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Ethan’s 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).

UPDATE:

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.

Latest Journal Update

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 the past, I had Sierra there to keep me company and my mind occupied.  We'd spend the day together, doing things together and remembering Ethan together.  But as Ethan's 3rd anniversary rolled around, she is not speaking to me.  So, I felt more alone, more sad, more anger…and it surely made it more difficult.

It kills me…this sadness. I hate that she is so angry with me. In essence, she is all that I have. Don’t take that the wrong way either….I know I have family, friends and a great support network…but I mean, she is all that I have left that makes me a mother, she is all that I have to show my love for….and she hates me right now. 

I get it's the whole “teenage” thing.  And it's a long torturous road…I know that.  Been there and done that myself to my parents.  But for whatever reason, I can't handle it.  I need her to “get over it” and talk to me again.  These last couple weeks have been the hardest…and for the first time ever, she was not there to love me like a daughter should, despite me trying to love her like a mother should.

It just makes me feel more lost than I thought I was…as she has made me realize I’m more alone than I thought I was. 

I feel like I want to over react and yell and scream at her for doing this…but I won’t.  I have to respect that she is an individual with her own heart and her own mind and I can't control every little thing in her life.  All I can do is continue to love her and wait for her to come around.  But given the circumstances, this “waiting” is HARD! 

As try as I might to explain to her that we can't always get what we want in life…I find myself arguing  with what a shitty explanation that is!  In my mind, we need to “hurry” and “get over this”….just in case something happens!!! So who am I trying to convince here??? Her?...or myself???

It may be slightly twisted, but the way my mind see’s this:

If there anything we can take and learn from the death of her brother and her father, that could be used as a learning experience…it's that life is unfair, unpredictable and well…that we don’t always get what we want.  Let’s use Ethan for an example…I’m sure as heck he didn’t want to get cancer and spend most of his life in a hospital getting poked by needles, receiving medicines that made him throw up and loose his hair.  I’m also sure as heck he didn’t want to die.  But he didn’t get what he wanted.

I’ve also tried really hard to get what I wanted, like when I was trying to save Ethan's life by putting him on a bunch of natural medications that I researched, I purchased and I administered to him, on my own…without the authority of the doctor.  This is what I wanted…to save his life.  But in the end, I didn’t get what I wanted.

That is the way life is. You can't always get what you want. But on a positive note, we can learn that while life is hard and while  things we don’t want to happen, happen…there is life to be lived, while we’re alive. We can't waste days sulking in anger when we hear you can't get what you want.  There is not enough time in life to sulk. 

I mean, what if something was to happen to me?  It will one day…it's inevitable.  If there is one thing that everyone must do…it’s die.  It could be today, tomorrow, next week, next year or years from now. We don’t know this.  Sierra’s father certainly didn’t know when he went to bed that night that he would never wake up.  This is reality.  You just don’t know. 

I am trying my hardest to except and convince myself that this is just a “teenage” thing…and that I have to just grin and bear the attitude(s) until she is old enough to understand…

…but this scares the living shit out of me!  Waiting, that is.  I’m scared to death, fearing, what if something happens to me (or God forbid, her) in the meantime.  Because it could…we just don’t know.  And I don’t want us to be like this with each other when that day comes.  I want us to be the mother/daughter we were.  I want us to continue to love and support each other, as we had. 

If I die in a car wreck today…I want to know, when I leave the house and say what would be my final “good bye” that she loved me…not happy to see me leave.  That if I die in my sleep, that what would be my final “good night” was received with love…not perceived as routine. 

It’s so hard…having life experiences like ours to compare such events to…but it's true…and it makes everyday living…that much harder.  

…on a similar but note….

I read an awesome post the other day that described a new “normal” that a parent lives after the death of their child.  It was quite chilling…the truth of it all.  It’s so factual that I too, want to share; as outside what I said above, it describes me the rest of the days in the year…

"What Is Normal After Your Childs Death"

Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family's life.

Normal for me is trying to decide what to take to the cemetery for Birthdays, Christmas, Thanksgiving, Halloween, New Years, Valentine's Day, July 4th and Easter.

Normal is feeling like you know how to act and are more comfortable with a funeral than a wedding or birthday party...yet feeling a stab of pain in your heart when you smell the flowers and see the casket.

Normal is feeling like you can't sit another minute without getting up and screaming, because you just don't like to sit through anything.

Normal is not sleeping very well because a thousand what if's & why didn't's go through your head constantly.

Normal is reliving that day continuously through your eyes and mind, holding your head to make it go away.

Normal is having the TV on the minute I walk into the house to have noise, because the silence is deafening.

Normal is staring at every boy who looks like he is my baby's age. And then thinking of the age he would be now and not being able to imagine it. Then wondering why it is even important to imagine it, because it will never happen.

Normal is every happy event in my life always being backed up with sadness lurking close behind, because of the hole in my heart.

Normal is telling the story of Ethan's death as if it were an everyday, commonplace activity, and then seeing the horror in someone's eyes at how awful it sounds. And yet realizing it has become a part of my "normal".

Normal is each year coming up with the difficult task of how to honor your child's memory and his birthday and survive these days. And trying to find the balloon or flag that fit's the occasion. Happy Birthday? "Not really".

Normal is my heart warming and yet sinking at the sight of something special my baby loved. Thinking how he would love it, but how he is not here to enjoy it.

Normal is having some people afraid to mention Ethan.

Normal is making sure that others remember him.

Normal is after the funeral is over everyone else goes on with their lives, but I continue to grieve my loss of Ethan forever.

Normal is weeks, months, and years after the initial shock, the grieving gets worse, not better.

Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. NOTHING. Even if your child is in the remotest part of the earth away from you - it doesn't compare. Losing a parent is horrible, but having to bury your own child is unnatural.

Normal is taking pills, and trying not to cry all day, because I know my mental health depends on it.

Normal is disliking jokes about death or funerals, bodies being referred to as cadavers, when you know they were once someone's loved one.

Normal is being impatient with everything and everyone, but someone stricken with grief over the loss of your child.

Normal is sitting at the computer crying, sharing how you feel with chat buddies who have also lost a child.

Normal is a new friendship with another grieving mother, talking and crying together over our children and our new lives.

Normal is not listening to people make excuses for God. "God may have done this because..." I love God, I know that my baby is in heaven, but hearing people trying to think up excuses as to why children were taken from this earth is not appreciated and makes absolutely no sense to this grieving mother.

Normal is being too tired to care if you paid the bills, cleaned the house, did laundry or if there is any food.

Normal is wondering this time whether you are going to say you have two children or one, because you will never see this person again and it is not worth explaining that my baby is in heaven. And yet when you say you have one child to avoid that problem, you feel horrible as if you have betrayed Ethan.

Normal is asking God why He took your child's life instead of yours and asking if there even is a God.

Normal is knowing I will never get over this loss, in a day or a million years.

And last of all, Normal is hiding all the things that have become "normal" for you to feel, so that everyone around you will think that you are "normal".

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