Friday, March 12, 2010

It’s Game Time, Baby

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Last weekend we went to the OU vs Texas basketball game. I was a little nervous about whether or no the the kids would be able to sit through the whole game or not. But I needn’t worry.

 

 

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E slept the whole second half and Kyler sat on Daddy’s lap and enjoyed his popcorn.

 

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Beau (on the end) is a longtime family friend and this was his last game. He will be graduating from OU soon.

 

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E was not thrilled about someone other than her mama holding her!

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K did fabulous though!

 

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Bethany (beau’s sister) is Miss Kansas and will go on to compete for Miss USA. Isn’t she beautiful! Apparently, looks made no difference to E though!

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It certainly did with K! Look at that smile!

 

Thank you so much Grandma and Grandpa and the Gerber family for the tickets. We had a fabulous time and are definitely planning more in our future!

Thursday, March 11, 2010

WOW!

I seriously had no idea that so many of you were out there reading and praying for us. My phone has been beeping like crazy today with all the new emails I have received. I will not go private until next weekend so if you would like to be added as a reader for my private, family blog, please send me an email and let me know.

I'll be honest though, if I don't know you and didn't know you were reading, I will probably not add you for that blog. Please don't take it personally, it is nothing against you at all. I promise. It is totally for the safety of my children.

My cancer blog has been set up. I have been working my butt off all evening to transfer all of my cancer posts to this new blog. It has taken FOR.EV.ER! But, it is done, and I am so proud of myself.

My new blog is http://www.cancermommy.blogspot.com/

Here's the sad thing though, I don't have any followers or comments:(

As I was transferring I read some of the posts and the comments and I will admit, I was crying. Some of those posts were really difficult to read. But, wow, you guys are awesome friends. Your comments mean so much to me.

So, head on over there, leave me some comment love and become a follower. And, if you wouldn't mind, when you are reading over the posts, let me know if you see the kids names anywhere. I am changing them to K and E to protect them. I will still talk about them on there, but I am not going to use their names or pictures of their faces.

I have honestly debated this for quite awhile. However, I have so many readers that I don't know are readers so I kept it open for them. But, because of recent events, I think this is just the best thing for our family for many reasons.

A Tough Decision

After thinking about this long and hard, I have made the decision to make this blog private. There is just way to much drama in my life right now. People are upset about a silly little thing and it's just not worth it. So, what my plan is, is to make this blog, about my children and my personal life private. I am however going to start a new blog which will totally be devoted to my "cancer life." I like the fact that I can raise awareness about Melanoma. The more people that know about this awful disease, the better chance at preventing it. I am going to attempt to transfer a lot of my cancer posts to that blog and I will let you know when that blog is up and rolling.

In the meantime, if you would like to continue reading about my family, please email me and you will be added. I am also doing this because I am trying to keep my kids safe. My blog gets a lot of traffic, which is awesome btw, but there are people reading it that I don't know. While you are probably just sweet, caring mamas, I don't know that. If something ever, ever happened to my children because I talked about them on here, I would not handle that well!

This has been a very tough decision for me, and I did not come to it lightly. In fact, I am pretty pissed that I have to do this. But, at this time, I think this is the best decision for me and my family.

I am going to make it private after we return from our cruise. So you have a week to send me an email either at my personal account (that most of you know) or at cancersucksmonkeyballs@yahoo.com  I am happy to add you. My cancer blog will be an open blog, so no worries there:)

Trial Info

I know some of you have been waiting for the information on the trial and I guess I have just been avoiding it. I'm kind of sick of talking it! But, because I love you all so much I will tell you:)

When we were at Vanderbilt last week I signed the informed consent and had some blood drawn. The week prior my tissue block from my very first surgery was sent to them. They will take the tissue block and check it to make sure that I do, in fact, have the B-raf gene mutation. MDA did this, however, the drug company must perform their own test. The blood draw was to see if I have have a certain genome in my blood that the medication needs to follow. These tests will take about 2 weeks to get back.

If both tests come back like we want them to, I will head back down to Vanderbilt for more testing. Not sure what they are looking for on this one, but the results for those will come back in 2 weeks also.

If THOSE tests come back like we want them to, I will start a very strict diet. No caffeine, no vitamins, no kale, no broccili, no apple juice no alcohol, blah, blah, blah. I have to be on this week for one week prior to beginning the trial. Honestly, I will probably start the diet the week before we find out the results so that I can start the trial as soon as possible.

We will head to Nashville the day before the trial starts and I will be hospitalized. Since this trial is taken in conjunction with a cocktail drug I have to be in the hospital for the cocktails to be given to me.

The cocktail drugs are:
*caffeine
*warfarin (blood thinner)
*omeprazole (used to treat stomach ulcers)
*dextromethorphan (in cough meds)
*midazolam (general anesthetic drug)

The first cycle, evening before day 1 to day 5, I will be given single oral doses of each of the interaction drugs. I will be hospitalized and blood will be drawn about every 15 minutes on day -1 to day 3. After that I will be released from the hospital and will return every 24 hours for labs.

The second cycle, day 6 to day 19, oral does of RO5 will be given. I can be home for this!! YIPPEE!!:) I will take 4 pills in the morning and 4 pills in the evening. These have to be taken at the same time every day and I will have to keep a journal.

(I am SO happy that I can be home in the middle of all this)

The third cycle, day 20 to day 25, I will return to Vanderbilt and will be hospitalizezd, I will be given oral doses of RO5 and the cocktail drugs. (the first cycle all over again)

Following the third cycle my diet can return to normal. In other words, hello Diet Pepsi:)

The remaining cycles, day 26 until I stop taking the study drug, I will be given oral does of RO5 and will return to the clinic on day 1 of each cycle (every 28 days) for scans and checks.

I can remain on RO5185426 until I decide to withdraw or it quits working.

Statistics are showing this drug works, on average, 6 months to a year. However, some people have been on it longer with success. One of the down sides to the drug is I will have about a 20% chance of developing Basal Cell Carcinoma. So, in other words, I am one a drug to kill my cancer, but in the mean time I have the possibility of developing another! Nice!

The side effects appear to be pretty mild. But, compared to biochemotherapy, ALL side effects are mild! Nothing and I mean nothing, is as bad as that. If you saw me during that time then you know what I mean! The most common side effect is fatigue. Big surprise! But, I'm a mom. I'm always tired!

Hope that answers some questions. If you are curious about anything, just ask. I will do my best to answer them.

Wednesday, March 10, 2010

Death and Dying....

...are two things that I think about a lot. Unfortunately. I don't want to think about it. And honestly, the thought doesn't consume me during the day. But, at night, while I lay in bed, it's all I can think of. I think about our day. I think about any regrets I have and what I would have done differently. I think about the memorable moments and what my kids will remember about today.

Something I do with the kids everyday is ask them to tell me what their favorite thing was about the previous day. Sometimes it's something silly like, we had hot dogs for lunch. And sometimes it's something fun, like we went to the zoo. Either way, I love hearing it. I love that they remember something that we did together.

I am working so, so hard to build these wonderful memories, because, let's be honest, we don't know how much time I have. But, we don't know how much time anyone has. Anything could happen to any one of us at any given time. Scary, right?!

The other morning one of my good friends that I talked about in this post (PS the lump came back as a fatty tumor not cancerous btw!) was getting ready for a funeral at our church. When she told her 4 year old daughter that she had to go to a funeral, her 4 year old starting bawling. When her mommy asked her why, she told her she thought it was because I had died. When my friend explained it wasn't me, she calmed down, but the sad part is, is that she can't say that won't ever happen. Sucks, right?!

I don't know about you guys but I am so over this cancer thing. I am just sick of it. I am sick of researching. I am sick of telling my story. I am sick of thinking about cancer. I am sick of stressing out. I am just sick of it all. After fighting for almost 2 years I am getting a little irritated. Please pray that this trial at Vanderbilt will work out. I have many options, but this will probably be my best bet.  Keep those fingers and toes crossed.

The point of this post was to help some of you remember that life is truly to short. The next time your kid does something silly and you are at the end of your rope, remember me, remember my kids, but most importantly, remember your kids. Life is just to short.The naughty behavior will pass. I promise.

I would love to know what you do to make each day memorable for your kids.

Tuesday, March 9, 2010

Baby Shower Weekend

At the end of March my wonderful SIL (my brother’s wife) is going to have a baby girl. I can’t wait! This will be their first baby and they are both excited beyond belief.
Nervous? Of course.
But aren’t all new parents?
But, if the way they treat my children is any indication of the type of parents they will be, then I have no worries. My children love them and talk about them often.

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Ella preparing for the baby shower in her beautiful pink pettiskirt.
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This is where Ella spent most of the time. On top of the table helping Cherie open her gifts! Good thing Cherie is such a good sport!

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Beautiful, isn’t she. The pregnant tummy suits her well.
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The food line! The cake was beautiful and the mints and punch were delicious!
Huge thank you’s to all of the Aunts that helped with the shower. It turned out great!

Monday, March 8, 2010

Valentine’s Day

This year for Valentine’s Day we decided to take a little family trip. I purchased a few little items for each of the kids, most of the items came from the dollar bin at Target or the Dollar Store, and they were able to open them Valentine’s Day morning. Cody and I did not purchase gifts for each other, which was totally fine with both of us. Being together as a family means more to either of us than “stuff.”

So, this past weekend we made a trip to Great Wolf Lodge in Kansas City. It was worth every.single.penny! Unfortunately, we were not able to stay and swim the second day because we had to fly to Nashville, but we were able to swim for most of the afternoon on Sunday. The kids had a blast. We had two other families meet us there so that made it even better. The kids were able too play together and the parents were able to play together!

My sister and Deegan were also supposed to meet us, however, due to a mix up at the front desk, they didn’t get to join us. Boo! However, I was able to get them some free passes so they could swim this weekend.  I hope they had a great time, even though we didn’t get to join them.

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Valentine’s Day morning the kids woke up and saw their presents. Of course, their fav was the candy!

 

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Ella got the book Goldilicious for Valentine’s Day. She loves this series. And so do I!

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See those balls? Yeah, I won them in one of those claw machines! I rock:)

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My goofy son thinks he is a Power Ranger!

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I am always nervous about bedtime in a hotel with the kids. Both kids wanted to sleep with me, in a small double bed. However, since they were both so tired they fell asleep very quickly.

Thank you K and L for a wonderful Valentine’s Day. You made it the best ever. Hopefully, we can make this a Valentine’s Day tradition.

Sunday, March 7, 2010

My Kids

I know you all are probably waiting for an update on the trial. However, I am so sick of talking about cancer! And trials. And drugs. And side effects.

So, I’m going to talk about something much happier. My adorable, loving, fabulous children:)

 

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This huge container usually holds all of Ella’s babies, however, on this day, it held my two babies!

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I told them to smile really big. They did!

 

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And this? Yeah, apparently nose picking is a good time. They both do it on a regular basis! I don’t know what Kyler’s excuse is, Ella, however, is having some allergies issues, so I can understand hers. K, has no excuse though. He just likes to have his fingers up his nose! Ugh!

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Sometimes, when I wake up in the morning, I discover that two beautiful little monkeys have joined me.

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However, with a beautiful sleeping beauty like this, I don’t complain. In fact, I soak it up. I love it!

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Ella has discovered that she loves all things girly. Including playing dress up. It’s a wonderful way to spend a cold winter morning. Kyler dresses up in his Spider man outfit and Ella can pick out one of her many outfits. Doesn’t she look super cute!

 
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