Truly Inspiring: Shelby’s Story

Shelby was born March 30, 2006 and was by all accounts a typical baby except for a light case of lazy eye that we were told she would most likely outgrow before we needed to intervene.  She met all her baby goals on time except that she was a bit of a late walker at 14 1/2 months.  I became pregnant with her little brother when she was 10 months old (surprise!), so as the Mommy I was anxious for her to be walking before he came!  She did not get past the “drunken sailor” stage – she used something to walk with most of the time (a toy or a hand) and when she walked by herself she would lay her head on her shoulder.  Her Daddy and Grandpa had both had a lazy eye that required patching to correct and that, paired with her walking, concerned us enough to take her in to an ophthalmologist when she was 17 months old.  We were instructed to keep an eye on it, but there was no need to be worried just yet.

Not long after that our family flew back to the Midwest, from Georgia, where we were stationed at Fort Gordon, to have a last visit with my grandmother whom wasn’t expected to live long enough for us to go after the baby was born.  She was suffering from her second bout with colon cancer.  As soon as we got off of the plane Shelby’s nose started running and she seemed just generally miserable.  We assumed that she was suffering from allergies in this new climate as she would spit up mucous as soon as she woke up and her nose continued to run constantly.  Halfway through our trip, she lost her balance and fell from a camper straight onto her head on the cement pad.  We rushed her to the ER explaining the fall, throwing up and the flight.  We were told to just let her go to sleep since she was tired, her eyes looked fine, there was no concussion.  We asked about a CT scan but were told that would only be needed if she had a concussion.  Nothing changed the rest of our trip, but she did not improve either.

We flew back on a Wednesday, and I took her to the pediatrician on Friday where I was told that she had an upper respiratory infection that should be gone within 10 days.  She kept getting worse so I took her into the ER that Wednesday where she was given IV fluids, a chest X-ray and anti-nausea medicine. By Friday she had stopped walking completely and I rushed her back in.  She was admitted to the hospital and given more chest and abdominal x-rays.  I kept reminding the doctors of the fall to her head, asking if they should do a scan of it, but they thought she had an intestinal blockage of some sort. We were released from the hospital on Sunday since she had not thrown up while we were there (she had been laying in a bed hooked up to an IV the entire time).  As we got her ready to leave, she threw up again before we even got out of her room.  Again we were told to go home but come back if she got worse.

By Tuesday evening, she was throwing up constantly so I took her back in to the ER.  After more x-rays and scans of her chest and abdomen, there was a shift change and we got a new doctor that listened when I mentioned the fall to her head and the fact that she had stopped walking.  He sent us for a CT scan and finally after nearly three weeks of questions, at one in the morning, I was told that her head was full of fluid and what looked like a large mass at the back of her skull.  The army hospital was not set up to care for children, so we were taken by ambulance downtown to the children’s hospital, MCG.  She and I sat in their ER while a room was prepared for us.  I got to hold her on the gurney ride up to her room and while she was given an IV for the sedation medication so that a drain could be placed in her skull.  That was the last time I got to hold my baby for nearly two weeks.

An MRI was done that day to get a clearer picture of what exactly was in her brain.  Once the pictures came back, we met with the Pediatric Hematology/Oncology team and the surgeon that would do her resection.  The consensus was that surgery was a must as the tumor was wrapped around her basil artery, slowly suffocating her brain.  Surgery was scheduled the next morning and when talking with the surgeon after we were amazed at the miracle that occurred!

Typically, with her type of tumor (a posterior fossa ependymoma), the surgeon is able to remove the large central mass, but the tendrils throughout the brain tend to break off.  During Shelby’s surgery the tendrils remained attached (except for one little pesky piece that was removed the next day) and we had a complete resection!!  This was the absolute best case scenario we could expect, although it was recommended that she have 30 days of radiation therapy to help kill off any remaining cells that might be left.  It was on my husband’s 34th birthday that we were told the tumor had been stage 3 cancerous. We thought that this was the hard part and that we’d be back home in a few days, once Shelby was able to drain the fluid from her brain on her own.  Little did we know that our journey had just begun.

During our PICU stay, we learned about extubation (removing the breathing tube), EVD’s (internal ventricle drains), DVT’s (deep vein thrombosis) and how difficult it is to keep a determined 18-month-old baby under sedation if she’s ready to wake up!  We spent nearly two weeks in the PICU before being moved to the regular pediatric cancer area.  It was here that we learned about posterior fossa syndrome and the fact that our Shelby might never learn to walk, talk or even eat and drink on her own again. Those silly doctors forgot to give Shelby THAT note.  It was about a week later that she pointed at the door and said very clearly “Go!”  

Shelby started what we came to call her “work” while inpatient.  She would do physical therapy, occupational therapy and speech therapy each day, all to get as much feeling as possible back to her right side.  Because of the placement of the tumor and the surgery required to get it out, Shelby was left with no feeling at all on the right side of her body.  She has “phantom pains” similar to those felt by amputees and therefore picks at the spot trying to stop it.  She has chewed off the corner of her lips, picked off a small portion of her nose and given herself an 80% corneal abrasion because of this.  She would have to wear “no-no’s” which kept her from being able to bend her elbows to try to stop the picking.  She is legally blind in her right eye and we’ve had to stitch the corner of her eye closed to try to protect what sight she has left.  As she’s gotten older, her picking has diminished a lot so we are hopeful that the damage to her face will be able to be repaired at some time.

October 31, 2007 was one of our busiest days since Shelby’s illness.  It was this day that she first scratched her eye, had her first radiation treatment, had her G-tube installed in her stomach AND her baby brother was born!  Shelby wasn’t too sure about that little guy at first and Mommy was super worried about caring for two babies that couldn’t walk or eat on their own, but they have become the best of friends and even tell people that they are twins (just 19 months apart!).

Shelby started walking with the help of a walker not too long after her second birthday.  And now, at six, she walks (or runs) so well on her own.  Many people in meeting her for the first time have no idea of her past, she compensates so well.  Shelby is in a regular kindergarten class but is allowed a few modifications, she sits with her left side facing the teacher so that she can see and hear better (she is also deaf on the right side, which was discovered about a year ago).  She’s also allowed to walk with her arms out for balance and is given extra time on some writing as this is still a bit difficult for her (she now writes left handed).

Through everything, our little girl has kept her sweet smile and a great attitude.  She is a wonderful testimony to many other cancer patients that we meet, especially the older ones.  She has no fear of the elderly and seems to have an almost sixth sense about her when meeting other cancer patients.  She will seek out strangers just to touch their hand and it’s only later that we learn they are going through treatment or just got a diagnosis.  

Because of her great attitude, Shelby is going to receive the Young Heroes award on May 12th at Madigan Army Hospital in Tacoma, WA.  The award is given to children facing terminal or life altering illness that have a giving attitude and outlook despite of what they face.  If there was an award tailor-made for our little girl, it’s this one. When life gave her lemons, she made lemon-aide and shared its sweetness with everyone she knew!!

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About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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