Hello everyone and thank you for visiting

Hello everyone and thank you for visiting.

As many of you might already know I was diagnosed with leukemia (Chronic Myelogenous Leukemia-Philidelphia positive) August 2, 2010.  I never thought I would ever be sick.  I never smoked, never did drugs, never did anything wrong.  I ran, cycled, even have done a few triathlons and 24 hour endurance races.  I love mountain biking, and was very active.

I was blindsided when my doctor told me I had leukemia.  I cried all the way home. Why me?   My wife was 2 months pregnant.  We hadn’t even told anybody about her pregnancy. What were we going to do?

After speaking to my physicians we decided to take a new drug out.  It had shown great promises in controlling CML.  The drug Sprycel worked really well. It had shown greater efficacy then Gleevac or Tasigna.  This drug was 200 times stronger.  So I was prescribed it.

This was amazing.  I could take this one little pill.  It would not cure me, but would control the cancer and allow me to continue (an almost) normal life.  I could still go running, still go mountain biking.  It was great.  Definitely a better alternative then chemo.  Best of all, I could continue to work and provide for my family.

Then the first obstacle.  Sprycel cost $315 a pill.  I needed to take one pill a day.  Thank goodness for insurance.  All the money I had paid over the years for my health insurance premiums and never used , I would finally get some restitution with the insurance companies.  NO,  DID NOT HAPPEN THAT WAY.  Insurance companies have loop holes in their plans.  Sprycel was considered a specialty drug, therefore my insurance company only paid 80%.  That left us with an out of pocket monthly payment of $1890.  Not to mention all the tests: Bone marrow biopsy, CT, blood work.  We ran up almost $10,000 in debt the first three months, and I had the good insurance (I thought).

In the months that followed, we found some charitable organizations to help out.  Patient Services Inc. paid for the Sprycel medication.  I changed my insurance plan.  Apparently the higher deductible plans paid out better then the $0 deductible plan I had.  Then we hit our “total out of pocket” amount on my new insurance.  Our financial situation improved, since we met the “total out of pocket” amount for my insurance everything was free.  I still had to pay my monthly premiums, but everything else was covered at 100%.  I still had to pay for my regular prescriptions, but they only ran about $200/month.  My medical insurance plan started over May 1, 2011.  We met the total out of pocket on it the first week.

Then it happen.  The Sprycel stopped working and my leukemia went into “blast phase.”  Blast phase is when the cancer wins.  It has taken full control of your body.  It’s going to do what ever it wants to do.  It’s going to kill you.  I found this out on May 27; Friday before Memorial Day.  I told the doctors I needed the weekend.  We had my Grandfather’s 90 B-day party.  I couldn’t miss it.  Reluctantly the doctors agreed to let me go.  Tuesday May 31, 2011 I started chemotherapy.

My summer vacation went well.  I spent 10 out of 12 weeks in the hospital.  Bone Marrow biopsy in September 2011 showed I had gone into remission, and I could proceed for a Bone Marrow Transplant.  I had my Allogeneic stem cell stem cell transplant (Bone marrow) on October 14, 2011.

Since facing this battle, we have created the T3 Foundation.  T3 is named after our three sons; Tyler, Trenton, and Tucker.  The T3 Foundation was established to financially assist those who are battling leukemia.  Cancer is physically, emotionally, and mentally devastating.  We are hoping to pass on our learning experiences and support to those who are now struggling the way we did.  It is not an experience to bare alone.  Cancer does not discriminate and anyone can be a victim.  Help us, help those in need.

 

Paul Gililland

 

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