LOVE LOVE LOVE this video...such a powerful message if you watch it all the way thru.
Welcome to Brianna's Web Site! I created it to keep family and friends updated on Brianna during her treatment for leukemia. On New Year's Eve 1998, Brianna was diagnosed with Acute Lymphocytic Leukemia (pre-b cell) when she was 6 years old. She received 2 1/2 years of combination chemotheraphy (POG 9605 protocol) and completed her treatments in July of 2001. She is now 16 years old, in remission and doing very well. She is followed at the KNOT clinic (Kids Now Off Therapy) where her Oncologist tracks her progress as an official long term survivor. This includes appointments (now only once a year!) for a complete physical, blood work and addressing any therapy related issues that may arise.
CHILDHOOD CANCER FACTS
September is Childhood Cancer Awareness Month. The Gold Ribbon has become the unifying symbol ~ The precious nature of all children and the golden flame of hope that burns brightly for childhood cancer patients, survivors, families and loved ones.
~ Cancer is the number one disease killer of children. More children die of cancer than AIDS, asthma, diabetes, cystic fibrosis, and congenital anomalies COMBINED.
~ Currently, one in every 330 children is diagnosed with cancer before their 20th birthday. On average, that is 46 children, or two classrooms of children every weekday in the USA who are diagnosed with cancer! On average, 1 in every 4 elementary schools have a child who is being treated for cancer. The average high school has 2 students who are current or former cancer patients.
~ In the USA, childhood cancer as a group is the 6th most common type of cancer. Currently more than 1 in every 900 persons between 20-45 years of age is a survivor of childhood cancer.
~ Unlike many adult cancers, the cause of the majority of childhood cancers are unknown and cannot be prevented by a lifestyle change (smoking, diet etc)
~ Because lengthy treatments interupt normal growth of children, long term side effects may include but are not limited to: learning disabilities, impaired endocrine systems, growth difficulties, fertility issues, cardiovascular disorders, dental abnormalties, bone damage, and even secondary cancers from the chemotherapy that initially cured them. It is not uncommon for patients, siblings and caretakers to have symptoms of depression or Post Tramatic Stress long after diagnosis or treatment.
~ Historically, the investment in childhood cancer research has paid dividends in understanding the basic biology of cancer, provided the principles of therapy and continued advances in treatment for adult cancers and other diseases. The first evidence that chemotherapy could be a curative of human cancer resulted from a clinical trial in children.
"YOU'RE BRAVER THAN YOU BELIEVE, STRONGER THAN YOU SEEM AND SMARTER THAN YOU THINK." - Christopher Robin
Journal
Thursday, January 15, 2009
My heart is breaking. Please pray for the families of Andrew- who is on his way to Boston to hopefully find some answers on how to heal him and Zack. http://www.caringbridge.org/fl/zacharyfinestone/
Each year this time brings reflections of the past. And so many memories, of good times, of hard times, and of people the world lost way to soon. This past New Years Eve marked 10 years since Brianna was diagnosed. 10 YEARS! I wish I could say it seemed like a lifetime ago but sometimes I feel like it was just yesturday. There are days that it doesn't take much to bring me right back to that day...the appt at the pediatrician's office, multiple attempts of taking blood from a screaming 6 yr old, the long afternoon of waiting for the bloodwork results that were put on a rush, the phone call from Upstate telling me that she needed to be admitted right away and the confirmation that she indeed had leukemia. Someone's blog was talking about picking a year of your life that was most significant, or when everything changed...etc.. etc.. 1999 was our year. It was the year that cancer entered our lives, the end of our ignorance...it was no longer that awful disease that others had to deal with. It introduded into our lives and it was here to stay in one form or another. We were officially admitted to 7H around 11 pm on New Years Eve and I remember trying so hard not to freak out, to be positive and calm for her. As the sun began to rise on 1/1/1999 and she finally drifted off to sleep, me and mom cried softly, petrified of what lay ahead.
That fear is still here 10 years later. It some ways it is a very different fear, but in other ways it is exactly the same. Brianna has been off treatment 7 1/2 years, in remission and is considered a long term survivor but the fear is still there, always lurking in the background, the ominous nightmare waiting to jump out again. Realistically there is absolutely no reason to ever think that Brianna will relapse. Her doctor has confirmed that. She has her next appt is in a few weeks for follow up. I don't anticipate any issues however I am sure the emotions will flood. After the medical appt is scheduled an appt with the education specialist to go thru the late effects stuff. Well our ed specialist, Nan Songer recently passed away from cancer. It just breaks my heart that one more person we know that has stood by our side in this battle has been taken to early by this disease. She was an absoluetly wonderful woman! My dad fights on after 3 relapses of his CLL...it will be ten years since he was diagnosed this May 2009. He goes for scans and a bone marrow biiopsy in Boston in a few weeks to see what effects his last treatment had. Aunt Margie has now joined the 'cancer sucks club' fighting an aggressive form of breast cancer. Boopa's (my grandfather) prostate cancer has been acting up again too. I long to be ignorant again. When I was fundraising I wanted to shake people and scream, "wake up, this could happen to you!" But secretely (or maybe not so much since I am putting this on an internet blog) I am now envious of their ignorance, those who have never had to deal with this monsterous intruder. I am so sick of cancer invading our lives. It sickens me how many people I know whose lives have been ripped apart in so many ways, and how many children have lost their lives to early, or will grow up without their parents because of this beast. I sometimes find myself not wanting to read others sites or hang out with people cause I just can't bare to hear anymore bad news. And it makes me so angry that I feel like that, and that after 10 long years all it takes is a small reminder to bring us right back to diagnosis and treatment.
This New Years eve I was in the store and got a phone call that Boopa was being transferred to the ER because he was ill. It brought me right back to B's diagnosis. I ended up leaving my cart in the store. I wanted to go up and see him but didn't think I would be able to make it thru the doors. It was so much effort to calm myself down. This past fall she had to have a MRI of her shoulder for the swimming injury. The dr injected dye so he could see it better and when he started cleaning the area with the iodine, it brought me right back to all those days in the 5c treatment room. Brianna said after that the smell made her feel like she couldn't breathe and wanted to throw up. I could totally relate as I was literally being held up by the wall behind me that I was leaning on. This past fall she was having lots of headaches and exhaustion and I felt like I was having arguments in my head between the paranoid me and the logical me... whether it was her just getting used to a crazy schedule or something more. Turns out she had mono. Imagine being greatful that your kid has mono? It is so hard sometimes to not let fears take over and assume the worst. Did I mention that I HATE cancer??? I seriously, obsessively HATE IT!!!!
I look back at what I have wrote and it sounds so angry, negative and pessimistic. It doesn't matter, it is true. I know I am not alone with these feelings...Amazingly enough cancer has brought some good things into our lives. Good people and friends whose paths we never would have crossed if it wasn't for this beast. Overall cancer still SUCKS though.
Overall things are ok, busy as usual. Brianna has been managing a difficult school year and was elected as one of the captains for her swim team next year. Our car remains undented (KNOCK ON WOOD!) as she practises driving. My sister said the heck with NY weather and packed up and moved to Florida. I can't wait to visit and trade the snow banks and windchill for palm trees and sandy beaches. Unfortunately it may be a while before I can swing it financially but it is something to look forward to.
Well not sure what else to say, or even if many people still read this...(hint hint, sign the guestbook!) Happy New Year friends....My wish for you is that 2009 is filled with good health, good times and great memories. ~Heather
"Where there is great love, there are always miracles. ~ Willa Cather "The world breaks everyone, and afterward, many are strong at the broken places." ~ Ernest Hemingway "It is often said that Celebrations and mournings go hand in hand - and that couldn't be more true." ~Author unknown
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