It Might Be Only One More Week!

Well I talked to my Dr's and had some tests done and it looks like I may possibly be off steroids in one week! Yeah!! My cortisol levels were tested and although they are very low, my body is producing small amounts of cortisol on its own again, so give it a week and they believe I can go off the steroids all together!! I have been on steroids for 2 months now so I'm SOO excited to be going off.

The only thing that can change this is if I get sick. Then I have to stay on the steroids because my body won't be able to fight off the infection without enough cortisol....so this morning I wake up to Kyler throwing up onto my bed. Scott was swimming at the gym so of course I had to help my sweet boy who wass sick---so I'm very nervous now about getting sick now but I'm trying to be careful.

Assuming all goes well, I'll be off in a week though. I'm SOO excited! Then I'll have the job of exercising to lose all this steroid weight I have put on!!

Ok--well back to taking care of this sick 2 1/2 year old!

Smiles,
Heidi

A Healthy Day--and photos

I was so blessed to feel pretty good most of Saturday. I didn't get a headache or become 'fuzzy' until around 4 pm. This was such a blessing--that's the longest I've ever gone without a headache. I enjoyed time with my children and Scott. It was great--I took some photos of my kids outside enjoying nature...here are some of them....

Much Needed Family Time

Friday our family got away together for some much needed family time. We went to the Randall's cabin for 24 hours of R & R. Here is the family eating lunch outside--yes it was sunny by noontime!!

We couldn't pass up a few spins in the "Herbie Quad" --as Dallyn affectionately named the Polaris when he was 2 years old. So now it carries that name all the time and Kyler now calls it that. It's basically just a big quad but the kids love it! And since there are seatbelts I'm not worried about Kyler going on it!

Scott wanted to help out so he decided to sweep all the leaves off the deck. They were keeping the water from drying off the deck and Scott was worried about it ruining the deck. I came around the corner to find this scene...so cute all three of them with brooms!

Then Scott assigned Kyler to drop the leaves through the railing....Kaylie and Cameron are down below enjoying the showering of leaves!! See even work can be fun!

The Tumor Shrunk!!

We received GREAT news yesterday that my tumor responded very well to the Gamma Knife Surgery. The doctors were hoping for lack of growth and instead they found it had shrunk and the swelling is gone! Yeah! Here are some photos from my MRI scans. Can you believe this?? This is my brain...amazing..

Here is the tumor and the edema from my diagnosis in November....



Here is a similar image from my MRI yesterday...you see how it shrunk. Yes, it is very strange to look at these and realize that this is my brain and there is an intruder in there...but at least the tumor will hopefully be completely gone within 6 months since its responding so well to the surgery!

The Bad Steroid News....


So the bad news is that I'm having/have had so many horrific symptoms on the steroids. I found out that my symptoms are not typical. My Dr. said that I am incredibly sensitive to the steroids and that they don't typically see this type of reaction. Hence why she felt like I was having an allergic reaction and tapered me off so quickly.

The Dr. said it'll take 4-6 weeks for me to start feeling normal again--ugh--and she's worried about what damage the Decadron did to me because I seem to be so symptomatic as compared to the average patient. Can I tell you that RARE should be my middle name??

We did some tests yesterday to check for further problems....hopefully everything will turn out ok and I'll start feeling better soon. For now I'm on 1 mg. a day of steroid until my adrenal glands start working again. I have to be tested for that still after some other things are resolved....

Looking at BIG PICTURE we are so very happy about the tumor shrinking and wanted to share that happy news with all of you!
Thanks for all of your prayers to this end!!!

Smiles and Hugs,
Heidi

Hope is....

I thought I'd share this card with you all today...as tomorrow is my MRI Scan and we'll find out if the Gamma Knife Surgery was successful.

So I have two hopes...one is that I'll be off these steroids soon..
And the other is that my surgery was successful.

Here's to a brighter tomorrow....

The Dark Side....

As I've been tapering off this drug I've had a lot of darkness and at times I've felt like I'm in a very dark place. The past few days I feel like there is more light in my life which is a blessing. Anyhow..i thought of this scrapbook page I did recently when I was thinking about the darkness...the dark side is NOT a good place to be...whether in Star Wars or in health. =) I sure love how this scrapbook page turned out though--isn't it great...I'm grateful for the light I'm starting to see at the end of my tunnel.....

Tapering..

I'm tapering and I've been really sick. I'm grateful that I'm able to taper and I know my body is reacting as it should to going off an addictive and very powerful drug. I'll update more when I'm feeling better....I know it'll be worth it even though I'm so sick right now.

Heidi