My Story

“Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive. Their brilliance challenges the darkness and dazzles those of us who watch their light.”

In August 2009, Bo started throwing up every night, then every morning. The vomiting progressed and he got dehydrated.He was admitted to our local hospital on August 20, 2009. After several tests was clear,Dr. Delli-Gatti, Bo’s pediatrician, ordered a CT scan, which showed that Bo had a Posterior Fossa Brain Tumor.

Our world stopped.

Within 30 minutes of receiving this horrible news, we were life-flighted to Children’s Healthcare of Atlanta @ Scottish Rite and went straight into surgery to put in an EVD (External Ventricular Drain) to relieve the pressure from increase of fluid in the brain. After the EVD was put in, Bo had stopped vomiting and returned to his spunky, comedic self.

On August 26, 2009, Dr. Hudgins, the neurosurgeon, was able to remove 99% of the tumor. The rest was too dangerous to try to remove because it was attached to the brainstem.  In the preliminary pathology results, we discovered that the tumor has a name, medulloblastoma. Medulloblastoma is an aggressive grade IV tumor which requires chemo and radiation. However, radiation was not an option for Bo because of his young age at diagnosis.

Immediately following surgery, Bo developed Posterior Fossa Syndrome leaving the left side of his face is paralyzed. He also had mutism, the inability to control any body movements, and extreme irritability. Rehab helped immensely with irritability and muscle strength. He has also regained a tiny bit of speech back. We have a long road ahead to get him walking again, but Mommy & Daddy have our running shoes on!

Through the power of prayer, Bo did not have to have a permanent shunt and his EVD was successfully removed on Wednesday, September 2nd.

September 25, 2009 we started our first out of six rounds of an aggressive, high-dose chemo treatment. In May 2010, Bo successfully finish all of the harsh chemo and at last, we were able to return home on maintenance chemo after a lengthy 8 month hospital stay.

In October of 2010, Bo was diagnosed provisional autism, apraxia, aphasia, and dysarthia. Life is chaotic and hectic but we seriously wouldn't have it any other way...Bo is here, with us, in the flesh and that is how we like it. Bo receives constant, on-going occupational, physical, speech, behavioral, communication, and equine therapies. Each day is a new day and each day is a better day. =) We have seen massive improvement mentally AND physically. We are still anxiously awaiting the day Bo walks on his own and, of course, start speaking or have some form of clear communication.

February 23, 2011, Bo relapsed. One tiny, 1cm tumor grew on his cerebellum and had to be surgically removed. Bo breezed through his second brain surgery and did not develop any posterior fossa syndrome. Our next step is radiation. Negotiations are still being made and praying fervently that Jacksonville, FL will be the destination for proton beam radiation. 

We get anxious and nervous with every MRI & LP so please continue to pray for our precious son. We have seen what the power of prayer can do...so please continue to pray!

We have met many courageous, precious children along this road. Please continue to read and sign our guestbook because we LOVE reading it everyday...and PLEASE pray for a cure.

God has blessed us with wonderful and loving family and friends. God is the ULTIMATE PHYSICIAN and we have ALL trust in Him. Thank you for putting on your backpacks and traveling this journey with us. Thank you, especially, for all of your prayers! We love you!

 

Bo skipped through the gates of heaven on August 15, 2011 at 2:12 p.m. He was surrounded by his family and friends at home with all of toys and the things he loved. We are continuing our fight against childhood cancer with the Bowen Story foundation. We want the inspiration that Bo gave people to live on through his foundation. Thank you all for the prayers and love you gave to our sweet boy. BE BO STRONG!!!!!! 

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Scott Story posted a new journal entry.

Our friend Piper left for heaven today. Please keep the Needham family in your prayers. The pain they feel is unexplainable. I ask for some peace for this sweet family. Read more

Scott Story posted a new journal entry.

Our friend Piper left for heaven today. Please keep the Needham family in your prayers. The pain they feel is unexplainable. I ask for some peace for this sweet family. Read more

Scott Story posted a new journal entry, "Piper".

I wanted to ask for prayers for our friend Piper. She is on life support at St. Jude. Leukemia has taken over her little body. Her family was the first family we met when ... Read more

Scott Story posted a new journal entry.

I wanted to update on our friend Sarah. She has definitely relapsed. They are discussing treatment options. Please keep praying for her and her family. Also our friend ... Read more

Scott Story posted a new journal entry.

I come to you with urgent prayer request for one of our closest friends. Sarah Barr is one of our friends that was going through treatment when Bo was. They have found a ... Read more

Scott Story posted a new journal entry.

   I come to you all with a heavy heart. Mr. Terry Erickson, Bo's chemo buddy and a true inspiration, made his trip to heaven yesterday to be with Bo. I know as soon as ... Read more

Scott Story posted a new journal entry.

   I'm sorry for no update for a while. I wanted to try and block everything out during the holidays. We have friends going through so much that it feels selfish now to ... Read more

Scott Story posted a new journal entry.

I wanted to ask for help for Bo's foundation. All of you helped our family through our fight against Bo's cancer. Now, we want to help families going through the same ... Read more

Scott Story posted a new journal entry.

   I wanted to ask prayer for a famiy we had met on our journey with Bo. Whn Bo first started raidiaton at the Winship Cancer center, we met a very cute little girl ... Read more

Scott Story posted a new journal entry.

   Yesterday, I went to the Brain Tumor foundation's celebvration of life luncheon. It was good to be around other parents dealing with the same loss. We laughed a lot ... Read more

Scott Story posted a new journal entry.

   Today has been one of those days. I have been feeling the loss of Bo today. It has been such a nice day outside. I was sitting over on my parent's porch earlier ... Read more

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