Zoe is playing outside!!  It is a beautiful day, and Zoe crawled to the deck and is watching Daddy build railings for her wheelchair ramp.

We are moving the site to www.zoeislife.org.  Please visit us there.

What Progress!!

Today

8 Days Ago

4 Days Ago

Promising Signs

To write about Zoe's physical pain, and the unfortunate behaviors she has developed because of it, sets in motion a sickening swirl of powerful negative emotions deep in the pit of my stomach so I will not detail them tonight. I would like instead to share what seem like promising signs of her neuropathy at long last being adequately addressed.

It has taken just over a week for Gabapentin (Neurontin) to reach a therapeutic level for Zoe and we believe it is relieving the sharp pangs Zoe has likely been feeling in her feet for the past five months. Up until last week, Zoe would violently scream and flail if she feared that her body would be moved or touched, and to see Zoe walk again was realistically a far off goal indeed. Today, this same child stood at 90 degrees for 20 minutes in her stander wearing orthotics and high top sneakers on both feet. She was able to enjoy munching on some Goldfish crackers and singing with Daddy to Camden before she declared ever so politely that she was, "all done."

Only briefly did I marvel with David in awed silence as we watched our daughter, holding our breath so as not to bring Zoe's attention to the fact that she was doing on her own what we had so desperately wanted for her for months. My joy was quickly and repeatedly robbed by the maddening question, "Why?? Why has it taken this long to address Zoe's disabling pain?? Why does this precious little girl have to pay the price for a doctor's unfortunate oversight and her parents' inability to convince a doctor to implement a pain plan months ago? Imagine all of the psychological and physical trauma we could have avoided!!"

I will never have a satisfactory answer, so tonight, as I try to rid my brother of his own pain while he flinches in his Hospice bed, I picture in my mind Zoe's smiling face, her body strapped in that hideous contraption, and how her accomplishment today portends the return of physical independence and the peace that comes when there is no fear of pain.

Cam visited Uncle Eric at his Hospice home yesterday.  Although, in general, a Hospice home can be a place of sadness, this one was blessed by the coos and giggles of Cam and a little lady friend from Texas as they played together in the common room.  They intend to Skype soon.

Here is the lower portion of Zoe's "stander."
Her right foot, clad in both an ankle-foot orthotic boot and a high top sneaker, is able to bear some weight and is fairly comfortable at a 45 degree angle.

Her left foot does not tolerate any weight; Zoe would not even wear the sneaker, let alone the orthotic boot.

You can see that her left foot is curved inward at the ankle.  This is the default position and it has taken a great deal of work to manipulate it up until this week.

Zoe began taking an anticonvulsant last week.  It has been prescribed with the hope that it will help to alleviate some of her neuropathic pain.  We assume she feels the sharp "pins and needles" tingling in at least her left foot and that this pain, and the fear of it, is a major obstacle to her walking.

Zoe has done well throughout this cycle.  In upcoming photographs, you will notice that all of her hair is growing back (Oh!  To see those beautiful eye lashes again!), and that she is quite tall (40"- Most people, including medical staff, think that she's 7 years old.  This is not helpful.).

This stander is one of the pieces of equipment we paid for out of pocket that the Annie's Angels Fund can subsidize.

Redeemed Memories

When Zoe was a week old, we took her on her first field trip and we decided it would have to be along the coast where David proposed to me.  She spent the next two summers at the ocean from March through October, often with our dog, Bella.  I never brought a beach chair because we never sat down.  When Zoe and I visited the beach all last summer, she would protest being there, and then fall asleep in my arms.  I did not know at the time that her head was probably pounding with the increased pressure of the tumor and fluid buildup.  Ever since realizing that she was in pain all that time, I have pangs of regret every time I remember those days at the beach.

My main goal for the week Becky would visit was to get to the ocean.  I wanted to redeem those awful memories of last year and begin building new memories of Zoe enjoying the beach again.  Becky was the perfect companion to help us realize this dream.  She and I met on the coast of Maine 18 years ago and we have always visited the ocean together (we even went to Hawaii together!!).

What a wonderful memory we made today!

Deja Vu

When we lived on the neuroscience floor of Children's Hospital, I would walk Cam throughout the hallways at all hours of the day and night, and I met other moms walking their babies or getting something from the kitchen for their sick child.  Until we lived on Floor 9, I never even knew a Floor 9 existed.  I had never really thought about dozens of beds booked solid all the time with children who had some of the world's rarest, most difficult brain and spine illnesses.  Although Zoe's cancer had a poor prognosis and her brain surgery had layers of complications (still unfolding), ours was a family with hope that Zoe's condition would improve, whereas some of our neighbors on that floor knew that their children would remain forever as neurologically impaired as they were that day.  To walk that floor was an exceptionally humbling experience which kept self-pity at bay.

Today, I had a similar experience.

Cycle 8

Tomorrow, March 19th, marks month 7 since we brought Zoe to the Children's Hospital Boston Emergency Department.  In some ways, it feels like a lifetime ago, and yet, when I see Zoe able to think or move in a way she couldn't the day before, it seems that Zoe has come so far in a shockingly short period of time.

Cycle 8 starts Tuesday.  It's a miracle that Zoe has remained healthy through the flu season and through her many days in and out of hospitals.  She is on schedule with the protocol and will receive Actinomycin at MGH and 5 days of temozolomide which we administer at home.  We go through three more cycles before the next MRI which is scheduled for sometime in May.

Becky will be back to visit with us this cycle, which will be wonderful.  Please keep her in prayer as she comes to serve and live with us in this incredibly challenging time.

Lucy's Love Bus

A local high school student coordinated a fund raiser for Lucy's Love Bus, the organization that is helping to pay for Zoe's music therapy lessons which mean so much to our family.  Insurance doesn't cover many alternative therapies, and they can be quite costly due to the nature of working with children who have severe disabilities and/or life-threatening illnesses.

I don't know this student personally, nor do I know the school staff and families that surely coordinated efforts to make this a success, but our family is grateful that people like him and schools like St. Thomas are actively supporting an organization that makes a difference in so many lives.

Look at how evenly Zoe is raising both arms!

Come To Jesus

Tomorrow it will be eleven months since my brother, Eric, called to tell me he had a brain tumor, and four months later we were overjoyed with Cam's arrival, followed a week later by finding out about Zoe's brain tumor.  Throughout the past year, I have had moments that deeply resonate with each stanza of the song, "Come to Jesus" by Chris Rice and I wanted to share it with you.  I couldn't find a link without a video, so I just close my eyes and listen.  Thanks, Gwen and Christian, for introducing this song to me.

http://www.youtube.com/watch?v=e_4g8_e16dc

Took a Few Steps

Zoe had a two hour speech, occupational, and physical therapy session today, during which she walked a few steps, trying to close in on what she thought was a real Oreo cookie.  When it turned out to be a fraud, she lost all initiative...However, we now know she is well on her way to walking!!  We just need to get some cookies...

Boston Marathon Runner Honors Zoe

Carla Tardif is running the Boston Marathon in honor of Zoe.  You can read her post about Zoe here: http://www.crowdrise.com/TardifBoston.  This is a fundraiser for Families Reach Foundation which helps families with significant funds, such as a mortgage or heating bill payment, while they are experiencing a health crisis.  This organization gave us two grants which made it possible for David to be at Zoe's bedside, rather than at his office, during the most challenging months of our lives last winter.

Carla, seen below as number 7001, saw cancer affect her grandmother, mother, sister, and best friend from college, and, while pregnant with her son (I think he's 10 now), was diagnosed with cancer herself.

Who am I and why am I here?

Untitled from US on Vimeo.

This video is dedicated to my brother, Eric, and his wife, Sarita.

Thanks to Chris Tomlin for his song, "God of Wonders".

Skipped it again!

Zoe's blood counts are already up, so she has gone through Cycle 7 without needing a blood transfusion or a stint in the hospital!!!

So, we're spending this wintery day with books by Shirley Neitzel (http://www.shirleyneitzel.com/books.htm) such as The Bag I'm Taking To Grandma's, which I highly recommend to readers such as Zoe.

Our music therapist, Ryan Judd (http://ryanjudd.net/pictures), introduced them to me.  Neitzel uses both rhymes and icons within the text to enable the reader/listener to participate in reading aloud.  Zoe loves them.

(Look at her use her right/weak hand to point to the bag she's taking to Grandma's!)

Praise and Prayer

2/29/11
Zoe saying, "Cheese!"

"Good morning, Cam!" was Zoe's enthusiastic greeting to her sleepy-eyed brother.  I haven't heard her say, "Good morning" since before her craniotomy last August.  Later this morning, she informed me, "Cam's sleeping," and about an hour later she told me her suction cup basketball hoop for the bathtub was stuck in the bath toy bucket (Mommy, it's stuck.).  To hear her use three sentences in one morning, all without prompting, is just a sample of how quickly her mind is healing.

In March, we will begin the process of talking with schools about Zoe becoming a student this fall.  We will also meet with Make-A-Wish representatives.  We thank the Lord that we have hope for Zoe, that we are thinking about her future and are excited about programs and experiences available to her.  We pray for all the people we will meet, that we may be a blessing to them and that their minds and hearts will get to know and appreciate Zoe, her complicated medical situation, her rapidly healing mind, and her courageous, compassionate spirit.  We pray that we would be wise and patient in making decisions, that we would be clear and comprehensive in communicating, and that we would enjoy the Lord's work and will.

Please join us in prayer for the above matters, and also for a few I can't detail right now.  May we know faith, wisdom, patience, perseverance, grace, and harmony in all these matters.

Thank you all.

Catherine

Another little girl from NH with ATRT

I'm too shocked to write.

Please pray for this family: http://www.fosters.com/apps/pbcs.dll/article?AID=/20120227/GJNEWS_01/702279966/-1/FOSNEWS

Toddler from Rochester struck with rare cancer: Locals fundraise for financial burden

By DANIELLE CURTIS dcurtis@fosters.com

Monday, February 27, 2012

Brynlee Letendre Click here to view Foster's prints for sale

ROCHESTER— When 20-month-old Brynlee Letendre woke up on Feb. 13 unable to open her right eye, there was no way for her family to guess just days later she would be diagnosed with an extremely rare form of cancer, with three tumors on her brain.

Cycle 7 Update

David has prepared a video of Zoe that we intend to post on the site, so stay tuned.  Oh, and I've put a few more photos in the Photos section of the blog, so feel free to visit.

Thank you to everyone who has been praying for us, feeding us, sending us encouraging notes and scripture verses, and gifts.  We must have 8 prayer shawls now - imagine all that time in prayer!

Cycle 7 consisted of one dose of Dactinomycin administered at MGH on clinic day, and five doses of temozolomide, one per day, through Zoe's g-tube.  Zoe was given Decadron, Benedryl, Aprepitant, and Zofran as anti-emetics and they worked - she didn't throw up once!  We expect that this week, her counts will drop, but perhaps, like last cycle, she will not need to be hospitalized or need a transfusion.  We will see.

February 2012 Medical Update

February 2012 Medical Update

Zoe does not have the germline mutation, so the INI-1 deletion was found only in the tumor cells and not in her healthy cells.

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.

Helpful Snippets

Yesterday, I tucked Zoe and Cam into the double stroller and, for the first time, went for a walk with them around the block. I met up with a couple of neighbors who hadn't heard Zoe's journey and, as I shared with them our story, they wondered what were some logistical supports (in addition to our community support) that made it possible for us to make it from one difficulty to the next. It occurred to me that we might have a few helpful snippets that other people would like to know. Below is a brainstorm, not in any particular order, that may help another family experiencing medical crises.

1. Before you leave the hospital, get a doctor's summary of diagnosis, current disabilities, treatment plan, etc. Have the nurse's station give you at least three copies.

Turning a Corner

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.

Zoe Breaks a Record!

With Cycle 5, we were thrilled beyond words that Zoe did not need to be hospitalized for side effects when she was neutropenic.  That was the first time since beginning chemotherapy in October 2011 that we did not spend the majority of the month in the hospital.  To be home for such an extent markedly improves her disposition and vocabulary usage.

Well, today is Day 12 of Cycle 6 and she is not only still home, but she hasn't even needed a blood transfusion!!!!  It's definitely a record for us.  Her blood will be tested again Monday morning.  It will be interesting to see if she never even became neutropenic with this cycle.

So, what have we been doing with all our free time?

What A Day

To have two people in my immediate family simultaneously fight brain cancers is an experience difficult to adequately convey.  Here's a photo of Zoe, still woozy from being sedated earlier this morning for an MRI, sitting with Uncle Eric.  They each have arguably the most aggressive forms of brain cancer for their age groups.

Evaluation Week

Zoe is scheduled to have an MRI of her brain and spine and a lumbar puncture aspiration test on Monday morning.  The purpose of these tests is to determine how effective this protocol has been against her ATRT cancer.

She has completed six chemotherapy cycles and 28 proton beam radiation therapy treatments.  If the MRI does not show any signs of cancer, then Zoe will begin a maintenance schedule of chemotherapy for the next eight months.  These treatments should be much more manageable than the first 4 chemotherapy cycles were, and that should translate into her being home and healthy for approximately two - three weeks between each cycle.

If the MRI shows signs of cancer, then it is possible we will discuss other treatment options such as a change in chemotherapy.

Genetic Testing Results

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.  

Oh, to see her walk again...

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.

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!

Five Month Mark

It was five months ago today, January 19th, that we brought our 34 month old daughter, Zoe, and her 8 day old brother, Cam, to Children's Hospital Boston because we noticed a marked decline in her physical coordination.

Three nights later, she gave fist pumps to the neurosurgery team who would remove the baseball-size tumor from the center of her brain.

Here she is after the resection, holding her 12 day old brother in the ICU.  You can see the small, curved incision above her left eyebrow.

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

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.

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).