On Nov 7, 2010 an inoperable tumor was found on 19 month old Ewan's hypothalamus, the tumor which also coats his spinal cord and brain stem is a pilomyxoid astrocytoma (PMA). Ewan will fight this battle every day for the rest of his life.
Here’s a quick summary of Ewan's journey: November 5,2010 Admitted to the ER for failure to thrive and diencephalic syndrome
November 7,2010 Inoperable tumor was found on 19 month old Ewan's hypothalamus.
November 8,2010 CT and MRI reveal tumor also coats his spinal cord and brain stem, PICC line placed
November 26,2010 60 week chemo regimen of Carboplatin/Vincristine started
December 2,2010 NG tube placed (pulled out 36 hours later)December 10,2010 Port placed.
January 26,2011 First MRI following start of chemo indicated CSF fluid retention.
February 8,2011 Non-programmable VP shunt placed
July 6, 2011 After three MRI’s indicating growth and/or enhancement, chemotherapy switched to TPCV(Thioguinine, Procarbazine, CCNU and Vincristine)
November 16,2011 First MRI indicating stable disease!!! Enlarged bladder led to uro-dynamic testing and catheter training
May 26, 2012 Emmett is born!!!
June 8, 2012 Finished 48 weeks of TPCV, MRI indicates stable disease, some small enhancement. We are taking a break from chemo after 80 weeks. Way to go Ewan!
August 24, 2012, Stable MRI, another 3 glorious months off of chemo!
June 7, 2013, MRI #13 - Stable, continued chemo freedom! 1 year of stability off chemo, move MRI's to every 4 months.
August 16, 2013, Port-a-Cath removed... what a milestone.
October 2, 2013, MRI #14 - STABLE!!! What a blessing, 5 months until next MRI.
March 13, 2014, MRI #15, Possible growth and enhancement, but not significant enough to start treatment
August 11, 2014, MRI #16, growth confirmed since 10/2/13 MRI. Restarting treatment.
October 8, 2014, MRI #17 to establish baseline for treatment.
October 13, 2014, Start 96 week Phase 1 Everolimus trial through Seattle Children's Hospital
December 8, 2014, MRI #18 indicates new tumor development in base of spine and growth in several spine areas . Fluid pocket (syrinx) has developed at top of spine extending in to brainstem, Everolimus trial stopped on 12/13/14.
December 16, 2014, Second port a cath placed.
December 23, 2014, Avastin/Irinotecan chemotherapy protocol started (both meds continued through December, 2015, Avastin only from 12/2015-10/2016, Avastin/Vinblastine from 10/16-01/17).
February 25, 2015, MRI #19, continued growth in syrinx, slight enhancement in some areas of the tumor although generally stable.
May 22, 2015, MRI #20, continued growth in syrinx (although less than 02/25 MRI), overall tumor generally stable
January 9, 2017 stopped Vincristine/Avastin because Ewan was so sick and tumor was generally stable (cysts/syrinx) continued to grow.
July 19, 2017 - August 1, 2019 Trametinib (mekinist brand name) off-trial (MRI scans in March and June, 2017 indicated growth and new tumors in spine and growth and enhancement in brain)
General stability for 2 years on Mekenist, so Ewan was taken off to allow his body to recover and have a break from treatment.
November, 2023 - After several years of stability/limited growth, Ewan is going back on treatment. He is now 14 years old, and a really wonderful person!
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