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My Story

Why be saddled with this thing called life expectancy?
Of what relevance to an individual is such a statistic?
Am I to concern myself with an allotment of days I never had and was never promised?
Must I check off each day of my life as if I am subtracting from this imaginary hoard?
No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish. 

~Robert Brault

Ethan was diagnosed with Neuroblastoma Stage 4 on March 5th, 2005. This devastating news came just days after his 3rd Birthday. The doctors told us that Ethan’s overall chance of survival was only 25%. Who would have ever thought that his leg pain and unexplained fever was cancer.

The worst of the worst…a deadly form of cancer where there is no specific treatment meant just for Neuroblastoma. Instead, trial studies and experimental therapies were in our future.

Ethan underwent 6 rounds of extremely high dose chemotherapy, surgery to remove the tumor in his abdomen, a stem cell transplant and 12 rounds of radiation to the tumor site. This trial study was followed up by an experimental therapy at Sloan Kettering in New York called 3F8 Antibody Treatment. Ethan received 5 rounds of this treatments before becoming “Hama” positive, which means his immune system is trained to fight neuroblastoma cells.

Today, Ethan is cancer free and is back to enjoying all the childhood fun and games that was taken from him for over a year and a half. Doctors have also increased his overall chance of survival to 50% (considering the high rate of relapse).


In November 2007, a lump was found on Ethan's left shoulder blade...later to be diagnosed as osteochondroma, a benign tumor growth in the bone. This is in part, a side effect of having Total Body Irridation for his Stem Cell Transplant.

Around June of 2008, several benign tumors were discovered on Ethan's liver.

On Nov. 21, 2008, we found out that Ethan's cancer had returned, Recurrent Neuroblastoma. MIBG uptakes were discovered in one shoulder, his leg, his spine and chest...along with in his bone marrow.  There were a total of 12 spots at re-diagnosis

Ethan underwent 2 rounds of high dose chemo followed by a set of scans.  The scans showed that the chemo was not acting effectively.

Ethan then underwent one round of maintenance chemo before becoming the first patient in a New England hospital to recieve MIBG therapy (aka liquid radiation).   The first round was scheduled the week of Ethan's 7th Birthday (feb 17th).  Follow up scans show a HUGE improvement, leaving residual uptake on MIBG scan and small traces in the bone marrow.  Then Ethan underwent a 2nd round at the beginning of May 2009, scan results show "stable with limited improvement". 

At this time, Ethan only had two more spots to take care of.  So he underwent more chemotherapy, using irinotecan, carboplatin and temodar...followed up by a much needed stem cell rescue.  Results "stable with no improvement".  At that point, we decided to allow Ethan's body to rest and put him on a treatment known for stability called ABT-751 at the beginning of Sept. 2009.  However, in November 2009, Ethan's cancer showed 2 new spots of progression and we had to discontinue the use of the ABT-751.

From there, Ethan began a treatment using Temodar and Thalidomide, which consists of taking pills at home...everyday.  Also, at this point, I added Harmazone, a form of"Essiac" to Ethan's daily routine. Later, I added the use of a DHA supplement.  Thus far, the DHA has proven to rid Ethan of his mood swings and temper tantrums.

After 4 rounds of Thalidomide/Temodar treatment, On March 18, 2010 scan results showed massive "widespread" progression throughout Ethan's entire skeletal system, from his shoulders down his arms, down his spine and chest cavity, to his pelvis, and down his legs, right down to his ankles. 

We then decided to try out a new phase 1 protocol using both IV and oral cyclophosphomide, with Avastin and Zometa.  This treatment is primarily used for bone metastesis.  Unfortunately Ethan's LFT's remained too elevated to remain on protocol.

Scans were conducted in Vermont, as preparation for a new study.  Results show even more progression to several area's in skull and soft tissue mass on spine.  Radiation was conducted to the orbital area and spine, along with etoposide and velcade treatments.  Biopsies were perfomed for DNA and RHA testing for Personalized Medicine Study in Vermont.

During a routine platelet transfusion in June 2010, Ethan failed the neurological exam sending us directly in for an admit into the ICU.  Tumor progression was found in the entire skull, putting pressure on Ethan's brain and brain stem.  10 rounds of full brain radiation was conducted.  We were sent home on hospice care...and no further treatment options.

At the beginning of July 2010, we decided to start Ethan on the chemo regiment perposed by the Personalized Medicine Study by Dr. Sholler (Vermont).  Scans were conducted prior to starting the drugs...further progression in lung, spleen and jaw.


Amy Smith posted a new journal entry, "3 Year Angelversary".

This anniversary was harder than the rest, by far.  I think it's because it's always hard going through the anger and sadness that that day represents.  But in ... Read more

Cyndi Van Volkingburgh signed Ethan's Guestbook.

Hi Amy:  Just wanted to let you know that I remember Ethan and think of him and you all often.  Still doing little kindnesses in his honour.  Hope you are both doing ... Read more

ann zambetti signed Ethan's Guestbook.

I followed you all for a long time - my own son died 3 months before Ethan.  The "Normal" you posted is EXACTLY.HOW.IT.IS.Re the teenage thing - one of my daughters ... Read more

Cyndi Van Volkingburgh signed Ethan's Guestbook.

Hi Amy:  I read this link on another caringbridge page and thought of you, hope you get a chance to read it...http://www.pubslush.com/books/id/859 Read more

Amy Gorman signed Ethan's Guestbook.

My friend Amazing Amy ~  I am sorry I have not reached out in a while,  I am so sorry what your going through with Sierra.  I can relate..what I can't  imagine is the ... Read more

Kathy Brockman signed Ethan's Guestbook.

I've not lost a child, so I can't say "I understand," but I do emphasize with you.  Sorry to hear about the issues with Sierra.  Part of it, I'm sure, is typical ... Read more

Cyndi Van Volkingburgh signed Ethan's Guestbook.

Hi Amy:  Hard to hear of your times with Sierra.  I know it's difficult through some periods, I have 2 girls ages 21 & 18 so we just got through that and it's not ... Read more

Ruth Warner signed Ethan's Guestbook.

The "Normal Life" is right on!!!  Know I continue to pray for you and Sierra as you learn to live this new normal.  I am sorry to hear Sierra is declaring her ... Read more

Jeanie Brau signed Ethan's Guestbook.

Oh Amy, my heart hurts for you.  I am so sorry that you are going through this with Sierra, especially at this time of year.  I think of you often though I don't always ... Read more

Monna Dami signed Ethan's Guestbook.

I pray for peace for you. Wish I had words to comfort you. I have followed your site for a long time. You have amazed me with your strength. Ethan was such an awesome boy. ... Read more

Cyndi Van Volkingburgh signed Ethan's Guestbook.

I know what's coming and want you to know before I see your post that I am thinking of you and Sierra and Ethan.  Will never forget you all.  God bless. Read more

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