Thursday, Nov. 29, 2007

This has been sort of a crazy week here at our place. Monday was chemo and the blood draw to check Hannah's adrenal function, Tuesday Hannah felt surprisingly bad, Wednesday Hannah lasted 1 1/2 hours at school before coming home too tired and then at night the news of her test results.

Although our oncologist had told us that "this isn't normally an issue, and I'm not concerned about Hannah", her cortisol level came back at .3. Without even knowing what the normal level should be, I knew this didn't sound good. Normal cortisol levels when drawn between 7 and 8 am should be 5-23. The lowest acceptable level is usually around midnight and is 3-15. This means that her body is producing almost NO cortisol.

For those of you that want to know what this means, read on. If you want to skip all the technical jargon, head to the bottoms. Basically your body's stress system relies on two main hormones-adrenaline and cortisol. Everyone is familiar with adrenaline, and how it works in your body short term if your body senses a stress situation. Cortisol is similar to adrenaline and works in the long term. These hormones control many important body functions like regulation of glucose, blood pressure, ability to fight off infection and reduce inflammation (also key in fighting tumors) and many other things also. In times of stress of the body, the cortisol level increases dramaticallly to ensure all of these important body functions continue normally. That is a very simplified explanation of a very complicated hormonal process.

The risk to Hannah with such a low cortisol level is in a stress situation to her body. Stress situations include fever, cold, virus, vomiting, anesthesia, broken bones, etc. Her body could not produce the necessary cortisol and she would most likely become hypotensive and go into shock. Doctors do not immediately look for adrenal suppression and assume that there may be an infection, so the wrong thing is treated which can result in serious complications or death. However, because we know Hannah's cortisol is low, we will always be able to mention this to the doctors if Hannah is sick or in a stress situation. The had us fill a prescription at the pharmacy already so that we always have hydrocortisone on hand, should Hannah become sick and need it right away.

My first question was how this was to be treated and how can we fix it right away. I feel like she is a walking time bomb. I assumed they would give her hyrdrocortisone to increase her cortisol level. However, the doctors want to do nothing! We are slowly weaning her body off the Megace appetite stimulant and hope that her adrenals will begin functioning normally after it is out of her system. They do not treat low cortisol in this case, because giving another steroid is doing nothing but replacing one steroid for another. It will not help the adrenals to recover their own function and will basically continue to keep them suppressed because the adrenals will not have the trigger to know the level is low. It can take some time for her body to recover on its own after the steroid is stopped, we don't know exactly how long. They are going to draw blood again 2 weeks after the Megace is completely stopped, but I have seen data that says it is sometimes 1-3 months before the levels are normal again. There is also a possibility that her levels may never come back up due to permanent adrenal failure, in which case they will decide to either supplement with a steroid for the rest of her life, or always keep the hydrocortisone on hand as a stress dose.

So for now, we are watching Hannah for any symptoms, or I should say increased symptoms. Symptoms of low cortisol can include fatigue, increased susceptibility to infection, muscle aches and pains, feeling cold, impaired memory, decreased recovery from exercise, allergies, low blood sugar, burned out feeling, depression, and reduced sodium and potassium levels to name a few. Out of this list, Hannah already has nearly 2/3 of them already. We are also keeping Hannah out of school for now. She is still on chemo which means her counts are dropping, leaving her even more susceptible to infection, especially at school. She really doesn't have the stamina now anyway to attend regularly. This means she will probably be out the whole month of December, continuing on into January. This is quite disappointing, and although I know Hannah enjoys time at home, I think this will bother her to be out for such a long time without that peer interaction. But, we have to weigh the odds and the consequences are too great. Before I say for sure though, we're going to see what her counts are on Monday when she is scheduled to get chemo again.

Sorry for the very long post, hope your eyes are still open! Thanks for visiting, and we will keep you updated as always.

xoxo Kim