Wednesday, September 22, 2010

Bump in the Road

Written by Kristen

A Bump in the Road
So last week on Thursday Cooper had a 12 hour stomach bug. I was hoping it would miss everyone. Monday early ViviAnne threw up. But only once. Then when she woke up from a nap she had a fever of 101.5. So I let her just hang out for a bit and took her temp periodically to see if it would come down on its own. She has done that in the past. Spike a fever and then it breaks all by itself. But after a couple of hours this did not happen. I called the Doctor and was told to take her to the hospital. We got here around 6:30PM. Her fever was gone by the time we arrived. Of course! But it spiked back up around 9ish and then again around 4AM. So we have been here for going on 48 hours.

She has really been okay today. Her HGB is right around 10 which is anemic but not low enough to transfuse. Her platelets are 230 but her ANC was over 9,000 when we were admitted. It has steadly come down through the course of the stay but considering it is still high they want to play it safe and keep her here while they wait to see if her 48 hour blood cultures come back negative. She has been fever free for over 24 hours as of now and so we wait.

She keeps teetering back and forth between being in good spirits and being down right hateful! Her biggest beef with today is she has missed her PJ Party at school today. She woke up and said, "Okay, Mom, tell them I am ready to leave cause if we go now I can still make it to my party". I told her it does not work that way here and she got all teary and started fussing at me that she was ready to get outta here. I can't blame her. She knows that she is missing out on fun things while she is in here. And she is bummed.

I am going to take her to Art Therapy here in a bit. We'll see how that goes. She keeps calling it Art Class. We'll go with that. Sounds better. Maybe they can get her to express why she is always so angry and argumentative with me. Then again, maybe I don't want to know. Kidding, I want to know.

Oh yeah! They are delaying her last Vincristine push and steroid round till next week. Which is fine. No steroids this weekend is fine by me. I am used to plans getting changed and schedules getting thrown off. It is life. You can either fight it or roll with it. I have chosen to roll with it. Getting all worked up does not help things.

I have also found a very firm sense in "This doesn't work for us but this does" and then going with that. It is my life and my kids and husbands life. We have to live them the way that we are called to live them. Not a way that makes other people comfortable but a way that God has asked us to live. And if that means saying No to things even when it would be easier to say Yes that is what I am doing. Finding my voice, I guess you would say. Now, I do need to work hard on the volume of my voice from time to time but our lives are all a process and God isn't done with me yet.

So our bump in the road has been just that. Just a little time in Hotel Kosairs. They are good to us. Oh and if you were wondering, even if this happened next week or next month the same thing would have occurred. Fevers within the first 6 months after treatment land you right back in the hospital. Come March I'll have to figure out how to care for a sick child and NOT bring them to the hospital.

Thanks for the prayers and support.

Monday, September 13, 2010

August Update

Well August was a full month! Viv recovered from her end of Julychemo round during the first part of August. Then as the month went on we geared up for her return to Pre-K and her 5th Birthday. She had a wonderful pool party with lots of friends and family and the cake she designed herself!! It was a lot of fun making her cake for her andgetting to celebrate her turning 5. One of the best parts of her party was when she opened a pair of jeans given to her by Grandma Susie and she said in her best drama queen voice and hand motions, "Oh I hope those aren't skinny jeans!" It made the party I think! Justgoes to show she is always paying attention.

Speaking of things "stylish" that is Viv's newest thing. She wants to be stylish and asks after getting dressed if she looks
"stylish". She changes clothes about 4 times a day and won't wear a dress to school because it does not look good with her tennis shoes that she has to wear for school. Maybe when the weather gets cooler she will with her leggings. We'll see if she finds that stylish?!

The end of August she had her FINAL spinal tap! She did just fine. It took a long time to get the both Doctors and Chemo and Nurse all there at the same time so it was about noon when they started and she was so hungry and thirsty that she just became very grumpy. I can't really say that I blame her. It was so weird to think that I was watching her get her last spinal tap. I even have a hard time saying it was her FINAL spinal tap because it just seem possible. Plus it seems like if I say it and really believe it than it won't be true.That is will somehow jinx it. I know others think I should have been bouncing up and down with the fact that she has had her last spinal tap but it just is too scary to think about. That other shoe might just drop if I do.

School has been going
along nicely and Coop is going to the same preschool as her this year. It is nice to have them both at the same place. He is doing great and getting all stickers when he is there. Right now it is about getting him used to being in a school and to like school, which he does. He has shot up in height! He is 41" and only about 1" shorter than Viv. They really do look like twins now. Her hair is just about the same length as his now and so I get that my sons are cute and then they'll stop and so, "Oh, I mean son and daughter" cause 9 times out of 10 she is in a skirt or dress or pink.

One more Vincristine push to go the end of September. One more round of awful steroids and then she is done. Just done. Some people have asked me what I'm gong to do with no more chemo and I just draw a complete blank. I guess we'll all find out the answer to that question together.