The Brands: This week

Thursday, July 7, 2011

This week

We had soccer last night, and Caleb and Nella are on the same team. It's steroids week, and at the end of the soccer evening I asked Caleb what was his favourite part of soccer. He replied, "The sitting off the field and taking a break part." I set him up for that one!

Aside from that comment, the kids are having a great time playing soccer. Another favourite activity, more so than soccer, is bike riding. Caleb has mastered hills now, he told me today, and he just got a kick-stand for his bike. He couldn't be happier!  Tonight we rode through Gage Park, while neighbourhood kids played baseball and their parents sat in the shade and watched.  One of those parents is from a family who we connected with last summer, whose child had ALL when he was 18 months. (He's now 12). "How are you?" she called out to us as we wheeled past. "Good, really good!" I managed to shout back. A short exchange that meant far more than anyone sitting nearby could have known!

Caleb had a lumbar puncture on Tuesday of this week. We had a mix-up in our schedule, so we ended up going to clinic twice this week because they forgot to tell us about the lumbar puncture. LP's are only done on Tuesdays. Oh well. It meant both Tim and I got to go with Caleb this week. LP's aren't a nice experience no matter what, although we do get a little accustomed to it. This week reminded me though, that there really is no normal. LP's are a sedated procedure, and Caleb has typically woken up just fine from sedation. This week he had a really hard time waking up, it was a little frightening, because it was different. He was groggier than usual, his eyes were blood shot, and it took him quite some time to get his wits about him enough to stand up and walk. Not usual for him. Once he was awake enough to leave, he wanted to ride his scooter. He rode his scooter up to the hospital, but he couldn't manage riding it back. He ended up sitting on the sidewalk and saying "I don't feel very well." He was sick for some of the rest of the day.

We know that this kind of experience can happen sometimes. For some it happens every time.  By supper time Caleb felt much better, although he looked pale. We're glad he pulled out of it okay, but it was just not a nice time. A reminder that chemo drugs and all of these procedures really do have an impact on his little body. He's so tough, though. By Wednesday morning you'd never know what went on the day before.

By Wednesday night he was out on the soccer pitch, playing and wrestling with his buddy Jonathan. Oh, and kicking the ball a little bit. Thank God for healing.

Can I say it enough? Carpe Diem.

2 comments:

Michael F said...: Caleb is such a strong boy, every time i see him it surprises me how i forget what he is going through sometimes.
I'm glad to hear he is doing well and that his chemo treatments while rough aren't taking his personality away.; July 8, 2011 at 3:59 PM
Anj said...: I like to say they were hugging, but it looked more liked wrestling. I'm glad they were enjoying being out there together!; July 9, 2011 at 4:35 PM

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What is ALL?

Caleb has ALL, a form of leukemia. From what I understand (here's the dummy's guide to leukemia), leukemia means that something has gone wrong in blood cell production.

Blood is made up of 3 main parts, red blood cells, white blood cells, and platelets. The red blood cells do things like carry oxygen and nutrients through your body. The white blood cells fight infections and keep you healthy. The platelets glue it all together. (I did say this was the dummy's guide, remember.) Bone marrow is where these cells are made and released into the blood stream.

In Caleb's leukemia, his bone marrow is producing the 3 kinds of cells, but some of the white blood cells are being made wrong. These white blood cells are not maturing, they don't perform any function, and they aren't dying off. They take up space, and made it so that Caleb's red blood cells, functioning white cells, and platelets were having a hard time doing their jobs, and the production of the blasts was taking over. This is why before we were admitted to the hospital, Caleb was tired and pale. His blood just wasn't able to do what it should do.

Chemo treatments are designed to kill back the blasts. The only way to do this has a lot of extra damage (collateral damage) as well, which we see in side effects like hair loss and need for blood transfusions. Because chemo also knocks back regular blood cells, Caleb needs blood and platelet transfusions to replace what is being lost through treatment. White blood cells cannot be transfused, which is why he has nothing to fight off infections. We can't replace those ones. When the drugs are less intense and his body can gradually go back to doing what it should be doing, white blood cell production should return. We will have to be careful for a long time, though.

Hair loss occurs because cells that are replaced often in our body, like hair, can't keep up production. The cells die off faster than they are replaced. Other fast growing/often replaced cells are in our mouths and our nails. These are all affected.

I hope my dummy's guide to leukemia makes sense. It's the way I currently understand things. People in the health care profession may cringe at my descriptions, but hopefully it's accurate enough to explain what Caleb's going through. Maybe it will help you explain it to your kids. For now, we just say we're blasting blasts.

We are the Brands

We are three kids, two parents, and one dog. And too many fish. We love our city, time in the outdoors, playing soccer, camping, and making music. Our faith is central to our lives.

On June 23, pieces of what had previously been a concerning question about our son Caleb's health came together in a diagnosis of leukemia. It all happened rather quickly, after bringing him to the ER at McMaster hospital on Monday, June 21. We're absorbing this news, and trying to learn how to cope with leukemia and a young family. Our hearts are torn, but we feel the love of many.

This blog is intended to share with our loved ones and their loved ones what is happening for Caleb and the rest of us. I must say that it is possibly as much information-giving as it is therapeutic writing. Thank you for taking the time to share with us our experience. We find strength in numbers, and in shared experiences.