Our Ellie

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Ellie was born in a snow storm, we were happily tucked away in our hospital room while the world dealt with the crazy weather outside.  With Ellie’s arrival we were the “perfect little family of four”.  She was a super cute little lady, with the best chubby cheeks!  As she grew her attitude grew with her!  Always the sweet girl, but with a true princess attitude!

Ellie inspired me to start crocheting, all those cute girl clothes, needed cute hair bows.  We learned together and before too long, I started my own little side job of selling hats and hairbows at craft shows and online.  She was the perfect model, cute as could be and usually left whatever hat I put on her head alone.

Ellie and her brother Noah became good buddies.  Of course they would hollar and tattle on each other, but they were always playing together.  When we found out we were pregnant with baby #3, I was so excited to find out it was a girl.  I know how special a sister bond is, and with only 2 years between them, I knew they would be close.

On Ellie’s second birthday she began to throw up.  Looking back, I remember thinking, “oh great, she’s going to be sick at her party”.  We warned all her party guests that she had thrown up, but seemed to be fine afterwards.  She did fine the morning of her party, but by party time she was a cranky lump.  She didn’t want to open presents or eat her own cake.  We laid her down for a nap, thinking….wow she must be really sick (we had no idea).  She went to the doctor that Monday and we were told she had a stomach virus, give her a few days.  By Wednesday she was refusing to eat or drink and all she would do was lay in her bed.  Again we took her back to the pediatrician, she was given fluids for dehydration.  By the next day my Mommy brain said “This isn’t right”, we took her to the ER.  They gave her two more bags of fluid, ran some tests and found nothing.  We were told to follow up with the pediatrician the next day.  She was no longer dehydrated, and we throught she was perking up. After another week of doctor’s appointments, one more trip to the ER, and no improvement in Ellie, we were at a loss.  Every trip to the doctor brought new hope, which was usually followed by frustration the next day when there was no change.  At this point, Ellie was still fighting us to drink and eat.  She only wanted to lay in bed and when she walked it was in circles.  It wasn’t until I got her to smile for a picture, I noticed that one side of her face didn’t smile.  We then began to notice her eyes were very wide and her pupils just didn’t look right.  Once again Ellie was sent to the ER, this time she was sent to get a CT scan within moments of her arrival.  This is where life forever changed.

Richard was with her at the time and was told there was a mass in her brain, and she had severe swelling.  I made it to the hospital right before they took her off to her first surgery to place a drain in her brain to get the fluid out.  Two days later she underwent another surgery to remove as much of the tumor as possible, to biopsy it and to and drill a hole in Ellie’s brain to let the fluid drain.  The procedure was called an Endoscopic Third Ventriulostomy (ETV).   The ETV was successful and the surgeon was able to remove about 80% of Ellie’s tumor.  We stayed at UVA for a week, and with the help of wonderful nurses and therapists, Ellie quickly recovered from surgeries.  On Monday, February 18th the oncologist came to explain what Ellie has, her surgeron had told us what kind of tumor he thought it was, so we were prepared, but hoped that maybe he was wrong.   Her tumor is a Pineoblastoma, a rare malignant brain tumor, or you can call it a rare brain cancer. Childhood pineoblastomas represent less than 2% of all childhood and adult brain tumors. There wasn’t a lot of information he could give us on her tumor, because frankly there isn’t much research done on it.

The orginal plan was for Ellie to go to Children’s Hosptial in Washington, DC, however through numerous God door openings and closings, we choose St. Jude Children’s Research Hopstial.  The choice wasn’t an easy one to make, because it required us to split our family in two.  However after much prayer we decided it was the best choice for Ellie.  Ellie and Richard left for St. Jude on March 9th, and started her treatment a week later on March 18th.  She is currently scheduled for 4 rounds of chemotherapy, with an MRI scheduled for May 8th to see what the rest of her tumor looks like, if its still there at all.

We truely believe that the Lord has chosen our family for this special blessing.  We have been able to share our story with people all over.  Along with bringing awareness to this disease, we are able to share our beliefs and God’s love.  Words cannot even begin to express how thankful we are to all of those who are supporting us in prayer and in so many other ways.

 

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