First post:
Aug 30, 2009 Latest post:
Oct 30, 2019
Welcome to our CB website. In July of 2009, Matilda was diagnosed with a grade III infratentorial anaplastic ependymoma (EPN-PFA).
In July 2009 we were visiting family in St. Louis between our overseas postings in Tel Aviv, which we had just left after three years, and London, where we were supposed to spend the next three. All of our earthly belongings were on a ship heading for the UK, Anna was signed up and anxious to start 2nd grade at the American School of London, Amelia was excited to be moving where they have real princesses, and our suitcases were filled with barely enough stuff to get us through the summer. Van's job at the Embassy was waiting for him, and even the mail was being forwarded.
Then our world forever changed. Our youngest, Matilda, was diagnosed with a brain tumor, following a sudden deterioration of her health caused by hydrocephalus. She was quickly admitted to St. Louis Children's Hospital following a CT scan that discovered the tumor, and that same evening she was fitted with an external ventricular drain to relieve the pressure on her brain from the tumor-induced hydrocephalus.
A few days later, on July 17, the same day Matilda turned 15 months old, she underwent a 12-hour operation to remove the tumor, which was located in her cerebellum and brain stem. Our neurosurgeon, Dr. David Limbrick, managed to get nearly all of the tumor out, leaving only a minuscule "rim" of tumor tissue in the brain stem. The post-operative MRI exceeded even his best expectations and came back clear. So despite a slight scattering of tumor cells remaining on her brain stem, Matilda's surgery was classified as a gross total resection. Thus began several days of optimism fueled by predictions of a low-grade tumor and low dose, or even no, chemotherapy. That would be okay. We could handle that.
But then the pathology results came back. It was a grade 3-4 Anaplastic Ependymoma, a relatively rare and aggressive malignant brain cancer with a poor prognosis for young children. We were told that she will need very heavy doses of chemo, but that this alone isn't generally considered enough to hold it back.
So, in August of 2009 we moved to DC instead of London, and sought treatment at Children's National Medical Center. Matilda endured five months of high dose chemo, involving inpatient and outpatient treatments -- in an attempt to delay radiation. (radiation is the preferred treatment for her tumor type, but it's considered incredibly risky for young children, particularly for those under the age of three).
Nevertheless, fearing our window for optimal treatment nearing its end, we opted to proceed with radiation. After exhaustive research, we set our sights on proton beam radiation and headed to Mass General in Boston, the most experienced proton beam facility with pediatric brain tumors.
And, after 7 years of clear scans, it came back...
To this date, Matilda has endured:
- July 2009: Surgery: External Ventricular Drain (EVD) fitted to relieve hydrocephelus - July 2009: Surgery: Tumor resection (GTR) - August 2009: Surgery: Portacath implanted - August 2009-December 2009: Chemotherapy: Vincristine, carboplatin, cyclophosphamide, etoposide, cisplatin (mesna,neulasta) with six related hospitalizations - September 2009-January 2010: 4 blood transfusions - January 2010: Surgery: VP Shunt implanted - February 2010- March 2010: 26 rounds of Proton Beam radiation, 4 rounds of photon - 3-D conformal - May 2010 - Surgery (port-a-cath removal) - yay!
April 2010 - clear! July 2010 - clear!!! Oct 2010 - clear!!!! Jan 2011 - clear!!!!! March 2011 - stable! May 2011- Dec 2015 -all stable, NERD!
Dec 2016 - new tumor... Feb 2017 - stable tumor April 2017 - stable tumor August 2017 - stable tumor Nov 2017 -stable tumor Feb 2018 - stable tumor April 2018 - growth... May 2018 - growth... Aug, 2018 - growth... Sept 2018 - resection of at least 80% Oct 2018 - stable December 2018 - stable/radiation changes Jan 2019 - growth Feb 2019-growth June 2019 -growth August 2019-growth
So from July 2009 - October 2019: 53 MRIs, 17 hospitalizations, 22 CT scans, 14 surgeries, 12 cycles of chemo (6 high dose, 6 metronomic), 5 blood transfusions, 6 months on T cell trial, 4 months on AZA Toronto trial, 11 ER visits, 63 rounds of radiation (4 photon, 61 proton beam), numerous other xrays, other minor tests, and more clinic visits and blood draws than I can count...
Matilda's family includes: mom- Lindsay, dad- Van, amazing sisters- Anna (17) and Amelia (14)
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