops dramatically. FIRST HUGE MILESTONE>>> Taylor was in remission by the end of her first month of treatment!!!!! The years of chemotherapy are to keep the Leukemia away. Without the continued chemotherapy…the likelihood of a relapse is much greater. SECOND HUGE MILESTONE>>> Taylor made it all the way off treatment with no relapse! Like I said…now is the true test for Taylor. The question is…Can her body keep the Leukemia away…without the chemotherapy to do it for her? She will not be considered cured until she can make it FIVE (5) YEARS with NO chemotherapy and remains in remission. So December 22, 2014 will be our next target date! Taylor will be less then a month from turning 12 before she is CURED of Leukemia. She was 4 when she was diagnosed. Talk about a long journey!
Being off chemotherapy…makes it even more apparent all the ways this diagnosis and journey has forever changed our lives. Brave Bella (Taylor) called me into her room one night to show me a bruise that worried her because she couldn’t remember where it came from. She gets frustrated when she has her seizures because according to her no other little kids at school have them. Sweet Lexi continues to have some emotional issues from having to go through everything she did as Taylor’s diagnosis changed her life. Lovely Peyton, who was only 3 months old when Taylor was diagnosed, thinks the hospital is home away form home and Taylor’s nurse Dawn is her best friend. What would we do without our Dawn Dawn? I continue to do my nightly fever checks of all 3 of my girls before I go to bed. Not so crazy that I get the thermometer or tempadots out every night…just a forehead fever check. If I see a few too many bruises on any of my three daughters and I take a deep breath and reassure myself…that every bruise does not mean Leukemia. Taylor got her first low-grade fever off chemo and I gave myself a pat on the back for NOT running to the computer to research additional symptoms of relapse and assess Taylor for all of them. Maybe part of it is…by now I know all of the symptoms of a relapse so well by heart because over the past 3 years I have run to the computer to look them up over and over again. I wouldn’t say that I am paranoid or dwell on the negative…more…aware of the realities. The reality is one day…my perfectly healthy 4-year old was starting preschool and 9 days later I was rushing her to the Emergency Room on her Pediatrician’s orders because she had Leukemia. The only symptom was a low-grade fever off and on for 7 days. Life is so very fragile! At any moment in any day our lives can change. That moment for me was 7:15 PM on September 13, 2007.
In addition to going off chemotherapy…- Taylor started first grade in September 2009
- Played outdoor soccer this past fall with fellow first grade girls
- Broker her arm in September after falling off her bike! (Ouch!)
- She started to take dance class again…and loves it even more then when she stopped the fall when she was diagnosed!
- Overall, Taylor is just trying to be a normal little girl and loves it!
A few things that are going on related to her Leukemia:
- She still has the Leukoencephalopathy, which is the white matter disease…where the chemotherapies damage the white matter in her brain. So far, it seems to be stable, but with that time will only tell.
- She still has partial complex seizures (which we formerly referred to as her “episodes”). She has to take anti-seizure medication daily to help keep the seizures to a minimum. She had been doing pretty well about not having any for about 6-9 months. Around Thanksgiving, they started to happen a few times a week, so the doctors switched her medication. So far…she is doing well with the new medication….so keep your fingers crossed there!
- We go in once a month for IVIG (antibody transfusion) and blood tests to monitor her blood counts. As she remains off chemotherapy, her antibody levels should begin to go up again, but continuing with the IVIG through Flu season will help her stay a little healthier and ahead of the game. You can think about the IVIG as super-vitamins.
Yes…we made it off chemotherapy! That was a day I was very nervous about. Now it is the true test for Taylor. Leukemia is unlike almost all other forms of cancer. Taylor has technically been in remission since the first month of her treatment. She had to be…that is how Leukemia treatment works. If the doctors cannot get a Leukemia patient in remission by the end of the first month, the likelihood of ever achieving remission drops dramatically. FIRST HUGE MILESTONE>>> Taylor was in remission by the end of her first month of treatment!!!!! The years of chemotherapy are to keep the Leukemia away. Without the continued chemotherapy…the likelihood of a relapse is much greater. SECOND HUGE MILESTONE>>> Taylor made it all the way off treatment with no relapse! Like I said…now is the true test for Taylor. The question is…Can her body keep the Leukemia away…without the chemotherapy to do it for her? She will not be considered cured until she can make it FIVE (5) YEARS with NO chemotherapy and remains in remission. So December 22, 2014 will be our next target date! Taylor will be less then a month from turning 12 before she is CURED of Leukemia. She was 4 when she was diagnosed. Talk about a long journey!
Being off chemotherapy…makes it even more apparent all the ways this diagnosis and journey has forever changed our lives. Brave Bella (Taylor) called me into her room one night to show me a bruise that worried her because she couldn’t remember where it came from. She gets frustrated when she has her seizures because according to her no other little kids at school have them. Sweet Lexi continues to have some emotional issues from having to go through everything she did as Taylor’s diagnosis changed her life. Lovely Peyton, who was only 3 months old when Taylor was diagnosed, thinks the hospital is home away form home and Taylor’s nurse Dawn is her best friend. What would we do without our Dawn Dawn? I continue to do my nightly fever checks of all 3 of my girls before I go to bed. Not so crazy that I get the thermometer or tempadots out every night…just a forehead fever check. If I see a few too many bruises on any of my three daughters and I take a deep breath and reassure myself…that every bruise does not mean Leukemia. Taylor got her first low-grade fever off chemo and I gave myself a pat on the back for NOT running to the computer to research additional symptoms of relapse and assess Taylor for all of them. Maybe part of it is…by now I know all of the symptoms of a relapse so well by heart because over the past 3 years I have run to the computer to look them up over and over again. I wouldn’t say that I am paranoid or dwell on the negative…more…aware of the realities. The reality is one day…my perfectly healthy 4-year old was starting preschool and 9 days later I was rushing her to the Emergency Room on her Pediatrician’s orders because she had Leukemia. The only symptom was a low-grade fever off and on for 7 days. Life is so very fragile! At any moment in any day our lives can change. That moment for me was 7:15 PM on September 13, 2007.
Send Hugs to Taylor.
Mrs. Ayling