Go Gold for Lily

Lily was born on September 11, 2013. She was delivered by c-section @Amplatz Children's Hospital in Minneapolis. Lily was born with Congenital Hydrocephalus which was due to a malformation in her brain. This was found on her 18 week ultrasound . Lily's Mom was told that Lily was missing the bundle of nerve fibers that help the two sides of her brain communicate with other and that Lily would not have the quality of life that other children would and that it would be best to end the pregnancy. Shelby did not give up on her little girl, she knew that she had to continue with her pregnancy. After Lily was born she had a shunt placed in her brain which allowed her spinal fluid to drain into her abdominal cavity where it would be reabsorbed. This was a lifesaving measure for Lily and it was working beautifully. Lily came home and was growing and developing normally. It was the first time since her inutero diagnosis that we knew Lily was going to be fine . We all loved that little girl with all our hearts and she loved us. But on the day of her four month well baby checkup we were given unimaginable news. Lily had Cancer (ALL). Lily had been through so much already and was on the road to healing and now to get this devastating diagnosis. Words cannot explain what we were all going through. Our sweet little Lily had to endure even more hardship. Lily was sent to the Sanford Childrens Hospital in Fargo to determine what could be done. We met with Dr's and again Lily was given no chance of survival. We had to make some decisions. The Dr told us that we could 1. not treat the cancer and take Lily home (hospice)and let her pass away or 2. they could start treatment (high dose chemotherapy) knowing that the chances of her making it through the first couple of weeks of chemo treatment was little to none. They told us that Lily was a difficult case to treat because of her Hydrocephalus and her age at diagnosis. Shelby again made the decision to fight for her little girl. The road has been a tough one but Lily survived and went into Remission. Lily surpassed all odds and fought with everything she had in her. She was doing amazing. She was crawling and talking and playing just like any other little girl. Unfortunately I am writing this today (11/28/2015) because we got news that Lily's cancer is back and that she is very sick. The next part you read is a Facebook post of Shelby's about Lily's prognosis ....................It kills me to write this but I want to inform all my friends & family I haven't had a chance to speak to yet. Lily has relapsed. Her cancer is back & more aggressive. Her organs especially her intestines have been badly damaged from the chemo she's already on & our only chance was a bone marrow transplant..however the doctors have said she will not survive transplant or any more aggressive chemo & there is no hope of curing Lily's cancer. Our only option at this point is to bring Lily home to spend the last of her time surrounded by everyone who loves her. She needs all the love & prayers she can get right now. & when we come home I wish for everyone to come & spend as much time with lily as possible & make her feel as happy & loved as we possibly can.......

Shelby has not been able to work because she has been Lily's main care giver and has not left Lily's side throughout this struggle. Family has covered costs for the last two years and now are short on money as well. We are now turning to and asking for help from our community. There are as you can imagine bills upon bills to pay and now possible funeral costs and other expenses that go along with that. We know that budgets are tight this time of year, but even a small amount will help. We want to make her final time on earth as wonderful as we possibly can. If you cannot donate financially, a prayer is needed and appreciated more than you could ever know. Please help us say goodbye to our beautiful Lily Sue...



Donations

  • Lisa Haeusser 
    • $30 
    • 53 mos
  • David Dunham 
    • $25 
    • 53 mos
  • Mason Moen 
    • $100 
    • 53 mos
  • Anonymous 
    • $100 
    • 53 mos
  • Jennifer Johnson 
    • $25 
    • 53 mos
See all

Organizer

Tami Voll 
Organizer
East Grand Forks, MN
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