Ellie (two) is the daughter of Kyle and Sarah, she also has a big sister named Ava (5)! On December 21st, 2012 we welcomed our second beautiful daughter into this world. For the first three months, everything seemed fine, and our biggest issue was deciding what brand of diapers to buy. At four months old, we started to notice that her soft spot looked different, and was actually bulging from her h
ead. After talking to two different doctors, both who said they thought this was normal, we finally found a doctor who thought she deserved a second look. May 7th, 2013 was the day our life changed, after taking her to the family physician, he insisted that we take her to the emergency room for a CT scan. The hospital thought that she just had fluid on the brain, also known as, hydrocephalus. After a ultrasound, cat scan, and MRI; Ellie was diagnosed with a brain tumor that was 1/3rd the size of her brain. I can't describe the feelings you feel when you hear the words "your child has a tumor" its a rollercoaster of emotions, and all I remember is crying, and asking god "why?" We were seated in a tiny room, as the neurosurgeon told us that our four month old daughter would need brain surgery right away, and that her chances of survival were slim. We were asked if we wanted to sign a DNR, and then we were told that if she did make it she would possibly have brain damage, and wouldn't be the "normal" little girl we knew. May 8th, 2013 Ellie underwent her first brain surgery to remove the tumor, this surgery took nine hours; I have never thrown up so much in my life. May 12th, 2013 we found out that her ventricles weren't working, and that is when she was diagnosed with Hydrocephalus. She underwent her second brain surgery that day, to place a VP shunt. Later that week, we got her tumor biopsy back which told us her tumor was Desmoplastic infantile ganglioglioma/astrocytoma; there have only ever been 60 known cases, and very little information on it, and because of that our doctors weren't sure how to treat it. We waited three months, and scanned her again; those scans showed tumor growth large enough to need another brain surgery and at eight months old our little girl underwent her third 7 hour brain surgery. By now we knew what to expect and we knew that she would be just fine, especially since we decided to take her to a new hospital, one that had more experience in childhood tumors. By now Ellie has surpassed every statistic, she has rolled over and started crawling; proving every doctor wrong! She is a miracle, by the grace of god, she is a walking and talking miracle. Three weeks after Ellie's third brain surgery scans again showed tumor growth, this is when we decided to start our little eight month old baby, on chemotherapy. By now we have already been through hell and back, but I would walk through hell a million times for my girls. Chemotherapy has been a rough road, Ellie has developed neuropathy as a side effect of one of her chemo drugs, and she is in constant pain. She is always sick, and throwing up, often has fevers, and is even allergic to the chemotherapy drugs that they give her. She was supposed to be on chemotherapy for a year but half way through treatment on June 25, 2014 Ellie had a seizure; this prompted another MRI, which showed us that her tumor is no longer responding to the chemotherapy treatment, and has grown. August 2014 she underwent her fourth brain surgery, removing most of the tumor. A week later she had her fifth brain surgery to replace her shunt, and place a programmable one. After this shunt was placed, Ellie started having fevers; these toped 105 degrees, scans show that she had meningitis, so her shunt was removed and a EVD was placed. We spent over a month in the hospital as we watched our little girl fight so hard, and come so close to death. In October 2014 she had her seventh brain surgery to replace her shunt. After seven brain surgeries it still never gets any easier to hand her over to doctors and nurses. It never gets easier to watch her in pain when all you want to do is take her pain away. In November 2014, Ellie's shunt became disconnected and was moving underneath her skin, because of this she had to undergo her eighth brain surgery to fix it. During our stay in October Ellie had numerous MRI's, ct scans, and x-rays, these showed that her tumor is growing again, but at a very slow rate. Slow enough that we decided to give her time off from treatment to heal from the infection, brain swelling, and fluid buildup. Ellie has a very special case of hydrocephalus, because hers was caused by numerous tumor removal surgeries, we often run into issues with draining excessive fluid from her head. Ellie's skull is not fused together like everyone else is; in fact Ellie has quite a few holes that allow spinal fluid to leak outside of her skull, this can be very painful as this swelling causes her head at times to become very large, it also causes her nausea, headaches, vomiting, and sometimes fevers. On February 11, 2015 Ellie got her port removed because it had stopped working. Then on February 27th, Ellie had another shunt revision, because the fluid was not draining at a fast enough rate. Ellie soon after started speech, occupational, and physical therapy; which have helped her so much! As march came along, Ellie was still having shunt problems as well as fevers, nausea, and vomiting. She didn't sleep much, maybe four hours a night, and stopped eating; so a feeding tube was placed to help get her some nutrients. On March 31, 2015 Ellie had another brain surgery, her tenth to be exact, she had the valve of the shunt replaced from a programmable valve to a delta valve, to allow for constant flow of fluid. We had hoped that this would help the swelling but a few weeks passed and still no change. On the 22nd of April, Ellie had her 11th brain surgery at the age of two. Since this surgery Ellie has had no swelling! They placed a catheter from the valve of the shunt into the area that swells with fluid, to allow the fluid to drain easier and faster. As of April 2015, her MRI showed that the tumor is still growing, but as long as the growth stays below 25% they do not want to do anymore chemotherapy, because of the harsh effects it can have on a child of her age (the main way to deal with Ellie's tumor type is usually brain surgery to remove it). Ellie has been in some significant pain, she has been walking funny and complaining of her legs hurting her. The doctors are worried that she may have more serious issues, so she will be getting a full body MRI in May. Although our story sounds awful, we choose to see our story as a blessing, because right now we have two beautiful daughters who we get to see smile and laugh! "Our family is not defined by cancer, but by the strength we have to make it through!" -Sarah Walton
www.prayersforellie.com
Ellie is currently receiving treatment at Seattle Children's hospital
If you want to send things to ellie you can send them to PO BOX 5094 Spanaway WA 98387
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