Brain Tumor Survivor: Ivory
Last updated: 10/25/2014
Ivory age 5 was sick for almost a year when we were sent to the er once again. This time the doctor called the family doc and a x-ray and ct decided to be done. The x-ray showed nothing. It was when I saw the doctor walk in that I knew some thing was wrong. Then I heard the words there is a large mass on the back of her brain. From there we were transported to a children hospital. Surgery was done the 48 hours later. A 10th of a percent had to be left behind Ivory made it threw surgery doing great. Until a few days later when she was rushed back to the PI CU. She had prated her bowel hours before. She was rushed to surgery where everything looked fine. Then Five days later a CT showed that she had reparteed her bowel days before. She was rush back to surgery once again. While in surgery she went in to a coma for weeks. While in the coma she had developed ARDS and kidney failure. She also became septic. After weeks in the coma she showed signs of waking up so it was decided that a trachea needed to be placed to move her to radiation which was weeks past due to start. They said due the brain tumor and coma she would never walk again.
Boy were they wrong not even a month later she was walking. Ivory did radiation and all follow up MRI's without sedation. Ivory did not have to do chemo just radiation. The thing is that when Ivory was in the coma her body was able to fight off the 10th of a precent of tumor that was left behind. To date Ivory still has problems with her lungs and tummy but is cancer free. We still do the MRI's every 3 months. She has short term memory lost and blance problems. Two years later she is still cancer free and living life to the fullest.
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We have had our 2 and a half year mark MRI. It was clean no sign of tumor. We have learned that the tumor surgery did cause more problems with her eye muscles then we thought. They surgery did damage the muscles and her body has repaired itself the best it can. We will learn the date of surgery for the eyes soon.
Update 2/8/2011I am so sorry. I was going to update soon.
Ivory is doing good. She is handling every thing with grace that comes her way. They have found a non-cancer tumor in the base of her spine. The problem is that it causes so much pain. They are saying that the best thing is to wait a while longer before taking any big actions. She had her first eye surgery in 8/10 and will have another 2/22/11. The tumor damaged the muscles and now they are needing fixed. She goes to school when she can due to side effects from every thing that happened in 2008 she gets sick often. She tries to be there for others as they go threw their cancer treatment.
Ivory remains in remission she is now 3 years in remission and 4 years after dx. She still has many health issues that we deal with daily. But since December 10 2011 we have done two things that we were told in 08 that would never happen. First we celebrated her 9th birthday!!!!! And on 1~05~2012 we celebrated the 4 year mark since dx. One side effect we are told from the radiation treatment is that she is growing faster then she should. She will start shots to slow things down until she can catch up. Ivory has now has 2 eye surgery to help correct her eye muscles that in part is believed to be from the tumor. But as she says to me often "Life is all good as long as I dont hear the words "the cancer is back".
Ivory is now doing her MRI's every 6 months and is stable. Due to the side effects of treatments, her body has aged much faster. She is still seeing many differnt doctors to control her medications. Over the last year or so, she has had to start seeing the Pain Clinic as the pain was getting out of control. She is, other than that, a very happy, loving child who loves life to the fullest. She tries to help all who she learns have cancer or any medical problem. She tells them to count their blessings and not their loses, because there are so many that can no long stand here and do so. Ivory has some learning delays from the tumor but has a great love for learning. She all too often misses school due to illness as her body still has trouble fighting off germs. www.caringbridge.org/visit/ivoryisaac
Ivory is doing great and, after 5 years, has finally had surgery to repair damage to her tummy which occured after she was diagnosed with a brain tumor in 2008. She remains cancer free and does all she can to help others who are told they have cancer. April 21st, 2013 will mark five years since her last treatment of radiation. She was also just moved to every 12 months for her MRIs after the last MRI in December, 2012.
Ivory is CANCER FREE AND IN REMISSION as of 4/22/2013!! She is still a little behind those her age but not by much. We were moved to once-a-year MRIs. Ivory is doing great. In fact, her reading has gone from a 1st grade level to a 4th grade level this year. Ivory's tumor in her spine as been "classified" as a fatty tumor that we will continue to watch. She often has pain in the spine and head but is getting better with time. Ivory is now 10 years old and doing so much better than they said she would ever do.
Ivory had surgery to fix an abdominal hernia and to remove her gall bladder. She was in surgery for over 9 hours and did wonderful. The hernia repair closed the muscles that had made her balance uneven; she had a lot of trouble with her balance. Now she has gained better balance, better than they thought she would. She has had many side effects from medication or radiation. The radiation caused delays in learning, comprehension and memory. She is still having headaches but not as often. We are now 6 years out from diagnosis and the brain surgery. Ivory had her last MRI in December, 2013 and it was NED (no evidence of disease)!!! Scar tissue is heavy but that is to be expected from the surgery and radiation. Now 11 years old, she does all she can to bring awareness about brain tumors and the need for a cure.
Ivory is six years out from diagnosis and doing very well. There is no evidence of disease on her MRI's. She is due for the next MRI in December.
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