Hannah was born a healthy baby on June 15, 2007. She was always right on track with 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 or would not bear weight on her legs. I could not put her down with out her screaming. At this point we new something was really wrong and something was really hurting her not just her teeth.
We took Hannah to her doctor on August 5th 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 for tests and scans to be done. Hannah was sedated for the very first time for a full vertebra MRI. This was one of our most difficult times. Hannah had to be stuck twice to get an IV placed so she could receive the sedation needed to perform the scan.
After an hour of waiting we received the results. You know something is wrong when you have three-five white coats and a handful of nurses walk into a room to give you results of a test. 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 vertebra.
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 prior to 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 vertebra letting her nerves have enough room to function properly.
On August 15th Hannah had her second surgery to remove the tumor from her abdomen area and to place a central line port in her chest. As well as to get a larger biopsy to determine what kind of cancer she had. Everything the doctors tested came back negative.
Two weeks later after Hannah was bought to ACH on August 21, 2008, we received an official diagnosis. Hannah had an Atypical Teratoid Rhabdoid Tumor (AT/RT). There is a special pathologist in Boston, Massachusetts who is 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 re-grew, and was decompressing her spine once again. As well as there was one very small part of the tumor left way deep in her spine that need 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 her 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. Then with daily physical therapy Hannah was learning how to walk again. She walked with special braces for her legs and a walker. Hannah still needed help from her physical therapist but could mover her left leg all by her self.
Then 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 know more cancer in her body. This same day Hannah had to have her fifth surgery. Her ommaya reservoir in her head to administer her 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, and 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, she had a bowel obstruction do to the 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 would not stop leaking cerebral spinal 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. On Thanksgiving day, November 27, 2008 Hannah was sent to the PICU and had her 7th surgery to place and EVD (External Ventricular Device), it helps drain the extra fluid off of Hannah’s brain and measures the pressure of fluid in her brain.
Things went down hill really quickly after this surgery. Her left lung clasped, she was in a comatose state, and we were informed that the cancer was back and had spread to hear 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 all the machines and tubes and take her home on December 1st in the evening. 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 then went to heaven.
You can read Hannah’s entire journey.
www.caringbridge.org/visit/hannahboles
