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
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
Wow....I am so sorry that you guys are dealing with this right now. But her body is adjusting to the chemo, the withdraw of the appetite suppressants, etc., so maybe the reaction to all of this is a drop in her cortisol levels and when the test is done again next week it will be back up. That's what I'm praying for atleast! ; )
This is a lot for you all to go through and I'm sending you lots of love and strength. I'm sending Hannah extra healthy prayers so that she will get back on the upside of things and by this time next year will feel 100% better.
Take care of yourselves and know that we love you all very much! We are there with you in spirit!
Love - Angela
Wow....I am so sorry that you guys are dealing with this right now. But her body is adjusting to the chemo, the withdraw of the appetite suppressants, etc., so maybe the reaction to all of this is a drop in her cortisol levels and when the test is done again next week it will be back up. That's what I'm praying for atleast! ; )
This is a lot for you all to go through and I'm sending you lots of love and strength. I'm sending Hannah extra healthy prayers so that she will get back on the upside of things and by this time next year will feel 100% better.
Take care of yourselves and know that we love you all very much! We are there with you in spirit!
Love - Angela
Hey Hannah,
Well just to let you know Sydney has made out her Christmas list and the top thing on there was the Wii. She loved playing that with you guys this summer so much that it is one of her top ten picks.
I hope that you also get what you want for Christmas and make sure to let Santat know that this weekend when you see him. That will be so cool.
Sydney also has a puppy on her Christmas list. She really wants one bad. Even more so since she saw Tod and how cute he is.
You are very close to the end and stay strong. We love you and miss you very much.
Love, Aunt Susie
Kim,
I read your blog daily. I look forward to the pics and the daily updates on Hannah and the rest of the family. Tell Hannah we think she is still "beautiful", I love her latest addition to your blog. I wish there was something we could do to help all of you. Our hearts and prayers go out to you everyday... And, I'm hoping that all of our strength will help Hannah continue to keep her strength up.
Love you all,
Michelle
Hannah,
Sorry your not feeling well. Hope you're better soon.
Love,
Kim
Hanana Banana,
you keep on being strong. I am sad to hear that things are not the way the should be right now but I am sending you all the positive energy and prayers that I can to get you back in fighting form. I know that there is a whole town and many others doing the same. Thank you, Kim for keeping everyone up to date. It means so much to be able to "touch" you guys and your stamina and concern for keeping everyone else in the loop is amazing. Love to you all...this too will pass and soon this will be a distant memory. God Bless you all
Much love
Mrs V
Dear Kim,
This message is for you. We pray each day for Hannah and dear, Kim and Dave, you must stay strong...the end of the road is so close. A year from now, Hannah will be a typical little nine year old and will make you crazy. We believe it.
Love to You, Judy and Dennis
Dear Hannah Love,
I was able to view your beautiful video. Your video touched my heart so and I can not wait to see your beautiful hair grow back. You truly amazing me all the time- This took alot of effort on your part to do especially when you are not feeling so well.
Unfortunately, the end road of chemo always seems to be the hardest and taxes your body quite a bit. I send all my prayers for you to regain your strength and begin to feel better for your next round. Snuggle up with precious Tod and he will bring you comfort.
Now about visiting the North Pole, how cool is that! Were you able to sneak Tod with you. Tell Santa you should receive the best of the best because you are so brave and a wonderful inspiration to others and you have given of yourself so much inspite of your own illness. I pray you will receive all your wishing for and most of all a Christmas filled with much laughter and love with your family. On the top of my list and prayers is a complete healing upon you and your body. A bright New Year filled with new beginnings.
My grandson is going to be one year old this month and it seems like he was just born. I am so thankful to be a gramma ,it is the best blessing ever. I got him a cute little tikes dump truck yesterday. I can not wait to sit of the floor and play with him.
Well, sweet one, I am at the library working right now so I will say goodbye. I send all my prayers and strength to you and Mom and pray that everything wil go according to plan at your clinic visit.
Hang on my kindred spirited girl you are almost at the bottom of that hill.
I Love You Much,
Love & Blessings,
Mrs. Baker (Lynnis)