Tuesday, October 19, 2010

Prayer Request....Please read me!

This is not a easy post for me to write, as you can imagine. A while back, I posted a card drive for my Cousins son Ethan, and I have to say, it turned out amazing!!!! Thank you to each and everyone one of you that sent cards and special items. If you are not familiar with Ethan, let me tell you a little about him. He is 8 years old and is absolutely the strongest little boy I have every met. He has been fightening Neuroblastoma (Cancer) for the last 5 years. Every time he has been down, he fought like a champ and bounced back up. I can't even begin to tell you all that Ethan and his family have been through. No one should ever have to experience the things that they have been through, never mind a little boy! To top it all off, Amy (Ethan's mom), is a single mom to Ethan and Sierra (Ethan's big sister, whom is 11). Here is Ethan's full story (from his caringbridge page:

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.

I am so very sad to say that Ethan and his family are going through a extremely rough time right now, and they need your prayers more than ever!!!! Ethan and his mom have been traveling between New Hampshire and Vermont (a pretty long drive), for treatment, and things seemed to be steady until last week when Ethan was rushed to Childrens Hospital in Boston with a very serious GI (stomach/intestines) bleed. He was admitted to ICU for 3 days and then seemed to recover (he is amazing :), and just when things seemed to settle down, he presented with a possible seizure or TIA (mini stroke). As of today, it appears that Ethan had a TIA, and once again is in the ICU. You see, no Mom, sister (11years old), or little boy should EVER have to fight this fight. Amy (Ethan's mom), has been by Ethan's side 24/7, and as one would expect, has been a wreck with nerves. In the mean while, sister Sierra is trying to attend school, while worrying about her brother.....

You see, Prayers a desperately needed, as we have no idea what is next for Ethan and his family. Ethan has always seemed to bounce back when wee never thought he would, and I believe it has always been prayers that helped him through! So, it is with this e-mail, that I am asking you to please keep Ethan, Amy, and Sierra in your prayers. They need them now more than ever.....and, if you have a card or two, Ethan and Sierra LOVE to receive mail. I know that a card a day can bring a smile, and a minute or two of happiness to anyone, So, if you have any extra cards hanging around and would like to write them a note, they can be mailed to:

Ethan, Amy, and Sierra Smith
27 Donna Street
Nashua, NH 03060
If you would like to know more about Ethan, you can visit his Caring Bridge page here. Thank you for taking the time to read my post. I hope you have a great day!


Michelle Quinno said...

Kristen, it breaks my heart that they've been through so much. I can't even imagine going through all that. I will definitely keep them in my prayers, as they have been for a while.

Peggy said...

Kristen, I can't even imagine what they have and continue to go through. It is so sad that a child needs to go through this. They all will be in my prayers.

Peri said...

My heart goes out to Ethan, his mum and his sister and to all his family. I will keep them all in my heart.
Peri xx

Snowmanlover said...

oh Kristen, I have not stopped thinking about them today. I got Ethan a ton of fun things. I heard from Amy and she said that things seem to be better today, thank goodness. I am going to make him and Sierra a bunch of cards tonight. I have this on my blog, my facebook and also my message boards so I hope a ton of cards come through. Do you mind if I copy and paste what you have on here and I can put it on my blog again????

Cindy Gay said...

So sorry. He's a precious boy. Good thoughts are with you.

Marlene said...

My thoughts and prayers are definitely with Ethan and his family.

Snowmanlover said...

Oh Kristen, Amy's email earlier made it sound like everything was ok but I just read tonights Caring Bridge page and things are even worse it seems. Poor little guy. I just don't know how he endures it. I am so sorry for your entire family. I am urging others to send the kids cards right away. I will be on pins and needles until Amy posts again.

owlbeescrappin said...

This just breaks my heart! I wish I could take all his pain away. I will keep everyone in my prayers. So sorry for you and your family.

Helen said...

I'm sorry the family is going through this. I'll keep them all in my prayers. I have a little boy prayer card that I've been saving and this seems like the perfect time to use it. Thank you for sharing this with us and allowing us to pray and participate in sending cards to the family.

D said...

I'm so sorry. My prayers go out to your family.

Lana Clarke said...

Oh my goodness this poor little boy! Your family will be kept in my thoughts and prayers.
God Bless
Lana x

VoicesWithin said...

Oh My, What a Fight this Strong young Man is Putting up! I'm so Sorry to hear that Your Family is Going through such a Hard time. I will be sending Positive energy and Thoughts their Way!