Oct 19, 2007 Latest post:
Mar 31, 2019
Hi everyone. Aaron has been diagnosed with brain cancer.It is a rare tumor called an anaplastic ependymoma.
Kristie and I have been overwhelmed by the outpouring of love and prayers. We can not express how much it has meant to Aaron and us. We would not have made it this far if it weren't for our family, friends, and church family (all of the churches). Thank you all so much.
September 1, 2007. Aaron would throw up one day and be fine for several days, he would go to sleep almost every day after school. We thought he was not getting enough sleep or was worried about starting Middle School. We took him to the doctor on 9/12/07. At first he thought it was migraines but became suspicious because the headaches followed the nausea instead of the other way around. Luckily, Dr. John Vinson ordered a CT on our 2nd visit on 9/28. When the scan was read we were called and told to get Aaron to an emergency room immediately. He was air lifted to Vanderbilt Children's Hospital.
Aaron was diagnosed with a brain tumor and one week later (October 5th) the tumor was removed. Recovery from surgery went well and we came home on Wednesday, October 10th. Thursday we went to physical therapy. That evening Aaron was doing his neck exercises when we noticed his shirt was wet. We returned to Vanderbilt. The suture was leaking spinal fluid and not allowing the wound to heal. They added two stitches and watched him for a couple of days. They put in a Lumbar drain on Saturday, October 13th to relieve the pressure so that the wound could heal. On Wednesday, October 17th the drain was removed and he was monitored to see if the leak returned. It did. On Friday, October 19th a VP shunt was put in his head. This is a tube with a valve that routes the csf to his abdomen. We came home Saturday October 20th.
On Tuesday, October 16th, the doctors informed us that the pathology indicated the tumor was malignant. It is an Anaplastic Ependymoma, an aggressive growing tumor that can recur and spread. Aaron received 6 weeks of radiation at Vanderbilt from November 8th through Christmas Eve, 2007. We stayed in Nashville at the Hope Lodge during his treatments.
Dec. 26-31st Make-a-Wish Trip to meet Brian Urlacher and the rest of the Chicago Bears! WOW!
2008-Jan. 26th -MRI-brain and spine- CLEAR! April 26th, Aug 16, Dec 6 - CLEAR MRIs! 2009- April 4, Aug 1-CLEAR MRIs !!!
Nov 21, 2009-Some changes on the T2 Sequence-Repeat MRI in 2 months-no symptoms, braces removed mid-August-could have caused change in clarity of scan Jan 2010-CLEAR MRI!!!!
May 15, 2010- Recurrence-Referred to St. Jude, June-July, 2010-carboplatin and topocetan chemo-didn't work, September 3-second tumor resection (at LeBonheur) September 27-Nov 5th-30 radiation treatments at St. Jude 2011-Jan and April-Clear MRIs!
2011-June-back pain-spinal MRI showed 2 tumors,brain MRI was still Clear! July 5th started CERN study w/ Avastain infusions and oral Lapatinib-didn't work. Sept. 13-surgery to remove spinal tumors, 27 rad treatments to the spine at St. Jude Oct-Nov
2012-Jan Mri's-brain clear, spine "as good as we could hope for" following surgery and radiation, March MRI's-clear! Turned 16, got drivers license and a like-new pickup truck! July MRI'S-clear, Oct MRI's-clear (or so we thought)
2013- Jan-numbness in face (sixth nerve) MRI showed recurrence in brain not only in original spot but on another spot as well, tried gemcitabine while waiting to see if he could take 5-FU, condition deteriorated, February 4th told there was nothing else to do. On Wednesday, February 20th 2013 at 4:10 p.m. Aaron the Amazing became Cancer Free for Eternity.