The Brands: One more

Tuesday, July 27, 2010

One more

Caleb played with Debbie, a volunteer, this morning. He loves playing with Debbie.

We're playing catch-up here on the blog. There are four posts to catch up on for today. Caleb has a camera now. Our intent is for Caleb to be able to record his experience with his own eyes and words. Sharing it with you all is a pleasure for him. He picks out the pictures and tells what they should say. I am so interested to see how this unfolds for him. It's fun!

Caleb had his LP (lumbar puncture) and BMA (bone marrow aspiration) today. This was the first time that he did not put up a fuss for going to sleep for the procedure. It went smoothly. And we even found his crocs that went missing two weeks ago! They were in the procedure room, waiting for us. Caleb handled it all so well, even the not eating for the 12 hours leading up to the procedure. I was mostly afraid of that not eating bit, but he only asked a few times about food. He caught up this afternoon.

The results of his bone marrow confirmed the remission that we saw back at day 18. We are still waiting for results to determine his final risk group, standard or high, but from what I understand it will be a while before we get those.

I also had further clarification of what we're doing here and how long it will be. When I asked our doctor how long she thought we might be in, she talked about something like 4 days. When I told her I had been told 2 weeks, she reassured me with a smile that it doesn't take that long! The only reason we'd be here that long is if there are complications, like a fever. We may be home this weekend! That's great news for us.

I hope you all have had a good day too.

3 comments:

Williams Family Blog said...: Jess, I LOVE all of Caleb's pictures and the comments, that is awesome. Life and Leukemia from a four year olds perspective. Also glad to hear that is probably won't be as long of a hospital stay as originally thought.
When Keegan was little he pretty much lived on Prednisone for his breathing issues. Just hearing how food focused Caleb is reminds me of those days :)
Keep blogging and we will continue to keep your family in our prayers.
Love your cousins
Karen + Cliff, Keegan, Calia and Kira; July 28, 2010 at 9:29 AM
anya genevieve said...: You found the crocs!! So glad for that - Caleb i'm sure is happy now with two pairs! I'm so glad the tests went well and that Caleb continues in remission and that you guys will hopefully be home alot sooner than you expected -thats great news! praying and loving and holding you guys in my heart. anya; July 28, 2010 at 11:36 AM
Elzinga Family said...: So glad to hear you may be home soon! Great news!
It was nice to see you the other day, Jess.
It was also good to see Caleb and the girls too - what a super star he is :)
Keep up the awesome photos Caleb!
Peace & strength, Carolyn; July 28, 2010 at 7:59 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.