Tuesday, June 8, 2010
Send them love please....
The worst of the worst…a deadly form of cancer where there is no specific treatment meant just for Neuroblastoma. Instead, trial studies and experimentall 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 experimentall 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 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 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 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 chemotherapyy, 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.
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
Bella 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.
c/o Bella tucker
5 Baymeadow Dr
Nashua, NH 03063
*Content from Kristen's blog*
Right before X'mas last year, I was thinking to send some cards for sick children. Then things got chaotic and I gave myself an exscue saying I would do it next year. This time, I am not just saying it... I will be making theses two sweet peas a card TONIGHT. I am taking my words to actions. If you have a free moment, please send them some love.
Have a good mid-week. :)
With love xoxoxo by Noreen Yun