January 24, 2012: Zoe does NOT have the germline mutation, which means that the chromosomal deletion that helped give rise to the ATRT tumor is present only in the cancer cells and not in all the cells of her body, and that means that neither I nor Cam need to have genetic testing to gauge the propensity for ATRT brain cancer.
Tuesday, January 24, 2012
Monday, January 23, 2012
Sunday, January 22, 2012
Quick Update
By the time you read this, it will be Day 14 and Zoe has been home without side effects throughout this cycle. That is a miracle. We expect her body to be rebuilding itself and will get some bloodwork done Tuesday to confirm where she is with her ANC and such, but we expect that she will remain out of the hospital until Chemo Cycle VI January 31.
Friday, January 20, 2012
Chemo Cycle V Day 11
Well, this would be a first.
Eleven days out from the first infusion of chemotherapy for each cycle has meant an extended stay in the hospital, if not a stay in the ICU watching Zoe experience tortuous side effects. Well, today is Day 11 of her fifth chemotherapy cycle and she is at MGH receiving platelets, but there hasn't been a hint of fever or nausea, she has been eating and drinking orally, and, though physically quite weak, her mind and spirit are blossoming. Praise be to God!
Eleven days out from the first infusion of chemotherapy for each cycle has meant an extended stay in the hospital, if not a stay in the ICU watching Zoe experience tortuous side effects. Well, today is Day 11 of her fifth chemotherapy cycle and she is at MGH receiving platelets, but there hasn't been a hint of fever or nausea, she has been eating and drinking orally, and, though physically quite weak, her mind and spirit are blossoming. Praise be to God!
Thursday, January 19, 2012
Five Month Mark
Three nights later, she gave fist pumps to the neurosurgery team who would remove the baseball-size tumor from the center of her brain.
Updated Medical Synopsis
February 2012 Medical Update
On Tuesday, February 21st, Zoe received Dactinomycin and Temodar as Cycle 7 began. This cycle is an outpatient cycle and we administer additional doses of Temodar at home for four days.
We were able to meet with Zoe's neuro-oncologist and view the MRI images from February 13th. There is no sign of disease in her brain or in her cerebral spinal fluid. Her brain matter is returning to the midline position. There is still an elevated amount of fluid on her left side which may or may not equalize over time.
We are thrilled that there is no sign of disease. However, we also know that if this disease reemerges, it will typically do so within the first two years of diagnoses, although there are exceptions to that.
Zoe recently had a neuro-opthalmology and an opthalmology exam and it seems that she has 20/30 vision in each eye and that her optic nerves are healthy. We are to start patching her dominant (left) eye for a couple of hours a day to keep her weak eye from further deterioration.
Zoe is scheduled to have her g-tube converted into a Mic-key button next week. While she is sedated, the pediatric opthalmologist will complete her eye exam as Zoe was not a fan of having light shined in her eyes this afternoon.
Zoe has been fitted for a set of ankle braces and we expect those to arrive in a couple of weeks. At this point, Zoe's feet, ankles, and leg muscles are atrophied to such an extent that she is not bearing any weight on her feet. It will take months of physical therapy to develop her motor skills and perhaps months more for her to cognitively and visually relearn how to navigate her environment.
January 2012 Medical Update
On Tuesday, February 21st, Zoe received Dactinomycin and Temodar as Cycle 7 began. This cycle is an outpatient cycle and we administer additional doses of Temodar at home for four days.
We were able to meet with Zoe's neuro-oncologist and view the MRI images from February 13th. There is no sign of disease in her brain or in her cerebral spinal fluid. Her brain matter is returning to the midline position. There is still an elevated amount of fluid on her left side which may or may not equalize over time.
We are thrilled that there is no sign of disease. However, we also know that if this disease reemerges, it will typically do so within the first two years of diagnoses, although there are exceptions to that.
Zoe recently had a neuro-opthalmology and an opthalmology exam and it seems that she has 20/30 vision in each eye and that her optic nerves are healthy. We are to start patching her dominant (left) eye for a couple of hours a day to keep her weak eye from further deterioration.
Zoe is scheduled to have her g-tube converted into a Mic-key button next week. While she is sedated, the pediatric opthalmologist will complete her eye exam as Zoe was not a fan of having light shined in her eyes this afternoon.
Zoe has been fitted for a set of ankle braces and we expect those to arrive in a couple of weeks. At this point, Zoe's feet, ankles, and leg muscles are atrophied to such an extent that she is not bearing any weight on her feet. It will take months of physical therapy to develop her motor skills and perhaps months more for her to cognitively and visually relearn how to navigate her environment.
January 2012 Medical Update
After the resection, Zoe's brain had difficulty regulating her respiratory rate, heart rate, urine content and function, and temperature. She was diagnosed with Diabetes Insipidus, but, upon beginning Chemotherapy (at which point she needed to stop taking DDAVP so that the chemicals would be frequently eliminated from her bladder), it was discovered that her brain had healed and this condition no longer applied.
Zoe still has hypothyroidism and may, indeed, have hypothyroid obesity.
Monday, January 16, 2012
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.
Saturday, January 14, 2012
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.
Monday, January 9, 2012
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!!
Sunday, January 8, 2012
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.
Saturday, January 7, 2012
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/).
Wednesday, January 4, 2012
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).