Avery G. - Quilt Finished in 2009
Born: March 12, 2002
Illness: Anoplastic Medulloblastoma, Leptomeinigeal Disease, Stroke
Avery G.'s Story
Written by Avery's mom in June 2009
Sunday, Mother's Day 2007, Avery had a stiff neck. We took her to the ER they told us it was probably just a stiff neck. Monday she woke up and vomited. Tuesday still sick. Took Avery to doctors office. They ran blood test. Her eyes looked a little cross. Wednesday, still sick vomited just wanted to lay in bed. Took her to Children's hospital. They gave her IV fluids and did an xray of her neck. Eyes still looked crossed even worse. After 6 hours we went home. Thursday Mom laid in bed with Avery all day. She knew something was wrong. Friday went to normal pediatrician. He took one look at her and ordered an MRI stat. He stayed with us for the scan and showed us after that Avery had a golf ball size tumor in her cerebellum. We rushed Avery back to Children's hospital Friday May 18th is the day our lives forever changed. Our beautiful bright daughter had a brain tumor.
Monday May 21, 2007 Avery had brain surgery to remove the tumor. Pathology report said Anaplastic Medulloblastoma, a highly malignant cancerous tumor. While in surgery the surgeon reported Avery also had Leptomeinigeal Disease (a coating of cancer on her brain) something that is rarely found at diagnosis. The MRI's also found tumors on Avery's spine and another part of her brain. This too is rarely seen at diagnosis. Avery clearly has been given an extremely difficult cancer to fight. Please Pray for our beautiful little Girl.
To date this is what treatment Avery has had.
Port Placement Surgery-
Six weeks of radiation- Full brain and spine. Had to be put under for each treatment. (5400)
Six weeks of daily Carboplatin and weekly Vincristine as a desensitizer during radiation.
Went to Mayo Clinic for second opinion
Merherker line placement
Stem Cell harvesting- got 9 million
Induction Chemo- Zero counts for four weeks.
Port removal because of fungal infection
Merherker line placement but did not harvest.
Hickman line placement and G-Tube placement for feedings.
Two high dose chemo rounds with stem cell rescue suffered from colitis each time.
January 2008 Avery is in remission! Thank You God! We Praise you!
In NY for experimental 3F8 Antibody injections. To fight the leptomenigeal disease and kill any small undetectable cancer cells.
Ommaya surgery - Port in brain for injections
Flow study's and scans to see if Ommaya functions properly.
March 12 2008 Avery's Birthday. Test dose of 3F8.
Had four full does of 3F8. Every other week. 6 week stay in NY.
Starts Metronomic Chemo plan.
October Clear scans! Thank you God!
November 2008- Stroke like symptoms. Loss of vision, right side weakness etc. MRI, MRA, CT angiogram, and angiogram show narrowing of Avery's middle cerebral arteries. 30% and 60%. Her brain is getting deprived of proper blood flow. This damage is from radiation. It is not common so soon after treatment usually several years later. Started aspirin. Looking into options.
November - Hyperbaric Oxygen started. This is to help damaged vessels and arteries in Avery's brain. Her vision and functioning is better. Oxygen is helping. Praise God!
December- Make A Wish trip. Avery had a blast on her MAW trip to Hawaii and swimming with dolphins. Thank you Make A Wish!
December 2008- Oxygen is still helping. Perfusion scan done. Still notable difference in flow. However, most damage from stroke/episode looks healed. Started Metronomic cycle 3.
Clear Scan January 19th. Will finish up Oxygen at the end of the month. Total of 8 weeks.
January 28th had another TIA caught early rushed to ER lots of verbal disturbances and tingles in right arm again. Only one night in hospital. Did blood study changed to Plavix. The aspirin was not helping.
February -Working with Dr. S., Neurosurgeon who specializes in MoyaMoya. He said Avery is very unique and he has not seen a child with radiation stenosis so early on. Watch and wait for now. Also did LP and a draw from Ommaya Spinal fluid was clear no active cells.
