Even though the quality of this December 3rd photo is terrible, I had to post it because I just recently found it and loved how my hair was making Zoe look like she had a cute little haircut.
Because Zoe's Week 18 MRI showed that her disease has been responsive to the chemotherapy and radiation treatments, we move onto the Maintenance Phase of the protocol. If we had remained at Children's Hospital, we would move onto Floor 9 (Neuroscience) for most of next week. However, Dr. Ebb at MGH has taken some liberties with the Dana-Faber protocol and condensed the temozolomide administration into five at-home doses. This means that next Tuesday, Zoe will visit Yawkee floor 8 for labs and an infusion of Dactinomycin into her port and a dose of Temodar into her g-tube, and get back in the car that afternoon. As difficult as it is to imagine such a brief chemo experience, wait until I tell you that we have four whole weeks before we have another chemo cycle, and that we expect to stay out of the hospital most of the four weeks!!!!!!! Unprecedented. Since August, hardly a month has gone by without at least one major surgery, a dozen procedures, two blood transfusions, and a shocking (and sometimes ineffective) array of drugs.
Had we chosen the Children's Oncology Group protocol back in September, we would just now be moving into Children's Hospital for three months for a stem cell transplant phase. Both the DFCI and the COG protocols had dismal outcomes, so we chose the DFCI path because its design included much less time in a hospital. Well, as it turned out, Zoe spent three months in the hospital anyway simply due to side effects, and I'm glad that phase is behind us.
We really are turning a corner. A typical day begins around 5am when Zoe asks for Cheerios and Cam, so I bring in Cheerios and Cam. Zoe always wakes up in a great mood and eager to share what is on her mind. This morning she asked, "Where?" questions correctly and without parroting me. This afternoon, she correctly summoned "Aunt" Rachael to come play with her during tub time (she likes to post all the foam alphabet letters onto the wall of the tub and name them aloud to an audience). Just a couple of weeks ago, Zoe's conversation was comprised primarily of identifying nouns and getting the attention of someone by repeatedly saying, "Hi!", so today's two developments are encouraging and, really, astonishing, examples of her brain healing. We are no longer living in the constant turmoil representative of those first five months. Thank You, Jesus!
My brother Eric turns 41 on Friday. His MRI from last Friday shows no additional tumor growth, (Thank You, Jesus, again) so he will continue on his clinical trial. Because they are staying on the trial, they need to put their Hospice care on hold. They have been buying adaptive equipment out of pocket, as well as working less frequently due to their medical crisis. The types of organizations that have helped us were all geared toward pediatric cancers and, so, are unable to help them. If you would like to help support Eric and Sarita financially or otherwise, please visit http://www.supportericandsarita.com/ and http://princesspearlz-sarita.blogspot.com/.
A very special someone whose grandmother, mother, and sister have had hereditary breast cancer is training to run in the Boston Marathon this year for Zoe. It is an honor that she would dedicate such time, energy, discipline, and thought to our child. All of the money she raises will go to the Family Reach Foundation, the organization that anonymously featured Zoe in a fundraiser and provided one month's mortgage payment for us while we were living (and paying rent) in Boston. If you would like to support that organization, please visit www.familyreach.org. If you would like to learn more about the specific branch that helped us last year, visit http://www.smallcanbebig.org/family/44931/. It features families facing medical crises that derail their financial stability.
With love and gratitude to God for you,
Catherine
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