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

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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 3rd 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 8th, 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 5th birthday in July.  Truly a blessing and a miracle.

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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.

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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.

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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.

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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. 

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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!

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