Wednesday, January 28, 2009

Father & Daughter & Mother & Son Time

Scott and Kaylie went to a Father Daughter Dance on Friday. The theme was Luau (Kaylie is wearing a Bright Floral Skirt) and so Scott thought he'd be funny and put sunscreen on his nose. As you can see in the photo below Kaylie had him take it off.. =)
Scott said he was one of the only ones at the dance without a Hawaiian print shirt. So I guess I need to buy him one! He has Hawaiian themed T-shirts, but not prints...but that's Scott..he's not into prints!

Dallyn and I had some mother and son time and made some cookies (Pillsbury from a roll....I'm really not up to much baking yet...give me a few more weeks to get my energy back) Dallyn's favorite part was getting to cut them all out and roll them in sugar. Dallyn is a great chef! Do you see what his shirt says?? HEY DJ!! I was so excited to find that shirt....since he's our DJ!
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2 Year Flashbacks...

Wow, this seems like another life. This photo is from January of 2007 on our Cruise. Look at my little 5 month old who is now a busy 2 1/2 year old! Wow...I look so much younger and healthier in this photo..makes me sad.. =(

This is last year on Valentine's Day 2008...I had no hair at all and weighed about 100 pounds as I was on chemo then..what a romantic evening..dinner with the family..but that was all I was up to!

So, for this Valentine's Day...we'll see what we do...maybe I'll take photos and post them..then we'll truly have record of how much can change in two years. never know where you road will take you.
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Friday, January 23, 2009

Family Bowling Trip

For Christmas a good friend of mine gave our family passes to a new bowling alley in Elk Grove. We decided to go together on Monday since Scott had the day off. It was only the children's second time bowling..and they had a great time!

Our silly boy loved watching the bowling balls come up through the machine.
Even Kyler was into it...although sometimes we weren't sure if his ball would actually MAKE it down the alley!
Dallyn was so very serious about his bowling game and he really put a spin on his ball and he got a great score! It was great having fun together!
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Thursday, January 22, 2009

Steroid Free!

I'm Steroid Free! Yeah!! I took my last pill on Monday and I'm so happy to report that I haven't had any crazy side effect of going off the drug completely. This means that the past week my body was effective in transitioning back to some of its normal functions.

It'll take a few weeks before everything is back and balanced as it was before...for example I've been really, really tired no matter how much I sleep! That's opposite of what I had been dealing with--up all morning not able to sleep!!

I'm so grateful to be off the drugs. I think I need to throw a PARTY!!

Just wanted to update you all with this now I'm on the road to recovery and trying to get my health back.


Wednesday, January 21, 2009

Toe Much Fun!

Ok, so one of the fun things I've been dealing with the past month has been my ingrown toenails. For anyone that has experienced is Not pleasant!! Ok, so apparently my being on steroids has not allowed my body to fight off the infection because they have just been getting worse and worse the past week.

Finally I decided all the home treatments weren't going to I went to the Dr. today and had him take care of my toes. He put several shots in my toes to numb them up and then did something (I didn't watch and I don't want to know) and took care of the problem.

So my feet were FREEZING so I cut up some old socks so I could survive the day..right now I still have pretty numb feet but I hear I'll be in a lot more pain once that wears off!

I look pretty funny wearing sweats and flip-flops..but these shoes support my feet and allow my big toes to not have any pressure put on them.
Did you know that I just love going to the doctor so much..I have to keep coming up with more medical problems so I can keep forking out those co-payments???=)

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Monday, January 19, 2009

Pumpkins & Faces Round Two

More Cute faces....

Here is his second round of can see what good job he does on rolling the mouths and eyeballs. =)
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Playdough Pumpkins

Yesterday Kyler and I played playdough and Kyler got really into making playdough pumpkins. He was so cute about it. See the cute pumpkin faces? He did the brown and purple ones all by himself!!

His is such a funny boy...don't you love all these faces he's making?? He is SO CUTE!!

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Thursday, January 15, 2009

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 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!


Sunday, January 11, 2009

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 are some of them....

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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 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!
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Friday, January 9, 2009

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 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,
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Wednesday, January 7, 2009

Hope is....

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

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

Here's to a brighter tomorrow....

Tuesday, January 6, 2009

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.....

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Sunday, January 4, 2009


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.


Thursday, January 1, 2009

A Very Sick Heidi..

Well, I won't get into the details because its pretty personal but since Christmas I have been very ill in many ways. Two days ago Scott and I spoke to my Neurosurgeon who said she believes I'm having an allergic reaction to the Decadron Steroid I'm on and that I need to taper off of it incredibly quickly down to 1 mg. a day.

I started on 16 mg daily, then after 2 weeks I was on 12 mg. day and then after 3 weeks I was on 9 mg day. I've been on 9 mg daily for 2 weeks. Well, I am being tapered from 9 to 6, 5, 4, 3, 2 and 1 by next week. This is because I'm having such intense side effects the Dr. feels that I'm having an allergic reaction.

This taper will be really hard on my body and I have to stay on 1 mg. for a long while until my body starts making cortisol on its own again...but the Dr. seems encouraged that although my side effects will worsen before they get better that within a one week I'll be in a much better place with a lot of these symptoms.

Just for the record---living on Decadron--for my body and the intense problems I've had--is worse that being on chemo or anything else I have ever had to endure. I would rather go through chemo again than live through my life the past 2 weeks again.

Thanks for all the prayers--I especially need them now.
Love, Heidi