So Symbolic

Doesn't everyone have days like this? Bounce from one thing to the next and then,...crash.

Health

I just want to mention how remarkable it is, and how much I appreciate, the fact that we have made it this far, under these conditions, without getting sick yet. Camden has somehow (breastmilk?) made it through every Emergency Department (Yikes! Just imagine what's floating around in there!), hospital room (I don't even want to tell you what we've experienced there), waiting room, and shared public space without contracting anything. David and I, on virtually no sleep, unsanitary living conditions, constant, unimaginable stress, and a variety of food sources, haven't succumbed to anything yet. Everytime we touch the elevator buttons, door handles, other people's pens, phones, etc, we've gotten into the habit of CalStating and washing our hands. My hands look like I've been working in a biohazard plant for a decade without wearing protective gloves, but it's worth it to be able to be close to Zoe and healthy enough to care for her.

The Baby Cam Song!

Baby Cam Song from US on Vimeo.

Saturday Morning Cartoons

Our two children have been cuddling and giggling with each other all morning while watching cartoons and having breakfast. We have the fire going, Zoe's in a great mood, Cam's bouncing away in his frog seat, and we're enjoying the last moments with our Christmas tree.

Today is Day 4 on this cycle. Typically, by Day 7 or 8, Zoe ends up in the hospital. We'll keep you posted.

Cycle V

This has been a weekend exceeding all expectations. Zoe practiced crawling, walking, singing with friends, and learning her shapes and letters. Her eager attitude and increased endurance were key assets in her progress.

I was also able to attend my first church service in months and it was wonderful to hear the congregation sing praises to the Lord. I don't sing, so it felt like they were singing beautifully what was on my own heart to praise the Lord. And the reading was from Nehemiah, one of my favorite books!

Zoe had her blood drawn Monday morning and her numbers look good, so we will be in Boston Tuesday through Thursday for Chemo Cycle V. Thankfully, "Aunt" Rachael is available again this week, so we will have her capable hands and compassionate heart helping us. Thank you, Rach!!

Timeline

Here is a whirlwind tour of Zoe's hospitalizations since August 19th.

August 19 - September 8 (Inpatient 21 days): Brain mass diagnosis; 8/23 Craniotomy and tumor resection; two weeks in recovery

September 8 - October 4: At home managing Diabetes Insipidus, physical and mental disabilities, and an array of medications; preparing for chemotherapy; and making arrangements to live in Boston and to apply for Medicaid benefits for Zoe.

October 5 - October 15 (Inpatient 11 days): Chemotherapy Cycle I meant a four day continuous infusion in the Intensive Care Unit to carefully monitor Zoe's electrolytes, urine output, and reactions.

October 15th: Arrived home at 4pm. Zoe's state of health declined quite rapidly. She did not show signs of nausea or fever, but rather her eyes looked fearful and sick and she became resistant to taking oral medications, drinking, or even speaking. Thirty hours after we had been discharged from Children's Hospital, we we being readmitted with a fever of 102, neutropenia (Absolute Neutrophil Count of 0.6), and severe mucositis which involved another stay in the ICU.

The Difference A Community Can Make

We left Boston yesterday and when we arrived at our home, we found a scrumptious meal waiting for us. We were famished and the fridge was empty, so this was most appreciated! Thank you, "Aunt" Heather! And then "Aunt" Libby and Carly dropped off groceries and dinner. Last night, "Uncle" Matt came to play guitar for Zoe (and take Daddy out for his birthday). Soon "Aunt" Tammy will bring our dog to visit us for the weekend. It's a good thing Zoe has such a large and generous extended, unofficially adopted family!

We expect this four night stay to be the longest stretch in our own home since September and we are enjoying every minute of it.

Soon we will no longer receive mail at our Boston address, so please be sure to send all correspondence to our permanent address.

You may remember that a top prayer request of mine upon diagnosis was that our family would not be torn apart by having to live apart - David and Zoe at the hospital, and Cam and I living at our home. Well, we have been somewhat transient, but we have all been able to stay together in Boston at one place or another. Our five month stay in Boston would have been the financial equivalent to suddenly buying a car outright, except that it didn't cost us a dime. Yes, you read that correctly. Here's a breakdown off the top of my head of the organizations and people that made that possible:

1. Children's Hospital Boston allowed all four of us to live on the ninth floor, and five stays in the ICU, for three weeks.

2. Our friend's brother's friend is the chairman of New Balance shoe company and, when he heard our story, donated a luxurious three week stay at the Lenox Hotel (http://www.lenoxhotel.com/) just a few miles from CHB. This stay coincided with the second exceptionally traumatic stint in the ICU due to a degree of mucositis pain that the doctors didn't know how to effectively treat and that the ICU nurses said they never see. The Lenox staff was noticeably gracious, generous, thoughtful, and forgiving. For that chemo cycle, financial obligations were the last thing on our mind because we were trying to hold onto our sanity as we watched Zoe experience unfathomable pain. Thank you, Jim Davis, for giving us this gift (http://www.newbalancefoundation.org/).

Today

For those of you who like the blow by blow account, here's the day from Zoe's perspective:

Last night was the 87th night I have spent in a hospital since August 19th. My counts were really low, even this far out from chemo (Day 15), and I kept hovering around 100 degrees throughout this six day stay at MGH, so it was still up in the air whether I would be able to make my much-anticipated neuropsychology evaluation today. My neuro-oncologist at MGH, Dr. David Ebb, took a proactive approach: he signed for my vincristine (chemo drug) to be administered, ordered the nurse to draw my blood labs at 3AM sharp so we would know my counts and if I should have a platelet transfusion before 8AM, and told the night team and my morning nurse that I was to be allowed to go to the neuropsych appt unless I was clearly ill or had a temp of 101.

Daddy spent the night with me and made up fun games so I would use my right hand without thinking about it. There's the, "Fa, Fa, Fa" game which involves me pushing and pulling his hands, and the "Boop!" game, which gets me to move throughout my right shoulder's range of motion to reach out and touch his great big index finger with my itty bitty index finger (Mommy loves watching this game and how much affection there is between us).