Sunday, April 8, 2012

Happy Easter

He Is Risen! And because He is risen we have hope and a future. We have eternal life with no sickness, tears and pain and we are with HIM forever. We rejoice all the more this year and long for life with our Saviour.

Coming off a really bad week, we are tired and feel struck down. But we know that we are not destroyed. God is our help and our strength. It has been a joy, and such a source of encouragement to see HIM shine through our little five year old. Brian has been through a lot this week and he is still smiling. He is amazing. You can see from the picture I took below that his port has five marks from Mon, Tues, Wed, Thurs and Fri chemo pricks. Yet right below that is a picture of  sweet Brian being goofy and wanting me to take silly pictures of him.

Brian is excited for Easter but not for candy and chocolate. He is most excited about going through our Resurrection Eggs as a family tonight. He wants to be the one to tell the story of Jesus rising from the dead. He loves opening the last egg and screaming "It's empty! Just like the tomb was empty b/c Jesus rose from the dead!!"
He Is Risen!

Friday, April 6, 2012

Week One Complete

Brian and Ms. Chris
This week has been absolutely brutal. We are so exhausted. Brian has a bruise on his arm from where we have had to physical restrain him to access his port. This is really tough. He is a strong fighter. The ladies in the infusion center refer to Brian as their moving target.
   Today was Brian's fifth treatment and the end of week one. Fifty-five treatments left of this round of chemo. Brian got a nice Easter basket from the infusion center and his gift from Kohlton.  Please pray for Kohlton.
    This week I listened to a message from a pastor in California that has a daughter with a cancerous tumor. She was diagnosed for a third time just this week. It's a great sermon and we not only agree, but can personally identify with what he is going through.  You watch/listen to it HERE. I should add I know absolutely nothing about him or his ministry, just this one specific message.

Tuesday, April 3, 2012

2 down 58 to go!

Yesterday we met with Dr. Parmley and Dr. Kummer again. We had to sign the consent form for chemotherapy treatment...again. After Brian's appointment we went down to the infusion center for chemo. We were pretty emotional and upset, but you cannot tell by looking at Brian. He is almost always a happy boy. He was not happy when we discovered that the drug Cytarabine is not a push, but needs to be administered through a pump. To Brian that means that he has to be "hooked up to a machine." He really hates that. The appointment went way longer than we thought. (Thank you, Julie W. for always being flexible and taking care of our kiddos. You go way above and beyond.)

Ms. Chris the nurse administering the chemo at the infusion center gave Brian a cowboy hat, bandanna and sheriff badge. He's such a cutie. She even gave him three extras to take home to his siblings.

The best treat of the day was a special surprise. Ms. Chris said that a sweet young man had come by and left some gifts for Brian. She said that the sweet young man heard Brian had to do chemo everyday of the week and wanted Brian to have a treat waiting for him each day. You may remember me mentioning Kara and Kohlton a couple of posts back. I am positive they are quickly becoming our new best friends. Kara, I couldn't help but cry at how amazingly thoughtful you are!!! THANK YOU!! Brian has opened the yo-yo and the glow ball. It has brought a huge smile to his face after each access of his port. Thank you, thank you, thank you!!

Today we had our Classical Conversations homeschool group in Pace. Brian was not up for it so Fred worked from home so he could stay with Brian. Fred noticed that Brian barely drank anything today and took two baths. The frequent warm baths are an indication that he is not feeling well. He is his Mommy's boy. :-) Ansley, William, Olivia and I left school before lunch so we could make it to Brian's chemo appointment at 1:00. I picked up Chick Fil A and the kids ate lunch at the infusion center while Brian received his chemo. Everything went smoothly.

Brian was so upset that he had to "be hooked up" today and again tomorrow. Fred said that Brian started flapping his arms like a bird and saying, "I have to always do chemo?!!" A little bit later Brian said he wished he could fast forward and be all done with chemo. Then he said he wished he would just die and be in heaven with Jesus.

   We've had a lot of deep talks and prayers in our house recently. In an effort to help Brian understand and have some sense of control I made him 'chemo calendars'. I only did a couple of months. We will take it two at a time. I think if he saw all twelve he would just give up. Seeing the two months with the yellow circles around chemo days helped Brian grasp when he would have chemo and when he would not. It brought a smile to his face to see more dates without circles than with. When you're five and a half and you have been doing chemo since a month after you turned three and now all of the sudden when you thought you were done, but instead you're going to chemo everyday, it does seem like "I always do chemo!"

Please keep praying for our family, specifically Brian Robert. Thank you.

Monday, April 2, 2012

Sweet times

We've been talking to our children about painful times, difficult circumstances, God's love and His Sovereignty. Our kids know the Bible story of Joseph pretty well. So when Ansley got to thinking about God working all things together for our good and His glory she came to me said, "Mommy, I know that Brian is probably not going to be second in command in Pensacola, but..."

We read the following in church yesterday and it was very timely:

Heidelberg Catechism, 1563
Question 28. What advantage is it to us to know that God has created, and by his providence does still uphold all things?
  Answer: That we may be patient in adversity: thankful in prosperity; and that in all things, which may hereafter befall us, we place our firm trust in our faithful God and Father, that nothing shall separate us from his love; since all creatures are so in his hand, that without his will they cannot so much as move.

There is some good info on LCH. If you want to watch the videos and learn more about it click HERE.

Dr. Parmley describes LCH in simple terms. He says if you look at the LCH cell under a microscope you see characteristics of a blood disorder, characteristics of an auto immune disorder and characteristics of cancer. It is treated the same way you treat cancer. He considers it a cancer.