Goober

My sister is 21. She is smart, beautiful inside and out, an amazing aunt, an awesome person,  and I miss getting to see her. She was my baby doll when she was born. Then she was kind of a burden through my high school years. But now she is simply a delight. She does so much for others. She is an RA, she's actively involved in two different service fraternities, she does volunteer work out the wazoo, she's just good people. And I just wanted to take a page on the internets to dedicate to her and her awesomeness. Really, it's the least I could do.

I love you Goober! I hope you had a fantastic 21st birthday!

 

This is Chaselyn proudly displaying the cup she won with Aunt Rachel for doing the best air guitar at the baseball game. She won the cup and a free haircut for every person on the row from SportsClips. Aunt Rachel is pretty awesome!

To my Momma...

Mom,

Just wanted to write a little note to thank you especially for all that you have done this past year. I really cannot begin to express how much I have appreciated your willingness to just be there for me and the kids at the drop of a hat. But more than that, you have done it all while not only dealing with your daughter having brain cancer, but also dealing with your own cancer treatments. I cannot imagine what it was like to get the call last May. Just to hear that your daughter has cancer. But in some strange way, I think you were prepared. You were kicking cancers' butt and now you could help me to do the same. It's been extra special to commiserate with my own mom about the not so lovely details of treatments.  You are truly an amazing mom, and I wish I could be there in person to tell you this, but we both know that I wouldn't be able to get the words out.

I have said it before and I will say it again, you really can't begin to appreciate the love that your parents have for you until you have your own kids. Thank you for loving me when I was misbehaving. Thank you for encouraging me to stand on my own. Thank you for letting me fall down but being there to help me up if I needed. Thank you for your patience. Thank you for the unconditional love you have shown. Thank you for being you.

Happy Mother's Day Mommy! I love you and miss you so much!

Power port

Can I just say that I am so happy to have my port in place. I can't imagine going back to multiple needle pokes (honestly it usually took them at least 5 tries before they would get a vein) every time I need to have blood drawn or an MRI scan. Even though I had just had it placed on Thursday, it was so easy and relatively painless when they drew blood and gave me chemo on Friday. They said it would probably be a little less painful next time, because it would be more healed. If what I felt on Friday was the most pain I should feel from the port ever, I can't begin to express how much I wish I would have got one of these earlier.

Now it is called a power port, because not only can they do blood draws and administer my new chemo, but they can also put the contrast dye for the MRI scans through. So as far as I'm concerned, I shouldn't have to be poked any more except through the port.

If you're interested in my bionic piece, you can read about it here:

http://www.bardaccess.com/port-powerport.php?section=Features

Despite Stanton's insistence, it doesn't make any fancy power noises when in use or do much of anything else. It just sits there and waits to be used.

I have included a couple of pictures. One of the port off the website and one of me with my new friend. I'm using a new iPad interface for blogger, so I'm not sure exactly how this will turn out.

Seizure

On Tuesday the 10th I admitted to Stanton that I was experiencing slight weakness in the right side. I wasn't worried about it since it was even low grade enough that he didn't notice. I just figured it was residual from Fridays trip to the ER (they called me and told me that my platelets were low and said I would need a transfusion if it were true. This caused a stress induced reaction where I experienced more right side weakness than I have had in a long time. The weakness quickly went away on Friday. And my platelets turned out to be fine.) . Stanton was visibly worried about the revelation of my rigth sidie weakness, no matter how much i tried to minimize it. So on wednesday I was already trying to get in contact with my doctors, to talk with them about what was going on. I finally got a call back at 6:17. They said that it didn't seem like I had already had a seizure, but I should watch out. I got off the phone with the doctor, called Stanton and told him what they had said. My phone says that call lasted until 6:30. I was still not worried, I was sure that it was nothing. I started feeling a little weak, so I sat down on the couch not to much later, my leg started shaking, then cramping, then my arm,within seconds I was having a full blown (focal) seizure. My whole right side was flailing out of control. The scariest part - I was at home alone with the kids. I called for Chaselyn to come into the living room, the kids were both back in Jacobs room. Both of them came in while I was seizing. They thought I was playing the horsey game and promptly started climbing on me. I tried to get Chaselyn to get my phone for me. I told her it was on the counter in the kitchen. Remember I was still seizing so it took all I had to get the words out and they weren't coming out very good. She went and looked, but said she couldn't find it. Then she said "I got it momma." And showed me a play phone. I told her that I wasn't playing and that I really needed my phone. After she looked again, she said she still couldn't find it. So , I told her that it was ok. But i needed her to go over to the neighbors house and get help. I told her to go outside and see if the boys next door were playing. If they were tell them that mommy needs help. If not, knock on the door. I knew it was a lot to ask, but while seizing I couldn't think of anything else. The sweet little girl said ok I'll go get my shoes, she already had shoes. I pleaded with her that she needed to go now. Then she told me that she couldn't go outside without a grown up. By this time I was starting to regain composure. I told her that just this one time she could go. She went over to the door but then came running back to the couch. I told her that it was ok to be scared, but I really needed her to go over to the neighbors house. She was slowly walking toward the door again. By this time I had stopped seizing. And had regained composure. I was sure that I could now hobble over to the counter and get my phone. I told Chaselyn she didn't have to go. She immediately seemed relieved. I got to my phone, called Stanton back at 6:51. I estimate that the actual seizure lasted less than 5 minutes, but it seemed like an eternity. Stanton was only a couple minutes away. He called Michael and told him to get someone over to our house to watch the kids ASAP. Within minutes Stanton was home and we had 4 people at our house to watch the kids and pitch in to help. It took a while to figure out what we were supposed to do. The on call oncologist said that we needed to drive to the ER in Dallas. Then we were waiting to hear back from my neurologist to see if it was necessary to drive to Dallas. So when everything was all said and done, we were headed to the ER about an hour after my seizure. Stanton was very anxious and we actually got pulled over for speeding. (Stanton's first time getting pulled over ever.) the nice police lady let us go with a warning. Stanton was more bothered by the amount of time it was taking. When we finally got to the emergency room, we started the waiting game. Fortunately, they put me in a special waiting area away from the sick people. (apparently there is a vicious stomach bug going around Waco.) We sat in there for about 2.5 hours. We had good company though. When they moved me into a room, it was about 10:00 I think. I finally got the CT scan at 11:45. Doctor said there wasn't any bleeding or clotting. And the consensus was that it was probably scar tissue from the shrinking tumor that caused this episode. We were home around 2am. They prescribed some anti-seizure medication called Kappera and I should be talking more with my doctors in Dallas today. So that's my story. Like I said the scariest part was having the kids there while I was seizing. But based on their reactions, I don't think they knew anything was wrong, they thought I was just being silly. Which I am so thankful for. I am praising Jesus today for his healing touch, for his unwavering steadfast love, for constantly holding me in his hand, and for giving me the support network that I have.

Switch it, change it, rearrange it...

Model behavior...

The task take these shirts and make them suitable for a little girl.

The solution make pillow case dresses out of them. Done.

 Now, if I could just find a cute little girl to model them for me...

Oh I'm good.

Oh, she's good.

And that is all I have to say about that.

Happy report, happy me

Well, after getting a wonderful report from the doctor yesterday I woke up this morning like I was on a mission. I got lots of odds and ends taken care of, went to my appointment with the radiation oncologist (she hasn't seen me since august, she was quite pleased), and made a t- shirt pillow case dress for Chaselyn. It's a busy time for me. I'm going to Disney World in 9 days, I'm helping organize two baby showers, starting to think about my sweet boy's 2nd birthday, we need to start organizing for the upcoming move, those baby showers will inevitably lead to two adorable babies that I am desperate to meet, and not to mention hippity hoppity Easter's on it's way. But thanks to the report yesterday I feel renewed by the Grace of God. I am so overwhelmed by the prayers that have been prayed on my behalf. And rest assured, if I could I would reach through the computer screen right now and hug your neck. I'm really ready to see some family and friends. I haven't seen my family since the first of the year. Friends here in Waco have been great, but some of my closest friends (including the 2 that I'm helping organize showers for) aren't so close. But between the Disney trip and the showers, I hope to get recharged. I learned something in my appointment yesterday that I hadn't understood before. I thought the plan was to do 12 rounds of chemo (i start my 7th round on Sunday) then reevaluate. The way I understood it, if the chemo was working we would stick with it until it stopped working. But I found out yesterday, that after 12 rounds, the side effects tend to get worse compared to the benefit. So I won't stick with the same treatment past August. Dr. Maher actually said that if it continues to be as effective as it has appeared to be, I should only be left with a little scar tissue by that time and then I would continue to get MRI's done every 2 months. Dr. Tiwani (radiation) said she could try re-radiation if there was anything left. But that's a decision that doesn't have to be made yet. That's all I got for tonight.