Jones Family

Jones Family
November 2009

Wednesday, December 9, 2009

Radiation Day 1

Whew...driving to Little Rock Tuesday was more of an adventure than I could have imagined. We were so thankful for safe travels after seeing so many cars off on the side of the road from, we assume, hydroplaning. There were too many wrecks and even a truck on fire. The rain was SO heavy we had to go slow and play it really safe. The long drive seemed so much longer. Brayden was not his normal self and slept the whole way. That hasn't happened in a while.

Brayden was SO nervous when we got to Carti. I hope the cute nurses helped. They were so nice. They were giggling at his chatty nature...and were quick to tell me the grown men do it too, but it's not quite as cute! He was positioned on a lovely, plush, comfortable...okay, a rock-hard, solid table. The big machines were a little bit intimidating. The making of his mask was unique. It looked like a flat strainer with screws on the outside edges. The flat strainer part was like a pliable plastic. They put it in hot water and then after positioning over Brayden's face, it was really tight and began to take the shape of his face. You have to position it just right while screwing it into the table and allow it to dry while it conforms to the shape of his face. He was excited to know he gets to keep the mask after he's done. Who Friday he may never want to see it again! Anyway, they told him how the mask feels like wet noodles until it dries. Then the lasers are lined up just right and the mask is marked. We were glad to hear that since the material we read originally indicated he would have tattoo marks in order to properly position the machines. This is MUCH easier! After the CT-scans, Brayden had many more questions. It was painful to him to have to lay still and not speak! He made up for it after the mask was unscrewed from the table and he was free again. After seeing his mask off his face, he had to comment about "My head is HUGE!" He wanted to go back and see the computer images of his CT-scan. They were so patient with him showing him where his brain was, his ears, his eyes. We even got to see his port on the image!

We had to brave the rain again to make it to our hotel and get checked in. We were really missing Daddy after carrying in 11 days worth of medicine, clothes, all his books and schoolwork, and the list goes on. After an hour of cleaning, the un-packing had to start and we finally got settled in...just in time for dinner. Last night was definitely a blur. Our hearts were broken to read about Hannah Grace and her homecoming into Heaven...our prayers for them have continued today.

This morning came way too early. Brayden wouldn't eat breakfast. I know he was really nervous. The cold this morning was brutal! My poor car was NOT happy not being in the garage like at home! Radiation today got off to a good start. Everyone was so nice and friendly with Brayden. I forgot my camera but will try to remember tomorrow. He had to get back on the comfy table and re-position, then screw in the mask again. It's a little nerve-bending hearing them talk about the critical placement of the mask. This room had cameras on him and the Radiation machine was behind him and over him. They use a band to velcro his legs together to help him stay still. It took a little longer than it should going forward because they had to get more x-rays. Walking out of that room knowing what the machine would be doing to both sides of his head and brain was some hard steps. My legs felt like 100lb weights had been bolted on my ankles. Watching him on the monitor with the technicians and all the computers was at least a little more comforting. The huge machine rotates from side to side and just was massive. The red lasers were positioned and re-positioned to ensure it was on just the right spots. was over. I ran in to see him and he couldn't WAIT to be free again of the mask. He said the sound it made was scary and it made a bad taste in his mouth and almost made him get sick. Yikes. I'll definitely be giving him a Zofran before we leave tomorrow.

We had to see the Dr. before leaving and Brayden was happy to get to head back out into the cold. He had to wear a super-warm hat to keep him warm. His head just looks so vulnerable in this cold! This afternoon we both worked, but were working against our heavy eyes. He didn't give in...he hasn't eaten much today. I keep watching for things, but we've been told twice symptoms don't usually show up in the first day anyway. Tomorrow's appt will be a little later, so I'm hoping he'll get some extra sleep and hopefully eat at least some fruit & yogurt. He's loving those low-sodium V8 snack drinks lately. We loaded up on Acai berry juice and some blueberries and almonds. Hopefully he's getting enough good nutrition to help fuel his body to keep up the fight.

He should have to get blood work at Children's this week...we're just waiting to hear when so his Oncologist can also check in on his progress. I reminded him again today why he has radiation and it made me wonder if I had said it clearly enough on here. His type of Leukemia is highly treatable with a 76% success rate. In children where there are Leukemia blasts present in their spinal fluid at the time of diagnosis is treated with additional procedures. There are 3 levels of measurement of the blasts: 1-3, 3 being the most severe. Brayden's were at Level 2 when he was diagnosed. All of the spinal taps he has had, (lumbar punctures) have been injecting chemo in his spinal fluid to treat the cells that were present in his brain. The blood in the brain is separate and treated separately from that in his body. So the other chemo treats his body and the LP's and Radiation is to treat the cells in his brain. Years ago when the success rate wasn't so high, research had shown that children would look like they were in remission then the Leukemia blasts that had been hiding in the brain would overtake and the children wouldn't make it. So with all the side effects of Radiation, it's proven effective to ensure after Remission, those children don't relapse with those blasts that hide in the deep recesses of the brain while the body is under-going chemo. We just want to ensure it doesn't come back.

Tonight he's having some leg pain that could either be attributed to the chemo shots in his leg last week or his peripheral neuropathy. I'm hoping it's not from Radiation this quickly. He isn't liking any food this evening so I'm hoping his taste buds aren't effected already either. Please join us in praying for a restful night of sleep, peace for him for his Day 2 of Radiation tomorrow, and again protection for him from the nasty effects that Radiation can bring. Stay warm tonight!!


  1. Lisa, Bryan & Brayden,

    I am so thankful that you will be home for Christmas. Your strength and positive attitude continue to inspire me in my daily walk. You are in my thoughts and prayers.

    : ) Mrs. Campbell

  2. Praying for you all through the radiation journey!

  3. There isn't a day go by that I don't think of you guys. I've gotten behind on the blog and just cathing up. Know that you are all in my prayers. With all that you have gone through I'm glad you try to include specific things you are praying for this helps guide the rest of us on your needs\guidance as a family and allows all of us to pray for those needs.