Tuesday, June 08, 2010

Cards for a {Heartfelt} Cause

As I was searching for a challenge today, I visited my friend Kristen's blog, Scrap-Creations and read her post about her cousin's son and another young girl who have had devestating circumstances and would really love some HAPPY MAIL in the form of cards to cheer them up! She gave permission to post their stories on our blogs, so here goes. Please read and then consider sending a card or two!

"Ethan is my cousin's son. He is 8 years old . Ethan was diagnosed with Neuroblasto​ma 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 Neuroblasto​ma. Instead, trial studies and experimental​l therapies were in our future.

Etha​n underwent 6 rounds of extremely high dose chemotherap​y, 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​l 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 neuroblasto​ma 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).

UP​DATE:
In November 2007, a lump was found on Ethan's left shoulder blade... lat​er to be diagnosed as osteochondr​oma, a benign tumor growth in the bone. This is in part, a side effect of having Total Body Irritation 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 Neuroblasto​ma. MIBG uptakes were discovered in one shoulder, his leg, his spine and chest... alo​ng with in his bone marrow. There were a total of 12 spots at re-diagnosi​sEthan 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 o​ne round of maintenance chemo before becoming the first patient in a New England hospital to receive 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​y, 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. Fro​m there, Ethan began a treatment using Temodar and Thalidomide​, which consists of taking pills at home... ever​yday. Also, at this point, I added Harmazone, a form of"Essiac" to Ethan's daily routine.

La​ter, I added the use of a DHA supplement.​ Thus far, the DHA has proven to rid Ethan of his mood swings and temper tantrums.Af​ter 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 cyclophosph​omide, with Avastin and Zometa. This treatment is primarily used for bone metastesis.​ Unfortunate​ly Ethan's LFT's remained too elevated to remain on protocol. Sc​ans 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 Personalize​d Medicine Study in Vermont.

Well, today we received devastating news. The Brain tumor has more than doubled in size and is now causing focal seizures. They will do radiation for comfort only at this point. Things are not looking good for Ethan and he is in need of prayers and whatever happiness we could give him. Ethan & his sister sierra love to receive cards. If you could find the time to mail them a card, I am sure it would bring a smile to their face. Particularly Ethan, as he is in Boston Children's Hospital continuing with radiation. If you would like to mail them a card you may do so to:

Ethan Smith and Sierra Smith
27 Donna Street
Nashua, NH 03060

If you would like more info and would like to stay up to date with Ethan you can visit is journal here: http://www.caringbridge.org/visit/ethansmith


Meet Bella TuckerBella Tucker is an 8-year-old girl who attends South School Elementary in Londonderry, New Hampshire and is a member of the Phantom Gymnastics team.

Bella came down with a near fatal infection on Easter Sunday. Doctors gave little hope for this third graders’ survival, but after five days in a coma she miraculously survived Streptococcus Pneumonia Sepsis with DIC (disseminated intravascular coagulation). Unfortunately, her survival from this infection was not without significant cost.

The infection caused extensive tissue damage, and on April 27, 2010, Bella underwent quadruple amputation surgery and is currently facing an extremely long and hard recovery at Children’s Hospital in Boston with extensive rehabilitation to follow, as she learns to live life without her limbs.

Fortunately, Bella has the love and support of her three older brothers and younger sister during these trying times. The family is suddenly faced with significant challenges, many of which can be eased with financial help. For example, their home in Londonderry, New Hampshire will need extensive modifications to accommodate a wheelchair. Bella's mother, who is also her primary insurance holder, must be by her side during the extensive rehabilitation process and therefore she will be unable to work, causing the family to lose significant income.

Since her mother will be with her during this process, the family needs funds for daycare of their other children. Lastly, she will be faced with medical challenges for the rest of her life. Bella loves receiving cards and they would be sure to make her smile. I am currently awaiting her address, but you may mail her cards to my address until further notice.

Kristen Catalano
c/o Bella tucker
5 Baymeadow Dr
Nashua, NH 03063


You may visit Bella's webpage at : http://www.bellatucker.org/

I know we all have some cards sitting around, it would mean so much if you could get one out to Ethan and Bella. They need all the smiles they can get right now!" -Kristen

BTW... Kristen wants so much for us all to send cards that if you post this on your own blog and leave her a comment on her post HERE, you will be entered to win her blog candy. Awww, that's sweet Kristen, although I'm sure that everyone will be more than happy to send cards to these kids just for the joy of doing the smallest gesture to put a smile on these kids' faces.

7 comments:

Candace said...

Awww...yup, definitely was thinking I would send some cards even before I read about the blog candy! I will see what I have, and if I don't have any, I will make some! :)

Grace said...

Oh Kristine... thanks for posting these card needs! Just brought tears to my eyes to read their stories! What struggles and what courage!!! I'll be praying first and foremost, as I know a God who loves, cares and hears!!! I'll try to get a couple cards off too... just heart wrenching stories! TFS!
Hugs,
Grace

Mickie said...

As I was reading these stories I had to stop and thank God. Although my children sometimes step on my heart at least they are healthy and have a good life. May God bless and keep these children, He has a plan that we don't understand and His will will be done.
God Bless and I will send each a card.

Crystal said...

Oh my Kristine thanks so much for posting this, I must of missed this somehow on Kristen's Blog. Both of these stories are so heartbreaking, I will sure send off some cards to these two special children...and I will def. say many many prayers.

Kathy Winter said...

Aww so sad and heartbreaking. I will pray for each of these kids and send some cards for sure. Thanks for sharing Kris.

Helen said...

Thank you for posting this. Prayers are being said for these kids & their families and cards are being made for them.
Blessings!
~H

ileana said...

Thanks Kristine for sharing these two touching stories. I´ll pray for them and their families and send them something too.