~Watch Hannah's Journey Here!~
Hannah was born a healthy baby on June 15, 2007. She was always right on track at her well child check-ups; nothing seemed to be out of the norm. Then on the weekend of August 3, 2008 I noticed Hannah acting a little different. She was more needy and fussy than usual. She was cutting her one-year molars and we thought that could be the problem. Then on Sunday night she could not sit up and would not bear weight on her legs. I could not put her down without her screaming. At this point we knew something was really wrong and something was really hurting her, not just her teeth.
We took Hannah to her doctor on August 5th and without much notice we were sent to Arkansas Children's Hospital in Little Rock. Hannah and I traveled the three and a half hour drive in the back of an ambulance. She was taken to the Emergency Room to have tests and scans done. Hannah was sedated for the very first time for a full vertabra MRI. This was one of our most difficult times. Hannah had always been in perfect health and now she was on her way to have a major test done. Hannah had to be stuck twice to get an IV placed so she could receive the sedation needed to perform the scan. Then we watched as Hannah was sedated. We gave her a kiss on her forehead and walked away, leaving her with strangers so she could get scanned. We didn't know it at the time, but it would be the first of many sedation days.
After an hour of waiting we received the results. You know something is wrong when you have three to five white coats and a handful of nurses walk into the room to give you the test results. We were informed that our precious baby girl had a 6 cm tumor shaped like a barbell inside her. This thing was extending from the soft tissue around her kidney into her abdomen, growing from the L1 nerve ending through her spinal column, then up and down her back from her T10 to her L3 vertabra.
Hannah was moved to the Pediatric Intensive Care Unit and would have surgery first thing in the morning. Her surgery became a priority and she was placed ahead of all the other scheduled surgeries for that day.
August 6th, 2008 was Hannah's first surgery to decompress her spine by removing the tumor off of her vertabra, letting her nerves have enough room to function properly.
On August 15th, Hannah had her second surgery to remove the tumor from her abdomen and to place a central line port in her chest. They also took a larger biopsy to determine what kind of cancer she had. Everything the doctors tested came back negative.
Two weeks after Hannah was brought to ACH, on August 21, 2008 we received an official diagnosis. Hannah had a very rare malignant cancer called Atypical Teratoid Rhabdoid Tumor (AT/RT). There was a Pathologist in Boston, Massachusetts who was doing special studies with these types of tumors. He finally was able to diagnose this crazy tumor that Hannah had after all the other possible things came back negative.
Hannah's third surgery took place on August 25th. This was her second back surgery. The tumor that was removed from her back on August 6th, less than two weeks prior, had already regrown and was compressing her spine once again. There was also one very small part of the tumor left deep in her spine that needed to be removed.
Then on October 2nd, Hannah had her fourth surgery, which was to place an Ommaya Reservoir under her scalp to help administer chemotherapy to her brain and into her spinal fluid. Hannah did well and all was going as we had hoped. She was handling the chemotherapy treatments well.
Hannah underwent 21 radiation treatments to her spine and had to be sedated for each treatment. Then with daily physical therapy, Hannah was learning how to walk again. She walked with special braces on her legs and a walker. Hannah still needed help from her physical therapist but could move her left leg all by herself.
On Thursday, October 30th, 2008, we received MRI results that Hannah was officially tumor free. We knew Hannah would still have to finish almost three years of chemotherapy, but our daughter had no more cancer in her body. This same day Hannah had her fifth surgery. The Ommaya Reservoir they had placed in her head to administer chemotherapy was causing her brain to swell. It had to come out. So that evening Hannah had the first Ommaya taken out and a new one put in on the other side of her head.
After that surgery Hannah ran a high fever - an extremely high fever that never seemed to break. She was put on a ton of antibiotics. Hannah had a bone scan that was clear and x-rays that were all good. The doctors took samples of her cerebral spinal fluid from her reservoir and we were told all the cultures looked good as well.
Hannah had her 6th surgery on November 23rd. Her abdomen was really distended from a bowel obstruction caused by scar tissue from her second surgery. The surgery went well and while she was still under anesthesia the neurosurgeons restitched her leaky Ommaya. Her new Ommaya Reservoir had not stopped leaking cerebral fluid since her 5th surgery.
The next few days after Hannah's surgery I noticed her head swelling a little and the night before Thanksgiving her pupils were completely dilated. I knew something was not right. She was looking at me but not looking at me. On Thanksgiving Day, November 27th, 2008, Hannah was sent to the PICU and had her 7th surgery to place an EVD (External Ventricular Device) to help drain the extra fluid off of her brain and to measure the pressure of fluid on her brain.
Things went down hill really fast after this surgery. Her left lung collapsed, she was in a comatose state, and we were informed that the cancer was back and had spread to her brain. She had some large spots at the base of her brain and more spots all over her entire brain.
Hannah fought long and hard. We were able to take her off the machines and tubes and take her home on the evening of December 1st. We were home and I believe she knew she was home. On December 2nd, at 12:12 in the afternoon, Hannah opened her eyes one last time and looked at us and then went to heaven.
You can read Hannah's entire journey at:
www.caringbridge.org/visit/hannahboles