#rarecancer

Eve and Ella were born at 9PM (twins) on December 19th 2017.  We were so happy and overcome with joy.  I kept them in my belly for 37 weeks and 2 days.  This is great considering twins often are born early.  The first few days in the hospital were tough and overwhelming.  They were jaundice and needed to be placed under lights to assist with resolving that issue.  After 3 long days, we brought them home.  YAY!!!

Wow, it was a lot the first couple of days.  I didn't realize how tough it is to care for newborn twins.  No sleep, constant feeds, changing diapers, and all around caring for them round the clock.  I actually now realize how easy that time was, and had know idea what was to come.  

On day 10, Little Miss Eve stopped eating and was very lethargic.  We rushed her to the hospital, not realizing she wouldn't be returning home.  She wouldn't be returning home that day, week, or month.  

At the hospital, New Years Eve, Eve’s vitals began to drop and her color faded.  The next morning, the surgeons did exploratory surgery on her abdomen.  They discovered it was a volvulus.  A volvulus is when a loop of intestine twists around itself and the mesentery that supports it, resulting in a bowel obstruction.  The removed that portion of the bowel and she was provided an ostomy bag.  

When she came out of surgery, she was on life support for 11 horrible days.  She was only able to withstand a few ml a day of fluids through a feeding tube.  She was hooked up to so many machines, i cannot count them on both of my hands.  Shortly after, she suffered from severe septic shock.  She also had kidney and liver failure, as well as cardiac arrest. This was due to removal of a portion of her bowel.  She was very sick.  I remember asking one of the doctors if she was going to pull through.  The doctor’s response was, “I hoped she would have pulled through this easier.  This isn't looking so great.”  At that point, i broke down.  My husband had to come down and take my place at the hospital.  He was at home caring for Eve’s twin, Ella.  I returned home to be with Ella.

Approximately 5 days after all of this, both twins were diagnosed with a rare eye cancer known as Retinoblastoma.  Retinoblastoma (Rb) is a rare form of cancer that rapidly develops from the immature cells of a retina, the light-detecting tissue of the eye.  Eve would need to be flown to a hospital 2 hours away.  Ella would also have to start treatment (chemotherapy) 2 hours away at the same hospital where Eve would be transported to.

All of this was just so hard to take in.  I felt as though I couldn't breathe.  It was so hard to believe one day they are at home, the next there are terribly sick.  This is only the beginning of our story.  I will continue post our journey daily, until I am up-to-date.  They are 1 yr old now, and they are still on their cancer journey.  

Please feel free to like, comment, share, or ask questions.  

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