HAPPY BIRTHDAY!!

Kody had a blast yesterday and even smiled for a picture

Guest Post by Heather Von St James .... My Triumph over cancer and the village that helped ....

This woman had such an inspirational story I could not help but post when she asked to guest post on Kody's blog ...... feel free to comment below


The first-year birthday party of my daughter Lily was no ordinary celebration. The occasion marked some important milestones that drew family and friends from all over the country. Not only had I survived to join the celebration, but also I had nearly finished my chemotherapy and radiation treatments. On November 21st, 2005, I thought my world had ended. I was diagnosed with malignant pleural mesothelioma. The frightening news was so much worse because my infant daughter, Lily, was only three and-a-half months old at the time.



One of my greatest fears had come true: I had a deadly form of cancer, and it was highly unlikely I would live to see my daughter’s first birthday. The news was devastating for so many reasons. I experienced all the classic anger and anguish, wondering why I had to face the problem when my child was only an infant. If you ever wonder how such a diagnosis might affect you, believe me it can be an eye-opening experience. Lily was my only child, and I feared I would never see her walk, speak her first word, or start school.



Somehow I found the strength to face the problem, with help from friends, family, and my doctor. I was referred to one of the world’s top mesothelioma specialists—Dr. David Sugarbaker—who practiced in Boston at the famous Brigham and Women’s Hospital. The upbeat doctor gave me cause for renewed hope, despite the grim statistics that face mesothelioma patients. Only two percent of patients diagnosed with the virulent cancer survive more than five years.



The doctor helped me face the battle for my life with renewed hope that I could beat the odds and become one of the two percent of people who survived. Two out a hundred make poor betting odds, but I had an ace in the hole—my daughter Lily. I faced the surgery in Boston 1900 miles from home, and my parents remained behind to care for Lily. I had my left lung and surrounding lining removed entirely while my baby girl turned six months old.



The next months required extensive chemotherapy and radiation treatments, but I also had to raise Lily so she could get to know her mother. I refused to let my illness compromise how I raised Lily, because it was equally important for me to enjoy my daughter’s childhood while I still could. I was very sick that entire year, but I was able to maintain a normal relationship with some help from friends and family members.



Lily’s first birthday drew all our friends and family to celebrate her birth and the upcoming completion of my treatments. The party will forever be one of my fondest memories. I finally finished the last radiation treatment only one month short of the one-year anniversary of the cancer diagnosis. I vowed to work hard to remain free of cancer for Lily and my family.



I have learned many things from that frightening year and all the years since. The cancer has changed my outlook on life, making me appreciate the little things that most people take for granted. Life’s ups and downs make life worth living, and time is too short to take anything for granted.



Fellow patients I have met on my journey inspire me to raise public awareness of the deadly condition. The disease afflicts real people and families, and it is not just some television movie of the week. I have watched friends fight and lose their battle, and I will never forget the courage and tenacity of these mesothelioma warriors. I share the joy of each survivor, but I still find myself amazed at the sheer willpower each survivor draws upon to fight the disease.



I continue to try to live my life to the fullest extent possible, enjoying every extra moment I have been granted. Like everyone, I have bad days, but I try to find something to brighten each day, because things could always be much worse. Appreciating life itself is the most important gift of all, at least to me.

Want to check in on our lovely lady?  This is her blog www.mesothelioma.com/blog/authors/heather

Two Weeks Until Kody Turns 16!!

There was a time when I thought our son would not live to see his 16th birthday .... well here we are two weeks shy of it and he is seemingly stablized.  He is looking forward to camp in June which gives him time away from the securities of home and time with his peers.  His halter monitor showed what they expected .. it was not normal but it was not critically abnormal.  We are not doing the spinal fusion surgery but will be making an appointment with the Pulmonologist for this summer to get an evaluation of his lung capacity. 

He is doing great in school and his homebound teachers love him.  He has asked about going to an online academy which I will look into over the summer.  This would have him doing school completely online and he could turn in all work online as well.  He has talked about maybe taking online classes when he is done to be an online reading/english teacher when he is done with high school.  This was after he said his disability wouldn't make him able to be able to do classroom teaching or teleclass because his speech is so affected.  Time will tell though how things go and if he changes his mind.  We all know how teenagers are ...

((HUGS)) to our readers

02/24/2012 Cardiology Appointment Update

Yesterdays appointment went as well as to be expected.  He has had some change to his heart but nothing significantly different then from the appointment 6 months ago.  Dr. McKenna and I spoke about the orthopedic doctor's advice  to have the spinal fusion surgery.  The surgery would hold more risks and the mortality rate is higher he said the surgery is a possibility.  It would require the best of the best to handle every single detail.  I sat back and acknowledged I was listening to the information but politely declined the surgery.  The thought being that I not only want to respect Kody's opinion but also we, the doctor and I, understand it is quality over quantity. 

With that being said this appointment was not as I expected it and it was a good thing. 

((HUGS)) to our readers

Another Appointment @ SJH

In a little while we are headed off to St Joseph's in Tampa for a visit with the cardiologist, Dr. McKenna.  This is his six month check up which means he is getting an echocardiogram as well as an EKG.  I will be bringing along the xrays from the orthopedic appointment because McKenna is who wanted him seen by the doctor.  Also, I am going to mention the episodes to him just to get his input about things.  The xray will give him a outter visual though his interal visual will be more telling of the condition of his heart at this point.  Usually I am nervous and stressed about this particular appointment but I am taking a new appraoch and just handling things as they come.

I will update later on about how things went.

((HUGS)) to my readers.

Cardiology in The AM

Tomorrow morning is Kody's appointment with Dr.  McKenna .  It has been 6 months since visit so he will get an echocardiogram and EKG done.  This will give us all a better understanding of Kody's heart status.  I will bring up the couple of 'episodes' that he has had as well as bring along the xray he had done.  Updates will follow the appointment. 
((HUGS)) to our readers

This Morning ... Whew Thanks Kody

This morning was a bit of a hold your breath moment.  Kody got up for class and was fine.  He excused himself from class to go use the restroom and he seemed to be taking a little longer than normal to finish his business.  I, being the mom I am, walked into the bathroom with the "What are you doing?  Planning to skip class in the bathroom?" ... well he was crying.  It seems he started feeling ill.  He was breathing heavily and said his chest felt heavy and that he did not know why.  I grabbed the blood pressure machine to check that and it was 175/90 and his pulse rate was 145bpm.  This was clearly another episode like he has had in the past.

Thankfully it passed after about 20 minutes and he laid down watching netflicks for a while.  There goes another 10 years off my lifeline.