Truly Inspiring: A Letter to Sophia

Dear Sophia,

Knock-Knock.

Who’s There?

Chair.

Chair Who?

Aren’t you glad I didn’t say banana again??

Remember how you loved to tell knock-knock jokes? You would look around the room, trying to quickly figure out something to say for who is there. Sometimes it was an object in the room that you spotted, like a wall or a fork. Other times, you would use the names of your favorite cartoon characters. Dora, Blue, and all the Backyardigans took turns being the person at the door. Usually the punch line would be, “Aren’t you glad I didn’t say banana again.” After telling the joke, we would all laugh quite loud. You knew you were pretty funny, didn’t you?

How can it be that it has been over three years since we last were able to hold you in our arms? Have no doubt that we think about you each day. No words could describe how much we miss you. We often wonder what you would look like today. Recently, we saw friends of yours at a race. They had grown so big and strong. It took our breath away to think that if you had survived, you would be that big, too. What would you be doing now? Would you be reading chapter books and talking about how boys are yucky? What would your voice sound like? Would the sound of your laughter still sound magical and musical? (Of course your laughter would still melt our hearts.) Would you and your baby sister be best friends?

There is something crazy that you should know. Your baby sister is now older than you. Can you believe it? You died before you turned 4 ½ years old. She’s passed that point and is headed towards being a five-year-old. That will be a bittersweet day when she turns five because you never got to be five-years-old. She’s now doing things that you never did when you were alive. She goes to preschool and plays with lots of friends. She’s so excited to have more friends than fingers on her hands. It is wonderful to see, but I always remember how you once told us that you wish you had friends. You had been isolated for such a long time after you were diagnosed with cancer and you truly wanted to have friends. Thankfully, you made some friends through Gymboree and Camp Sunshine.  Sadly, some of those friends are in heaven with you now.

Every milestone your sister reaches now will be one you never reached. We grieve not only for you, but also for the loss of our dreams for you. We used to imagine going to PTA meetings to watch you sing with your classmates. That is one dream that was destroyed. We will never watch you lose your first tooth. We will never watch you excitedly go on your first date. There will be no graduation or wedding day to attend. We will never get to watch you hold your own child. A lifetime of dreams floated away when we lost you to brain cancer.

Sometimes it is hard to sleep at night because we miss you so much. Thankfully we have lots of videos of your beautiful self. We always smile and cry when we watch them because it is wonderful to hear your voice and laughter again, but it makes us miss you even more.  We want you back. We want you back whole and healed.

However, do not fret because we are learning to live in our new reality: a world without our beloved Sophia. The first few years we managed to put one foot in front of the other as we moved forward. (We refuse to use the term moving on because we can never move on from you. You live on in our hearts and you will always be a part of us. We would never leave you behind.) This past year we managed to laugh a little more. We started to reinvest in our new world. The heartbreak will never go away, but we will live.

Remember: We love you very, very, very much. You will continue to be in our thoughts and in our hearts each day. You will never be forgotten. You are unforgettable.

When we think of you, we remember how proud we were of your sweet and caring nature. We loved your imagination and we loved your passion of learning new things. We treasured the songs you sang and the dances we danced together. We admired your bravery and your ability to bounce back from the harsh cancer treatments. You endured more pain and sickness than most people who live a full lifetime. You inspired many people. You loved with your whole heart, as we loved you with our whole hearts.

Fly high, sweet angel.

Love,

Mommy and Daddy

Remembering Sophia

Truly Inspiring: Nathan’s Story

Nathan was diagnosed in February 2010 with a desmoplastic infantile ganglioglioma, just five months after his father, Mike, had been diagnosed with bladder cancer.  After a few months in Nashville, at Vanderbilt, Mike and I moved Nathan’s care to Duke University’s Brain Tumor Center in Durham. We have been in Durham almost 20 months now.

Nathan’s diagnosis was so devastating and we wondered if he would see his 3^rd birthday.  He had to deal with surgeries, complications from the tumor, side effects of the chemo, the home pharmacy of over 30 doses of meds per day, PICC lines, allergic reactions, fevers, a NG tube for nearly 10 months and meds every 3-4 hours around the clock. Nathan’s had two major craniotomies, at least six shunt revisions, eight different chemo drugs over three protocols, MRSA and many hospitalizations.  He’s even had to learn to walk again – twice more – and lost most of his language and fine motor skills.  Thankfully, July 2011 was Nathan’s last hospitalization.  His shunt failed twice in one week so he got a new programmable shunt.  We have had a very blessed year since! 

Spring 2011 brought some relief, Nathan’s chemo drugs changed, we finally got the shunt functioning correctly, the NG tube was gone, he started eating McNuggets, he was down to four doses of meds and continued with PT, OT and ST every day.  We were able to finish out the year and the drug protocol.

Unfortunately, Mike’s cancer started to spiral over the summer.  Despite everyone’s best efforts – Vanderbilt’s, Dukes and Cancer Centers of America – Mike lost his battle with cancer in December 2011.  We were home in Tennessee, surrounded by family.  He fought long and hard for himself and Nathan. 

January 2012 came and Nathan & I had to get back on the plane to Duke to continue on with Nathan’s treatment.  February brought the end of 22 months of chemotherapy.  He is on his first official break.  “Frankie” (the tumor) has remained stable since last May and is still diminishing.  It has been six weeks since the last treatment and the MRI looked good.  Nathan is still battling the side effects from the last drugs and going to rehab therapy daily. 

We wait for the next MRI on June 8^th, praying all will still be stable.  There is a chance “Frankie” may never grow again – may just hang out forever.  Or, it will wake up and we will start over again.  Nathan and I will remain at Duke as long as it takes – close to the hospital and close to the rehab hospital for therapy.  MRI scans every 12 weeks and addressing a few complications that have arisen since diagnosis which will include at least one spinal surgery.

Nathan’s development is about two years behind normal.  I am so thankful every day that he is able to walk and play.  He is so happy, content and loving.  His speech is progressing slowly but his communication is exceptional.  Physically, Nathan is doing great.  He loves pool therapy, his strength and endurance has grown so much.  Occupational therapy is difficult as he has some sensory integration issues, but the progress has been phenomenal week-to-week.  The progress is slow but we are hoping, as the chemo continues to wear off, to make significant strides in the coming months.

We really don’t know what to expect this year.  I hope he goes into remission.  I hope it goes away.  I hope to go home to family and friends.  I hope Nathan can start school.  The list goes on and on.  However, today is full of grilled cheese, bike rides and Elmo.  And I can’t think of anything better than that!!! 

Nathan is on the homestretch to his 5^th birthday in July.  Truly a blessing and a miracle.

Truly Inspiring: Taylor’s Story

In 2007, Taylor’s life was changed by the diagnosis of an inoperable tumor in her brain stem – glioblastoma.  Eight years old at the time, we had no idea what her future would hold.  

She is no longer able to communicate verbally, walk or eat by mouth.  She is blind & deaf on her left side and suffers from semi-paralysis on the right from her neck down.  Taylor has spent so much time in the hospital that giving back to the brain tumor community has been only a dream. 

Last month, Taylor proudly took her survivor lap at a Relay for Life event in Coweta County.  She also raised $1,200 to donate to brain tumor research through the Brain Tumor Foundation for Children.  Finding a cure is a gift she can share with other children with brain tumors.

In February 2012, Taylor celebrated five years as a brain tumor survivor.

Truly Inspiring: Sarah’s Story

It was a wonderful time in our lives.  My husband Kevin had returned home from a year in Iraq and was about to be promoted.  My sons – Chase and Wesley – were doing great and Sarah, our daughter, was a toddler full of personality.  Sarah was beautiful.  She had blue eyes and blond hair and she was funny.  I loved her personality.  She was simply great. 

In September 2007, we noticed Sarah was rapidly gaining weight.  We thought it was because we were eating poorly.  We changed our diet but a few weeks later I grew concerned enough to take her to our nurse practitioner.  She agreed that the weight gain seemed odd yet on the charts and compared to her brother’s charts at the same age, she was ok.  It was agreed to watch Sarah for a couple of weeks and bring her back for a follow up.  I never made that follow up appointment. 

One day my husband noticed that Sarah’s hand “looked funny”.  I agreed and made an appointment for her.  For the next few days, we continued our normal activities to include celebrating Sarah’s second birthday.  Over the course of these few days, Sarah lost use of her arm, her gait looked off, and she was drooling a little bit.  Being a holiday weekend, my husband took her to the ER.  They x-rayed her arm and concluded she was fine but to have her seen by her pediatrician.

At this point, I knew something was seriously wrong and had her seen on a same day appointment again with our nurse practitioner.  The nurse practitioner was concerned and felt Sarah should be seen by the head pediatrician.  When he finally saw her, he insisted her brothers had been rough with her and had pulled her elbow out of place.  I argued that that was not the problem and that I thought she had a brain tumor.  The doctor thought I was crazy since Sarah had not exhibited the classic signs of a brain tumor.   I argued back that she must have had a stroke then as her symptoms were all one sided.  I remember looking at him and saying, “Look at her face, it’s drooping, she’s drooling and her gait is off, not to mention she can’t use her arm!”  The doctor finally consented to run further tests all of which came back normal. 

Finally, he looked at me and said, “For your peace of mind, we’ll do a CT scan.”  As they were doing the CT scan, I saw it…a huge mass.  It was gut-wrenching. I can still see that moment in my mind as if it happened yesterday.  I didn’t say a word to my husband as we were waiting for the results.  He was still hopeful that everything was ok.  Finally, the doctor called us back and told us the news.  It was horrific to hear out loud.  We didn’t even have time to process it as we were immediately being sent to Kosair’s Children’s hospital in Louisville, KY.  While there, the news became worse.  The MRI revealed a deep tumor that could not be completely removed and it was surrounding the juncture where the major vessels in the brain meet.  At that moment, I knew Sarah was going to die from this.  No words can describe how bad this was for us.  We cried and cried.  To Kosair’s credit, they let all our family members, young and old, in to be with her. 

After much consultation, we made our way to St. Jude Children’s Research Hospital in Memphis, TN. Sarah had surgery, chemo, radiation, countless procedures and more chemo, but the tumor could not be stopped.  She was two and this was her life. 

After radiation, we moved from Ft. Knox to Ft. Benning, GA to be closer to family.  Egleston took Sarah as a patient and between St. Jude and Egleston, Sarah received the best medical care possible and from the most caring, loving staff possible.  We also took Sarah’s Make-A-Wish Trip to Animal Kingdom Lodge, Disney and the Barney show at Universal.  Sarah loved animals and Barney.

Sadly, the tumor spread throughout her central nervous system and she was put on hospice.  Sarah died November 13, 2008, a month after her third birthday.  Our youngest child and only daughter was gone to anaplastic astrocytoma-a cancerous brain tumor.  Her death almost destroyed us and certainly changed us forever.

Three and a half years she has been gone and she is missed every day. Even today, at times I still can’t believe she lost her life to a brain tumor.  She was so young and at the beginning of her life.  So much promise, so many dreams for her…all gone.  Sarah was a wonderful daughter, sister, granddaughter, niece, cousin and friend who is much loved and sorely missed.

Truly Inspiring: Satira’s Story

When I sit and think over my life, I stop and say, “It’s been a long, long journey and I’m still here.”              

Life has been great to me and all thanks goes to the power of God.  I started my journey when I was only nine years old.  A little girl with not a care in the world, I knew little of what was waiting around the bend.                                                                                     

I played softball the summer of 2000.  In the blistering heat, I played my heart out week after week and loved every moment of it.  Our team even won a championship.  After I finished playing softball, I began to get really sick, but refused to stay home from Boys & Girls Club.  My grandma stopped often on those trips so I could vomit.  But I still refused to quit and go back home.         

Then, grandma and granddad called the doctor for an appointment and they gave my mom the money to take me to the appointment.  My grandma wanted me well before I started back to school so I would not have to miss any school days.  This began my journey back and forth to the doctor and emergency rooms.              

School began and I entered the fourth grade.  But my life really started to change.  We noticed that I held my head to the right 24/7.  That position seemed to relieve my pain.  Still I kept vomiting and complaining of headaches.  The doctors said I had migraines, just like my mom and grandma.  We could not figure out what was wrong with me.  I missed day after day from school, going in and out of the doctor’s office.  On my last visit to the doctor, my grandma let my dad go to work so she and my mom could take me to the doctor.  When it was my turn to see the pediatrician, he did a routine check-up and again told my mom the same thing.  But this time, my grandma insisted that the doctor send me to the hospital for additional medical testing and he did.         

I was admitted to the hospital, had a CT scan, MRI and blood tests.  I really didn’t understand any of the things they were doing to me.  After testing they took me to my room.  My grandma left for work and just me and my mom waited on the results.  Mom walked out of the room and I didn’t know why. But I soon knew the reason.  Awhile passed and I was still in the room alone thinking, “I can’t wait until they let me out of this place.  I’m ready to go home.”               

The phone rang and it was my cousin who was hysterical and crying. I didn’t know what was going on.  I thought, maybe, something happened to her son.  I gave my mom the phone and they talked for a while. Soon family members started showing up.  Then I knew something was going on.

The doctor came in.  He and my mom told me something that I didn’t want to hear.  They said, “Tee you are sick. You have a BRAIN TUMOR and you have to have surgery to relieve the pressure from your brain.”              

The first thing I said was, “Mama, I don’t want to DIE.”  I spoke whimpering.  I still didn’t fully understand but I knew it was bad.  That next day, a Saturday, an ambulance transported me to Egleston Children’s Hospital in Atlanta, where I underwent numerous surgeries that left me physically weak.                                                              

After conquering those milestones, I had the challenge of learning how to walk all over again.  It was hard but I managed as I continued radiation and chemotherapy.  It seemed as though I was going to spend the rest of my life in the hospital. I had my good days and my bad days, but my good days always outweighed the bad.            

I had yet another milestone to conquer.  One day, after one of my numerous radiation treatments, the doctor called me and my mom into one of the rooms.  He started talking to my mom but I really wasn’t paying any attention.  While they talked, I put my hand in my head to scratch it. I pulled out a handful of hair!  I cried like a baby when I saw it.  The doctor was telling my mom that my hair would fall out.               

That weekend, I gave my daddy and mom my permission to cut the rest of my hair off.  That spared me the pain of letting it fall out piece by piece.  I wasn’t scared.  My dad cut my hair and he let me cut his hair, too.  Mom tried not to watch too much to keep from crying.  After that I wore a wig with two plaits that hung down.  Sometimes, I snatched the wig off anytime or anywhere if my head was hot or it itched.  I wasn’t ashamed of my baldness.                          

The chemotherapy and radiation tired me out.  After six weeks of treatment, Atlanta started to feel like home.  The Ronald McDonald House and the Egleston hospital family were part of my family now but I was happy to go home.              

Slowly but surely, things got back to normal although things will never be the same.  With my family, friends and the Lord on my side, I am blessed beyond measure.               

I continued therapy and constant visits to Egleston, but I still really and truly did not understand what had happen to me.  One day my mom sat me down and explained it to me.  Mom said, “Tee you had a brain tumor in the back of your head.  It touched your brain stem and it was cancerous. Baby, if you had not gotten the help you needed, you probably would not be here today.”  The size of the tumor was bigger than a golf ball but smaller than a tennis ball, she said.  

I was shocked by what I heard.  God gave me another chance at life.  I thank him every day and every chance I get.  I still have my problems and disabilities, but at least I am here today because he cared enough for me.  I have graduated from high school, started going to college and write poetry.  I have been cancer and brain tumor free for 11 ½ years. By the grace of God, I made it.   

Winning the War

The war is over at least for me,

Because you see I know I’m cancer and tumor free

See I know what it feels like to live this way

Spending months in the hospital

Not getting to go home,

Sick day and night

Where all I could do was eat and

Learn how to walk all over again.

It’s not something that you want happen to you,

But I know that all this wasn’t meant to stay in me forever.

The celebration has started and will never end.

Truly Inspiring: Kelby’s Story

My name is Kelby.  At the age of six, in 1979, my body was struck by cancer.  I was diagnosed with medulloblastoma – a brain cancer.  I was given a 2% chance to live.  Doctors said if I lived through surgery I might come out as a little baby having to relearn everything again.   

I was blind after surgery and then had double-vision and finally my vision became normal.  I had a shunt inserted before this surgery to relieve fluid from my brain.  I still have the shunt today. 

There were many setbacks.  I had asthma attacks in the hospital as well as several allergic reactions – it seemed that all the side effects the doctor listed, I got plus more.  At that time, Egleston was not what it is now and the only way to get a private room was to be in isolation – I spent Easter in isolation.  I later had radiation and chemo after 60% of the tumor was removed by the surgeons.  I lost my hair, but later found that hair was a small price to pay for life.

I am blessed to share that my life is a miracle – luck played no part in my living.  Many people see miracles as things that only happened in the Bible, but I am alive today as living proof of a miracle.

After all I have gone through, I have learned much from my experiences.  I am short due to radiation depleting my growth hormones.  Radiation has also led to rheumatoid arthritis.  The arthritis is believed to be the cause of my nearsightedness.  And I am deaf in my left ear with a high-deficiency-loss in the other.  However, I have seen others with much worse conditions than I, losing limbs and body uses.  I am thankful for the things I can do and try not to linger on the things I have lost or cannot do.  I thank God daily that I am alive and I can share my story with others. 

Truly Inspiring: Savannah’s Story

Savannah was diagnosed with brain cancer on August 14, 2006, but that is not where her story begins. In March 2005 she was diagnosed with Diabetes Insipidus (DI); a disorder caused by the brain not sending signals to the pituitary gland for a hormone to be released to absorb excess water from the kidneys. One of the causes of DI is a brain tumor, so Savannah had a MRI in March 2005. No tumor was detected. She began taking the needed hormone by mouth twice a day and saw an endocrinologist regularly.

Toward the end of 2nd grade Savannah started complaining of headaches. In June 2006 she had her 8-year-old checkup and she failed the eye exam; we thought that explained the headaches. We made an appointment with an eye doctor for the end of July and went on about our summer. When Savannah’s eyes were examined on July 31, 2006 no problems were detected. Savannah was not acting like herself; she was sleeping a lot and moody. I called her pediatrician and we discussed doing another MRI. From that MRI her tumor was found. We were sent to Atlanta on August 4, 2006, but once we got there found out our insurance was not accepted. An appointment was made to go to Shands in Gainesville, FL, but the pediatric neurosurgeon was on vacation until August 14 – so we waited. We thought her tumor was benign at this point, due to the location and how it “looked” on the MRI. Toward the end of the week of waiting Savannah started to deteriorate; she was vomiting, sleeping much of the time and losing her eyesight.

We got to Shands on August 13, 2006 and went to the ER. They did blood work and another MRI on August 14. The blood work showed Savannah had cancer. She had a mixed germ cell brain tumor near her pituitary. She received six rounds of chemo and then had brain surgery to try to remove what was left of the tumor. Unfortunately, the 1cm tumor that remained was not able to be removed, but the surgeon is fairly certain it is basically scar tissue. After Savannah healed from brain surgery she had six weeks of cranio-spinal proton radiation in Jacksonville, FL. Savannah was declared “cancer free” when her treatment ended on March 13, 2007!

Although treatment for the cancer is over, childhood cancer survivors are far from “out of the woods”. Childhood cancer survivors battle the rest of their lives. Chemo and radiation have long term effect – a few are: cognitive loss, fertility issues and personality changes. These special survivors are at an increased risk for developing other cancers due to their treatments. Due to the location of Savannah’s tumor she has no pituitary function and must replace all hormones, including growth hormone shots she endures every night.

Savannah is now a bright, beautiful, fun-loving 13-year-old. She has yearly MRI’s and checkups with her oncologist and sees her endocrinologist every four months. Savannah is aware of how fortunate she is to be a survivor; she is our miracle!

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!!

Truly Inspiring: Peyton’s Story

Peyton was diagnosed on September 15, 2010 with a Diffuse Intrinsic Pontine Glioma.  It started when Peyton’s left eye crossed overnight.  I had noticed a couple of days before that his eyes were crossing periodically.  My thoughts were, “he figured out he can cross his eyes”, and didn’t put much more thought in to it.  But when his left eye stayed crossed, I called the pediatrician and got the last same day appointment for him to be seen. 

I feared that it was a brain tumor because what else would cause his eye to cross overnight.  His pediatrician called and got us in to see an ophthalmologist the next day.  We had to drive 1.5 hours to meet with the ophthalmologist because my husband was stationed in a small town.  We met with him and he thought it could be strabismus.  But he wanted to order a MRI to clear him for anything worse.  I started thinking, how am I going to get a two year old to wear glasses and a patch?  A MRI was ordered for the next day, so we got a hotel room instead of making the drive home and back. 

We got up early that morning and took him to the hospital, not knowing this day was the day that would change our lives forever.  I will never forget these words, “Our worst fears have been confirmed.” It all happened in slow motion as the doctors told us of his brain tumor.  They told us we would have to meet with a neurosurgeon to discuss if the tumor was operable.  As we waited for the neurosurgeon to get out of surgery we paced and cried and held our baby boy.  The neurosurgeon did not have good news for us either. 

We were admitted that night for observation and met with doctors the next morning to discuss treatment options.  We made the decision to be treated in Atlanta so we could have family support. We booked a flight to Atlanta that day and we flew with the clothes on our back.  We were picked up by family and taken straight to Scottish Rite to meet with doctors and start treatment.  Peyton went to radiation five days a week for six weeks and was sedated every day for this.  Next, we started his chemotherapy.  His first MRI showed that the tumor had shrunk significantly and we continued chemotherapy. 

Around Easter 2011 we noticed that Peyton was starting to trip a lot and the Monday after Easter I could tell that he was walking differently.  We called the doctor and they had us go to the emergency room.  A CT scan revealed the tumor had grown, so our oncologist ordered a MRI which re-confirmed the tumor had grown.  We decided to stop treatment at that point.  The tumor had grown and was back with a vengeance. 

The tumor took control of Peyton’s body much faster than the doctors thought it would happen.  We were able to take Peyton to Disney because of Make-A-Wish.  We had to call his oncologist while we were there because his symptoms progressed.  Peyton won his battle June 3, 2011.  Peyton is now alive and healed in Heaven and that tumor is dead.

Our Peyton was a precious boy and he taught us so much in the short time we were blessed to have him.  He taught us about Love, and what is really important in life.  Peyton loved life, he loved hitting the tee ball and playing outside. He loved Buzz Lightyear & the Toy Story gang and Mickey Mouse Clubhouse.  He loved to dance and sing.  He loved showing his “Bay Sis” what life was all about.  He enjoyed the Georgia Aquarium – visiting the sharks, Nemo and Dori, the turtle and petting the stingrays.  He never missed an opportunity to enjoy some vanilla soft serve ice cream. 

We miss him every day and my heart breaks when I think about what damage a brain tumor can do to a child.  I pray daily for a cure and for families who continue to fight this horrible fight.

We love you Peyton “To Infinity and Beyond”!

Truly Inspiring: Morgan’s Story

Our daughter, Morgan, was born on May 14, 1991.  She was a beautiful baby and the joy of our life.  Around the age of nine months, she began to have these “episodes”.  We couldn’t imagine what was going on.  She would always turn her head to the right, her little right hand clenched, and her face was very pale.  I called the pediatrician several times and spoke to the nurses, who told me maybe she was having a temper tantrum, maybe she was allergic to her formula, or it’s just something babies do.  I just didn’t feel right.  I felt something else must be happening to her.  At her one year check-up, I told the pediatrician again what was going on.  She took me seriously and scheduled an EEG, just to put our minds at rest.

So, on her first birthday, we took our baby for an EEG.  Little did we know, it would be the first of many.  An appointment was made with the neurologist to discuss the results.  During the visit, the doctor asked us what happens when she has the episode.  Morgan was sitting in my lap and at that moment, she had one.  “Oh!” he said, “that’s a complex partial seizure.  I wish I had a camera.”  He continued on, saying that there was an abnormality on the EEG.  They would need to have a CT scan done.  The results of that test showed there was something on her brain.  An MRI needed to be done for more clarity.  I’ll never forget taking her to the MRI.  She had to be sedated, of course, so they gave her a drug that made her fall limp in my arms.  She was like a rag doll.  I had to walk with her to a trailer where the machine was and since there was no room for me, I had to leave her with the technicians.  My husband was at work, so I sat alone, waiting.  My mind did somersaults with what ifs.  It was finally over and I could take her home.  The neurologist told us at the next appointment that there was definitely something going on with her brain.  It could have been a stroke, it could have been some tissue that didn’t develop, or it could be a tumor.  We were devastated.  Did I do something wrong when I was pregnant?  How could this be?  She’s only a baby.  They would need to do surgery to determine what it was. 

June 19, 1992 was the worst day of our life.  We took Morgan to Scottish Rite Children’s Hospital, which is now Children’s Health Care of Atlanta.  We were in the pre-op room and the nurse came to take her to surgery.  I had to let her go and give her to the nurse.  We didn’t know what to expect or what the outcome would be.  We both broke down and the nurses kindly took us to a room where we could be alone.  We sobbed for our daughter.  What was going to happen now?  The surgery took around six hours and during that time, we had a few visitors to keep us from going crazy with worry.  My mother was there and her pastor and a few friends.  The hospital chaplain came to pray with us and he gave us both a rosary ring.  I wasn’t Catholic, but I treasured that touchstone.  It was finally over and the surgeon came to speak with us.  It was a tumor.  He said that it was the size of a golf ball, but it had “fingers” growing out of it.  He got as much of the surrounding tissue that he could without damaging her brain.  What now?  She was taken to recovery and on the way down the hall, they let us see her.  Her little head was bandaged in white gauze and she was so tiny on that gurney.  The nurse accompanying her handed me a plastic bag.  In it was her hair.   They had read my mind!  They knew it would mean so much to me to have that.  It was her first haircut.

She was taken to the ICU and we slept in the waiting room that night with other parents. The next day she was taken to her room.  I remember leaving her room to go to the cafeteria and when I returned she was walking around her crib with the nurses around her.  She was amazing!  I couldn’t believe she was doing so well.  On Monday morning, the surgeons came around and told us we could take her home.  They sent the tissue off to pathology and we would know soon.  She had been in the hospital for 3 days.

We waited for what seemed like forever.  Dr. Hudgins, the surgeon, called and told us that her tumor was consistent with gliomatosis cerebri.  He did not think that it was that, but the pathologist at Duke said it was.  There was nothing they could do.  She was too young for radiation and there was no effective chemotherapy.  “Love her with the time you have with her”, he said.  I didn’t know what to do with myself.  I called my husband at work and told him.  We were overcome.  My mother came over to be with me.  We just looked at her and held her.  Tears were flowing. That was 20 years ago and I remember everything that happened, like it was yesterday.

Morgan was followed up with countless MRIs and lab tests.  No recurrence was ever found and at her 10 year follow up, we were told that she had proved that she did not have gliomatosis cerebri, it was an infiltrating astrocytoma.  She is still on anti-seizure meds and she is followed up by a neurologist every 6 months or so.  She is tumor free.

Thanks be to God!  She has been cured.  She never had any radiation or chemotherapy.  She does have some learning delays which are being addressed at her college.  She is a sophomore studying graphic arts.  Again, she is the joy of our life.