The Brands: Reading and Waiting, Hoping and Praying

Friday, June 25, 2010

Reading and Waiting, Hoping and Praying

I've just come from Caleb's bedside, in the PICU. He had an okay night, mostly resting. They had even considered extubating (taking the tube out) last night, but he was too drowsy. This morning he is slowly waking up, and making eye contact with us. Occasionally we can read his lips, so we have a small amount of communication. Tim and I are taking turns reading to him from a big collection of Thomas the Tank Engine stories. We have to keep him awake like this, despite the discomfort of the tube and being restrained to his bed, so that when they do extubate him he'll breathe on his own. He is a bit more comfortable than he was yesterday when we were reunited with him after surgery. Things are looking good for extubating some time today, and they may even be able to remove the drain tube from his chest. Mom would really like to be able to hold him with as few tubes and wires as possible. Please keep praying, this is going to be a long morning. There's hope at the end of this long wait.

J

3 comments:

Unknown said...: Strength to you, Jess and Tim. I can imagine how difficult it is to experience these things as a parent.
We're all rooting for Caleb over here and praying often.
I pray that today is filled with hope and perspective and that you are able to offer Caleb physical comfort with your embrace.
Rachel; June 25, 2010 at 10:23 AM
d said...: We are waiting and hoping with you. Em and Soph are anxious to hear the good news too. spot; June 25, 2010 at 1:03 PM
Elzinga Family said...: Thanks for your updates.
I am sure you are exhausted, but it is nice to know what to specifically pray for. We will continue to do so.
Wishing you much strength in these days of uncertainty.
Carolyn; June 25, 2010 at 3:53 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.