Honored Kid

Annalise P.

Annalise P. Kid Photo

Location

Canandaigau, NY, US

Diagnosis

Neuroblastoma

Date of Diagnosis

July 2007

Status

Angel

Treated At

Memorial Sloan Kettering Cancer Center Golisano Children's Hospital, Rochester

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My Story

Annalise was diagnosed with Neuroblastoma on July 16th, 2007, a day that will be remembered forever. It is something that turns your world upside down, shakes it around and lets the pieces fall where they may. She underwent a total of 8 rounds of chemotherapy, before having her adrenal gland, primary site, out in March 2008. She began on a set protocol of chemotherapy and in November 2007, following a routine bone marrow biopsy, her treatment changed. They discovered that there was still disease in her bone marrow, so she had to have more potent chemo. Annie had three rounds of this new drug. This got her into remission so they could proceed with surgery to remove her adrenal gland and ultimately autologous bone marrow transplant, on April 24th, 2008. It was a wonderful day to her new cancer free life!! Annalise does have blood pressure and kidney issues from the chemo drugs, but she is working to resolve them. Annalise is a wonderful, playful, mischievous 4 year old, going to preschool and scattering her toys everywhere. Gotta love it!!!!! :) It is now January of 2012 and lots has happened since the above entry.......... She is now 7 years old, wow, 7 where has the time gone. She has been on this journey for more than half her life. She was diagnosed 4.5 years ago. Annalise was in remission for a year and a half. In August of 2009 during one of her routine imaging scans the spot on the top of her head lit up again. We learned a week before she was supposed to start Kindergarten that she has relapsed!!! heartbreaking!! all that she had been thru with transplant and the chemo and the radiation, for what?? to relapse..... We all went to Disney World on a Make a Wish trip and it was wonderful!! They treated us like royalty, especially Annalise :) She deserved every minute of it. Upon return, she started chemo and kindergarten. She had several rounds of different combinations of chemotherapy. Due to the side effects, she spent more time out of school than in school, but she cherished the days she could be with her friends at school. In the early Winter, it was decided that we needed to take Annalise to Sloan Kettering in NYC for further treatments. It was so hard to hear that our home hospital couldn't help Annalise anymore :( We took her to Sloan in January of 2010 and they told us to take her home, get her stronger and fatten her up. We took that as they couldn't do anything for her either....such a long plane ride home that night....... Upon return, we continued to do some low dose chemo to keep her active sites in check. And that is what it did. We discontinued chemo in the Spring at the recommendation of her Oncology team. They wanted to see if the chemo was helping or if it was more harm to her overall health from the side effects. Or, was the nature of her beast stable on its own?? That was a very hard thing to do, but we felt they knew what they were doing and we had trusted them with her life for the past 3 years, literally. Annalise's imaging continued to remain stable. no growth of the tumors or new growth, but still there none the less. She finished Kindergarten and moved to 1st grade. She only missed a handful of days from absences in first grade, where kindergarten, she missed 2/3 of the days. We took her back to Sloan Kettering in the Spring of 2011 and they sent us home with a whole page of options this time, from very mild to the side-effects from this chemo could potentially kill her. How aggressive do you want to be was the decision we had to make for her. that is a tough thing for a parent. We decided on a phase 1 trial drug, very few known side-effects, not very aggresive, so she could remain in school, but also with no promises. It could potentially knock out the active disease or on the other end of the spectrum, it could do nothing and the disease could spread. Who knows, but we took the chance and enrolled her in the study. It is now January 2012 and Annalise has been on the study drug for almost 9 months. Her imaging has remained stable and her bone marrow samples remain clean and clear. We travel to Sloan every 4 weeks to get her checked out and pick up the drug. 7 years old and has frequent flyer status. She loves it, loves the adventure and the hub bub of the big city :) Also a big 2nd grader :) Not everything has been smooth though. Annie developed a pneumonia in August and hasn't seemed to be able to completely get rid of it. She has had a cough and recurrent pneumonias since August. She was hospitalized a week and a half ago with it again. We had been able to treat at home the times before, but something was different about this one, she would get coughing and not be able to stop, wouldn't be able to catch her breath, or a couple of times it seemed like she couldn't breath, so off to the ER we went. She is still at Strong enjoying some R&R and all that comes to being inpatient at Strong for her. she gets spoiled rotten there and she knows it :) 4.5 years of this journey in a nutshell....there are many details that have been left out of the above story, but if everything was included, this would be 10 pages long. If you would like to check out her long journey feel free to check out her caring bridge page. http://www.caringbridge.org/visit/annalisepelton/journal This journey has been heartbreaking, emotional, exhausting, challenging, a roller coaster, and yes, even joyful. As much as I would definitely change some of what has happened over the past 4.5 years of Annalise's life, there are parts of it that I wouldn't change for anything. Some of the people and experience are priceless and i am thankful for that. We have tried our hardest to make this journey as positive of an experience for Annalise as possible. It is hard enough to know that as a parent you are consciously making decisions for your child that puts them at such huge risks, but what choice do you have?? St. Baldricks is a wonderful organization that raise research money for pediatric cancer and pediatric cancer alone. Next to the government, they are the biggest source for $ for research to find a cure for the cancers that attack our children. Our future is these kids and they are the least funded of all the cancer types...........

The Childhood Cancer Ripple Effect

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