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?