April 30, 2012

 May commences National Brain Tumor Awareness Month!  Here are a some pediatric tumor facts:

• Brain tumors are the deadliest form of childhood cancer and the #1 cancer-related cause of death for children 20 years of age and younger they can be malignant or benign, but in either case life-threatening.
• Brain tumors can occur at any age, but are most common among children ages 3 to 12, and adults ages 40 to 70.
• There are 130 different types of brain tumors, making diagnosis and treatment very difficult.
• Pediatric brain tumors aren’t like those in adults and thus require different treatments.
• Even though survival rates for some pediatric brain tumors have increased over the years, survivors often suffer from lifelong side effects of treatments, including physical, emotional and learning challenges that will limit the quality of their lives all the way into their adult years.
• Research that focuses specifically on pediatric brain tumors is crucial to saving the lives of these children.
• The funding for pediatric cancer trials has declined every year for the past eight years.
• At this time, brain cancer research is underfunded on a national level and the public remains unaware of the magnitude of this disease, largely because brain cancer in children is one of the most difficult cancers to treat and because it is relatively rare when compared to other cancers.
• The cure rate for most brain cancers is significantly lower than that for many other types of cancer.
• 1 child out of 5 who is diagnosed with cancer dies; only 33% of all patients diagnosed with brain cancer will survive five years.
• Only two new brain tumor treatments have been approved in the past 25 years.

Our Hero!
Kassidy's plaque from www.wallofcourage.com

I can't believe that it's May already!  This month will be a year since Kassidy's diagnosis on May 19th; the date is practically around the corner.  Time has flown by!!!  Last year, May was just another month full of kids activities, sports, and just everyday life events.  How everything changed in a blink of an eye.  I can't tell you that we knew anything about childhood brain tumors except for watching the St. Jude commercials with the heart wrenching bald babies asking for donations. Funny, how we become aware really quick when someone close to us is affected by a disease.  We never think it's gonna happen to us.  I almost feel that we were living inside a bubble, completely unaware of the realities of life itself.  I would almost say a selfish way of living.

This past year has definitely not been easy, but we have learned valuable lessons that sometimes take a lifetime to grasp.  We have grown as individuals and definitely become a closer family.  We have also found that friends and family are extremely important, that their support is vital to dealing with the ups and down of cancer.  We are so thankful for all of you!  More than you know.

I know that all of you know, we have decided that a pet scan is necessary to see where we stand in Kassidy's tumor progression or regression.  We will be traveling to Houston on May 20th to get a pet scan and afterwards meet with Dr. Burzynski, Dr. Marquis, & Dr. Acelar to go over the results of the pet scan. The pet scan will show if Kassidy has stopped responding to the ANP treatment or if it's killing the cancer cells and just leaving scar tissue behind that we cannot see on an MRI. We will also discuss at that time if we need a plan B or if we just continue treatment. SIGH!!!!!  The thought of all this terrifies us.

We are currently still struggling a bit on the weaning of the decadron, we are only at 1/2 mg in the morning and 1/4 mg at night, but when we lower it even 1/4 mg she has bouts of nausea and vomiting a couple days after.  We have been trying to lower the dose during the weekends so she doesn't have to suffer through the side effects of the weaning while at school.  Even though, she has experienced some effects during school time last week.  She tries to stick it out and takes her zofran (nausea medicine) and most of the time just finishes the day.  We are so thankful she only has 2 classes per day especially days like that.

Kassidy enjoyed playing with baby Thiago last weekend!

Also, it's been great that her local doctor here is now prescribing IV fluids every week so I can administer those during the weekends and replenish her electrolytes, potassium, and calcium here at home.  She feels so much better after them.  We are learning what Kassidy's body needs to withstand treatment.  Her labs every week have stabilized for the most part and happy to report that her hemoglobin keep coming up every week, something we struggled with quite a bit, a couple months ago when she almost needed transfusions.  We have learned the vitamin supplements she needs, that cloro oxygen drops have brought up her hemoglobin numbers, natural anti-inflammatories helped with lowering her decadron dosages, elimination of milk has helped with her allergies, and most of all her diet.  So amazing how the body works!!!  You have to give it the tools to help fight!!!

All in all everyday is struggle, but she's pretty positive most days. There are days when she gets tired of it all and just wants her life back which we don't blame her.  She gets tired of all the pills, sleepless nights, backpack carrying, not being able to play the sports she loves and do the things she used to.

I think sometimes things are put into perspective of how lucky she is and that everyday is precious.  Last Friday, we got the news that Jaxson Piro, the Las Vegas boy fighting a brain tumor whose walk we participated in March passed away. He won his battle against brain cancer and earned his wings.  Jaxson was only 11 years old!  Our hearts broke for the parents of this boy, Meghan and Steve.  I could not imagine the pain they are feeling.  How does a parent ever get over loosing their child?  I don't want to think about it.  I do know that Jaxson is now free of pain and suffering and that he will look over his family as a guardian angel.

RIP Jaxson Piro!