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.
praying!!!!
ReplyDeleteCarrie, I am a friend of your parents and 3 younger siblings. I taught a CCS for a few years and I have met you a couple of times. I have prayed for Brian every day since you started this blog. I have also prayed for you and the rest of your family. I tell you this because I am sure there are many, many others who are doing the same. I haven't met Brian, but through your blogs I have caught a glimpse of a sweet, sweet and happy little boy. I admire the way you have kept your head and your faith...I am reminded of you in the verse that says to return to your Stronghold, you prisoners of HOPE. (Zechariah 9:12) Carrie, never lose hope. Faith is the substance of things hoped for, the evidence of things NOT (YET) SEEN. I KNOW you are strong in the Lord. Just know that ya'll have prayers covering you all through each day and night. With much love, Paula Carson Hunt
ReplyDeleteHi, Carrie! I started reading your blog the other day when Dabney put the link on Facebook. Thank you for posting updates; I'm praying often for you and your beautiful little boy.
ReplyDeleteRachel Tilley Witherow