About Me

Kathryn Bradley was born on 2/5/91 and given a Hawaiian name Kahiwalani meaning "Gift From Heaven" She has been a special gift from the day she was born.

Thursday, April 5, 2012

Nine Weeks 4-5-12

Nine Weeks 4-5-12

My day with the tax man.  Well I have been going to the same guy for 10 years or more.  He does a great job and finds every penny he can for me.  This year as I had to tell him about Kathryn.  I could tell it really broke him up inside.  He apologized for having to ask me questions about her and went on to apologize some more to say he will have to ask me again about her next year.  He didn’t want to seen insensitive.  I told him not to worry I certainly understand that this is just one of many things that need to be taken care of and I know I just have to deal with them as they come.  In doing our taxes we went through the usually and then it came to medical.  We had to discuss airfare to Houston, rental cars, hotel, food, and then out of pocket medical.  I thought he was going to pass out when I gave him the numbers.  He said out of packet?  What you had to pay after insurance.  Yes, that’s the number taken right off of the insurance statements.  Actually I passed a couple thousand to my flex plan so I wouldn’t lose those dollars.  As we are going over deductions he said well that’s it.  You’re at zero.  There is no more to deduct and you will get it all back.  Wow,  I couldn’t believe it.

Then we had to file Kathryn’s taxes.  I had already closed her checking and savings accounts that were attached to mine.  Would have been easier if I hadn’t closed them.  Oh well…  So this required some research and an extra form.  Can’t do this one electronic either so it will take twice as long.  That’s really no big deal.  Now it is all done for another year.  Yeah!

After finishing the taxes I mailed off my 5 lannies for the Wine Auction.  And found that Princess (Kathryn’s dog) had set off the car alarm.  There is an inside sensor and if there is any movement in the car the alarm goes off.  When I got to the car it was flashing and beeping.  I turned this inside sensor off.

After I arrived home I read an email about Texas wanting to close Burzynski’s clinic.  Our little friend Rowan who is on his treatment will surely die if they close.  She started her treatment about the same time as Kathryn.  Her tumor is inoperable and a deadly brain stem glioma.  This type of tumor grows fast.  Kathryn’s grew so fast while she was off treatment and in the hospital. I could see the changes the last three weeks as it crept into her brain stem.  One by one her functions slowly started to go.  This is exactly what would happen to Rowan (3 yrs old) if she lost the availability of this treatment.  Rowan has had no tumor growth since she has been on this treatment.  It was different for Kathryn because her body was already beat up by chemo and she had problems with her platelets and had to get transfusions and go off treatment and start all over.  When we were home it was the same thing.  This along with talking to the tax man and realizing this is all too real made for a very emotional day. 

I wrote to one of the congressmen and called a representative of Texas to express my concern about the attack on the Burzynski clinic.  It is all about money and greed.  His treatment is so inexpensive and drug companies will not profit form his treatment.  The drug companies have a great deal of pull.  Have you read about drugs that have been discontinued because they are not making huge profits on them but these same drugs were saving lives and people who will not have them any more will die.  It’s been in the news.  Kathryn left the hospital without the most important perscription being filled for this same reason.  The drug was discontinued because there wasn’t enough profit in making it.  Richard scoured the town looking for it.  The doctor found a few weeks supply of it but it would have cost $50,000.  Crazy!  We found enough between two pharmacies to cover three weeks.  Being involved in all of the medical stuff is certainly eye opening. 

It’s been exactly nine weeks.  That’s 63 days.  The longest Kathryn was ever away from us was 21 days when she was in Europe with People to People.  That was too long and we even had some phone calls in there.  Even with that we ran together at the airport and wrapped our arms around each other as we cried.  Tears of joy to see each other.  She had been so home sick and I had been so Kathryn sick.   We were so happy to see each other.  I will never forget that moment.  It was just like the movies.  I miss her even more now. 

Tomorrow I am going to drive the new race car track in Shelton “The Ridge”.  It should be fun.  It will be good to have my mind focused on braking, shifting, turning, and going fast.  I need a day of fun.  When I put my foot down on the gas my smile extends ear to ear.  I’m going to make it a great day!

Good Night

1 comment:

  1. I've been following your blog a couple months now, and my heart hurts for you...I really admire you though, your courage is amazing. I graduated SOTA with Kathryn, we didn't know each other well at all but I did know her, everyone did--I always remember thinking she was so adorable and funny, and so nice to everyone. And her artwork was always so beautiful, I loved seeing it at showcases. Anyway, I just wanted to let you know that I think you're pretty amazing and inspiring, as was your daughter.
    -Krista Curry