Wednesday, February 24, 2010

May 5th!

May 5th is the day that we expect Emma to be completely done with treatment!!! Hooray!!! Now, this date could change, but we are hoping it will be close to. The end is so near that we can taste it : ) We are really hoping that we will get to take her central line out soon after treatment. We will just have to go over our options with the doctors once her treatment is over.

Emma has been feeling pretty sick the past few weeks. She has had a lot of diarrhea and vomiting and has been so tired and out of sorts. We have been in close contact with the clinic the past few weeks trying to figure out what is going on. Jonny and I have been extremely worried about her because she hasn't been herself. Today, she had a spinal chemo treatment and we got to talk with the dr. in depth about what has been going on with her. Last night we found blood in her stool which could be a sign of something else going on. They are going to run several tests to try to figure out what is causing all of this, and to see if there is a solution.

On the upside, she has been turning into a toddler right before our very eyes. I don't like calling her a toddler because she is still my baby, but I can't stop it. She is now falling asleep on her own (well, most of the time). She is saying about 16 words and is communicating very well with us. She is learning how to color, and loves to put stickers on paper. She is rearranging everything in the kitchen and learned how to unroll the toilet paper : ) Her favorite dvd is Barney's Top 20 Countdown. She enjoys joining Barney in doing the actions to all of the songs. We even take Barney with us in the car so she will not fuss on the way to the clinic : ) If she wants to watch Barney at home, she will attempt to say his name and then bring us the remote control so we can change the channel. She has also tried to stick a dvd in the vhs player to try to get Barney to play.

Eating is still a challenge and her main source of nutrition is formula. She will eat amost anything chocolate and her new thing is doritos and french onion dip. This chemo sure has messed with her taste buds and gag reflex : ( We are hoping that we will find out what is going on in the next few days. We are ready for her to start running around the house again like crazy : )

Please Pray:

The doctors to figure out what is wrong with Emma so she can feel better

No side effects from the chemo (short term or long term)

Time to fly in the last several weeks of treatment : )

An increase in Emma's appetite and weight gain

For our family! It has been a rough year and we are ready for some sort of normalicy

The health of our new baby!

Sunday, February 14, 2010

I couldn't sleep tonight, so I thought that by writing out all my thoughts it might clear my head. I have a heavy heart tonight. As Jonny and I were getting ready to go to sleep, I wanted to check a friends caring bridge site. I knew her son had been in the emergency room getting some fluids and stuff and I wanted to make sure he was ok. To my surprise, I found out that he wasn't going to make it. What!?! This was such a shock to me because we saw him about a month ago and he was doing good. He was getting ready to start a different kind of treatment and they sounded positive.

I turned to Jonny and told him that he wasn't going to make it. I read outloud the blog post and I could barely make it through. We both just wept because our minds automatically took us to a place we avoid. We both put ourselves in their shoes. So many emotions struck me all at once. I am so so sad for the family. I intentionally avoid the thought of losing Emma, because the pain of just thinking it is so unbearable. And then I feel guilty for thinking it because I believe with all of my heart that God has healed her, and the cancer will NEVER come back. Then I get angry because I still do not understand why these kids have to suffer so much. I still get angry everytime Emma get sick because she has been through so much and does not deserve to feel bad. She is supposed to be playing and having fun. They are innocent and sweet and should not have to feel like this.

After we wept for a while and prayed, Jonny and I talked about how we were feeling. It was nice to talk about things again because everytime we do, it changes or heart more and more. We talked about how we both got frustrated with Emma today, and how we both feel incredibly guilty. We feel guilty because we both just lost our patience over nothing! I discovered that the reason I feel so guilty leaving Emma, even if it's just for a few hours, is because I am afraid if we do lose her I will have missed spending that time with her. Which seems so silly, but it is how I truly feel. Even though I believe God has healed her, the devil seems to take me back to that place where I doubt. And takes away the incredible peace God has given me. Even if its just for a second, its a second too long.

After we settled down a little bit, we both went into Emma's room and kissed her sweet little cheek and told her that we loved her. I can't wait for her to wake up in the morning so I can kiss those little lips and enjoy our time together.

It is amazing how God speaks to us, even if it is in sad situations like this. Jonny and I realize that we are going to experience situations like these for the rest of our lives. It may be other families or it may be ours. We are not guaranteed anything in life! But it is how we handle the situations that matter. God has called Jonny and I to do something great! We are not sure what it is exactly, but I know it involves the kids and families that are going through the same thing we are.

Thank you for listening to me tonight! Please pray for the Caywood family. They know that God has the situation under control and that their son will no longer be in pain. Pray for their young daughter and her understanding of the situation.

Also pray:

Emma to start feeling better. She has been nauseas a lot and still has VRE. We should have some test results tomorrow to see if the VRE has left her system. She has also lost her appetite quite a bit and lost a little bit of weight.

NO more side effects (short term or long term)

Continued remission

The end of her treatment is late April, pray that everything goes as scheduled so she can start living a normal 1 year olds life.

Pray for Jonny and I. Pray for strength to get through the end of the treatment and to ALWAYS remember that God is in control no matter what.

Tuesday, February 2, 2010

Home

Emma was discharged yesterday from the hospital, and did wonderfully with the chemo. She was so happy to be home and play with all of her toys. She didn't have much of an appetite in the hospital, and didn't last night either. She woke up this morning sick and vomited first thing. We gave her some nausea meds and she has been sleeping all morning. I'm going to try to keep her asleep most of the day so she doesn't have to feel bad : (

Please Pray:

For Emma's nausea to go away

NO MORE side effects from the chemo (short term or long term)