All About Tanner
Tanner was born on February 8, 2002 at the Halifax Hospital in Daytona Beach, Florida. Although he was three weeks early and weighed in at 8 lbs 15 oz all was good and he returned home a few days later.
Life seemed normal until he reached 3 months old and his pediatrician noticed he looked a little different and was always sticking his tongue out…. we would shortly thereafter find out that Tanner was diagnosed with a very rare syndrome called Beckwith Weideman Syndrome. We would need to do routine ultrasounds and blood work every three months to check for wilms tumors that could develop on his enlarged kidneys and liver. Although he would eventually grow out of this by the age of nine, little did we know that his off the chart growth and development would later be a blessing in disguise giving him the strength he would need later in life to fight the battle that was ahead of him.
Two years later in July of 2004 Tanner became very ill and ended up in Bertfish Hospital with a case of meningitis. His health began to deteriate and was evaced to Arnold Palmer Hospital where we would later find that he was suffering from a large rare Ependymoma Brain Tumor that had been pressing against his brain stem causing fluid and pressure on the brain. Quickly the doctors would place an external shunt to relieve the pressure and the very next day perform a craniotomy which would save his safe. Weeks in ICU Tanner would finally recover and return home to have months of physical and occupation therapy to teach him to walk and use his hands again due to left sided paralysis. Routine MRIs every three months would be required to follow up on his condition. Although the doctors were able to remove the tumor completely there was still risks of reoccurrence.
On February of 2005 we received the horrifying news that the tumor had returned and once again Tanner was admitted to APH where he received his second craniotomy that would save his life. After spending only a few days in ICU Tanner would recover very quickly and return home in a few weeks, but only for a short while. Tanner and I would later return to Orlando to live at the Ronald McDonald house for the next 8 weeks while he received radiation therapy of the brain at MD Anderson Cancer Center.
Once returning home in early August, our lives would eventually return to somewhat normal. However every three months we would be biting our nails wondering if everything would be okay?
Tanner could finally be a kid again. He was enrolled in school where he made lots of new friends, traveled with the family and make wonderful memories.
Sadly in November of 2006 our lives once again would be changed dramatically. MRI results showed the tumor once again had returned, only this time throughout several parts of his brain….. it was spreading. Eventually we would also find the tumors had metastasized to his cervical spine canceling out any future surgeries. After meeting with the Oncology group at MD Anderson Tanner would undergo several months of heavy chemotherapy at APH with hopes of slowing down further tumor growth. Unfortunately with this disease chemo is not known to stop the ependymomas, only slow it down. We were working backwards trying to defeat this disease. Tanner became ill spending Christmas and much of the new year in the hospital. Then finally we got a break, the tumors were shrinking, bringing back hopes of possible surgery. Then it happened, the disease fought back only to double in their size before we even started the chemotherapy.
What would we do now, he stopped responding to all the treatments……all his surgeries failed…. Finally we were referred to Shands Hospital in Gainesville to a Neuro Oncologist and New Neurosurgeon who would give us new hopes and new possibilities of clinical trial studies that would help Tanner.
The Neurosurgeons group proposed a very radical surgery leaving a large margin of possible damage that could be done…. we would, as a family, decline the surgery and hope for an opening for a new clinical trial. Things seemed good for a while, life seemed normal, Tanner was feeling great. Then once again he became ill, fluid and pressure began to form on his brain leaving him with severe headaches and swelling. Then we were faced with the decision no one ever wants to face, we needed to make a life choice for Tanner and our only choices were hospice or the surgery. We were not ready to give up, and we went against all the odds and on May 3, 2007 chose the radical surgery. Tanner received his third craniotomy which would be one of his biggest fights yet.
As always, Tanner never stopped fighting. Things went well and once again they were able to remove all of the tumor growth, and surprisingly the tumors in the cervical spine had calcified. A permanent shunt was placed the following week to control any fluid from building up.
This surgery however lasting 10 1/2 hours showed to be the most difficult one yet for Tanner. An infection occurred causing his lung to collapse from pneumonia leaving him intibated for a longer period and weeks on heavy antibiotics. Once again Tanner would show his strength and determination to win this battle.
He returned home late May to recover and shortly thereafter was referred to the new UF Proton Therapy Institute of Jacksonville Florida where he would receive six weeks of Proton Radiation Therapy of the full spine and brain. Tanner and I would live at the Jacksonville Ronald McDonald house for two months before returning home in late July. He has had several complications and side effects from the radiation and surgery that brings continuous trips back to the hospital. Although his immune system is severely compromised, has lost his hearing on the left side, and loosing his eyesight in his left eye, he continues to find a way to enjoy life.
In May of 2008 Tanner began to show severe signs of complications that would hospitalize him again at Shands in Gainesville. Several days later on IV and extremely high doses of steroids an MRI would show that Tanner was suffering from severe radiation necrosis that was killing the posterior fossa of the brain as well as the cervical spinal cord. We would quickly begin Hyperbaric oxygen treatments with hopes of introducing new cell growth to stop the necrosis. After a week of being an inpatient Tanner would soon be released from the hospital and we would temporarily live at the Hope House for the remaining month of treatments as an outpatient. We then transferred to St Mary’s in West Palm Beach to continue another thirty dives and live with his Grandma and Great Grandma. After returning home early August, we would travel to Gainesville for another follow-up MRI. To our surprise we received the most devastating news we thought we would never hear again. Although Tanner had been making great improvements, the necrosis was still present and his tumor once again returned in the original tumor site.
After the team of Oncologists, Radiologists and Neurosurgery met, it was determined that the tumor was inoperable. Carefully weighing out our options, we would begin Tanner on a mixed chemo infusion of Avastin and Irinotecan with hopes of slowing down the tumor growth which is believed to be moving quickly.
Quality of life has been very important to us, and the choice of this infusion allows us to bring Tanner home with us returning to Shands oncology every two weeks for treatments.
Everyday is a blessing to wake up to his beautiful smile, and anyone who knows of Tanner will tell you he has this special ora, light about him. No matter what, when you walk away from him, he leaves you with a smile that never goes away, always making you want more.
Tanner lives life to the fullest, you will never look at a sunset, a flower or even a butterfly the same again because of him.
He has a purpose in life, what that is I really don’t know, but for me he has taught me how special everything is, and how wonderful and proud I am to be his Mother.
RIGGI DOO, I LOVE YOU – TANNER
Chrisanne Page
