We spent the day at Massachusetts General Hospital. Zoe arrived from CHB by hospital transport to the pediatric imaging center where she had an MRI of both her brain and spine. The purposes of these images were to plan for proton beam radiation and to gauge the effect of chemotherapy thus far on what is left of her brain tumor tissue. The September 30th MRI showed white areas that could be either cancerous remains from her August 23rd craniotomy, new cancerous growth, scar tissue, or some combination of any of these, so it was important to compare today's MRI with that one, and, at least according to MGH's neuroradiologist, it appears that Zoe's treatment is halting growth and perhaps reducing the white areas. We will hear from Children's neuroradiologist perhaps Wednesday or Thursday and take that interpretation into consideration as we move forward with Zoe's treatment.
Zoe has been able to tolerate her intense chemotherapy and is on schedule with the protocol. She has needed constant hospitalization to do so, but she has done it. She begins proton radiation tomorrow at 8am. She is scheduled to attend proton Wednesday and Thursday, have a gastrointestinal tube surgery Friday, recover Saturday, attend proton Sunday, Monday, Tuesday, and Wednesday, and then have Thursday through Sunday, November 24th - 27th, free. Because she will not have had chemotherapy between now and then, Zoe will not endure mucositis or any of the other side effects of chemotherapy during this timeframe.
Since my last blog on November 4th, we have moved into our Boston apartment. That's right, we're city people now. Our family's case was brought to the attention of the intake assessor for the Proton Beam center and she connected us with housing across the street from MGH that is donated to patients in the program. Although David and I have never actually been in the apartment at the same time together, it is our new home and we are extremely grateful for it. The floor consists of seven families, all at different stages of treatment for pediatric cancer, and all from different parts of the country. Life here is reminiscent of the community feel of a college dorm in that people congregate throughout the day and night in the hall and in the common room, share meals and stories of the day, help each other with errands, and play video games at night. David and I rarely take part in these activities as we spend virtually every second at Zoe's bedside, but we have already felt the love, acceptance, support, and thoughtfulness of our Christopher's Haven community.
Tomorrow morning, I will bundle up Cam, walk the stroller across the street, and meet David and Zoe at the Francis H. Burr Proton Beam Therapy Center. Zoe will be sedated, have a dose of proton beam therapy, (http://www.massgeneral.org/radiationoncology/AboutProtonTherapy.aspx), and either meet with her MGH neurologist or be transported back to CHB where we may meet with her Dana Farber team (appointments are always up in the air until the very last minute with Zoe).
Our 14 pound baby, Camden, will be my constant companion tomorrow as he brings a huge smile to Zoe's face and she loves introducing him to all the nurses. "Aunt" Rachael may help me out for a few hours tomorrow so that we can meet with doctors. Both of my children love her, and she's the type of person who, much like Becky, can think for me and be my hands and feet. Last week, I was driving our van full of medical supplies and baby toys that would be needed for our children to live in Boston. I was about thirty minutes from the apartment when I realized that I could not bring any of the equipment up to our apartment alone (You would have to understand the parking situation in Boston outside a 17 story apartment building and how having an infant means having no hands free to fully appreciate the predicament I was facing). My entire mission was hanging in the balance when I looked at my phone and saw that Rachael had just texted me the names and phone numbers of the women on my floor and insisted that they would be happy to help me any time! Because Rachael had put herself in my shoes and considered what it would take for my project to succeed, she was able to supply me with much needed logistical support that I hadn't even yet considered. Thank you, Rachael!
Last Thursday night, David and I were invited to a special fundraising event called Caring & Culture. Zoe had been out of the ICU a couple of days and was stable, so we left her in Rachael's capable hands, stuffed Camden into a sleep sack, and waded through traffic and rain to The Liberty Hotel where we were introduced to one compassionate, generous, kind person after another. I would love to say that we were witty and fashionable, and dazzled crowds with our knowledge of current events, but really Cam stole the show. That child knows how to work a room. He shamelessly cooed at complete strangers, had his photo taken with beautiful women, and let an artist create a caricature drawing of his smiling face. His big sister was anonymously featured in the Small Can Be Big (http://www.smallcanbebig.org/how/) portion of that night's event, and we are the recipients of the generosity of complete strangers. Our apartment in Boston during our proton treatment is now essentially free. It was substantially subsidized to begin with, and with the money from the fundraiser we can pay for 6 weeks rent. Praise the Lord for that!
I wish I had time to share all the anecdotes that fill my heart and strengthen me for the next day, but I have to get some sleep so I can do Day 64 tomorrow. I would share about all of Zoe's visitors last weekend (Thank you all for being so gracious to me as I was running on adrenaline and for bringing kind words, chocolate, music, and prayer to us!) and how Zoe made her way through psychological and physical challenges up and down a set of playground stairs (Go Zoe, Go!). I would relay the phone call I had with Malia's mom, Megan, and the journey they are on (http://www.maliacrushescancer.com/blog.php), and how they, in the midst of their own unimaginable pain, pray for Zoe every night.
Be at peace knowing that God is giving me exactly what I need everyday.
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