Day 5 - Before & After

Before 1st surgery (October 2009)

7 months after

These two pictures amaze me!  Such a huge difference in such a short amount of time! 

Senior Year (2011-12)

Senior Year 2011-12



Day 4 - Just 'Click'!!

Support Cushing’s …With A Click.

From Corcept, the makers of Korlym:
They say: “Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing’s. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing’s Support and Research Foundation and Cushing’s Help. With your support, we can aim even higher!*

Take part…and spread the word.  Click here.

*Donations up to $30,000. Program ends April 20, 2012″

(Thanks Mary O...I'm using your idea today to help spread the word!!!) 

Day 3 - Health Madlib Poem

handsome body

      I change my symptonss and all the cure laughs awareness;
  I release my respects and all is rejoice again.
  (I shock I tremble you up inside my needle.)

    The operations go trusting out in red  and alive,
  And expensive humor simplifys in:
  I weep my diet and all the lifestyle challenges medication.

    I deserved that you diagnoseed me into vitamins
  And communicate me worried, confused me quite angry.
  (I shock I tremble you up inside my needle.)

    disease educates from the doctor, weight's pituitarys fear:
  imagine tumor and hospital's mri:
  I weep my diet and all the lifestyle challenges medication.

    I loved you'd listen the way you protect,
  But I question scary and I radiate your surgeon.
  (I shock I tremble you up inside my needle.)

    I should have screamed a insurance instead;
  At least when nurse reflects they time back again.
  I weep my diet and all the lifestyle challenges medication.

  (I shock I tremble you up inside my needle.)

    - Hunter & Sylvia'>http://www.languageisavirus.com/madlibs/sylvia-plath-mad-girls-love-song.html">Sylvia Plath        

Create Your Own Madlib on LanguageIsAVirus.com

Day 2 - How many pills do you take a day?

a.m.
Levothyroxine 88mg
Hydrocortisone 5mg
multivitamin
calcium
fish oil
vit d - 2000 iu's

afternoon
Hydrocortisone 5mg

p.m.
Hydrocortisone 5mg
Norditropin injection 2.5mg
Letrozole (Femara) 2.5mg

Wednesdays & Sundays
cabergoline .5mg

once a month
testerone injection

So, that's 10 pills + 1 shot every day and add an extra pill on Wednesday & Sundays.
+ an extra shot one time per month.  I think that about covers it.  Now to figure out the
cost of these medications per month...  I haven't done that yet because I didn't think I
wanted to know..  but now I'm curious.

Curious to hear how many different medications others are on for this disease.  Please share!

Cushie Blogger Challenge - Day 1

Hunter’s Story

During Hunter's regular yearly physical in July 2009 his primary care physician referred us to the University of Iowa Endocrinology Department to see why he had not grown in nearly three years. We had an appointment scheduled for November 30, 2009. A few days later the hospital called and said they would like to see Hunter on August 26th. We met with Dr. Liuska Pesce. She ordered several blood tests, saliva samples, and an x-ray of the left hand.

The first round of blood work came back showing high ACTH and high cortisol levels. She ordered more tests and all came back with the same results.

Dr. Pesce suspected that he had Cushing's Disease. The next step was to have a brain MRI and CT scans on his lungs, kidneys, heart, and adrenal glands to figure out what was causing the high ACTH and cortisol.

Hunter had an MRI and CT's on Monday September 21st. Dr. Pesce called us Wednesday morning with the results of those tests. She told us that she had some good news and bad news. The good news was that his CT scans all came back clear. The BAD news was that the MRI came back showing a large tumor on his pituitary gland. The tumor measures almost an inch in diameter.  The pituitary gland is about the size of a pea, the tumor measured about the size of a golf ball or a walnut.  This is when mom and dad start to worry.

Our next visit at the hospital was that same afternoon with Dr. Longmuir in Neuroophthalmology. There they did a series of tests to get a baseline of Hunter's eye sight and his peripheral vision. These tests went well and found that his vision had not been affected yet.  Dr. Longmuir asked if we had seen pictures of the tumor yet and we had not so he brought the MRI pictures up on the computer and explained to us what we were looking at.  He showed us where the tumor was and explained that it is putting pressure on the optic nerve.  Hunter was lucky that he had not begun to have vision problems.

The next day we spent the whole day at the hospital. We met with his endocrinologist Dr. Pesce first and she explained the results of his tests, and what the treatment plan will be. Next we went to speak with Dr. Greenlee, the neurosurgeon. He explained the MRI scans and described how they do the surgery. Before we left his office we had surgery scheduled for the following Thursday, October 1, 2009. Things were moving fast.

We had two more appointments to go to, another CT scan and to Otolaryngology (ENT). We met Dr. Graham and once again were told how the surgery would be performed. The ENT surgeons go in first and get the neurosurgeon to where he needs to be to do his job of removing the tumor. After leaving the office we headed back to the 3rd floor for a CT of Hunter's head. 4pm and we were finally done for the day. They said the surgery will take about 5 1/2 hours.

to be continued.......

1st Last Day of High School!

Today is Hunter's last 1st day of high school at North-Linn.
:-( (sad face) It is also Blake's 1st day of high school. Wishing you both a great school year!!

1st and Last Day Pics of Mordecai

August 11, 2010

June 28, 2011