10mo Old baby girl fighting cancer

This is Evelyn. She is 10 months old, and on 10-26-2018 was diagnosed with Primitive Myxoid Mensenchymal Tumor of Infancy. Currently we do not know much. What we do know is that she is going to have an unknown amount of treatment due to the nature of this cancer. Only 36 cases of this have ever been identified, and there has only been 1 case where it was "cured". That case is still only 2 years ongoing since the date of "cure", so everything is experimental. There is no defined treatment protocol for this cancer, and there are currently no studies going on anywhere on earth.  All of the studies on this cancer are retroactive. This is due to the nature of the cancer, and the rarity. There simply aren't enough cases to warrant a study of this cancer on any large scale. Our daughters doctors now get to play scientist and try to throw their best guesses at it. During the course of treatment we will be required to travel all over the United States in order to see the teams that think they can help. That is very difficult for my family because it means that I will have to take anywhere from 1 to 4+ weeks off of work at a time in order to travel with my family. Hotel rooms, food, and flights are not very affordable. Couple that with the fact that my income is taking a massive hit with me taking time off, and it is very realistic that we could lose our home, and everything else along with it. We hope this campaign will help us stave off financial ruin for as long as possible, and maybe give us enough time for treatments to work, and Evelyn to recover.  Evelyn does not have much of a story currently. She is 10 months old, and for the most part, has lived a very normal life. All of her development was as normal as it could be; from babbling, to rolling over, to crawling, to taming her first steps. It was all just a normal life up until about 3 weeks ago.  I first noticed a lump growing on her back in mid August when she was 8 months old, but we decided to wait to take her to the doctor unless it grew, (which it didn't at that time). A few weeks passed, and her 9 month pediatrician appointment came. We showed the doctor the lump, and she scheduled an ultrasound immediately, (2 weeks in the future). During the 2 week wait to get the ultrasound, the lump tripled in size, and became very firm.  After taking her to the ultrasound appointment, we made our way home, and upon arriving at home my wife received a phone call from the pediatrician. it was a phone call that we will never forget. The results of the ultrasound showed a growth that was quite concerning for the doctor, and they immediately reserved a room for us at the local childrens cancer center.  Over the next few days several MRIs, a CT scan, Bone Scan, Lumbar puncture, and a Biopsy were performed on our baby. At the end of a week long wait, we found our worst fears were realized; that she indeed has cancer. At first the diagnosis was Rhabdomyosarcoma, a rare, but understood cancer with a defined treatment protocol. Upsetting, but manageable. That all changed soon afterwards when they informed,us that they were wrong and the cancer is actually PMMTI. Evelyn is in the beginning stages of the most intense fight of her life, and she has a very long way to go.   The funds that are raised during this campaign will go toward funding the medical bills that we are receiving, and will continue to receive for the entirety of her treatment, travel expenses, and monthly bills that are going to be out of reach because of the time,I am taking,off of work.    My wife has quit her job in order to provide full time care for our daughter. This is a fantastic thing for our home life, but it comes a great cost to our financial situation, and incredible stress on my work/home balance. For all we know, I could be spending the last few months of her life at work to pay for her treatments; all while losing the only time I will ever have to spend with her.  I would like to leave you all with this: As a parent of a small child who has cancer, the pain you feel is immense. it takes a very large emotional toll on you, and there is no getting away from it. After taking some time to think about what it is that makes the largest impact on my own personal psyche, I realized that its the loss of potential that truly pains me.  My greatest fear is that i will never get to talk to my baby girl. That we will never get to discuss how school was on any given day. Or to have the ability to teach her something suddenly become only an idea that lives inside of my mind. A dream that can never be realized.  Thank you for taking the time to read through this post, and if you have the inclination, for donating however much to the fund.  -Nick

Organizer

Nick Pelletier 
Organizer
Tucson, AZ

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