Dec 11, 2008 Latest post:
Sep 26, 2013
Our Princess Reese was born on 11/6/07, she was diagnosed with a pilocytic astrocytoma brain tumor on 2/19/08 and went in for her first craniotomy and resection of the tumor on 2/25/08. The surgury removed as much tumor as they could with out going into the brainstem. She underwent 18 months of chemothearpy weekly to try and kill the tumor, and has since had five more brain surgeries! We are Happy to say that Reese tumor is stable and now we will just watch it with MRI's every 6 months.
At three months old we noticed that Reese held her neck to one side the majority of the time and was very cranky, so we took her to our pediatrician who did not like what she saw and ordered a MRI of Reese's head, neck and chest. Our world was about to be turned upside down. On February 19th, 2008 our pediatrician called at 11:20 in the morning, to say that they had found an "abnormality" on Reese's brain stem. Her pediatrician (Dr. Karen Prentice) immediately made us an appointment with a neurosurgeon at Phoenix Children's Hospital that day at 1:00pm that same day. This is where we learned that Reese had a brain tumor on her brain stem, and would have brain surgery in six days! Reese underwent her first crainiotomy on February 25th, 2008. The surgery was 13 long hours and went well. We were in the hospital for 5 days and then we went home scared to death waiting for the results of the tumor. A few weeks later our Neurosurgeon called to let us know that her tumor is a astrosytoma. A benign tumor in the brain, but they were unable to remove it all because it is in her brainstem. On March 26th, 2008 we took Reese to the emergency room because she was lethargic and would not eat. She was admitted to the ICU immediately after an MRI showed that she had pressure building on the brain due to a large cyst in her cerebellum. We spent 27 days in the ICU. Reese underwent several procedures including another craniotomy to figure out the cause of the cyst and the mild case of Hydrocephalus. When it was over she received a cystic shunt in her head which would control the fluid collection within the cyst and her Hydrocephalus began to stabilize. As you can imagine we were more than ready to go home after almost a month in the hospital. A shunt comes with alot more worries, anytime Reese gets a fever we have to take her to the emergency room to make sure that her shunt is not infected. Over the next few months we took reese to the emergency room with a fever three or four times. We are glad to say they were all just the common cold. We had a few more MRI's in June and October that showed the tumor was growing, so in November of 2008 her team (neurosurgeon, neurologist, and oncologist) collectively decided it would be best if Reese started chemotherapy. In early November 2008, Reese had a port placed in her chest and on December 3rd she began chemotherapy. Reese gets chemo once a week for four weeks and then two weeks off. She has now been undergoing chemotherapy for 17 months. In July of last year on one of her follow up MRI's, the edge of one of the sequences showed the development of a syrinx in her spine. This is build up of cerebral spinal fluid and it is building up in her spinal cord. Her neurosurgeon ordered an MRI of her entire spine to make this syrinx was limited to the top of her spine as well as a CSF flow study which would show any restriction in proper flow of Reese's ceribral Spinal fluid. After Radiology confirmed a flow restriction and we determined the severity of the syrinx, Dr. Shafron thought that the best way to get this problem under control would be to go back in her head and remove scar tissue and debulk the tumor again. She had another craniotomy and they removed the tumor as much as possible and freed up room for the CSF to flow better by removing a lot of scar tissue. Reese spent another 5 days in the ICU to recover and get stronger. We had a follow uo MRI in January and the syrinx had not shrunk, so we waited another three months and did another one in April. The syrinx had actually grew. In July Reese had another shunt placed in her head, this time a programmable VP shunt placed in the top of her head. Reese now has three shunts (one on her spine, one in the top of her head which is a ventricular shunt and a cystic shunt in the back of her head) in her little body that will have to be redone and monitored throughout her life but that is a small price to pay for our sweet miracle girl! Her tumor has been stable for four years now so we just continue to thank God for every day we have as a family!