Tuesday, February 17, 2009

Calling for your help!

My previous post introduced Katie and now I need to introduce Katie's friend, Samantha.

Katie had a treatment buddy named Samantha. Katie and Samantha became friends through treatment but enjoyed tea parties and playdates with one another. Samantha has the same tumors that Katie had.

Here are the girls enjoying a playdate together
L to R - Gigi (Katie's younger sister), Katie, Kristy and Samantha

Samantha's father gave us a brief history of Sammie's battle with her disease.

Sammie was first diagnosed at six months old with a very aggressive Ependymoma, a very rare and deadly form of brain tumor. To her and our great fortune, and to the utter astonishment of her Nuerosurgery team, they achieved a full resection of the massive tumor when they operated.

As a precaution, surgery was followed up with six months of a very dangerous form of High-Dose Chemotherapy, which she completed successfully. It left her with profound hearing loss. She spent the next two years rehabilitating. She learned to walk, developed gross and fine motor skills far beyond the doctors predictions of her ability to recover, regained her ability to swallow, etc...

Ependymoma tumors have a "non-existent beyond five year" survival rate among children afflicted, especially when diagnosed before one year old. In all known cases the tumor returns within 9 months to three years after total resection had been achieved in surgery. Therefore, it was thought that if she survived three years past her last dose of the chemotherapy, she may have a realistic chance to survive long term. Tragedy struck again when the tumor returned on the last MRI she had to have to achieve that three year milestone.

She immediately had surgery in Jan. '06 just a few days after it was found. The surgeon was able to only remove about 70%, as it was growing like a mushroom right out her her brain stem this time instead of along side of it. She was given chemo again for one month as a precursor to proton radiation therapy.

Radiation is the most preferred treatment for brain tumors; chemotherapy has a difficult time penetrating the blood/brain barrier. The first go-around she was determined to be too young to radiate.

She received 10 weeks of daily radiation treatments at Boston General Hospital, who's facility is a world leader for this type of treatment. Upon completion we returned home on the first of June '06. That summer was spent monitoring the tumor with a variety of imaging machines. In Sept. '06 the tumor once again spread tremendously and her Nuero/Oncology team made the very difficult decision to release her to Hospice care and told us to prepare for the end.

Our only option for treatment was in the investigative drug therapy realm. We were given two chemo studies that she qualified for. Neither were chosen because of the devastating physical effects that she would suffer along with the very high risk that they could cause death and held very little hope of success.

A third option was for her to participate in a dosage determining phase of a new type of ERBII inhibitor designed to block the proteins that feed tumor cells. This drug had limited temporary positive results in lab mice which qualified it for human trials. It came from new medical theory from Genome studies. The doctors said that, at best, it would be a way for her to contribute to the dosage tolerance determination the studies phase was in, and there were no known side effects. We agreed to try it, but were cautioned not to expect any positive effects. They said it was just a shot in the dark because no-one as yet in the two years of trials had shown a benefit.

Within 60 days, her tumor had miraculously shrunk in half. After another sixty days it reduced again by half. It has remained stable for over one year now at this size. We have hope that it continues to keep the tumor in check. As always, our faith in God and the continued prayers from so many keep us aloft.

Thank you all so much for honoring Samantha with your efforts. We pray that your good work helps others in many ways, great and small. It is the earthly manifestation of good that God promises to bring from suffering.

As Samantha continues her treatment she has recently had some complications and has struggled to stay in a particular study. For those of you unfamiliar with cancer treatment, when all approved treatments are not working you may qualify for experimental treatments but because you are part of a "study" you have to fit a particular slot based on many factors - age, diagnosis, previous treatments, current tumor stage and the list can go on and on. Samantha has just recently developed a lung infection that threatened her chances of continuing treatment but she was able to continue in the study.

Samantha's mother is working full-time to support the family as well as trying to take care of 5 children, her father is trying to start a business and has had some set-backs recently so the family is just struggling recently.

Samantha and her family could really use some love notes with words of hope, faith, love, and inspiration. Please take a few minutes and pick a person from your family to write a note, share your testimony, a story that might be uplifting, an encouraging poem, the lyrics to an inspirational song, your favorite uplifting scripture, ANYTHING to help Samantha and her family through this difficult time. They continue to fight, but some days are harder than others.

I'm calling on my friends and family for some "Chicken Soup For Samantha & Family's Soul." Please email your contribution to dicia@hotmail.com

1 comment:

The Crash Test Dummy said...

What a great idea! I will spread the word on my diary and on the Magic Quilt site. And I will send an email too.

Mahalo for always lending a hand!